There are no life lessons that I learned through my 6+ years with cancer that could have prepared me for this last cancer recurrence.

In April 2025 I was paddle boat racing, working out at the gym and only 2 months later I started to run out of energy dragging myself around. and in July’s pet scan the tests showed that the cancer spread considerably. 

What followed were blood transfusions, a brief hospitalization at the Koch center’s hospital floor where I was the first person to get legionnaires disease, followed by a brief period at home and then back to the hospital. At the time of this writing, it’s been over 37 days with no discharge plan in sight. it feels like it’s all going downhill.

 

There’s a lot to say about everything that’s been happening, however I need to learn more about my coping skills  as my body is being is taken over by malignant lymph nodes but I’m trying to learn about living on an emotional roller coaster. 

 

I learned that I am not always mindful of my feelings. I erroneously think I have emotional intelligence, so when I was first diagnosed 6 1/2 years ago, I asked myself, am I ready to die? In retrospect, it was more of a philosophical question because with this recurrence, the same question asked now terrorized me. I always believed that when the time came I would not want to be resuscitated or intubated, but do I still believe that? I don’t want extreme measures to keep me alive, I don’t want to live if there is no quality of life, but then another part of me sneaks out of the confusing muddle and says, “you’re not finished yet.” This realization is confusing, I want to be able to clearly say yes or no but I guess end of life issues are not so clear. In fact it’s frightening.

Then there is the issue of patience, an essential when you are in the hospital. The nurses are dedicated multi-tasking marvels but that doesn’t make waiting any easier. From commodes  to  cancelled procedures due to other emergency cases, the waiting turns into angry frustration, but that doesn’t make the situation better.The frustration I feel makes me realize how helpless I am and I have never been helpless, a feeling that is really hard to adjust to

 

Frustration, anger, and helplessness merge together like a tornado with me at the center of it, which is overwhelming until I realize that is my learning opportunity, however I also realize that among all those feelings is a lack of trust which could be the crux of the matter.

 

Trust has been a lifelong issue. Waiting for my name to come up at MSK’s infusion center, in the back of my mind I am genuinely worried that I will be skipped over so even though I don’t mind waiting, I feel compelled to ask how many people are before me just so I can be reassured that my name is there.  Lack of trust makes life complicated but there have also been occasions where it has  also protected us.

 

The lack of trust seems to be related to the need for control, which is nonexistent in a hospital and in life in general. Earlier on in my hospitalization I needed a surgical procedure to remove fluid in my lungs. It kept getting cancelled due to emergencies which left me screaming with frustration. It was infuriating having my needs bypassed. “My cancer is spreading rapidly because the legionnaires disease – that you gave me – is preventing me from getting chemo!!  Isn’t that an emergency too?” The frustration was so immense, like a turtle, I  retreated into myself. I was numb. Thankfully my family advocated for me, but how many times do I have to experience this awful helplessness before realizing it’s time to change the dance?

 

So with the issue of developing a new coping mechanism, one of the ways I learned about trust was when I let male personal care techs wash my body. At first, I was uncomfortable and shy allowing a man to touch my private areas but out of necessity, I realized they are trained professionals also, and in truth they have often been the most gentle and thorough of techs. 

 

I began to realize that it’s all about trusting the process. Yes, sometimes we have to advocate for ourselves, but when I saw that I did all I could, I just let go of the tension and  centered on the fact that my procedure will get done – on their time, not mine. I surrendered. It felt euphoric, and surprisingly the calm I created was a way of being in charge of myself.  It doesn’t happen all the time, but trusting the process and being mindful of my feelings has helped me cope with this cancer rollercoaster.

I was 12 years old when Barbara Streisand’s song “People who need People” came out. It seemed to me that she was saying that needy people are actually lucky, and that baffled me because, for me, being needy was anything but! I felt inadequate and demoralized at all the obstacles I was facing with my vision issues and academic delays. Sure, I received the help I needed but I was always acutely aware of those who didn’t need the help that I did. I think getting past those obstacles put me on a path of independence and I became determined to be able to do “it” myself.

Now, over 60 years of being self-sufficient and willful, I feel proud of what I accomplished especially because that inadequate feeling I grew up with didn’t really go away, it just got covered up with accomplishments and it pops up unexpectedly when I go through difficult times. Like now.

My 6-year journey with angioimmunoblastic T-cell lymphoma has taken me through several treatments, remissions, and recurrences, the most recent recurrence much more debilitating than anything I ever experienced. Up until now I was able to endure the recurrences and remissions because I was strong enough to be able to function, learning life lessons and still being able to seek quality of life. I was getting better at enjoying remissions without the tension and awareness of waiting for that other shoe to drop. I secretly enjoyed friends and family telling me how they admire my strength, while I politely tell them they’d do the same.

But now I’m feeling weak and, as always, cancer takes away a lot but leaves lessons and insights behind for me to discover.

There are so many offers of assistance; all I need to do is ask. I hear offers of visits to distract me from my woes, and I hear different variations of “think positive” daily. I feel mixed about all of it. It’s easy to see their desire to help, their intentions come straight from the heart, but it’s often what they think I need. I remember once my elderly mother was knocked down by a bicycle rider and had to be taken to the hospital. My father rode in the ambulance with her and I met them at the emergency room shortly after. My mother was lying on the gurney waiting to be seen. My dad, so concerned, reached over and tried to re-arrange her broken arm. My mother winced silently but accepted his help. I said, as kindly as I could, “Dad, I don’t think that’s very helpful.”

“I know.”  he said with loving concern, “But I have to do something.” This memory helps me understand how hard it is to bear witness and be compassionate without trying to fix anything. It’s what the helper needs more than what the patient needs, but I’m also seeing that it is not a selfish need, it comes from love and compassion.

I’m discovering how hard it is for me to accept help, stemming back from being so needy as a child. It’s embarrassing. Recently, as I was struggling to get to the drug store to pick up my prescription, I ran into an angelic neighbor who helped me. I was both grateful and embarrassed with the realization that one of the lessons cancer has to teach me is to learn how to accept, with grace, the fact that my physical state is currently incapacitating and that just because I am currently needy, it doesn’t have anything to do with my old issue of feeling inadequate. A lot of unlearning is in order to help me move through this lesson and accept this newest cancer recurrence with grace. When I saw this as my newest lesson, I had a vision of me walking down a path, physically frail, but looking peaceful, smiling, because I was moving through this journey surrounded by acceptance, love and light.

In this current cancer recurrence I find myself so exhausted, and that listening and socializing is as much of an effort as any physical activity. At those moments, I find the quiet to be peaceful as I surrender onto the comfort of the sofa, listening to meditation music. It feels like I am in this cancer cocoon without thought or distraction: it gives me a sense of who I am without all the roles I play in life. But then my well-meaning friends and family make offers to come visit, take me out in order to distract me, and I see another lesson looming. Their offers come with their passion, and if I’m turning down their offers, it feels like I am doing something wrong. I should need people like the song says but it’s confusing because despite disliking my neediness, I have also always been a people pleaser, and sometimes I’m compelled to agree to give them what they want, despite my desire for solitude. I am beginning to see that it’s ok to want solitude and that my people pleasing ways goes against what I need. I’m pleasing others at my own expense, following an expectation that we should all need people.

This brings me back to the song, I don’t want to need people, but when someone sends me their love and prayers, it does feel good to know that I am in the hearts of many and it has nothing to do with neediness. It’s about love, compassion and a sense of belonging.

 

 

 

 

    “I’m going to pray for you, you will beat this, Marilyn, you are so strong, you will beat it, and you will be well. I guarantee it.” My most recent cancer recurrence upsets my dear friend, Molly.

     I listen with an interesting combination of irritation and sadness. She doesn’t know what I am feeling but she wants to make it better. She is reassured by her own sense of hope, and I think I am supposed to get on board, but I have an impulse to stomp away angrily, alone in my misery. I respect her spiritual beliefs, but I feel misunderstood, my emotions minimized.

     I thank her, hang up, and think about hope. It seems so simple to pray and then a miracle will happen. Her prayer makes her feel that she is doing something, that she is effective, and she is very loving however her prayers feel more like a wish, and I am beyond wishes and dreams.

    I can’t recall how many recurrences I have had so far, and this one is more uncomfortable than the rest. Each recurrence shatters my foundation and makes me feel conflicted about what to hope for. I have mixed feelings about hope.

     It’s not about happy endings with silver linings — I cannot breathe properly. I am tired. Should I hope for my inflamed lymph nodes to shrink? But they will grow back like they have done many times before in my 6-year cancer journey. Hope is supposed to feel good but the best I hope for is to get through a day with some amount of activity that does not exhaust me. Is that enough to sustain me? Hope inspires us to reach upward, but I am not sure what I am hoping for. It changes according to the chaos my body, and consequently my emotional state, is presenting me with.

     At a funeral once, I heard my niece’s son-in-law say after a beautiful eulogy, “Gracie, job well done.” I hope for those words to be said for me, but once, I also heard someone say, “Hope is not a plan.” It does not feel real for me to hope, like making a wish, and having it come true without some type of effort on my part.

Can you still have hope when you lack inspiration? I do not hope for good health; I hope for a meal that won’t make me sick. I picked an oracle card recently that called for me to seek happiness. That is as unrealistic as hope right now, and quite frankly, it’s a lot of pressure to feel hope, and to be happy especially when my body is achy, my appetite hampered by nausea and all I want to do is lay down. Isn’t there something a bit more moderate to hope for? And by the way, can happiness exist without hope?

     And where does faith fit in? I do believe in a higher power, but feeling so physically exhausted grounds me and makes it especially hard to think of a higher power when I am dragging my feet along the boardwalk while others are jogging and riding their bikes, and showing off their beautiful bodies.

     What happens to faith and where does faith fit in with hope? There is a certain predictability that comes with faith. I have faith in my willfulness. I trust that part of me, it has gotten me far in my life. I don’t have faith that Molly will understand my physical and emotional discomfort and just sit with me in this sadness without trying to fix it, but I do have faith in her love for me.

     I’m thinking we all like happy endings. Is hope supposed to be accompanied by good results? Is faith in a higher power supposed to mean that that God and other Divine Entities will make everything better? I don’t think it’s Their job to make it all better. Does that mean hope and faith are 2 baseless aspirations? I have faith that my spirit guides are looking after me, but life is still hard and at times, just too hard. Maybe my faith in their existence helps me feel less alone as I move along in this unpredictable cancer journey. Perhaps we think hope and faith are supposed to make things perfect and it doesn’t, instead it gives us strength to endure, learn and evolve.

     But what if we didn’t have hope and faith because life is just too hard? Is there a kind of hope and faith that doesn’t reach for the stars and instead more moderate, more in line with our difficulties, needs, and approach to life? I’m not looking for a miracle, I am looking for strength and acceptance and the ability to handle this invasive and deadly disease with grace. It feels more real to me to try to embrace hope and faith to be able to handle our obstacles with greater ease. And that is the difference, no miracles, just strength and endurance. Maybe what we hope for changes and faith is another way of trusting the process, and in the cycle of life.

I wrote this in February 2023, the opening chapter of my memoir, but given the current circumstances, it needs to be revisited.

I realize my lymph nodes are growing again, in the old familiar places at my groin, and in some new areas, at my neck. I keep touching them, feeling their size and shape, and I know I will be doing that all day because I know myself by now. I won’t be calming down any time soon. My oncologist says they are a concern when they are more than a centimeter and compares them to different kinds of beans, a pea, a lentil. I’m checking and feeling a Lima bean, and not just a pea but the whole pea pod.

A memory of my mother reminding me to eat my vegetables comes to mind, then the fear of what happens when we swallow a pit.

There’s a lentil under my arm and there was a Brazil nut on my neck, but it seemed to disappear which makes me think of the boy who cried wolf. My next oncology appointment wasn’t until 2 weeks so by the time I was able to show it to him and the clinical trial team, it was gone, but I felt oddly vindicated when it showed up on the next pet scan, however it was only a grain of rice.

Now I have an unappealing and ultimately life-threatening vegetable garden growing in various areas of my body and I am filled with anxious thoughts of a cancer recurrence and that occupies every thought throughout the day with dread and fear of what’s to come. I’m scared, angry, and sad all at the same time.

Present

Looking back, it seemed that eventually the “active” lymph nodes lost the war, calmed down and went away to wherever defeated lymph nodes retreat to. In the 2 1/2 years since that writing, I had a few scans with active lymph nodes appearing and disappearing, then 6 months of nothing. My clinical trial team called it CR (complete recovery). I felt like a star because I’ve been on this clinical trial the longest at MSK. A poster child. And I felt great. I joined a women’s dragon boat racing team for cancer survivors, went to the gym regularly and started to make travel plans again. I kept saying to myself and others, “for as long as this lasts, it’s great.” It didn’t seem to matter that the proverbial other shoe was looming somewhere just waiting to drop, because I thought I was filled with self-acceptance. I was just going to enjoy what I had when I had it. However, I was also reminded that it’s easy to find acceptance when things are going well.

Then around May or June of this year I felt a new pain, quite accidentally, at the nape of my neck, the bottom of my skull. I was doing an exercise and felt it when I tilted my neck back. Just like before, it disappeared by the time I had a pet scan and saw my oncologist, though new painful lymph nodes started to appear at the right side of my neck — one grew to the size of an apricot, with several blueberries scattered along my neck reaching to the top of my spine.

A pet scan and biopsy were recently completed and reading the pet scan report made me think that this is no longer a vegetable salad — it feels like a whole new meal! I’m trying hard to stay calm, but my lymph nodes are going crazy.

The clinical trial pills were attacking the deviant cells, and they responded by becoming annoyed popping up here and there in protest. It felt like they finally gave up, waved the white flag because for 6 months my pet scans were clear, and I was in another remission. But these little buggers didn’t give in at all. It was like they just hid out and developed a new plan. One said to the others, “Hey why are we just attacking different lymph nodes when there’s a whole body with different organs to discover? Let’s go check out the lungs.”

So, some went to the lungs, and some preferred staying outside the lungs, ready for an adventure. It feels like these new cells are the bad boys —they bring their buddies in droves, ready for a party.

In my initial cancer treatment, chemotherapy followed by stem cell transplant, I had angel experiences that supported me through the arduous ordeal, and I learned that “coincidences” are often messages from our guides to help us along in our life journeys.

So recently I sought the assistance of a coach to help me along on my spiritual path. Among other valuable lessons was an assignment she gave me: a daily chanting meditation by Sadhguru repeating over and over again, “I am not the body. I am not even the mind.” It helps the chanter achieve a higher level of consciousness and is meant to remind us that our bodies and minds are “temporary accumulations, not the core of one’s being.” I was doing the meditation almost daily, daydreaming through the whole thing, though theoretically I understood the message of this chant, it didn’t give me any new insight, but I kept at it anyway, you never know.

While practicing this new chant as well as other rituals, at the same time, cancer symptoms started to emerge once again, and as before I find myself becoming too preoccupied with what my body is doing, however, another part of me still tries to continue mediating — I don’t’ want to fall back into another cancer cloud but I also find myself questioning how I can say “I am not the body…” when my body is giving me so much trouble?  Then recently I heard the chant in my dream or a message about the chant along with an image of a monk, and I began to realize something about the chant and having cancer again. When I use the chant and other meditations, for those moments and a little bit beyond, I connect with my higher self and find blissful peace. If I keep at it, it helps me cope with whatever is going on in my body for a short while. I still daydream through the chant, but I’m catching myself more, and sometimes I fall asleep but being able to transcend whatever annoyance my body is experiencing helps.

So, is it a “coincidence” that I started studying with my coach just before this recurrence, and is it a coincidence that she gave me this chant when she did?

 

 

 

 

 Recently I was frantically speeding along mid-town Manhattan to meet my sister. Weaving through crowds like a maniac, a thought popped into my mind. When I was learning about narcissistic disorders in graduate school, I asked my therapist if that was my diagnosis. “No,” he said. “You’re just a run of the mill neurotic.” I guess having to ask that question validates his answer. A narcissistic person would never ask.

 

Everyone can have a diagnosis, but some are more interesting than others, like the narcissist. We all know of one: in fact, the narcissist will make sure we know who they are. My diagnosis is an adjustment disorder, which essentially means I’m always anxious. As a child, my cousins and I were doing the can-can together and when we kicked up our legs, my shoe flew off my foot, through the air and landed behind the stove. Why couldn’t that have been funny? Instead, I was scared! I lost my shoe! My cousin jokingly said they’d now have to cut off one foot which made me worry even more. Everyone thought it was funny except me. It’s still not funny. But narcissists don’t think that way. Even if they fail, it’s with a flair and another way to get immersed in an exciting drama.

 

Having cancer did not make me anxious, but what I went through to get diagnosed did. Reaching remission made me feel victorious, but the recurrence was like tumbling down a hill so I decided to see a therapist who diagnosed me with, can you guess? An adjustment disorder! This makes me laugh at the entire mental health system. Who wrote this stuff anyway? Did they get their ideas from the makers of Chutes and Ladders? Sorry? Are they suggesting that episodes of depression, anxiety, and anger are inappropriate reactions to having cancer not just return but to be a part of my life for as long as I live? If that’s the case, then it’s like blaming the victim.

 

But cancer and treatment are all consuming and make an adjustment disorder seem flimsy in comparison. It makes me realize that all those years of feeling inadequate didn’t make sense. Cancer is a sudden awakening that time is running out, so I better get busy. I realized that I was coping, achieving, and managing all along but I was feeling too inadequate to know it. What a waste of energy! I envy a narcissist’s ability to think big, however, I am adjusting to cancer with anxiety, strength, and humor, using all the skills I acquired during my lifetime. It’s like the 3rd act in a play, a culmination of all that I learned about surviving but this time with acceptance.

 

So, on that beautiful Saturday afternoon rushing to meet my sister, burning calories along the way, I finally realized that my can-can dance always had rhythm. I took a calming breath, and my anxiety melted away. I am comfortable with who I am.

 

 

 

 

Part 1: Last Man Standing

Having vision in one eye created a plethora of problems growing up. I was nearsighted, had academic issues, wore thick ugly glasses and in addition, my poor vision made me terrible at sports as my depth perception was impaired. It was a time of life when no one was able to warn me about this extra added problem that made me a liability on any team. I couldn’t catch a ball to save my life, and when a ball came my way, it felt safer just ducking, making gym class a calamity for me. When they broke up the class into teams, I was always last to be picked and often heard “Ha ha, you got Marilyn.” I tried all sorts of excuses to get out of gym, “I have my ‘friend’” or “I sprained my ankle” but nothing worked which resulted in me disliking competitive sports — if a team I was on lost, they’d blame me.

     I found sibling rivalry to be just as difficult. It is, in a way, another form of competition. My older sister and I were alike in some ways, we both loved the Beatles, but she was older, stronger, and smarter so when we fought, which was often, I never won. 

     As a result, I shied away from competition because there was a winner and a loser, and I didn’t want to add more to my already established loser status. A statement from a winning boxer sticks in my mind: he said that when he finally won the gold belt, he was a winner, the best boxer in the world, but now he had to fight to keep his title. That seems like way too much stress, and for me, an excellent reason to shy away from competition of any kind. I didn’t call attention to myself in class, so needless to say I wasn’t popular either, being on the fringe was safer.

     The hippy years came as a blessing for me because nonjudgmental attitudes along with “peace” and “love” were the popular phrases of the day, and most important, it didn’t matter that I couldn’t catch a ball or that I wasn’t popular because everyone was “cool.”

     It would seem from these examples that I am not a competitive person, but in some odd and uncomfortable way, competition is thriving within me. My sister and I get along better now, but I can’t help but notice I sometimes feel envious which makes me want to compare and compete. My husband and I both have health issues so in some odd funny way we compete for who is the sicker one. I’m never sure of what the prize is for that. When I am at the gym, I look at what people half my age are doing and make excuses for myself as to why I can’t do what they can. At social gatherings, I look to see who is wearing what, who looks nicer, so like it or not, I am competitive, which up until now still has a winner/loser quality.

    I never quite understand why running after a ball is such a popular sport. It’s on TV, in our local parks and stadiums. It’s a multi-billion-dollar business and a past time that helps people feel victorious. We want that winner feeling and we want to emulate it in all aspects of our lives. For so long I just avoided it until quite recently, at 72 years old, I joined a dragon boat racing team and began competing with other teams, which I’m pleased to say is providing me with a more expanded view of competition.

 

Part 2 …To Be Continued Next Month…

My mother had a circus-like ability to tell anyone their weight with spot on accuracy; it always seemed that she used it on me at my most vulnerable moments as growing up, I was overweight and no matter what size I was, I was always uncomfortable with my body. I must have gained and lost a whole person in those pre-cancer years. My mother would stare at my body in a creepy invasive manner and say, “What are you, 150 pounds?”

“Pretty cool trick mom.” I said, while biting into a delicious, dark chocolate, calorie-filled brownie,” defiantly rejecting my mother’s passive-aggressive comment. Adding to her criticism about my being overweight was her tendency to encourage all of us to keep eating the massive amounts of food and desserts she would put on the table.

I eventually accepted my body and so when I was shopping for a wedding gown my mother suggested, “Don’t you want to lose weight?”

“No, Mom. This is my body. Take it or leave it.”

After a pause, she said, “I’ll take it” and that was the last comment ever about my weight.

For years, I thought of my body simply as a vehicle to get around with until the arrival of cancer, treatment, recurrences, and remissions. The physical exhaustion, emotional stress, fear, and anxiety made me think of my body every day, even hourly. Cancer stopped everything and was all consuming.

After 5 years of a cancer rollercoaster, a reiki master told me at the end of our session, “Your body is fighting for survival.” I didn’t know what to do with her message, not even sure I wanted a body fighting for survival, but sometimes life has a way of offering us life lessons: her message eventually penetrated and my mission became to match my diminished emotional state with my body’s fight for survival. I wanted a new attitude.

MSK’s integrative medicine program has zoom classes appropriately called fitness for stronger bones, core strength and more. Taking these classes eventually led me to the Empire Dragon Boat Racing Team, where at 72 years old I am taking my body seriously for the first time.

The coach on the Empire Dragon team is a retired MSK nurse, who coaxes us to do our best, to get fit so we can win – in more ways than one. She is compassionate, knowledgeable, and has an endearing giggle. Her dedication to the team is infectious, and I am feeling stronger and more positive.

In addition to the exercise classes I joined a gym so I can be prepared for rowing with a team of strong, fabulous women — fellow cancer survivors. The gym however is filled with men and women who are young enough to be my grandchildren, so I often feel a bit out of place, especially when I see women in the dressing room posing in front of the mirror photographing themselves in sexy poses. I admire their unabashed vanity but at my age, I will take strength!

 

Dad has been gone for nearly 20 years, and I can say that I have a better relationship with him now than I ever did when he was alive.

 There were many chaotic years growing up, I left home at 18 and made my own way through life, giving him and my mother a lot of grey hairs, to say the least, but when my father was diagnosed with Alzheimer’s Disease he became an easier person to deal with because the mask of his tough guy persona melted away and what was left was a more gentle, funny man. The disease stripped away every part of him bit by bit and I often say that if he saw what had become of him, he would be horrified. I was relieved when the disease finally won because I hated seeing him so diminished. It was like I was feeling those feelings for him or even with him. I hated the lack of dignity he suffered with in those last months. Again, he would hate seeing himself that way, I am sure.

  In the last month of his life, he lost his speech, he was bed-bound, bed sores developed in multiples. He was in a nursing home. My mother was there every day, and I had come to pick her up later, spend time with Dad then take her home. I kept saying to him, “Dad, it’s ok, you can go, we will take care of mom.” But each day he would lie in bed, eyes closed as his breathing became more labored each day.

 A day before he died, when I went to see him and got off the elevator, I immediately heard what nurses call the “death rattle.” It is an accumulation of fluid in the airways which causes a frightening, awful, gurgling sound hard to hear, especially when it comes from a person you love — it occurs during the last phases of life. Dad was sweating with every breath, but he kept breathing, regardless of my encouragement to move on. He just was not listening. I sat near him and said, “Dad, I keep telling you that it is ok to go and here you are, still breathing. It is like you are trying to give me a message: Do not give up.” With that, my father, who had his eyes closed for weeks if not months, no longer spoke, and just lay in bed — I was not even sure he was conscious — but he winked at me! That changed everything. For the first time in my life, I experienced unconditional love. This warm feeling started at my heart and filled my whole body with a delicious, intoxicating, loving feeling. It was both a physical and emotional sensation that felt wonderful. It connected me to him in a way I never felt. I felt so gentle and loving toward him as I wiped the sweat off his brow for the rest of this visit. When I left, I thanked him for our moment together, told him that I loved him and later that night he passed.

His wink was a healing for me, and I suspected, for him too. Years of a turbulent relationship was patched up, and it connected me to him forever.

Thirty days after his passing, as is the Jewish custom, we went to the cemetery. I inherited my father’s car, and he loved rubber bands which he kept on the gear shift. I cleared them out when the car officially became mine. One of my sisters was in the passenger seat and when she got out of the car, there was sitting on the seat was a rubber band. It felt like he was thanking us for visiting him.

Rubber bands became his way of showing me he is still with me, because whenever I see a rubber band out of place, it is him. Sometimes I see them lying on the table in the lobby of my apartment building, on the floor and in the street. I have seen a few lying in a sideways eight, an infinity sign, and once on his birthday I found one in my coffee.

 It felt like the love that we found at his passing was a parting gift that changed everything. I felt more peaceful as a lot of the insecurities and sadness left over from childhood melted away. But it also connected me to my father eternally. It is different from the love I feel towards people in my life, it feels more spiritual. Seeing rubber bands is a reminder that I am loved. Quite the gift.

 None of us believed that our mother would survive her husband, our dad, for 12 years, but her strength and resilience surprised us all. She was never as happy as when he was around, but she did the best she could with what she had.

 She was a math maven and none of us ever thought to look in her checkbook for accuracy, until one day my brother pointed it out. From there her short-term memory loss was clearer to us: at the beginning she was good-natured about it, I suspect because she felt safe. I was around very often, and my sisters and brother visited regularly. We got her live-in help, so when she had forgotten it was ok as someone was looking after her and we all felt safe.

Once my husband and I were taking her to a play and on the way, she kept asking, “Where are we going?” I would answer, “We are going to see a play.” She kept asking, I kept answering. When we got out of the car, she was quiet and looked pensive. She finally realized she was repeating herself and in a thoughtful manner said, “You know, every moment is a new experience.” I love the wisdom and the truth of that statement that usually enlightened beings after years of meditation finally experienced, but for my mother all she had to do was lose her memory! Brilliant, however, as her memory loss progressed, she became frightened and sad.

My mother did not have Alzheimer’s Disease like Dad, as that affected his whole body. She had vascular dementia that affected mostly her short-term memory. She was grateful to have a live-in aide as her behavior was often childlike and cute. Once when her aide made dinner for us, Mom looked at me sheepishly as she hid the food she did not want to eat under her napkin. She was like a little girl hiding something from mommy. So funny.

Towards the end of her life my sisters and I went to Greece together and were visiting her parents’ place of birth, Ionania, when our brother called us to say she had been diagnosed with an aggressive form of Leukemia. The irony of his call when we were in the birthplace of her parents was not lost on us. We all agreed that at 95 she was not going to be treated, that we would get hospice services for her when it was time.

The end came very quickly, within a few months of her diagnosis. In addition to her memory loss there were at least two occasions that I know of where she saw her mother and our father, visions that felt very real to her. The first time, the aide called me immediately and by the time I got there my mother was silent and looked terribly upset. She knew she had leukemia, and she told the hospice social worker that she was ready to pass on, but on this occasion her distress was evident, and she had difficulty talking about it. I gently told her, “Mom, you are not losing your mind. I read somewhere that when people are close to the end of their life, they see people who had already passed on. They are watching over the people they love. Dad is watching over you. It is ok, Mom.” My mother looked at me, still silent but a bit less upset. Another time a day or two before her death the aide told me she heard my mother apologizing to her mother for not being there when she died, because she was in school, and another time she had a radiant smile reaching out to someone, who I’d guess was her husband, my dad.

On Thanksgiving Day, I stayed with her because she was rapidly declining. I called the hospice nurse who started her on morphine to help with her breathing. She was silent in those last couple of days, but when the nurse came and I was in the dining room talking to her, my mother called out to me, “Marilyn, I love you with all my heart.” Though I knew she loved me, I never heard her say it until that day, and years later it still brings tears to remember this special moment. The next day the family came over to say their goodbyes. One of my nieces told mom she was pregnant, one of my sisters promised her that we would all stay together as a family and my mother listened silently, taking it all in.

The following day, the aide called me, and I raced over there to be with her when she breathed her last breath. Shortly after that happened, we heard a door slam shut, maybe it was the compactor room door next to her apartment, and maybe it was her leaving because her body was already showing signs of being empty: Her face was expressionless.

On the last day of Shiva, I was driving over to my brother’s house like I have done many times before with my mother in the back seat except this time, I was alone. Suddenly I felt my mother’s presence sitting in the back seat. I had to resist the urge to turn around to see if she was there. Instead, I felt her presence, she was happy, and I was happy for her, and with her.

The passing of both parents was sad, but I received their parting gift of love-eternal. It comforted me to know I was able to be there for them in their last hours. That alone helped me see myself with kinder eyes; part of their gift was self-love.

 I see rubber bands as my father’s message of love, and I wear my mother’s wedding ring, which is a constant reminder that not only is love eternal, but their presence in my life continues to bring joy.

I recently read that new year resolutions began with Julius Cesar who named January to be Janus, the god of doorways and new beginnings, shifting from one state to another. The article continues to say that the new year resolutions we are more familiar with, to exercise more and diet, come from the Protestant strong work ethic, “Where religious consistency and restraint from pleasure exist.”

I like the image of a doorway to new beginnings, for me it speaks to seeking a different frame of mind, less task oriented and more about establishing a different outlook. This different outlook is about having cancer in my life for 5 1/2 years, from diagnosis and treatment, to having several remissions and recurrences. It is not going away and so the new beginning I seek is about acceptance.

I was in a cancer support group recently where I raged at cancer, while someone else who has been living with cancer twice as long as I have, spoke about acceptance. When I heard that, it felt like surrender, and I just wasn’t ready to give up anger because it has tremendous energy which is both invigorating and frightening, though admittedly I don’t really know what to do with all that energy. I repressed anger all my life, and now that it flows so freely, I realize I don’t really understand this confusing emotion. Is it useful? Why are we all so uncomfortable with anger?

I feel uneasy when I lose my temper but at the same time, I feel satisfaction from the indignant, self-righteous feeling, maybe because there is something unexplainably comical about it. I was wronged by the crappy bugger that keeps winning rounds. I have a right to be angry, but then what? What do I do with the energy anger produces? I could distract myself and exercise or clean out some jammed up closets, but the reason the anger is there doesn’t go away, and the best that can be done is trying to control lymphoma with the clinical trial I am currently on. At the time of this writing, it seems that I won the last round because I am in remission for the 3rd time. I realize however crazy this sounds, I am angry at being in remission because it is yet another change that I have to get used to.

I would like to be as happy about it as other people in my life are when I tell them, but I know the fight is not over. I just went through a passage of time where I had low level lymphoma, and in the battling rink I suppose it was a stalemate, but now with remission? I won a round, but at this point in time, I know more about life with cancer than I do without it. Cancer is the primary event and everything else takes second place. It’s a valid reason for not being so productive, because the side effects are exhausting. But I am in remission after all, so maybe I could do more than thrive, however the plethora of side effects always accompany me on this complicated life journey, so remission is not the joyful state that I’d like it to be.

But back to this doorway of new beginnings: I want this new beginning, but cancer has become part of my identity. How do I move forward with all my baggage and make a shift from one state of mind to another? How do I accept cancer in my life? Do I make friends with it? It’s already like an unwanted guest that doesn’t leave. How can I live peacefully with that?

The double edge sword, or balance comes to mind when I’m looking for answers. Yes, there is anger, but there is also calm, especially on days when physical symptoms subside, and I feel almost normal. On those days I love being physically active.

Timing is everything; as I am putting together this essay, it was so fitting to see a Facebook message from Suleika Jaouad, a cancer survivor who has developed a successful writing career centering on her cancer battle. She wrote, “Our forever work is to hold the brutal and beautiful in the same palm.” This resonates and is exactly what I am trying to do.

Sometimes when the anger just pours out of me, and luckily for both of us, my husband is a pretty patient guy who also has a hearing problem. I feel a bit of relief after, as the energy originally focused on yelling, blaming, and demanding, eventually subsides which makes me wonder, who was that person? The energy it creates sometimes sparks a creative flow.

After having a bout of stomach upset or relief from skin issues, I feel a delightful peaceful state of mind, and I enjoy the calm that overcomes me for however long it lasts.

I am finding that I actually like anger; it makes me feel more real; I no longer relate to the “good girl” image I was raised with, but I do, however, need to find a safer way to express anger. So, in this new year I will try to walk through the door of new beginnings with mindfulness. I’m learning that whatever obstacles I experience will eventually pass, darkness and light co-exist.

I’ll try to make the best of whatever comes my way, good or bad, however long it lasts, and I will also remember something an old dearly departed friend once told me: everything is grist for the mill.

When I was growing up amusement rides would come around to our neighborhood. My favorite was the half-moon, a giant half circle with rows of benches inside, perched on a truck. It would swing back and forth, higher, and higher. The top row was the most challenging. One time when I was lucky enough to get a top row seat, the half-moon swung and when it was as high as it could go, my glasses fell off — sadly, that was the last time I went on that ride.

But no matter which ride we went on there was always a prize at the end. My favorite was red wax lips which were chewable once we finished showing off our big beautiful shiny red lips that filled up most of our faces. We would prance around feeling glamorous.

Those big wax lips pop back into my mind, most often when I watch the news and see an attractive newswoman with unnaturally large lips, lips that do not fit her face any better than then the big wax ones fit ours, yet we all thought it was beautiful. After the absurdity of big wax lips, my next thought is what is wrong with natural aging?

There are so many products to support this fountain of youth which led me to wonder about its’ origins. I believe it started with Ponce de Leon, an explorer searching for the Fountain of Youth in Florida, of all places, the home of millions of senior citizens. A Taino Indian legend places the fountain in Bimini, now Florida, and would “restore youth to those who bathed in their waters.” However, I am thinking that it is all a big misunderstanding that got way out of hand, a misnomer that everyone bought into and prospers from, that consumers were brainwashed to believe which allowed it to blow up into a billion-dollar industry. I am thinking it started when missionaries tried to convert anyone who would listen, by speaking about the teachings of Jesus. They might have spoken about how the fountain of youth is found “in the grace of God.” Jesus said, “But the water that I shall give him shall be in him a well of living water springing up into eternal life.” I do not think he meant it literally, but as humans we tend to be concrete thinkers, especially with misunderstandings that occur when language barriers exist, which I’m guessing happened often.

Those listening to the missionaries might have looked at each other, shrugged their shoulders, with confused looks and asked, “Do you know what they are talking about?

“Maybe something about water springing up.”

“Oh, I’d like to see that.”

“Yeah, I think they said it makes you young again.”

“No, I think that you live forever.”

“I wouldn’t mind living forever if I could stay young.”

“What are you worried about? You are only 33.”

“You’re never too young to start worrying.”

The Taino Indians and everyone else thereafter reconfigured His words into a literal fountain which evolved into youth restoring products.

But I digress. TV personalities are our role models and now younger generations have TikTok. There is a clothing store in the mall that is called Forever Young which I refuse to go into on principle because being young again is the last thing I want. I worry that when we put so much focus on staying youthful, we are missing any benefits that may come with aging but gets overlooked because only youth is valued.

There is so much focus on Botox and collagen to remove wrinkles. I was speaking to a young woman, probably in her late 20’s who mentioned a friend her age was getting her first “preventive Botox shot.” Neither of us had a clue as to what that meant, but I hear people lamenting, “Oh no, I’m getting old,” and the next thing, they are immediately making so called beauty appointments.

Then there is plastic surgery. There is a woman I know, a friend of a friend I have known for many years and see maybe once or twice a year. When I first met her, I thought she was beautiful, but as the years went by her lips got larger, the skin on her face got tighter, and miraculously her breasts got larger. To me, her new look is similar to that of a mannequin, and I secretly hope she will stop getting plastic surgery because I keep picturing her eventually looking like Jocelyn Wildenstein, better known as Catwoman, the woman who admits to have developed a “taste for cosmetic enhancements.”

I am saddened that resistance to aging goes further than physical appearance, and that we miss the gifts of aging. Yes, I do believe there are gifts and a certain wisdom that comes with age. Now that I am in my 70’s I see a wiser, more self-accepting person than I was in my 20’s. My interests now evolve around self-growth, spirituality, and creativity whereas in my 20’s it was getting high and going to concerts in between trying to pave a professional path. I can now breathe a sigh of relief and enjoy the life I created, be proud of my accomplishments, smile forgivingly at my mistakes and admire some of my role models, Hellen Mirren and Meryl Streep. They are on the top of my list because they appear to be committed to aging gracefully. Neither of the women had cosmetic enhancements, which I admire because their soft loose skin and lines in their faces make them look more beautiful and speak to their bold life journeys. To me their natural looks symbolize strength, resilience, self-acceptance and lives well-lived.

Some years ago, my husband and I learned an important life lesson at a winter clearance sale. I went with him to find him a winter coat. He tried on a leather bomber jacket and before I can respond, a man came out of the blue, looked at him and said, “No. A man your age needs something more distinguished.” He rifled through the jackets and picked out something else. “Here try this on.” Obediently and stunned by this man’s sudden appearance and bold direction, my husband tried it on, and we were all immediately pleased by this leather jacket with a nice collar, button down that went just past his hips. He looked so handsome in it. When my husband turned to thank this wise stranger, he was gone. Shortly after, at the cash register my husband turned to me thoughtfully and said, “You know, I think that man was my muse.” Looking distinguished instead of looking younger, what a life lesson!

But this resistance to aging speaks to a larger issue. As a society we have little tolerance for old people, and especially old, sick people. I think there are many people who cannot distinguish between the two. I do not want to talk politics, but President Biden keeps coming into my head when I think about aging. Because his gait is slow, he speaks in a low voice and at times it takes him a while to get to his point, rumors circulated that he was too old and senile. I do not know the specifics of his mental state, but I do know that as we age, our processing is slower. For example, turning on the gas range, “Which way is high? Oh, of course. What was I thinking? It is this way.” It is the normal course of aging, sadly slower but not to be confused with dementia where thought processes are impaired, “What is this dial for?” Slowness is not necessarily impaired, but we are impatient, and saddened by the loss of youth, and easily dismiss aging people.

Someone in one of my caregiver support groups spoke about how now that his wife is so ill their friends come by less and less. He said, “Who wants to deal with a sick bird?” The sadness of this rejection pierces my heart because each person still has value.

My mother had dementia and one day when we were all visiting, out of the blue she started talking about Frank Sinatra concerts where they’d hear an ambulance siren go off before his entrance because he was so skinny. Where did that come from? It hardly mattered because we would never be able to figure it out anyway, but it was pleasant and funny, and we all shared a moment together. When I visited a memory unit in an assisted living facility as part of my hospice work there was a woman who lost her speech so when I said hello to her, she looked up at me and laughed, then I laughed back, we laughed with each other and that became our connection. If I passed by without acknowledging her, she would point at me and laugh. It was a warm lovely precious relationship. Sure, it is not the way we want life to be but there are gems everywhere if we open our eyes, our hearts, and look for small special moments without judgement.

 

 I’m so tired of cancer. It’s been 5 years and still counting. I expected to be treated, cured and to go back to life as usual but instead, as my body fights for wellness, my emotions, mind and spirit whines like a baby, “Woe is me” until I got my second steroid shot for the nerve damage in my left hand due to shingles and learned a valuable lesson that changed the way I look at my life .

        I finished chemotherapy followed by stem cell transplant in October 2020. As stem cell transplant leaves the patient with all new blood, like a baby, one year after the transplant, I had to get all my immunization shots again. Along with the long list, a couple of other shots were added including the two shingles shots, for all that was worth.

     About 4 months later, I began to get a piercing pain in my left hand, which baffled me and a few days later red blisters started to appear, like polka dots all up and down my arm and hand. I went to my internist who diagnosed it as shingles, which baffled me even more! “But how could that be? I got the shingles shots!”

     The treatment included one medication for a week, and was followed by gabapentin for the nerve damage, which lasted long after the shingles blisters were gone. Gabapentin made me light headed; I fell and fractured my left shoulder. I was a mess, but physical and occupational therapy helped me regain most of my strength but my stiff  hard-to-move fingers were still a problem. The occupational therapist recommended that I see an orthopedic doctor. 

     Between an endless amount of time with all that is involved with cancer, a fractured shoulder, and shingles, I needed something to make it all go away with a little more speed. The Orthopedist was very obliging with the suggestion that a steroid shot will alleviate the stiffness and increase mobility. I wished it could also relieve a lot of other maladies, physical and emotional.

     The shot worked well, and I was able to use my left hand easily for about 2 years, up until about a month ago when my middle and ring finger started to get stuck every time I used my hand. Sometimes I’d have to move them back into place manually with my right hand, so I decided life is just too exhausting with cancer, remission, recurrence, clinical trial, remission and recurrence all over again. If a quick fix was available for my hand, for my life, I wanted it, deserved it and made another appointment.

     My orthopedist probably didn’t know or remember my medical history of T-cell lymphoma, and that it is not going away. Nor would he know that my clinical trial pill is not working as effectively as it was when I began so where I’d initially give the trial a of rating it an A+  because it put me back in remission for a while, now I’d have to rate it a C-, because I now have low level lymphoma which is still being managed with the clinical trial pill. I don’t know if and when I’ll have to rate it with an F.

    So I went back to my orthopedist for my second steroid shot. I was sitting in a small brightly lit room on a metal chair next to the metal desk with the doctor, mask in place, looking at me with warm friendly eyes. 

     “So, the first shot worked for two years, and I can certainly give you another shot which will hopefully help for another two years, but it is also my obligation to tell you about a simple surgery on your hand that will alleviate the problem permanently.” He went on to describe the procedure.

      Another quick fix was all I needed because with cancer returning, a clinical trial that is slowly waning and at 72, so am I, a permanent solution for my hand didn’t carry much weight. I was unimpressed, and felt like a piece of a puzzle in the wrong box.

     “No thanks. Everything in my life, including my life, is temporary. I’ll just take the shot.” He looked surprised so I added, “I have T-cell lymphoma. I’m on a clinical trial that’s not working as well as it used to. Temporary is what my life is all about right now.”

     He gave me the shot and as I walked out my hand tingled uncomfortably from the steroid making it’s way around my hand but I knew that it would go away soon. Everything is temporary. 

     I surprised myself with the matter-of-fact way I thought about temporary, the acceptance and comfort level I experienced as I said it. When and how did that happen? I realized that somehow I quietly slid into the world of ‘temporary,’ that I am in the third-third of my life, I don’t know how many innings are left, and that I have more years behind me than in front of me, something I often say when I listen to the news these days, but now it’s said with acceptance, comfort, and with a peaceful feeling. 

     Buddhist studies taught me  about “non-permanence” but  until now, it was only something I thought about. I spent my whole life building a solid foundation — a career, a life partner, a home. Cancer changed all that because the fear of dying made me look at life differently — I thought I was going to lose everything I built, but then I started to look at the present, how felt, how I coped, who was there for me, and my life in general. I was not looking at the past or the future, just the present, another lesson from Buddhist studies.  That brought me to the realization that everything constantly changes, like the seasons, so that now being offered a permanent solution for my hand seemed ludicrous. 

     I realize that I feel accepting of the transition from establishing my life, to sitting back, feeling ok with who I am and with whatever the future holds. I still have things I want to do but my motives are different. I still want to travel and enjoy the company of my family and friends. I want to continue to find peace, meaning, and life purpose which occurs when I am in nature, or when I spend quiet moments in meditation, writing and becoming aware of an existence beyond entertaining activities. I feel loving towards myself especially when I remember my mistakes and regrets but this time with forgiveness, understanding, and love.

     Even though I feel changes in my body, mind, and emotions, it also feels like I am on a plateau, which I try to take comfort in for however long it lasts, until I reach the next one. I am becoming accustomed to the fact that nothing lasts forever, not the cancer treatment, the clinical trial pill or my life. I went from building a life to knowing that there will be a final curtain call someday. The idea of constant change is suddenly peaceful. 

     To challenge the comfort that impermanence brings is a continued need for earthly things. I just spent lots of money at BJ’s, the home of bulk purchases and bought Q-tips, a package of 1,750. I already have about 200 from my last purchase which makes me think of my parents, the original bulk shoppers long before there was a BJ’s. My father built shelves in their basement and they filled every inch of it with cans of food — I mostly remember cans of baked beans and tuna fish. They also had a freezer filled to the brim with neatly packaged, dated meat. Having more products than actually needed seems to bring comfort, still needed along with the concept of temporary. So with the 200 Q-tips from the last purchase and the 1,750 I just bought I figure I have enough for about 5 years. I’m curious to know if the Q-tips will outlive me? Or the other way around?  

     So a permanent solution to the problem with my hand? It doesn’t mean much to me today, because everything is temporary except my Q-tips which may last long after I am gone.

 

I’ve been having a difficult time meditating lately, my mind wanders off to a thousand different directions or I’ll fall asleep  and when the meditation is over I realize that I didn’t hear anything the instructor said, except that intruding thoughts are natural, don’t judge, just observe and let it pass. I keep trying. Sometimes the guided meditations have too many words to listen to and I will try different music, chanting and crystal bowl healing music, looking outward for the way to inner peace.

There is one meditation I like about connecting to my spirit guides, When I have trouble sleeping, I like listening to it because the progressive relaxation she goes through puts me to sleep. If I wake up too early sometimes it will put me back to sleep but if I want to pay attention, I need to sit up straight in what I think of as my meditation chair. That is what I did this morning. The instructor says that messages can come in any form: feelings, visions, symbols. I keep waiting for a voice to talk to me directly but so far that has not happened. This morning however, I received a sign. I saw a pelican. It was just sitting still but it was unmistakable. At the time I did not know what it meant but the image stayed with me. I was still distracted by intruding thoughts, but this meditation was a bit more satisfying than others. When I am not feeling well it is harder to meditate, when I am feeling sad, disheartened and somewhat depressed, it’s also hard. So today? I felt somewhere in between, and the pelican stayed in my mind’s eye long after the meditation.

An hour or so later, I was still wondering why I saw a pelican so I went on line and found birdsandtrees.net, their first words were, “Isn’t it fascinating how spirituality often intertwines with nature’s creatures?” they go on to say that, “…when a pelican crosses your path (can that include seeing a vision of a pelican?), it can symbolize triumph over obstacles.” The article goes on to say that pelicans live on both land and water so symbolically pelicans represent an ability to embrace change and find different ways to thrive. When we see pelicans, the article states, “It reminds us that we have to power to overcome challenges.” Just as the pelican soars through the sky, we too can “rise above any difficulties and find renewed strength.”

I am grateful to my spirit guides for the image and inspiration that my pelican represents, it excites me because despite my distraction I am having profound meditation experiences. I am also inspired by the meaning behind the pelican. I have been writing about my resilience and I recognize it as an attribute that gets me through this emotional roller coaster cancer experience with all its highs and lows, but I still fight frustration, discouragement, and the desire for life to be over so I can move past this experience and feel free. I do not always know how to balance the two opposing feelings, but as time moves forward, I am understanding at a deeper level that I am not dying any time soon, so this balance of strength vs resistance is a battle that I am getting accustomed to. But regarding my pelican, I remember a recent trip to Florida walking along the water on a pier with fishermen and pedestrians. Sitting near the fishermen were two pelicans sitting as still as statues, undaunted by all the passerby’s. It seemed like they were waiting for the fishermen to drop their bait so they can have a meal.

So now I am thinking that pelicans not only soar through the air and adapt to land and water, but they also sit and rest and wait especially because they saw an opportunity for an easy way to obtain a meal.

There are lessons to be learned here. When I think about my struggle with resilience and resistance, I see how impatient I am to conquer this obstacle as soon as possible, but when I see any bird flying through the air on a windy day, they are facing resistance but persevering. I am learning that it is all a process.

 

If interested, the meditation I spoke about is by Pura Rasa, called “Connect with Spirit Guides” found on Insight Timer.

I remember in group therapy so many years ago we were talking about procrastination and that there always seemed to be good reasons to delay working toward our goals, there was always plenty of time. I used to think I would someday start my private practice, but lifelong insecurities got in the way and hid behind the global nondescript word, procrastination. I think about this now because in a different way I am doing the same thing. When I was first diagnosed with T-cell Lymphoma in March 2020, it felt like life was being snatched away from me with fervor and that I had to use that same energy to make the rest of my life one that I can be proud of — when I felt better. I was certain that when I was well, I would fill my time with worthwhile goals, though I just didn’t exactly know what, but when I was feeling better, I’d work on it. Cancer came at the same time as the pandemic so everything I did before cancer ended. My hospice social work, the groups I ran for senior citizens, my spiritual studies, they all ended. I didn’t think about the tremendous task of rebuilding a life then, I was too busy trying to get through cancer treatment, but I was sure this time it would be different, when I felt better.

When treatment was over, I wanted to travel but I realized that my fear and anxiety was now targeting my limited physical energy and ongoing stomach issues. I felt uneasy leaving the security of home where everything I needed was there, just in case. My doctor and nurses told me I could take all my stomach meds with me, I could rest when needed, knew what food to avoid, so there was no reason not to travel, but my fear held me back anyway. It frightened me to think of not feeling well in an unfamiliar place, so I thought I’d wait till I felt better. In addition, I understand that moving out from under the cancer cloud was and is still not easy. It’s hard not to think about the possibility of cancer coming back so whenever there is a twitch or an itch the fear mounts to unmeasurable proportions and that is paralyzing. And, by the way, my fears were founded as they did come back.

Eventually I accepted the fact that I wasn’t ready to travel, though I was ready to make positive changes in my life but sadly didn’t know how to begin or what I wanted to do. I had to re-create my life which I found frustrating, and the aimlessness was demoralizing. It was too hard to start over and I just wanted life to be finished. I thought I’d wait till life was over to find peace and move to the great beyond where I will find all that I am looking for, whatever that is, which as I write this, sounds like another elaborate form of procrastination. But when I pay attention to my body, I realize that it is doing better than my frame of mind. At the time of this writing my body is still fighting for survival, but mixed emotions continue. I realize that because I’m frustrated and don’t want or feel able to make the effort, I want life to be finished, but life will NOT end just because I’m frustrated. If my body is still fighting for survival, shouldn’t that have an impact on my frame of mind? Realizing this, soon after a thought popped into my head: this is my mission. It’s about facing my frustration, the conflict of mixed emotions that come with having to start over, and resisting change. The mission is learning how to move through the resistance and not let it take over. The goal is to feel the thrill of having accomplished something difficult — the peace in regaining balance with the opposing forces that battle inside me and the peace that comes with successfully battling my inner demons like Hercules in the Strength card. All that being said, I still have resistance in moving forward with my life.

Perhaps I’d be more successful if I were more compassionate with myself.

In “The Art of War,” Sun Tzu states, “In the midst of chaos, there is also opportunity.” I am waiting passively for “the dust to settle” but perhaps it’s like “Waiting for Godot.” I’m slowly understanding at a visceral level, that I’m going to be here for a while, that there is still gas in my tank, and I am not finished living. This brings me to my next thought: what are my dreams, my desires? As I’m thinking about this, I had a dream. In my dream there was a woman laughing, and enjoying the moment as she was reading something she wrote to her audience. Though I don’t know what she was reading, my take-away was that instead of waiting for the anxiety to subside, or the timing to be right – all tools of procrastination with an underlying fear that propels this continuous cycle of paralysis. I should instead face the very obstacles that scare me with compassion and humor. Not to dismiss anything, but maybe I need to lighten up. Fear and anxiety are not helpful, they are like a door slamming shut incarcerating possibility. Behind this barrier, there is a part of me that is excited to share her wisdom, humor, strength, and desire to succeed but doing it lovingly is more encouraging.

All of this sounds wise and it’s all true. I know all the steps to fulfillment, it makes perfect sense, however I am still feeling resistant to change and I know that I’m not ready to follow my own advice, especially on days when I don’t feel well. But I continue to write because it helps me think and explore my thoughts and feelings and also because I think I’m more comfortable working toward something than actually having it. Ralph Waldo Emerson said, “It’s not the destination, it’s the journey.” So maybe I’m doing better than I think I am and that I should just keep writing.

 

I remember in group therapy so many years ago we were talking about procrastination and that there always seemed to be good reasons to delay working toward our goals, there was always plenty of time. I used to think I would someday start my private practice, but lifelong insecurities got in the way and hid behind the global nondescript word, procrastination. I think about this now because in a different way I am doing the same thing. When I was first diagnosed with T-cell Lymphoma in March 2020, it felt like life was being snatched away from me with fervor and that I had to use that same energy to make the rest of my life one that I can be proud of — when I felt better. I was certain that when I was well, I would fill my time with worthwhile goals, though I just didn’t exactly know what, but when I was feeling better, I’d work on it. Cancer came at the same time as the pandemic so everything I did before cancer ended. My hospice social work, the groups I ran for senior citizens, my spiritual studies, they all ended. I didn’t think about the tremendous task of rebuilding a life then, I was too busy trying to get through cancer treatment, but I was sure this time it would be different, when I felt better.

When treatment was over, I wanted to travel but I realized that my fear and anxiety was now targeting my limited physical energy and ongoing stomach issues. I felt uneasy leaving the security of home where everything I needed was there, just in case. My doctor and nurses told me I could take all my stomach meds with me, I could rest when needed, knew what food to avoid, so there was no reason not to travel, but my fear held me back anyway. It frightened me to think of not feeling well in an unfamiliar place, so I thought I’d wait till I felt better. In addition, I understand that moving out from under the cancer cloud was and is still not easy. It’s hard not to think about the possibility of cancer coming back so whenever there is a twitch or an itch the fear mounts to unmeasurable proportions and that is paralyzing. And, by the way, my fears were founded as they did come back.

Eventually I accepted the fact that I wasn’t ready to travel, though I was ready to make positive changes in my life but sadly didn’t know how to begin or what I wanted to do. I had to re-create my life which I found frustrating, and the aimlessness was demoralizing. It was too hard to start over and I just wanted life to be finished. I thought I’d wait till life was over to find peace and move to the great beyond where I will find all that I am looking for, whatever that is, which as I write this, sounds like another elaborate form of procrastination. But when I pay attention to my body, I realize that it is doing better than my frame of mind. At the time of this writing my body is still fighting for survival, but mixed emotions continue. I realize that because I’m frustrated and don’t want or feel able to make the effort, I want life to be finished, but life will NOT end just because I’m frustrated. If my body is still fighting for survival, shouldn’t that have an impact on my frame of mind? Realizing this, soon after a thought popped into my head: this is my mission. It’s about facing my frustration, the conflict of mixed emotions that come with having to start over, and resisting change. The mission is learning how to move through the resistance and not let it take over. The goal is to feel the thrill of having accomplished something difficult — the peace in regaining balance with the opposing forces that battle inside me and the peace that comes with successfully battling my inner demons like Hercules in the Strength card. All that being said, I still have resistance in moving forward with my life.

Perhaps I’d be more successful if I were more compassionate with myself.

In “The Art of War,” Sun Tzu states, “In the midst of chaos, there is also opportunity.” I am waiting passively for “the dust to settle” but perhaps it’s like “Waiting for Godot.” I’m slowly understanding at a visceral level, that I’m going to be here for a while, that there is still gas in my tank, and I am not finished living. This brings me to my next thought: what are my dreams, my desires? As I’m thinking about this, I had a dream. In my dream there was a woman laughing, and enjoying the moment as she was reading something she wrote to her audience. Though I don’t know what she was reading, my take-away was that instead of waiting for the anxiety to subside, or the timing to be right – all tools of procrastination with an underlying fear that propels this continuous cycle of paralysis. I should instead face the very obstacles that scare me with compassion and humor. Not to dismiss anything, but maybe I need to lighten up. Fear and anxiety are not helpful, they are like a door slamming shut incarcerating possibility. Behind this barrier, there is a part of me that is excited to share her wisdom, humor, strength, and desire to succeed but doing it lovingly is more encouraging.

All of this sounds wise and it’s all true. I know all the steps to fulfillment, it makes perfect sense, however I am still feeling resistant to change and I know that I’m not ready to follow my own advice, especially on days when I don’t feel well. But I continue to write because it helps me think and explore my thoughts and feelings and also because I think I’m more comfortable working toward something than actually having it. Ralph Waldo Emerson said, “It’s not the destination, it’s the journey.” So maybe I’m doing better than I think I am and that I should just keep writing.

 

I am much too neurotic to tell out and out lies but there are lies of omission that I think is sometimes acceptable. I do not see it as a lie necessarily, it is just that sometimes some things feel better when they are omitted. Like when someone asks, “How are you?” I will say fine even though I feel like crap because they are just being polite — it is part of a greeting. It is better than “What’s happening?” because I always feel the urge to think of the things I have been doing and report back and if I have not been doing much, I do not know what to say that will not make me feel inadequate. So, I guess “How are you?” is an improvement but producing the answer is tricky.

 

I have been dealing with cancer on several distinct levels for nearly 6 years now. It has become part of my identity so when people ask how I am feeling, I have learned to detect what their real intention is in asking. When I see my sister, I will usually tell her I am fine because I know she does not like to hear about sickness. But I am close to her so not telling her how I really feel seems like a lie of omission, but it is for her benefit, not mine. I do not want to make her uncomfortable because then I will be uncomfortable so we will talk about the news, the rest of our family and what we have been doing. The lie of omission, however, sits with me in an uncomfortable way — it creates tension because I end up acting more cheerful than I really feel. I then feel the need to reach out to my cancer buddies because we talk freely, sharing our symptoms and fears. It is cathartic for all of us.

 

Then there are people who want to hear facts about tests, procedures, and my symptoms: it is not just because they care about me, it is also because they want to become a cancer expert and tell my story to their other friends. I am mixed about lies of omission with these people. If I am feeling needy, I won’t care and tell all but sometimes their agenda is a little too obvious  and so I become withholding because I don’t want my issues to enable them to be the center of attention in another social circle so I’ll say, “I’m doing well, all things considered.” Now that is not really a lie of omission, but it is not the whole truth either. Is minimizing facts a lie?

 

Along the same vein are those who want to be the helpful therapist and will encourage me to pour my heart out only to hear advice that I never asked for nor did I want to hear. All I want is empathy, sympathy and/or an attentive ear, but the advice given, “get a punching bag,” or “your symptoms are probably allergies” serve the ego of the person giving advice and totally misses the mark on what I need. On those occasions I become resistant and annoyed but, again, they mean well. I do not always know how to approach advice I do not want to hear but if my well-wishers know anything about me, they should know I do not like unsolicited advice. I always try handling problematic issues by myself first so perhaps I am disappointed because they are not thinking of me as much as they are working at serving their own egos.

 

Some people who ask, seem to me to be fragile souls, and want an opportunity to tell their story but they do not know how to start so they start with, “How are you?” They are impatient for me to get my story done so they can start telling theirs. When I notice their impatience, I will tell a lie of omission and say, “I’m ok for now, but what about you?” Thats all I need to say.

 

So, lies of omission serve a purpose, however I get disappointed in myself when I use them because I would like to think I am more assertive than I really am. They are, however, helpful in getting out of situations that make me feel awkward, but I only hope I am not using lies of omission on myself.

 

 

 

 

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I’m thinking that the value of sadness is under-rated and that I can learn something from just letting it flow instead of pushing it back down the rabbit hole. Once I wallow long enough, how do I know when I’m finished wallowing? I think at first that it feels indulgent but surprisingly satisfying. Then the drama sets in, and I enjoy – well almost – the sadness because it is like a comforting cloak that I wrap around myself. Like the early Hollywood actor, Greta Garbo, “I want to be alone!” Sadness, or heavy heartedness gives me an identity – a reason for being, as if just being isn’t good enough. I seem to need to add a bit of drama – overly sad, totally distraught – I’m not just plainly me. Sadness feels satisfying in its’ awfulness. It gives me a new understanding of heartache and the dark night of the soul which generally lasts longer than one dark night.

 

This gloriously melodramatic feeling comes on when I feel inadequate. Vision issues contributed to learning obstacles which made me feel “less than” with my peers thus contributing to a fear of exposing my lack of knowledge so when I am unsuccessful in escaping a debate or a theoretical discussion and I can’t explain myself clearly enough because I am feeling too nervous to find the words, or perhaps I just don’t know enough on the topic it’s hard to fake it so I end up feeling like a fool which takes years to get over, so it all results in my feeling sad. Therefore, the need to retreat into sadness is like delicious medicine.

 

Sadness is also a break from being productive, like a permission slip. “I’m just too sad” so I let it go for a while with good reason because the sadness is so enveloping and kind of cozy. I want to stay here for a while.

 

Eventually, however, the sadness loses its drama appeal and I begin to feel lazy instead. I suppose that’s when I’m beginning to feel better. I don’t want to let it go but it’s time for a shower, brush my teeth and fix hair that’s sticking up and out as if I were just electrocuted. I need to get dressed and go out for a walk, but the fresh air will be like a slap in the face. “Snap out of it!” I can see Cher chastising me for self-indulgence, though I argue, “Is its self- indulgence or am I nurturing myself?” The latter has more appeal.

 

The bottom line? I like sadness, it’s like being on a retreat from climbing the ladder of success, from the journey to oneness, from going out to dinner with people I don’t want to be with. “Sorry, I’m not the best of company right now,” and then back to the sofa in my robe with the remote safely in my pocket.

 

But now, the sadness is beginning to lose its’ charm and I feel a subtle discomfort like an itch that I can’t scratch. I need something, but I don’t know what it is. It’s not food, maybe it’s work, “Oh no, I don’t work anymore. What a relief, but now what?” This reminds me of a little newspaper clipping someone gave me so many years ago with a quote from the disgruntled Sir Henry, the Humble Philosopher. He was a character in a 1960’s English radio series: He shouted to his maid, “I don’t know what I want, but I want it now.” This itch is slowly transitioning to discontent accompanied by an urge to move off the sofa and…and what?

 

OK, let’s start with a walk, for real. Get dressed.
I’m blessed to live across the street from a peaceful salt marsh with an alluring nature trail. The fresh air is less like a slap in the face than I initially feared, and more like a gentle loving caress that’s invigorating. I love the movement of the reeds that are taller than I am, the crunch of the gravel under my feet and the birds chirping as if they are talking. What could they be saying? Maybe they are talking to me saying, “Welcome back. We’re glad you gave yourself time to be sad; it’s like hibernating to regroup and ready yourself for the next step of the journey. We’re glad you trusted yourself to just do nothing. Nothing is like emptying the garbage, now you have room for whatever you want. The world is your oyster, and you can find them over there by the creek.” Feeling given to but abruptly dismissed, I went over to the creek where the oysters were sunning themselves near the water. Their wisdom was enlightening. “We don’t know why you get upset over sadness. Emotions are like the tides, they come, and they go. It’s what’s inside those counts. Some of us have a pearl inside and some just have pearls of wisdom, but here we all are enjoying the sun together.”
Sadness validated, like I just had a vacation, I felt my sadness, let it pass and now I’m feeling inspired to start a new day.

While I was frantically speeding along mid-town Manhattan to meet my sister, an old memory popped into my mind. I was learning about different types of personality disorders in graduate school. Worried, I asked my therapist if I was a narcissist. “No,” he said, “You’re just a run of the mill neurotic.” A narcissistic person would never ask.

 

My diagnosis has always been an adjustment disorder: I’ve had hair-raising reactions to many life events, like the time I was 8 — my cousins and I were doing the can-can together and when we kicked up our legs, my shoe flew off my foot, through the air and landed behind the stove. Why couldn’t that have been funny? Instead, I was scared because I lost my shoe. My cousin jokingly said they’d now have to cut off one foot which made me even more anxious. It’s still not funny.

 

Diagnoses are mostly for insurance purposes. Some, however, are more interesting than others, like the narcissist. There is often one in our families, classrooms, and groups. Their energy is intoxicating but basically it amounts to “it’s all about me.” It’s sometimes entertaining to see how two narcissists interact with each other.

 

While the anxiety-ridden person often hides, the narcissist seeks the attention from everyone in the room. Once in a therapy group someone asked the group’s narcissist to speak louder. Her reply was, “Oh? I can hear myself perfectly well.”

 

The Diagnostic and Statistical Manual of Mental Disorders (DSM) describes adjustment disorders as the development of “symptoms” in response to an “identifiable stressor.” It should only last 6 months after the stressor has been resolved. If that’s the case, I’ll have to wait 6 months after I’m dead. Life creates an adjustment disorder but it’s not nearly as entertaining as a personality disorder. Given the choice, I’d trade bravado for self-doubt any day.

 

 Anxiety accompanies me throughout life. My goal is always to feel as good as average. Every venture has the underlying need to prove that I can do things. The narcissist, by the way, doesn’t go through this. If he fails, it’s with a flair and another exciting drama evolves.

 

Eventually I learned to accept that anxiety is part of who I am. Low self-esteem and constant uncertainty is an exhausting cocktail which I exchange for some real ones as a reward for enduring the inner chaos that I create.

 

Surprisingly, I am not so anxious with cancer. Being taken care of by a team of competent people, as opposed to mom and dad, is very reassuring. The cancer recurrence, however, threw me over the edge. I felt like Jack and Jill so I decided to see a therapist who diagnosed me with: can you guess? An adjustment disorder!  So, who wrote the DSM anyway? Did they get their ideas from the makers of Chutes and Ladders? Sorry? Clue?  Are they suggesting that episodes of depression, anxiety, and anger are inappropriate reactions to having cancer return? If that’s the case, then it’s like blaming the victim.

 

Cancer and treatment are all-consuming and makes an adjustment disorder seem so flimsy in comparison. I have been coping, achieving and managing all along using all the skills I acquired during my lifetime, but I was feeling too inadequate to know it. All those years of self-doubt were a waste of time and energy. This experience is like the third act in a play, a culmination of all that I learned about surviving but this time it’s with acceptance.

 

Therefore, I created a new diagnosis: Asymmetrical Life Challenge, reconstructing because the purpose of life is to find balance, and we are busy reconstructing every day.

 

So, when I met up with my sister that day, I took a calming breath as my anxiety melted away. I am comfortable with who I am.

 

 

Last year on Groundhog Day I was crushed to learn that lymphoma returned. I was in remission for a bit under 3 years, was beginning to feel hopeful that I had a clear path in front of me, and that I could move away from the dark cloud of cancer. Then, suddenly, jail with no “get out of jail free” card. It took a year for me to appreciate the irony and humor of learning about my cancer recurrence on Groundhog Day.

Last year was also the 30th anniversary of Bill Murray’s movie, Groundhog Day and so we taped it beforehand not yet knowing I was going to be living my own Groundhog Day! The Bill Murray character lives the same day over and over again and transitions from cantankerous and sarcastic to loving and authentic. My Groundhog Day experience seemed to go in the opposite direction: from joyful and optimistic to angry and discouraged: I’m still under that cloud.

 

In my first Groundhog Day essay I ended with the question of how can I go through this with an open heart? In retrospect I was a tad unrealistic and optimistic, because before acceptance with an open heart can occur, I needed room for anger. My oncologist recommended managing my lymphoma with oral medication because my original treatment, considered most aggressive, was not effective.

 

Shortly after my cancer recurrence, my husband and I went out to dinner with friends, and we were asked how it’s all going. Pat answered that I got angry more often, and that he was often the target. I was surprised! I thought that I was angry because he was annoying, so it took time for me to realize just how angry I was at having a recurrence that will have to be managed for the rest of my life. My husband’s simple comment, expressed with acceptance and compassion, took me from a state of shock to a current of cascading emotions. Anger, fear, uncertainty and anxiety twirled around me like a tsunami.

 

I was just beginning to plan trips, and to enjoy living fully with cancer behind me, so I was stunned when the rug was yanked out from under me. I felt betrayed — I lost trust in my body, which is always acting out with various symptoms ranging from every imaginable digestive issue, leaving me with only about a half dozen kinds of food that doesn’t make me sick. I have annoying bumps and itchy spots on my skin that come and go mysteriously and exhaustion that makes me feel drugged. My oncologist prescribed a clinical trial pill that 10 months later is still working and though it put me back in remission, I am still left with these symptoms and the never-ending question of how to deal with these physical obstacles that take up so much of my attention. It’s hard to establish a fulfilling rest-of-my-life when I’m weighed down with symptoms and the fear that cancer can come back.

 

I spent the year becoming accustomed to my new normal which consists of monthly visits to Sloan Kettering to monitor the effects of the clinical trial pill, and complaining to an attentive staff who try to help me accept “what is.” It seems they are happier with my remission than I am because I am their success story, but I still don’t know how to move on.

 

All that being said, if the Bill Murray character transformed his repetitive doldrums into a rewarding existence, I could at least look to see if there is a lesson or two for me to learn. For one thing, the ending in my last Groundhog Day story had an overly optimistic goal of an open loving heart. I see that I tend to push away hard-to-deal with feelings in favor of flowery solutions while playing emotional leapfrog. I am learning that anger needs to be felt and expressed but not at the expense of others. I have a life-long habit of repressing my anger, but given my life circumstances, I need to tackle this issue, faster. Expressing my fury with writing or talking to a like-minded friend has actually helped me feel calmer and stronger. I was thrilled when I found myself feeling better after ranting about something in my writing recently. When expressed properly, anger eventually passes — glazed over tranquility seems cartoonish. When anger dissipates, there is calm like after a storm while glazed over tranquility is like play doh that eventually crumples.

 

Living through Groundhog Days are unsettling, good days, and bad days. As I write this, I’m noticing some new aches so I’m anticipating another roller coaster ride of enlarged lymph nodes and emotional upheavals. The roller coaster ride takes me through hope, resistance, anxiety, fear, anger, and sadness. I hope it’s nothing, but I already called my team and am preparing for another pet and CT scan. Maybe this time more emotional awareness will make the ride easier. Next year I’m going to join Punxsutawney Phil.

 

Cleaning up after dinner was an intense experience growing up. My 2 older sisters and I were responsible and my brother, who was both the youngest and the boy, was exempt. One person washed, the other dried and the other cleaned up the kitchen and put everything away. There was always an argument over who did what and so we had a chart that we referred to. I was always having a problem with my older sister Elaine and when she was drying what I was washing sometimes she’d say, “This is still dirty” and throw it back in the sink. Was it spiteful or was it really dirty? It hardly mattered because either way I was annoyed at her. I’m the third daughter, Elaine is in the middle and Celia is the oldest. When I was washing with Celia drying, she’d sympathetically and quietly inform me if something was still dirty, which wasn’t too often, which I guess is proof that Elaine was being spiteful. I don’t know why because she’d have to dry the same thing twice, but in truth our mother’s fastidious ways rubbed off on all of us.

 

Spite, angry feelings, sibling rivalry, and just plain meanness, which was what the house I grew up in was like. Once when I was cleaning up after dinner and sweeping the floor, my father was in the way, so I was sweeping his feet and all around him. “WHAT ARE YOU DOING?” I just learned about puns so happily I said, “I’m trying to sweep you off your feet.” What a sweet remark that was and any father worth his weight would be touched, but my father said, “Well, stop.” My smile disappeared, replaced by a momentary wave of sadness, then the numbness set in, my all-time most effective defense mechanism growing up.

 

After dinner chores were an indicator of the general atmosphere of family life. Lots of tension, so as soon as I could I left home and started my own life. Everywhere I went there were always dishes to wash, pots to scour clean and memories of bitterness would creep into my memory. It wasn’t really traumatic actually doing the dishes, but remembering all that hate and feeling the intense sadness along with unusually close inspection to ensure cleanliness made me feel uneasy about after dinner clean-up, that uneasy feeling came up for a long time.

 

The expression of time heals all wounds is sometimes a bit too sugar coated but I must say there is some truth to it because as I matured, lots of maturing because I am 71 now, compassion for who I was and who I am now has softened the harsh edges of my youth.

 

Now I live with my husband, no kids, but still dishes to wash. I don’t like the way he does dishes but I don’t want to put it back in the sink because it reminds me of the nastiness of my sister, so I quietly wash them again later, or before the next time I use them, but then I discovered something. I actually like washing dishes. I like the warm soapy water on my hands, and as I soap up each dish it’s a satisfying feeling, it soothes my soul. I carefully put the clean dish in the dish drainer (no I don’t have a dish washer) making sure it’s placed in properly. It’s a good feeling of accomplishment. But mostly the soothing feeling of soapy water relaxes me and if I sometimes I listen to soft music or a podcast it becomes a pleasant therapeutic and meditative experience, that is until I get to the pots and pans.

 

There’s a Jewish prayer that observant men are to say daily, expressing gratitude for their station in life: “Thank G-d that I am not a gentile, a woman, or a slave.” When I think about the tremendous impact of this prayer, my mind goes in a million directions, but I’m going to narrow it down to one. As a woman, how could I honor a religion that looks down on me?

 I rejected religion, but still had a yearning for a spiritual path so when the Beatles introduced Buddhism, eastern philosophy, and gurus to the western world, I, along with many other hippies, became interested because the general philosophy is that once we reach enlightenment, we help others in their path. That resonated with me, so I read books, went to lectures and workshops trying to find my way. In the mid-1980’s I went to an ashram in the Berkshires. It was an enlightening experience, just not the one I was looking for.

There were hundreds of photos of the head guru meditating, smiling, and looking serious. They covered every wall in the building with candles or lights next to it which made me think he was dead. Much to my surprise, however, I saw a huge black limousine pull up at which point bunches of his followers ran out to the car, surrounding it and the guru. As he slowly got out of the car, he gazed back at his followers, loving all the attention as he held out his arms in a Christ-like gesture. The wind blew his long black hair away from his face, his smile directed toward those lucky enough to get close to him and his followers swooned like fans at a Beatles concert. As he walked away from the car, his devotees literally followed him down the path, satisfied as long as they could see him as he walked. It was like the Pied Piper come to life or a line of devoted ants who follow in an orderly manner. I remembered that as a child, Jehovah Witnesses would ring our bell and offer us booklets which made my parents a little crazed. Seeing this, I knew that this too was not a good thing and I started to feel uncomfortable. It was like his followers were hypnotized and I wondered what they were thinking, WERE they thinking? Is finding inner peace as simple as just being in close proximity to this person? And why wasn’t I “bowled over” like they were?

 

 It got worse when I realized that only macro-biotic food was served. It looked like fertilizer with bland colored beans, unidentifiable grains and seaweed immersed in some odd colored liquid. What are we supposed to do with seaweed anyway? Something called miso soup was served which smelled like dirt. There was a sign on the glass covering listing compatible combinations to reduce stomach discomfort which didn’t work because everyone I passed was passing gas. With agony, I realized there was not an ounce of caffeine anywhere for too many miles. The guru told his followers that chewing food 25 times before swallowing was healthy so I couldn’t help but notice that the dining room was filled with people who had glazed over looks on their faces as their jaws moved up and down like horses eating hay.

The clincher was the after dinner musical event where everyone danced around a table with candles and a photo of the guru. They were bowing to a photo. I don’t even know what he taught that could produce such a mindless group of devotees. It was like the 1950’s Dracula movies where his subjects were hypnotized and would follow Dracula’s orders without question. This was not the way to Nirvana, I thought, but I also felt uncomfortable in my skepticism. I spent a lifetime wanting to fit in somewhere but even being on caffeine withdrawal I was positive that this wasn’t it. Their blind faith made me uncomfortable, following without knowledge or a heartfelt connection to a higher power. It was the same reason being Jewish was not a good fit for me either.

Some years later I received a letter saying that the guru was removed from his “throne” because he was having affairs with several of his followers. They were apologetic and changed their mission to include many different paths to enlightened states of being. The “ashram” became a yoga retreat, and every photo was removed and replaced by several different, famous, inspiring people. Not one book, tape or CD of this guru was ever to be found again.

This weekend, with weird food and no coffee, helped me become clearer in my spiritual quest. I have always wanted something empowering, something that touches my heart. I am not a follower and that in itself is empowering.

The dentist chair is in a reclining position and so my body is comfortable but my mouth is wide open with a block between my teeth so I can’t bite the dentist. My mouth is numb from Novocain, so I couldn’t bite even if I wanted to. My anxiety started to kick in again, my heart was beating faster as I thought of yet another tooth extraction and the complications of Prolia for my osteoporosis. She is looking to see if my tooth can be saved, and I am silently praying for her success. While she is drilling and hunting, I’m having thoughts about cancer, chemotherapy, stem cell transplant, a covid pandemic, shingles, a fractured shoulder, remission and cancer recurrence. I’ve been through a lot in the last 3 years, and I faced every obstacle to find my way back to wellness, but emotional turmoil wreaks havoc on my body, moods and mental state. My stomach goes ballistic unpredictably, and I feel like I can no longer trust my body which puts a damper on leaving home for fear there won’t be a bathroom nearby. This cancer recurrence is harder to deal with than the first time around. There is no end to treatment, lymphoma will now be managed, and I often have the feeling of living life on a roller coaster.   I found myself feeling lost and sad ever since treatment ended the first time because at 70, I was once again trying to figure out what to do with my life, so I also felt angry and resistant. While sitting in the dentist chair with eyes squeezed shut, I realized something about myself. On one hand I’m doing all the right things for my survival, but on the other I was wishing for life to be finished. These opposite feelings are creating a whirlwind that could be at the center of my anxiety. Physically I am doing well with my clinical trial, but my negative frame of mind creates tension. In “Radical Acceptance” Tara Brach talks about non-judgmental acceptance of all thoughts and feelings, no matter how unpleasant.  My resistance is causing turmoil. So, while my dentist was drilling and hunting for the source of my problem, I realized that because I do everything I should be doing to survive, I must want to survive despite the heavy-hearted feelings I’ve been struggling with. I left feeling relieved and peaceful even though my tooth cannot be saved.   Later in the day I received a call saying my recent Pet scan was great and that I am in remission. I was unusually elated. I went to my family dinner to celebrate the Jewish New Year and announced that I am in remission “again” feeling a mix of trepidation and underlying happiness. One of my nephews responded with, “So that means you kicked cancer to the curb — twice! You rock!” And I said for the first time, without anxiety, “Yes, I do!”

“There are many paths, but only one journey.”

 

In Greek, Hierophant translates as “expounder of sacred mysteries” and “one who teaches the rites of sacrifice and worship.” The Hierophant wears a red robe, a 3-tiered papal crown and holds a bishop’s staff with three crosses all signifying his religious standing. He sits on his throne set between two grey pillars, Severity and Mercy. At his feet are two priests who appear eager to learn from this religious leader who The keys at the Hierophant’s feet, silver and gold represent masculine and feminine — this along with the pillars speak to acknowledging the balance of opposing forces. The keys also represent our choice: obey or disobey? Liberty and freedom or ordained law? (Fiebig & Burger)

 

In her description, Rachel Pollack refers to the meaning of this card as the “inner way” and the “outer way “of seeking spiritual growth. Both lead its’ followers to higher learning though the “outer way” can be interpreted more as a religious doctrine, a set of organized beliefs that we live by and receive comfort from. It is similar in theory to the divine order established by the Emperor in the previous card. The “inner way” refers to more of an inner awareness that urges us toward our individual search for God and connection with Universal energy. Crowley states that this inner path does not tell us what to do but instead leads us towards our own path.

 

The Mythic Tarot’s Hierophant also represents our search to gain a better understanding of our own spiritual quest and relationship with God, though unlike other decks this Hierophant is represented by the centaur named Chiron, a wounded healer, who through his own pain understands and appreciates the pain of others. He represents a wounded part of ourselves that leads us to question and search for answers, opening the way to a greater understanding of the “higher laws of life.” This search may lead us to spiritual teachers for guidance. According to Buddhist philosophy, when we become enlightened it opens new pathways for us to help others. The Hierophant represents our own search and at a certain stage in our path, it can also eventually represent our readiness and desire to be of service to others.

 

Though I haven’t always thought of myself as a wounded healer, my own wounds have led me toward my spiritual search for inner peace. Having come from an observant Jewish background, for me the religion has only been a set of rules to follow you can’t eat this nor can you do that. You have to say it this way – Does God only understand Hebrew? Following the rules made me feel obedient. Was that all there was to religion? When I became a teen and more aware of Eastern philosophy, thanks to the Beatles, I was interested in finding another path to peace. Following rules has never been my forte.

 

I like Rachel Pollack’s description of the Hierophant’s message — the inner way or the outer way but I am also reminded of the quest for balance between opposing forces that so many tarot cards point out. Balance is an important reminder here because for some seekers, a spiritual quest can sometimes result in idolizing religious leaders and their lessons with unquestionable faith. Sadly, there have been too many occasions when our spiritual leaders are put on a pedestal only to have them fall from grace because of their very human shortcomings. I have seen this with priests, rabbis and gurus which makes me acknowledge how vulnerable so many of us are in our spiritual search. Finding the right path can take a lifetime — for many of us it is part of our life purpose.

 

I remember reading somewhere that New Age religion has become like a Chinese menu — picking a few choices from several different categories. The article was speaking negatively about this, preferring a linear path with more commitment. I am never quite sure how I feel about this because on the one hand I admire the sense of belonging that I see in different religious groups. It seems like a straightforward path to God while I feel like a bumblebee landing on one flower enjoying the nectar before moving onto another.

 

I see myself as culturally Jewish, but not observant. My spiritual path has taken me to the Ethical Culture Society, The Edgar Cayce Center, The Universalist Church, Buddhism, Meditation, channeling, past lives, Tarot Cards, and more recently the Akashic Records. Naomi Judd’s quote about many paths but one journey resonates with me because no matter which path I follow it is all for the same reason, to feel connected with Universal Energy. I appreciate all that I have learned, each path enriching my life in immeasurable ways.

 

I realize that my path is more of the inner way, which is, at times, a more challenging path to follow due to its’ ebbs and flows. I see myself as a seeker, but I also wonder how a seeker will know when they find something to land on. I’m not sure but I do know that I learn, evolve, and blossom a little more with each venture regardless of the particular path I am following. There are gifts and opportunities everywhere. Being of service to others has always been a fulfilling experience for me whether it be through social work or reaching out and connecting with others. This is also my way of expressing the Hierophant within.

 

 

 

 

 

 

 

How many times have we heard “this will be funny someday”? At the moment, funny is the last thing it is because fear, embarrassment or in my case anxiety doesn’t feel funny, it’s hard to imagine it ever will be, but then again, how many times have you heard “there are two sides to every story”? Can something be anxiety-provoking and funny at the same time?

 

I remember the first time I realized just how anxious cancer makes me. Chemotherapy and stem cells were completed, and the results of the pet scan were good. I was in remission and when the physician assistant told me the “good news” I couldn’t react. “You don’t look so pleased” she said. It wasn’t that I wanted cancer again, but the weight of anxiety was so intense, and the realization of the weight and control anxiety has over my emotions was tremendous. I wrote about it in an essay called “Out of the Cage” which is in my blog and was published in Coping Magazine.

 

I see now that just because I had an epiphany, unless I actually try to manage, master, understand or somehow deal with anxiety it doesn’t go away, it occurs over and over again, like Groundhog Day, which is the title of another essay in my blog about my cancer recurrence, which, ironically, I found out about on Groundhog Day.

 

Often the second time around makes us “pros” at something – we can move forward with the wisdom of experience. We don’t make the same mistakes when we buy our second car, or home, but the second time around with cancer is somehow even scarier than the first. This persistent bugger won’t go away and now there’s the fear that it’s even stronger than before and it might ultimately win. The treatment is not the same because it apparently didn’t work the first time, so the anxiety is more intense. I think the first time I thoroughly believed that everything will work out and I will live “happily ever after” and this time even though my treatment which consists of a clinical trial is working, I am still waiting for the other shoe to drop. My oncologist suggested that perhaps there was no other shoe. I think he’s sweetly optimistic and unconvincing because after all this is called a clinical trial and the very word “trial” implies it could go either way. I just hope that when the other shoe eventually does drop it is not a combat boot. Maybe a ballet slipper so I can exhaust myself and sweat away the anxiety of dancing.

 

But I digress. Being on a clinical trial has the advantage of lots of attention from the clinical trial team. Who can honestly say that they ever receive enough attention in life? I am encouraged to report every change I see in my body as the clinical trial progresses: it is all written down in a file called a” list of issues” which tickled me because as a neurotic person, I have always had a list of issues. But this means that complaining is encouraged and endorsed! Because I like to be compliant, I examine my body and am hyper-vigilant. Recently I was doing an exercise that involved bending over to touch my toes and, on the way down I found several large bulges on the calf of my right leg. Then I noticed that my right leg is a bit wider than my left. When I stood up the puffy bulges of skin were visible, but seemed to disappear when I sat down, so of course I was positive that something was wrong. I called MSK in a panic and shortly after a nurse called back with a list of clarifying questions. “When you press it with your finger does the skin stay depressed or does it pop back?”

“I don’t know. How long is it supposed to take?” Her specific questions and my vague answers laced with anxiety prompted her to ask if I’d like to come in and show her. “YES!” Nether mind that traffic from the southern part of Brooklyn to the Upper East Side of Manhattan is hectic, I drove anyway, signed in and went to the waiting room. An assistant came out to get me and as we walked down the hall to the exam room she asked, “So do you live so close that you are able to make a same day visit?” I couldn’t tell her that I was too anxious to wait, and I was too anxious to even know just how anxious I was because this state of being is beginning to feel normal.

 

The nurse looked at my leg and asked, “What am I looking for?”

I was sitting so the bulges weren’t visible, so I stood up and showed her. “And look! My right leg is swollen too! Usually, my left leg is bigger because I had arthroscopic surgery in my left knee many years ago.”

She looked, touched, got another nurse to look and touch and finally said, “I don’t see anything. Maybe it’s subcutaneous tissue” Layers of fat? How can that be when I am so skinny, I thought. I desperately wanted something to be wrong in order to validate the tremendous amount of anxiety I was experiencing.

“But look at my right leg. Isn’t it bigger than my left?”

“Maybe a little, are you comfortable in the shoes you’re wearing?” As I walked out of the office, I felt both better that it’s nothing but foolish like the boy who cried wolf.

 

A few days passed, and I look at the bulges in my leg every day. I realize that ego and anxiety seem to work together. I laugh at myself because I realize that I want to have an additional medical problem just so I could be right. Anxiety eradicates logic because I just remembered that my right leg has been bigger than my left ever since I had the arthroscopy surgery there many years ago.

 

So, to answer my question, I suppose anxiety can also be funny but one thing it is not, it is never boring.

 

We used to visit my father’s parents every Saturday. They lived in an apartment over a bar on Bay Parkway in Bensonhurst Brooklyn —at the time – the 1950’s and 60’s, it was a Syrian Jewish neighborhood. Going to their home was like an excursion to the middle east with aromas from my grandmother’s cooking, my grandfather’s fermenting raisins for his homemade liquor, brass plates decorating the walls, and oriental rugs lining their railroad apartment floors. My grandmother sat in the room closest to the kitchen. When she smiled the gold cap on her front tooth shined, her gold bangle bracelets jingled on both arms, a trademark for Syrian Jewish women at the time. The more bracelets owned the higher your status, but at the time, I just liked the jingle and the shine. She had a lot to be proud of with 8 sons — daughters were not as special, and neither was anyone who wasn’t a Syrian Jew.

 

Her window overlooked a terrace filled with plants, and the terrace overlooked the subway tracks of the B train. My grandfather sat in the front room overlooking Bay Parkway, he liked watching the activity on this busy avenue. He sat at a bridge table with a deck of cards, a glass of tea, and in the corner of the table was a napkin that covered his dentures. He’d put them in as soon as someone arrived. Once my brother and I caught him before he put his dentures in, we stopped dead in our tracks, frozen, our eyes opened wide, jaws dropped at Grandpa’s ability to remove and replace his teeth.

 

Saturday evenings after Shabbos were special events as their friends from the neighborhood always visited. Everyone spoke Arabic and I liked listening to the sounds they made as they spoke: the guttural noises sounded like they were clearing their throats. It was funny to think that this was a real language. Some visitors went to see my grandfather and they played backgammon drinking a Syrian form of Uzo that my grandfather made in his homemade distillery in their kitchen. They used little shot glasses encased in filigree silver. I wanted to share in this ritual because the glasses were beautiful, but I wasn’t allowed to drink. What I liked best, however, were the visitors who stayed with my grandmother because they sat in a circle and smoked a water pipe together, passing the hose around after each puff. My mother, a germ-a-phobe, watched with disgust as everyone put the same pipe into their mouths. I liked watching the ritual as it reminded me of cowboy movies where they smoked the peace pipe with Indians, who are now called Native Americans.

 

While there was a lot to watch with wonder as we visited, it all changed when I was about 6 years old because my grandmother became ill. People still visited, apparently my grandmother was a popular well-liked woman. We didn’t have much to say to each other, as she spoke mostly Arabic, though once she did tell me I needed a girdle. After that, I preferred her speaking Arabic.

 

One day when we went to visit, she had a nurse looking after her. There were the usual people around, but this one person looked very different. My bold 6-year-old self-marched up to her and proudly said, “You know, I wash my face and hands every day. You should do that too.” She gave me a curious smile and the rest of the family filled the room with nervous laughter. I had never seen anyone with black skin before. I couldn’t understand the laughter, but it made me feel uneasy, and the nurse told me that this was the color of her skin. I don’t remember how the rest of the day went, but when we were leaving and my mother told me to kiss everyone goodbye, I made my rounds, and also kissed the nurse, which again made everyone laugh, much to my confusion.

 

Everyone was embarrassed by my remark, but I was innocently curious and satisfied with the nurse’s answer that this was her natural skin color. In retrospect, my curiosity was refreshing because there was no judgement on hearing her answer while the nervous laughter of the adults around me hinted at their own embarrassment — my comment touched on their own feelings about different races cultures and religions. Anyone who wasn’t Sephardic were outsiders, especially people who had different color skin.

 

Over the years I was very conscious of who are “insiders” and who are “outsiders.” We all had relations with people who weren’t Sephardic and there was always a conscious recognition of who was Sephardic, Ashkenazi, or non-Jew. These discussions on who’s who took place while I had trouble figuring out if I was an insider or an outsider. There was a grandiose feeling about being Sephardic and I was always self-effacing because of my vision and learning problems so I was confused as to how I can be Sephardic and feel so insecure and inadequate. In retrospect, if I had to ask that question, I suppose that made me an outsider and I spent many years feeling like a dejected outsider not just in the Sephardic community, but in every aspect of my life until many years later when I was able to take pride in my own individuality.

 

I look back on this experience with a smile because I love innocent curiosity without judgement that only children seem to possess. Thankfully, the nurse was more amused by me than insulted and this memory was one of the influencing factors in eventually identifying myself not as an insider or outsider, but as a person who seeks. Seeking a place to belong, seeking the truth about people, what is underneath the masks we created in order to survive, and most importantly, who am I? I loved the cultural traditions my family practiced, but I was mystified by the pride found in being a Syrian Jew. Who were these people? What made them laugh, what were they passionate about? I felt more like a curious spectator than a member of the clan.

 

Sometimes it’s difficult being a seeker and not finding the right answer or a place to belong. I remember an essay in a book called “Everything I needed to know I learned in Kindergarten.” The writer was watching a group of children playing hide and go seek and a child hid under a pile of leaves under his window. He hid so well that no one found him: while the others were sharing the excitement of getting found, this child remained hidden under a pile of leaves. His words to the child were, “Get found, kid.” I think of that often because I feel like I am always looking to find out who I am, what do I need, what do I want? I sometimes envy people in exclusive groups like Syrian Jews or Republicans because they don’t seem to have deep-seeded questions about their identity — they belong somewhere, while I feel like a bumblebee landing on a flower, hanging out for a while, enjoying the nectar before moving on, but as I write this, I remember that the task of a seeker is also to look within.

 

I want to write a comedy piece on cancer, having been disappointed that the jokes on Comedy vs. Cancer night that Sloan Kettering put together were comedy routines that the comedians usually perform. They were funny, no doubt, they spoke about outdoor restaurants made of cardboard and wood, family, culture and the like, but nothing that touched my heart. I have been fighting cancer for over 3 years. Well, that’s a funny term because I am not in a boxing ring with cancer as my opponent. I am more of a passive fighter or a struggler. I was probed and prodded in order to find out that I had cancer. I had MRI’s, CT scans, pet scans and biopsies to find out what was wrong, more tests in 6 months than I had in a lifetime. Then I received poisonous injections and pills for 6 months and lied around exhausted and hairless for a few more months. I had my blood taken out and put back in with new baby stem cells that I created by injecting myself with who-knows-what and lied around for another year. Then there was a period of time where I was supposedly in remission, with the pressure to move on only to find myself back on my sofa again feeling depleted with cancer winning the next round and I never got the opportunity to punch out cancer in a boxing ring. Perhaps a tickling match might be worth a try.

 So, fighting, battling, or struggling with cancer wasn’t for me, I lost 2 for 2 and felt demoralized. Then the Comedy Vs. Cancer night made me want to try to approach cancer from another angle. I wanted this night to touch my soul with a brand of humor that tickled my heart and lift it to a happier place. But I’ve also been thinking about the Fool, the first card in the major arcana’s tarot cards. – what would the fool do if he or she had cancer?

 

I refer to the fool as he or she because in many decks the Fool is an androgynous figure. Funny! I feel like that too – Cancer left me 60 pounds lighter with limp hair, flat chested and no waist. If I don’t put on makeup, earrings, and girly clothes, I can easily be mistaken for a boy. I am finding a freedom in androgyny to not be identified with a particular sex, and it is an uplifting feeling to be able to be who you are — untethered by sex role stereotypes. This is an appealing quality about the Fool as in Jung and the Tarot the author states that the Fool is “free and unencumbered by society.” I can be funny, curious, passive, or assertive and it’s not attached to a sex role, however being older — we are forgotten people — can give one that same feeling though that is another story.

 

The author of Jung and the Tarot also states that the fool carries, “carries wisdom, madness and folly, bridging unconscious mayhem with structured consciousness.”

When I think about life with cancer, that sentence catches my attention because cancer is mayhem in my body. There are symptoms and pills, exhaustion, vulnerability both physical and emotional and so it is difficult to maintain an untethered emotional state for long, though there are periods where spiritual peace is attainable, where I can transcend from what is going on in my body and connect with my soul in a higher state of consciousness. I imagine the fool having those periods of time as longer lasting than my fleeting moments. I imagine the fool – with a facial expression of ecstasy – walking freely along the path of chaos and peace balancing both with carefree ease.

 

I imagine the Fool is not bothered by days of no energy because he/she rests when needed and is unattached to the feeling of sadness that I carry when those moments of exhaustion hit me. The fool will rest blissfully and continue its journey at a later date. There are no concerns for time elements, nor does the Fool need to worry about losing health coverage because there is faith that it will all work out.

 

A book by called Tarot Therapy by Janet Woudhuysen states that the fool doesn’t know where he is going but knows that you don’t reach perfection by standing still. That feels so satisfying to me because the Fool doesn’t need an agenda and a list of questions written out before a doctor visit: the Fool has faith that it will all work out the way it should – in the best of all possible worlds, as Candide once wisely said, while I worry that I missed a question, or that something else will happen that may or may not occur, but it doesn’t stop me from worrying.

I imagine that the Fool will go about its journey with cancer with faith and ease, especially if he is treated at Sloan Kettering, but the question of how the Fool would handle a recurrence is the next issue at hand, as the Fool knows that our growth process and life lessons, are not straight lines forward. Sometimes there are detours and regressions that occur before we can move forward again. This is what a cancer recurrence is, a detour: It can feel like you’re back at square 1 but lessons learned don’t get unlearned, it just takes a while to get back on your feet — the Fool doesn’t judge, but instead merrily moves forward with a white rose held delicately in his left hand representing secrets that are yet to be discovered.

I always liked the idea of wishing on a star, but which star? Which wish? As a child there were many. I wished school wasn’t so hard, I wish the boy I liked in the 6th grade liked me back. Later, I wished that the boy I met at a dance would call me and ask me for a date. I see that the wishes I thought of were all those I made as a girl growing up.

But I am now grown up and I haven’t seriously wished for years. If I still wished for things, I would wish that cancer would just go away and even more than that, I would wish people would stop telling me — with surprise — that I look good. When people ask how I’m doing, I’d like them to hear an honest answer because in addition to connecting to another person and sharing compassion, it helps melt away the awkwardness of talking about bad news. The truth is that I feel like crap, and no one wants to get it, probably because they don’t know any more than I do what to do with this crappy feeling that overwhelms me just about every day. Plus, many of us tend to avoid sadness, helplessness, and things we can’t fix so we find “quick fix” answers or suggestions which we think will make the negativity go away.

Wishes don’t work anyway — they are too passive and kind of whiny. Even when Judy Garland sang her song about wishes (or was it rainbows?), there was a wistful sadness to it and underneath is the feeling of “yeah, this is not happening.”

But what an interesting idea to launch my demand into the sky. Now this has action, excitement, and it’s not whiny. It’s very inspiring. I don’t know a song that would go with it but I’m imagining a drum roll as I take my giant-sized sling shot and launch a demand into the sky.

MAKE THIS FUCKING SHIT GO AWAY
MAKE ME HEALTHY AGIAN
MAKE PEOPLE STOP THEIR CAREFUL SAD EXPRESSIONS AS THEY TENTATIVELY ASK HOW I AM
AND LET US NOT FORGET TO MAKE THEM STOP TELLING ME, “BUT YOU LOOK GOOD”
MAKE PEOPLE BRAVE ENOUGH TO SAY WHAT’S ON THEIR MIND AND AVOID A PREGNANT PAUSE

I wish —oh there is that awful passive word again — that it were as easy as that, but I like the idea of launching instead of wishing. It is inspiring and makes me want to launch a new passion for life because I feel bogged down by fatigue, stomach issues, anxiety, and an overall feeling of sadness all of which came about as a result of my diagnosis of T-cell lymphoma, a battle that has been going on for over 3 years. Even though I was in remission for some of this time, these symptoms never really left. I was just about ready to say good-bye to cancer when it showed its’ ugly head again. So, it appears that my original treatment, consisting of chemotherapy, a clinical trial and stem cell transplant wasn’t enough to get rid of this tricky demon because as it turned out my remission was really just an intermission before cancer resumed and now it will always have to be managed. Currently management consists of a clinical trial, I take oral medication three times a week for two weeks at a time, then a two-week break before resuming again. I am closely monitored with bloodwork and EKGs on my regular visits to Memorial Sloan Kettering. If and when this medication stops working there will always be other medications to try, all in the spirit of managing my disease.

So now I want to feel the lightness of being — did I ever really feel it before cancer? Maybe not but it was always something I was aiming for. I want the rest of whatever time I have left in this life to have meaning. I want to create a new interest in life despite all of these issues that weigh me down. I am hereby launching my demand into the sky.

 

I live across the street from a salt marsh, in the south-east corner of Brooklyn. Marine Park. When we first moved there, the salt marsh was a dumping ground for abandoned cars until the U.S. Army Corp of Engineers cleaned it out: the image of a totem pole of burnt-out cars outside the marsh waiting to be carted away is forever in my memory bank. They made a walking path, put gravel out and it is a peaceful trail with different kinds of reeds and trees on one side, more reeds and water on the other. It is home to herons, rabbits, raccoons, opossum, and a large variety of birds. There are often birdwatchers with huge cameras, romantic couples, and a few solitary people, like me, enjoying the atmosphere.

I do my best thinking while walking on the nature trail. It is not a well-known place so I can often enjoy the reeds swaying — different reeds have their own rhythm but they all sway together. The herons are by the water’s bank and if it’s real quiet I can see a rabbit running back into the reeds for cover when they hear my footsteps in the gravel. The peaceful atmosphere is soothing, and particularly so when I am feeling troubled.

As I write this, it is early spring, and it is cold, but the sky is bright with sunshine. When I’m walking along the nature trail, I am always awestruck by so much sky, with no buildings to interrupt the view. It’s amazing that such a peaceful place exists in Brooklyn, and so I am blessed to enjoy it each and every day. On this particular day, it’s sunny and bright and I realized that the sky looks different in the spring than it does in the winter. The sky is bright blue not a cloud in sight and as I look out at the water’s edge the sky meets the water, a soothing mixture of blues.

What I also notice are the trees, which look so severe and stark with branches that look like they are piercing the sky. Funny, I remember asking my father, “Dad, how far up is the roof?” “The sky doesn’t have a roof,” he said impatiently. “But it looks like it” I said not wanting to give up. “THE SKY DOES NOT HAVE A ROOF” he said in a tone that told me this discussion is over. I am looking at the sky on this bright and beautiful day wondering what it was that made me think that “the sky’s the limit” was wrong because today the sky looks endless. I guess we impose limits so that we will feel safer? On this lovely day I laugh happily as my younger self was imaginative, inquisitive, and kind of cute despite my father’s impatience.

Today the sky looks endless with possibilities, but I am still imposing limits. Not a roof but instead, “ok, I am halfway through, I know there’s a bench around the bend, that one always has kids smoking pot. Someone left beer bottles. It’s been so long since I had beer or wine or any kind of alcohol. I miss fun: These and other thoughts go through my mind instead of just enjoying the salt marsh.

The starkness of the trees were unsettling for me. In winter months the empty trees seem to go better with the grey sky but the empty branches that look like spears against the bright sunny sky is disturbing. A piercing reminder that some things in life are just out of sync. The birds sitting on the branches are exposed. It reminds me of a dream I once had where I dreamt, I was in a shower with glass doors that was placed in the middle of a restaurant so everyone could see me naked, soaping up my body. I felt ashamed and even more so when I told my therapist.

The empty exposed trees are a reminder that I feel safer when I can hide but these days so many emotions are bubbling to the surface. I am angry that I will have cancer for the rest of my life. I’m angry that my medical coverage is changing, and the city wants to save a buck at the expense of retired NYC employees. I am tired of people with concerned frightened faces asking me how I feel, when it is really their feelings that are more of a concern than mine. I am frightened at the thought that one day pills will stop working and my body will deteriorate, and I will need help. I am sad that life wasn’t as I imagined it would be. I thought I’d live “happily ever after” when in fact I am only finding happy moments. I feel sad that I am missing something because I honestly don’t know what would make me happy anyway. Maybe happy is just overrated.

As these feelings are bubbling up inside, I hear my footsteps on the gravel, a slow steady crunching sound under my feet in a steady rhythm. The feelings are there, and I wish the sky really did have a roof so the sadness wouldn’t feel so endless, but my footsteps are still slow and steady as I carry my burden and enjoy the beauty of the salt marsh.

When cancer was over it was hard to move on
Everything ended and old opportunities were gone. Though I was cancer free, it hardly mattered.
I didn’t want to start over, I felt tired and battered.

I felt finished and wanted life to be done,
There was no zest for life and no more fun.
But I gave myself time and started to feel better
A new attitude made my appetite wetter.
Life was looking good again but some lymph nodes started to grow,
My oncologist said Lymphoma again, Wow! Wouldn’t you know!?

I was finally moving on and the news came as a shock
It’s like being on square one again like someone turned back the clock.
This time is different though because I feel a lot of guilt
I didn’t want to rebuild nor did I want to wilt.

I thought I made this happen but I see that I was wrong
I can’t beat myself up, instead I have to be strong.
So I have cancer again this is something I have to face
The reason for my guilt is not that hard to trace

I don’t have a choice in wanting life to be finished
Instead I should acknowledge feelings, nothing should be diminished

I can do this — keep the doors to my heart open,
Face my feelings, everything should be spoken
It’s not a perfect solution, but neither is life,
But self-expression causes less strife.

When I was first diagnosed with cancer, February 2020, I wrote an essay called Choosing Life where I spoke about the ambivalence I often felt about life and a favorite cartoon on a postcard  that explained it all: it showed a man leaning over a counter, returning a package saying, “No, life isn’t what I wanted, haven’t you got anything else?”  In spite of my constant heavy heartedness, I managed reasonably well throughout life. Everything changed when I was diagnosed with angioimmunoblastic T Cell Lymphoma. This sudden turn of life events put me face to face with how much I let resistance and self-effacement limit possibilities for success and happiness. Cancer was an opportunity to see my life end, but my immediate reaction was that I wanted it all to change. I automatically sought treatment in spite of my usual mantra of how I hated life. There was never a thought otherwise — I chose life.

 

Being in treatment was a nurturing experience. I put my life in the hands of skilled doctors and nurses and all I had to do was to get better: being taken care of felt wonderful and I achieved something important — I was in remission — and winning felt victorious,  but soon after, when it was time to return to being productive in life, I was lost. I wasn’t returning to a job, the pandemic swept through the world and it was unsafe to do just about anything that involved human contact and to top it off, it chased what local friends I had left  to the suburbs. I found myself back to being a teen — I don’t know what to do with the rest of my life and that old feeling returned: “No, life is not what I wanted.” Like a kid not wanting to do homework I just didn’t want to work at creating a new lifestyle. Resistance was winning, and  though I put rewarding outlets in place — volunteer work and writing — I still felt like there was a lot lacking. It felt like I let myself down. The dire need to want to make life count became diluted with resistance and exhaustion, physically, mentally and emotionally. I vacillated between determination and procrastination, “I’ll think about it tomorrow” Thank you Scarlett O’Hara.

 

I assumed that resistance was slowly taking over  but I soon  realized that some of it was that I was physically exhausted and eventually I saw lymph nodes appear again. Remission is over! Back to MSK, Pet scans, biopsies, and more.

 

I felt guilty thinking that I wanted life to be over. On some universal spiritual level I thought cancer came back to give me yet another chance at making life count. Is this a reward or a punishment? But it’s also possible that it never went away. My oncologist said it just shrank to unmeasurable levels so it only looked like it was gone. I like his explanation because it gets me “off the hook” though  on some level, there is a feeling that I don’t like to acknowledge — it did feel like a punishment. Deeper down though, there is also the feeling that this is another chance to make my life count. I could look at this with guilt  and failure, feeling defeated because resistance won, or I could stop judging and look at my cancer recurrence as another experience to learn and grow from.

 

The feeling of being tired of living is just that – a feeling that needs to be paid attention to, not something to act on. Buddhists would say something like, acknowledge it then let it pass. For me, feelings of sadness and anger take over: I was recently taking my walk in the salt marsh and the overall feeling I had at the time was anger. I hate having to fight cancer for the rest of my life. As this thought came to me, I looked up at the trees and saw little buds and realized that my anger doesn’t have movement and growth. It makes me feel agitated and stuck while everything around me is going through changes. Eventually the feeling evaporated without my even noticing it. I felt it, acknowledged it and moved on. Later that night I realized with relief that I was feeling peaceful again. I know that feeling will arise again and instead of the self-hate I would usually feel, I will try to remember that at this moment I am just not up to the challenge. It is temporary, not a state of mind. Unpleasant feelings won’t kill me, I had them my whole life but never did they define me. I am, and we all are, a mix of yin and yang, the darkness cannot be ignored but instead it is balanced by light and this in itself is a lesson  resulting from my cancer recurrence. I was jubilant when I reached remission and thought that this victorious feeling would be permanent but it wasn’t. Life will always have its’ ups and downs and resistance will not go away, but I am here like the chariot in the Tarot cards with black and white sphinxes in front of me, representing the balance of opposing forces.

 

 

When I was 18, I went to live on a Kibbutz in Israel for 9 months. It was an elaborate way of running away from home and it saved my soul, which started me off on a path to find out who I am and what kind of life I would be living. The traditional life of marriage and children were not for me and I didn’t know what else was there if I didn’t go that route, so being away from my family, from all the influences that family life offers made me open to find out who I am. It was at times like a pendulum going from one extreme to another, without stopping in between. Family life was all I knew, and it was suffocating. Being on the kibbutz, away from everyone was a wonderful introduction in finding my life’s path. Where I wore stockings, a skirt and blow dried my curly hair  straight every morning, once on the kibbutz, I found myself asking anyone with a scissor to cut it off. I ended up with a cute pixie haircut that made me look like a boy. It kept me “safe” from most of the Israeli and Arab men.

Kibbutzim are communal ways of living on land that is mostly owned by the State of Israel. Its’ members work together, the fruits of their labor goes towards support of the Kibbutz. Their members live there their whole lives and raise their families there, many of which stay and eventually raise their children. In 1971 when I was 18 years old, I went to volunteer at Kibbutz Gvar Am near Ashkelon, 32 miles south of Tel Aviv, near the Gaza Strip. At the time their main source of support was in raising chickens, and in growing oranges and pears. There were volunteers who come from all parts of the world, eager to live, work and enjoy a simpler life. At the time of my visit, the other volunteers were young people like me, who were also there to find their life paths. Many were traveling for an extended period of time, had no intention of going home and spent time on the Kibbutz to take a break from their travels.

Being on my own — and living in the Israeli countryside — was liberating. It was  difficult to shake away years of conditioning, but there was one activity that gave me a “jump start” to a new way of living — it was skinny dipping. I was naked in front of all sorts of young men and women doing the same thing, enjoying the freedom of discovering what is underneath our skin. The cool water on my unencumbered body was like an alarm clock waking up my senses. It was the most exciting feeling. If my family could see me now, they’d all have a heart attack because my mother only saw my naked body when I was a baby and my sisters who I shared a room with, well we never saw each other naked. Here at the pool, which we broke into at night, we saw each other at our most vulnerable, but it was more exciting being free than wondering what to do with our collective nakedness. The freedom was intoxicating and in the years following I searched for freedom in many other ways, my independent lifestyle, searching for the right career and taking my time in achieving my goals while I worked full time. I found my partner in life, and enjoyed just being present.

Many years later, I no longer go skinny dipping though I am enjoying “the fruits of my labor” with the life that I created. As an older person and a cancer survivor, I am pleased with the person I turned out to be and many of the choices I have made, but no matter how difficult some of the results of my choices were, I never stopped looking for my inner truth.

When I’m at a public beach I now need to cover up my body while the younger ones are parading around in their skimpy bathing suits, enjoying the freedom that started with shedding their clothes. They are now busy fulfilling their dreams where freedom of choice and freedom to be moves to the fore front.

 

Sometime in January I read that the movie, Groundhog Day, would be having its’ 30th anniversary and that it will be on the AMC channel all day. I think I was the only one who thought that was funny. It was a brilliant movie with Bill Murray who repeated the same days’ events over and over again. All I remembered is that he kept doing it until he got it right and he went from sarcastic and cynical to compassionate and joyful.

While waiting for the movie, I couldn’t help but notice unpleasant changes in my body. It has been almost 3 years that treatment for T-Cell lymphoma ended  — being in remission was an unexpectedly difficult transition from being a cancer patient to being a cancer survivor. I went from feeling lost and uneasy with a cloud of cancer over my head to finding the courage to move beyond the cloud and onto a fresh new path. It was hard to grasp onto wellness and start a new life at 70 but I was determined to move forward.

It was time to see my oncologist for my 6-month checkup and the last time I saw him he said that as long as I continue to be OK pet scans would now take place annually. On this visit however I spoke about the unpleasant changes in my body — enlarged lymph nodes and fatigue. Another Pet scan took place, sooner than expected, which made me feel both relieved and anxious. I wanted to pursue wellness but now I was scared all over again.

The Pet scan results appeared on my MSK portal very quickly and it showed the measurements for numerous enlarged lymph nodes, some I knew about and some a complete surprise, and in the space for impressions, it noted that there was a 75% probability that it was lymphoma. My oncologist made room in his schedule to see me the next day to talk about the result and I was grateful because now sleepless nights filled with short anxious breaths were added to my list of physical complaints.

Anxiety is a totally draining experience — negative thoughts occupied my brain. Am I going to need chemotherapy again? Lose my hair? If so, will it grow back thick and curly like it originally was or would it be even more thin and limp than it is now? Is my will in order? I can’t concentrate on anything else, and these intruding thoughts are anxiety doing its’ work on my brain while my body is worn out with shortness of breath and a faster than normal heartbeat. Even though my oncologist made the appointment for the next day, it was the longest day. With exasperation I said to my husband, “I can’t believe I have to go through this again.”

His answer explained it all: “Well, it is Groundhog Day.”

So, on Groundhog Day, I learned that I indeed have lymphoma again — a biopsy is needed to find out what kind of lymphoma I have and what kind of treatment will take place. Like the last time, I felt oddly calmer learning this news. Now, I suppose , it is because I am more familiar with the path of  cancer treatment than I am with the road to wellness. I will be taken care of and like in the movie I will have an opportunity to do it all over again, and make positive changes.

As I was having my own Groundhog day, we went home and watched the movie. The Bill Murray character changed from sarcastic and cynical  to loving and kind. When he discovers that he is repeating each day over and over again he realizes he can do anything he wants and has nothing to lose. He performs a series of daring events like jumping off buildings and crashing cars, to finding out what his love interest enjoys and feigns interest until finally he experiences authenticity. He genuinely cares about her and all the people around him, expressing kindness and compassion to those he previously either ignored or showed contempt for.

So, what about my own Groundhog Day? As I wait for the biopsy, final diagnosis and treatment, I have the same question as I had before — will I survive this? I now believe that it is the wrong question. I have no control other than to be diligent in following the course of treatment. Anxiety is wasted energy, it only makes things worse and no one has control over the future. So the question to ask is, How can I get through this with a full and open heart?

 

 We were sitting in a resturant in Aruba, an open beautiful space overlooking  a waterfall with big golden fishes, iguanas sunning themselves, and a glamorous black swan parading around the water admired by everyone. It was an open but shaded space where we can feel the soothing heat in January but remain protected from the sun. An occasional bird flew in to pick up some breakfast remains. In this gloriously happy place where everyone is on vacation there is energetic chatter and laughter everywhere. A little boy, about 2-3 years old saw a bird land on someone’s abandoned breakfast table and with his high pitched laughter he ran toward the bird with the cutest wobbly gait of a child who just mastered the art of running. He began chasing the bird around the table and laughing while the bird was squawking. The bird could have flown away but instead they ran around and around the table together, squawking and laughing, a playful bond between a boy and a bird. What a wonderful introduction to Aruba!

     After 2 unsuccessful attempts, we finally made it! Covid numbers were too high the first time, the second time I fractured my shoulder and the third, well, we were finally there. We had a rocky start because my husband Pat had a scratchy throat before we left and by the time we arrived, it blossomed into a full fledged cold, so he spent the first 2 days in bed with the “do not disturb” sign on the door.

     For me every day is consumed with my post cancer stomach issues and I’m beginning to see how much tension this produces. There is so much to worry about, so I end up carrying a lot of baggage, literally and figuratively, and wonder what happened to our lives.

     While Pat was in bed, I went to the beach with the rest of our family and was immediately struck by the amount of fun in the air. So many people taking a break from their lives, they tucked their clothes, occupations and life-tasks into their suitcases, exchanged it all for bathing suits and happily walked around exposing most of their bodies and a different kind of vulnerability that is usually hidden. Childlike energy of playing catch and floating in the calm ocean water,  unaware that anything else exists in life except for the present moment. I saw people sprawled out, it looked like every muscle in their bodies went limp and funnily enough, not so many cell phones. I wondered if I would be one of those people in the days to come.

     Aging takes up a lot of attention with physical limitations so when Pat finally got out of bed he needed assistance walking on the sand while I am always looking for the nearest restroom. Additionally, in my younger years I was always out in the sun working on a tan — I have the sun spots to prove it. Now, the sun is too hot and it zaps whatever energy I have, which makes me afraid of getting sick. With relief I retreat to the shaded  grassy umbrella where Pat and Kevin are already sitting. Next year we may need a bigger umbrella.

    I took my tarot cards with me and each day we picked a “card for the day” to help us along with the quest on our lives’ journey. I picked a lot of Queens, clear headed strong women who are in control of their lives, but the most intriguing card was the Wheel of Fortune, a card representing the inevitability of change. If we can accept this hard-to-accept fact, we are opening ourselves up to welcome  happiness with “bigger dimensions and better solutions.” Fiebig & Burger

     Being able to gracefully move along with the changes in life, brings us dignity and comfort.  It was interesting to see that most of the people on the beach were younger than me and Pat. My usual question, to no one in particular, was “where are the other people our age?” While there were hundreds of younger people running around in skimpy bathing suits, we  wore lots of protection and sat  comfortably watching people have fun, playing, eating and drinking. I loved looking out at the gentle waves which was hypnotizing. There were happy  people floating along with the  movement of water — the constant  rhythm made me aware of my own body’s rhythm in every breath. This awareness was life affirming, a lovely message from  the Wheel of Fortune.

    The ultimate message came with Pat and his cane, which he initially resisted. When he put aside all the uneasiness of needing a cane, he quickly saw the benefits. The sadness of being hindered by age evaporated as he began to walk with improved balance and strength. It seemed to become a part of him and it was a joy to watch him walking gracefully and happily with his grandsons by his side.

     The Wheel of Fortune tells us that when we move along with the wheel without resisting, accepting its’ ups and downs, like riding a wave, we will be able to receive its rewards. I was watching Pat watch his grandson play roulette, interestingly another kind of wheel. Drew is observant, wise and careful with his money and was doing extraordinarily well. His family stood around him with excitement as Drew kept winning. My eyes were not on the winning numbers, they were on Pat. He was standing and leaning on his cane comfortably. His gaze was on his grandson and he had a huge smile and eyes that sparkled. As I watched my husband give up pride in exchange for a cane, he was free enough to feel the excitement of the moment and the love that was shared in this beautiful family.  The acceptance of needing help enabled him to move onto “bigger dimensions and better solutions.”     

I’ve been a retired social worker for a few years now, and though retired, I was never finished being a social worker. I’m lucky to have found a profession that fills my heart and soul — sharing my kindness and helping those in need is second nature. It started so many years ago, in high school on a trip to Willowbrook, a state mental institution in Staten Island, which no longer exists and is a story in itself. Severely developmentally disabled adults lived there, long forgotten by their families and basically ignored by staff. When my senior high school class made our trip there with the school’s band, I quickly abandoned my crush on the trumpet player and blissfully exchanged hugs, laughter, and good feelings with the residents. Most only made grunting noises but their gratitude at being paid attention to was crystal clear. Adolescence was such a complicated time in my life, so this lifted me out of my usual teen-age funk to a state of exhilaration to be able to provide something that meant so much to this unfortunate group of people.

 

Many years and many paths later I found my way to graduate school and became a social worker. Giving was entwined with paperwork — literally in those pre computer days — and giving had to be justified, explained, and documented. The documenting process was complicated and put a damper on my giving nature, but still I made my way from one community agency to another until the department of education came along which gave me a decent salary and pension but giving was even more limited by a huge bureaucratic system.

 

More years passed, a devastating pandemic, cancer, and social isolation to recuperate and stay protected. I spent time giving to myself, reclining on my soft and wonderful pillows until I was able to climb onto the zoom bandwagon. A whole different sort of giving started to blossom.

 

Who would have expected that volunteer work would be the best of both worlds. I can do what comes naturally without a hassle. And what’s more, giving itself has changed. Where there were perimeters on how much to give and for what reason, policies of social service agencies, giving as a volunteer comes straight from the heart. Previously I was only help Susan in a 45-minute session, and had to assess her state of mind, her health and safety and so on. Then documenting took up more time than the giving itself. Now I can appreciate the joy of connecting with those in need, seeing them nourished and encouraged to move on in their lives and bask in the pleasure of a beautiful exchange until the next time, with someone else.

 

The pleasure of giving is like good medicine in that it lifts my spirits to know that giving is part of my life’s purpose. It feels as good to give as it does to receive however sometimes I have a question that needs exploring. Giving can come from ego, meaning that I give in order to feel better about who I am. Knowing that I am needed fills me with purpose and it completes me. I remember having a friend with the most giving beautiful heart but at her untimely death and funeral I met her other friends. What I saw surprised me and had great impact: they were all people with deep emotional wounds that she helped. I realized that I was one of those friends. She had one friend that she seemed to be on equal ground with, the amount of giving and receiving between them seemed to be reciprocal. I wondered if my friend gave in order to make herself feel better. I relate with that because giving helps me feel better about who I am. It’s an attribute that helps define me.

 

There is another type of giving that I also sometimes feel. Cancer has taken away so much, but it also gave me a deeper insight into who I am with the desire to live the rest of my life with greater self-knowledge, acceptance, and love. I feel more determined to discover inner peace and completeness. Popeye’s wise quote, “I yam what I yam,” reinforces total self-acceptance for me. When I give with this sense of completeness it’s like icing on the cake. The cake is delicious as it is, but the icing is an extra special treat.

 

Whatever drives the need to give, it’s always a glorious feeling connecting with others, however the type of giving that comes from a sense of completeness — rather than a need to give in order to feel complete — seems more satisfying to me because I am already enjoying the feeling of completeness, now I just want to share it. It unites us with each other, and with the Universe. It’s like being in high school again where I first discovered that I have something to give to the residents of Willowbrook —pure joy.

I have a yellowed, framed cartoon on my bookshelf that’s been there for many years. I look at it often and relate to its message each time I read it. I finally looked it up to see where the quote came from. It turns out its from an English multi-talented writer named Vivian Stanshall who was famous for his hilarious farcical band called the Bonzo Dog Doo-Dah Band in the late 1960’s and a radio series called Rawlinson End about a disgruntled upper class British nobleman who at the height of his discontent shouted to his maid, “I don’t know what I want, but I want it now!”

 

Though I’m amused at the origins of my favorite quote, I’m also dismayed because I don’t like to think that I am as disgruntled and frustrated as Sir Henry but I do identify with his quote because I often have a gnawing unsettled feeling that results in an occasional disgruntled outburst which makes me feel irritable, impatient and annoyed at everything. To try to alleviate this awful feeling, I wander into the kitchen opening the cabinet filled with pretzel sticks, chocolate covered salted carmels  jelly beans, marshmallow pumpkins, and a bag of popcorn with an adorable happy Buddha  on the front. There’s satisfaction for a variety of urges but nothing I look at satisfies my particular urge. I turn to the refrigerator where there are pineapple cubes, blueberries, M & M’s, dairy free vanilla yogurt, real gouda as well as dairy free gouda cheese, bread that’s been there for over a month and always a piece of left over chicken. There is nothing that I want and wanting without getting is infuriating.

 

Before cancer when I was 60 pounds heavier and could eat anything I wanted, I would try a bit of everything — it distracted me for a while but I ended up over eating  and was still not satisfied. I read that when you’re in the mood have something to eat — as opposed to actually being hungry —to think first whether you want something sweet or salty, hot or cold, chewy or crispy and when I go through the list, there’s still nothing that I really want. I can’t eat so indiscriminately anymore because my delicate stomach will backfire so I am left with this unidentifiable feeling of discontent that seems more intense than ever because I can’t distract myself with food anymore.

So I’m continuously confronted by this wanting feeling that never quite gets what it wants and i find myself both annoyed and relieved that I can no longer use food for comfort. It is an upsetting loss of a coping mechanism  —but — it wasn’t one that was really working anyway so technically it’s not really a loss. What’s frustrating is that I don’t have an adequate replacement.  Food for comfort was used to try to ease some of the tension, but my eating restrictions took the fun out of food. It is, however, also a  hidden blessing because instead of it being about food — it’s about the discontent that I tried to hide with food. The blessing is about my determination to find the source of my discontent.

 

I’m at a turning point in my life. I stopped my agency work because cancer and covid came into my life and now it feels too unsafe to return to visiting patients in nursing homes. Nor would I want to because I want something new, whatever that may be. So now I volunteer by facilitating groups on zoom which is incredibly rewarding, but there is still that gnawing feeling eating away at me. I wish I could just be happy with what I have instead of pining for what I want. I believe there is a song or two on that topic.

 

I see now that I’m more like Sir Henry than I thought — unsuccessful attempts to satisfy my urge results with me being grumpy and impatient with my husband instead. I find ways to occupy myself by taking walks, but now it’s so cold, it’s not very pleasant so I walk up and down 5 flights of stairs in my apartment building. It exhausts me so I am not feeling that wanting urge for a while and that feels good. Sometimes I go shopping for the most perfect outfit but my closets are full and I don’t need anything: it’s not about need, it’s about wanting.

 

I look for solutions then remember the double edge sword in the tarot cards — there are two ways of looking at just about everything. I am disgruntled but I am also a seeker, which takes me on several interesting paths. My search for answers allowed me to nurture several satisfying interests such as writing and  sewing. Each allows me to express feelings that are buried deep inside me and for a little while it provides a great sense of relief.  I am also trying to get back into my meditation practice but when I meditate I can see how frequently my mind wanders, hiding the source of the urge. When I stick to it long enough and without falling asleep, I see that my inner empty vessel  gets a taste of love and light that comes from a higher source, and it gives me a sense of belonging for a while but later eventually that itch comes back, something not easily relieved.

 

I’m glad that this wanting keeps me on my search. I believe I am getting closer and the “proof of the pudding” is that I know from my gut that food is not the answer and that glorious feeling I get sometimes from a great meditation puts me on the right path for my seeking nature. I continue my search: to balance the wanting with having. I may be disgruntled but I am also a hopeful seeker.

My aunt Molly would always complain about different ailments, some she had, some she didn’t. Illness consumed her and it didn’t appear necessary to actually be diagnosed for Aunt Molly to complain. She did, however, enjoy reading and she knit for everyone she knew. Her heart was big and open, loving and caring about everyone.

I think of her now because here I am in remission for almost 2 years, and I don’t know what I’m supposed to do next. Cancer took up the last 3 years of my life and everything I was doing before cancer ended, so I am faced with the task of moving forward, but to what is the million-dollar question. It’s hard to look for fulfillment when annoying periodic side effects is a constant companion, so I find myself being consumed with illness like my dear Aunt Molly. Yes, things happened after treatment ended to keep my attention on my body and I still have the worry about a compromised immune system and that cancer will return, but what I am noticing is that illness fills the void. If I didn’t have that worry hanging over my head, what else would I have? It fills my days with doctor appointments or well needed rest, and I don’t have time to think about anything else. It takes up a lot of attention and it gives me purpose. It fills the void, but it also keeps me in this familiar stagnant spot.

 

It occurs to me that maybe I am only seeing the void as a place of permanent emptiness, and I don’t always trust in my ability to fill the void with a new life purpose. I also find myself looking at paradoxes, which helps me see things in a broader perspective. When I think about the rest of my life, I become anxious and fearful so asked Siri “What is the opposite of fearful?” And the answer was, “Boldness.” I loved hearing that because when I reflect on my life, I see I both. I didn’t do bold things like sky diving, though that does sound like fun, but my life has been filled with boldness in finding my unique life path which is far from the traditional one I grew up with. I am bold but I am also fearful. Additionally, I don’t always have faith in myself and my ability to fill the void with meaning, so I again asked Siri who said that the opposite of faith is doubt, another paradox. Both sides of the paradox have merit as I often lean toward the negative. I recently responded to an invitation to my niece’s baby shower with, “I’ll be there if the other shoe doesn’t drop.” I am definitely a “glass half empty person” which weighs me down, but perhaps I can also see it as a challenge.

 

Maybe the void can also be looked at in terms of opportunity. Perhaps we were born with an empty shopping bag and our mission in life is to fill it with adventure, knowledge, love and all its’ opposites and our task is to find balance in all the challenges we face. Maybe fear is not a failure or a shortcoming but instead a reminder that I am only looking at half of the picture. Instead of being paralyzed by fear I can remember that there is another side to everything and that my task is to have faith so I can access the boldness that exists within.

Paradoxes are a matter of perspective. I am reminded of the parable about five blind men and an elephant, each feeling a different part of the elephant and sharing their discoveries. “An elephant is like snake.”  “No, it’s like a tree trunk.” “A rope.” They see their partial discoveries as the whole truth. We all fall into this trap with our opinions and viewpoints. Perhaps my Aunt Molly’s view of life was limited because she wasn’t able to fully appreciate a broader view of her life’s gifts. The moral of this parable serves as a reminder that if we expand our thought process and see a wider view of “what is” our satisfaction with life will be greater.

 

 

There’s an old photo of me by the white picket fence in front of our house when I was
about 5 years old — I wore a pair of peddle pushers, now known as capris. They were black with pink designs. I thought I looked glamorous and the pose shows me looking
proud, no thoughts other than I believed that I looked great. Later on in life, my body
image ranged from uncomfortable self consciousness to eventual self acceptance. I
enjoyed decorating my body with fashionable clothes and jewelry so it could take me
where I want to go, with style.

My body took me on to trains and busses to work where I was fortunate enough to have
a meaningful career. It took me to movies, parks, and beaches, to the Fillmore East and
Madison Square Garden where I saw the best concerts — Santana, Moody Blues, The
Doors, just to name a few. It was an amazing time, no thought other than to sit back
and enjoy. My body took me to Watch Hill, a peaceful beach at the tip of Fire Island in
New York. The Long Island Railroad to Patchougue, followed by a walk to the ferry,
ending up in a mostly empty beach where we rested and sunned our bodies until our
skin became dry and brown, which at the time, we thought looked great. My body took
me home where I enjoyed the comforts of warmth, safety and good food. My body took
me to the Wailing Wall, The Great Wall of China, and inside the old city walls of Janina,
Greece where my mother’s family came from.

My body also took me to bookstores and lectures where I learned about eastern
philosophy and that there was more to life than just my body There was Universal
energy, karma, and meditation but at that stage in my young life I wasn’t ready to look
beyond my body and the earthly pleasures I was enjoying. I embraced the spiritual
teachings of Krishnamurithi and Ram Dass anyway but I wasn’t ready to embrace the
practice — at times it felt like more of an intellectual exercise than anything else. I was
living in what Ram Dass referred to as the Ego state. I was busy establishing my place
in the world with my career, my home and financial security, all of which gave me much
pleasure.

Then cancer came and both cancer and treatment ravaged my body. I lost 60 pounds 3
teeth, and all my hair. After treatment, my stomach was on fire for a few months until I
found out the right foods to make my body happy. As it turns out, making my body
happy is easier said than done. Exhaustion is a frequent physical state that I have
become very familiar with, and each time I go to doctors for post cancer check-ups, I
find more things wrong. Osteoporosis turned my bones into waffles, I may need
cataract surgery soon, physical therapy is a constant routine to bring my strength back.
Covid shots didn’t take and neither did the shingles shot, I’m immunocompromised, for
how long, I don’t know but with ongoing Covid variants I am always being careful, and
overall I am more aware of my body and what it needs then ever. When I look in the
mirror there is a new version of myself that I don’t recognize, though I am pleased to be
thin for the first time in my life. More recently, shingles happened despite the
immunization shots, immediately followed by a fall that resulted in a fractured shoulder,
a very incapacitating experience.

As I sat, taking inventory of all these changes I received a call from my gynecologist’s
office and learned that at 70 years old, my calcified fibroids grew. It made me think of
horror movies where the monster finally collapses, the victim rests easy only to see the
monster rise again, wreaking havoc.

Yes, after cancer has been a bit like that. As I went through a mental list of all these
ailments, I sighed with exhaustion and blurted out, “I am not comfortable in my body.” It
was an epiphany! Who is saying that? The very fact that I said those words implies that
the “I” in my sentence is an entity that is separate from my body. The “I” is not my body.
It’s existing in my body, but then if “I” is not my body, who is it? What is it? Ram Dass’
words then come back to me with new meaning. The ego is the body, the part of me
that lives my life. The part of me that says, “I am not comfortable in my body” is the soul
that is eternal and it is all connected to Universal energy, Consciousness, God, life-
force, it has many names. It becomes more clear to me: Ego, Soul and Consciousness
co exist and is connected — a vision of twisted pretzels with 3 connecting loops comes
to mind. The soul or higher self is an eternal being having an earthly experience but as

humans we are here to experience and learn and we receive guidance from not just our
higher self but from angels and guides to help make our earthly experience be one
where we learn many lessons. When we are able to connect with our higher self which
is connected to Universal energy, it is an existence that reaches far beyond our body.

As it turns out, while cancer was taking away it was also giving. I lost my sense of
physical well being, and my body is weaker and more vulnerable. My oncologist told me
that cancer treatment accelerates the aging process but while it was taking away,
cancer also opened up new pathways, inward, to a place of self acceptance and
greater understanding of who I was, who I am, and how I am evolving. I believe I have
become more resilient. Pretty things and physical comfort is lovely but the satisfaction is
fleeting. Looking within is synonymous to looking beyond to the energy outside my body
to Universal energy, which is where peace exists, something that we are all looking for.

When I was diagnosed with cancer, in March 2020, I kept hearing “you got this” “you are the strongest person I know” and “you’ll make it through”. While that’s all true, It’s totally beside the point, because some of those comments were for the benefit of the giver to help make them feel less frightened at the notion  that the grim reaper can knock on our doors at any time. Additionally, their comments never made room for my difficult to deal with feelings like fear and vulnerability.

But truth be told, I am a participant of the “I can handle it” syndrome. I’ve been doing it all my life. As a kid in elementary school up until high school, I was teased every day of my school career, I was Zagha-nut because of my last name, Cock-eyed because my glasses had one normal lens and one coke bottle sized lens — a futile attempt to get my right eye working — and teased for just being different. I had to pretend every day that it didn’t bother me, until eventually I think being  upset sad, embarrassed and lonely was a normal way of life, but those feelings had to be buried because I couldn’t be vulnerable in front of  others.

So, I pretended nothing mattered, kept my nose in books as much as possible, and loved tv shows like Bewitched and My favorite Martian where the main characters had magic powers to make it all better. I didn’t have many friends because I didn’t know who to trust. Who will go back to the big bully and provide more fodder for their amusement?

Luckily, I went to a different high school than the other kids, so it was like having a fresh start. I was happier but trauma still lay underneath and I kept it buried as best as I could so I could fit in with the crowd.

Burying negative feelings became my way of coping, and it worked well for a long time. I became a social worker, married a loving man, made some close friends, and established a wide array of interests, one of which is  reading tarot cards.

 In my tarot studies, I found out that my life purpose card is Strength, represented by a woman taming a lion, our inner demons. It suited  me well because I certainly needed strength to get me through life. Carrying around emotional baggage is a tedious job because though  the unpleasant emotions are buried deep, life circumstances suddenly present a spurt of envy jealousy or hate which will arise just when least expected. Though I learned why those demons exist, they didn’t go away so I figured that the Strength card meant that my unpleasant feelings were to be managed somehow.

I faced cancer with the same “I can do this” attitude. I never had serious medical issues other than my vision, so after 5 months of aggressive chemotherapy followed by stem cell transplant, l figured that I would be all better and life would just go on as before.

I wasn’t prepared for the lost feeling of “now what?” I wasn’t prepared to be immunocompromised for so long, perhaps indefinitely. I realized how fragile I was when Covid shots didn’t work and not even the shingles shot. Shingles was a painful ordeal. Three dental implants since treatment ended, I found out my bones now look like waffles due to severe osteoporosis. And to make matters worse, at 70 years old, my calcified fibroids are growing, and I fell and fractured my shoulder, all — especially the latter — was an immobilizing experience.

I’m running out of the ability to say to myself, “I can do this.” I’m tired of being positive but I’m so used to burying my vulnerable feelings I’m numb with confusion. I want to cry but it only lasts for 15 seconds, then I get all positive again, but my positive energy is dwindling. Then I remembered the tarot card of Strength. I took another look and realized that taming my inner demons doesn’t mean keeping them in a cage. It’s about  opening the door and embracing my sadness because I am strong enough to carry it all.

 

It’s time to face my sadness and grief. I saw a great quote recently on Insight Timer, “The best way out is through.” I want to dig deep, find, and embrace my grief, I want to hug my inner child who’s probably angry at being ignored for so long. I want to be sad for all the awful things that’s happened because I think  hiding unpleasant emotions plays a big part in my life: it makes me feel incomplete. While massaging my shoulder, my physical therapist said that healing is best when I can let go and loosen up my muscles. I now believe the same holds true for emotions.  I want to move forward with my life as a more peaceful balanced person with a deeper understanding of how I embrace the tarot card of Strength.

“Pick them up and lay them down!” Why was he saying that to us? What was wrong with the way we moved?  Considering what he made us wear, it’s a miracle we walked at all. They were $3.99 shoes from Miles shoe store, the cheapest shoes in the cheapest store. We’re not holding it against him though, he was doing the best he could with what he had. But if he didn’t want us to drag ourselves around, he should have treated us better. He knew how important feet were, he was in the Army singing marching songs, and he always used Desenex Athletes foot powder, his miracle cure for everything. He even had a theory that it worked well on his balding scalp.

But back to us feet — we always felt sorry for Marilyn, our owner, because she didn’t know how to make him stop yelling. So instead of dragging us around, she would march like a shoulder, which she thought was what he wanted — it wasn’t, it made him angrier.  In all honesty marching did feel better than being dragged around in those tight, uncomfortable shoes. He always wanted us to have shoes with good support — all of the feet in the family are flat just like his were but he always blamed it on our shoes. He blamed our big butts on our mother, and she would frown with guilt because she knew it was true, but he would never take responsibility for us inheriting his flat feet.

So, Marilyn shuffled us along and in addition to yelling at her for dragging us around, he’d always yell at her to sit up straight. We consulted with back and she did indeed tend to have poor posture, we never knew why, but what a sight we were — a hunched over little girl shuffling along. She  often looked a bit sad. Eventually she found out that eyes weren’t working so well either, and doctors had her wearing an eye patch for a while and that made her slump and drag us around even more. People don’t always realize that sad or angry feelings have an impact on us — and not just feet, the whole body suffers. Go talk to stomach and you’ll hear an earful!

In fact, people don’t seem to realize the torture they put us through. They get so caught up in fashion they forget about comfort. Plus, they don’t seem to realize what an important job feet have. We’re pretty small considering all the weight we carry — well over 100 pounds of bone, muscle, fat and flesh and we are only about 10 inches long with little bones, tendons, and ligaments. We work all day long and are often stuffed into small shoes where we are crowded together in such a tight space it’s hard for us to do our job. When we’re stuffed into tight high heels just because it’s the fashion, it ends up hurting so much we have to send some of the pain to knees who  has their own sad story.

Marilyn put us in the flattest shoe that hardly supported us and our non-existent  arches. It hurt so much that bone spurs began to grow on our heels. In an x-ray it looks like a little spur sticking out of a cowboy boot. She bought us special arch supports and began to wear many different kinds of glorious sneakers, nice designs on the outside and all the cushioning that we love on the inside. It’s like resting on a cloud and we sigh with relief whenever she puts them on for us.

These days she treats us well, massaging us and taking us to a podiatrist regularly. She’s careful about the shoes she buys us and in return we walk tall and proud because our owner loves us. Soon, she’ll take us to the beach for our favorite activity of standing by the seashore letting the waves run over us feet while the cool wet sand underneath us drifts towards the ocean causing us to sink deeper into the cool wet sand. What a glorious feeling when the new sand comes up along with the waves and buries us even deeper into the sand until we feel like we are a part of the beach. She does this until we are buried up to the ankles  then gently pulls us up out of the sand, and proceeds to march along the wet sand, picking us up and laying us down.

My dad was a devoted family man. He worked 2 jobs to support his 4 children and took us on vacations and outings in his Chevy station wagon. He had itchy woolen blankets for us when it was cold and in the winter, we huddled under them. He did all the repair work in our house and the night before he was to take down the old wallpaper, he let us write all over the walls. He was funny and creative, but he was also a frustrated angry man who, as charming as he was, there was a dark side of him too which I, along with my 2 older sisters were victims of.

 

He was the 5th of 8 brothers in a Syrian Jewish household where sons were cherished, and daughters were not. I was the 3rd daughter and when my brother arrived 3 years later, everyone told my parents, “Well you finally hit the jackpot,” proving that daughters are inconsequential.

 

His poor attitude toward daughters was normal behavior in this male dominated ethnic group. He and my uncles would joke about how they kept all their daughters in line with a firm hand. Though he joked with them, his disappointment and frustration were clear. He had 2 mantras: the one I hated most was, “I should have stayed in the Army.” I took it very personally, it was my fault that he was so miserable, but then I realized that as the 3rd child, how could it be my fault? However, it did not matter — I was miserable because my father was even more miserable.

 

My father renovated the attic and my 2 older sisters, and I slept up there. There was a wooden staircase, and we kept our shoes at the foot of the steps. In the morning, my father would wake us up with his second favorite mantra, “Eat sleep and go to the bathroom. That’s all you’re good for.” As he yelled out our wake-up call, he threw the shoes up the stairs only to hear them clumping down noisily. This was how I woke up every morning until I was 18 years old when I left home to do some repair-work on myself, in my new life.

 

Over the years my father continued to work hard as a mechanic. He loved his work and was at his best when he was figuring out how to fix something, though it never dawned on him that his relationship with his daughters needed fixing most of all. His creativity was my link to him as we both enjoyed making things out of something else. He took scraps of metal from his workshop and made beautiful miniature milk cans, hookahs and whatever else came into his mind. I would take old neckties and make bags, pillows, and scarves. We enjoyed showing each other our creations.

 

 

My father retired at 70 because his memory was failing: he forgot how to do things that were always second nature to him and was diagnosed with Alzheimer’s disease. He was on medication for a while but eventually it just stopped working. He became vulnerable and sad.

 

He was a dutiful father and in turn I was a dutiful daughter, doing what was needed, but with emotional detachment. As I was doing my own repair work, I began to see him not only as the father who was awful to me, but as a man who was both succeeding and struggling through life, like many of us. My emotional detachment faded and made room for compassion because I knew if he saw who he became, a victim of Alzheimer’s disease who needed help with about every activity of daily living, he would hate it. I felt sorry for him, but in truth I liked his sadness because it made him more gentle.

 

The last 6 months of his life he had pneumonia which quickened his decline. He became unresponsive in a semi-comatose state. I would tell him frequently that it was OK to go because we would all be looking after Mom. I hated seeing him turn into a breathing but otherwise empty body. One day I sat at his bedside and told him all the awful things he did to me and how it damaged me so much, but I spent years trying to undo the damage and I am ok now and no longer hate him. I wasn’t sure if I forgave him, but it made me feel better and I believed a part of him heard me.

 

On the last day of his life, he was sweating with every breath, and making noise as he breathed. The nurses called it “the death rattle.” I have been telling him that it was ok to go for a while, and he still worked hard to stay alive. When I realized this, I said to him, “Dad, I’ve been saying this every day and here you are, still breathing. It’s almost like you are trying to tell me, “Don’t give up.” At that point this unresponsive, semi-comatose man winked at me. His wink opened my heart with a sudden rush of warm loving energy that rushed through my body, and we had this beautiful moment together, of unconditional love and forgiveness that lifted sadness and anger out of my heart and changed my life forever. I spent the rest of our visit wiping the sweat from his brow, feeling a deep overwhelming love for him. When visiting hours were over, I kissed him and thanked him for our moment together and about an hour after I got home, we received a call that he had passed.

 

Years later I still think of his wink, and our moment together and know that it did indeed change my life forever. Love and forgiveness enabled me to be more content with who I am, as the harshness of self-hate and feelings of inadequacy were softened. Our experience led to a state of higher consciousness for both of us.

 

I still think of his message because I have a habit of procrastinating especially when I begin new projects and this time in my life is no different. I am currently struggling with re-creating my life after cancer, stem cell transplant, and being immunocompromised. The fresh energy and relief of being in remission gives me a “new lease on life.”  It also contributes to subtle pressure I impose on myself to make every moment count. The pressure to be productive and long-standing procrastination makes me numb with anxiety, but there is still part of me has faith in myself — I will not give up.

It was somewhere in the 1990’s when my husband and I bought our first Garmin navigational system. We plugged It into the space for the cigarette lighter (now called the USB port). We typed in the address, followed directions and it was ingenious. When we made an error, the voice would say in what I perceived was a bit punitive, “Rerouting” and it put us back on the right path. It made travel so much safer except when we were following directions to take us to Nassau Coliseum to see Neil Diamond in a concert. It took us to a dead-end road, and we had to find our way back and get directions the old-fashioned way — we had to ask. I lost trust and enthusiasm for the Garmin and had mixed feelings about navigational systems for a long time after. It was so easy, but I no longer trusted its’ accuracy. I still studied maps and found myself challenging the Garmin, I could do a better job, I insisted. Challenging the Garmin was getting harder because in truth, following its’ directions was less stressful than map reading. My husband would tell me, “Trust in the Garmin” with his hands together in prayer.

One summer weekend I was going to my favorite yoga retreat in the Berkshires and decided to use the Garmin, my husband’s mantra echoing in my brain. The beginning of the journey was easy, turnpikes and thruways and so far, it was not a problem trusting the Garmin, but then for the last part of the journey Garmin was leading me along small country roads with farms and huge fields against a brilliant sunny, blue sky. On one hand it was a beautiful ride, but I had no idea where I was, and I was too frightened to trust the Garmin. I was anxiously picturing myself getting stranded forever in an empty field. Trust the Garmin? I don’t think so.

At that point I believed I had no choice but to follow the Garmin. I had to get to the yoga retreat, so I followed the directions. It was a tremendous relief that I didn’t get lost and the only unfortunate occurrence was that my anxiety level was so high that I couldn’t appreciate the beauty of the country roads bringing me to a place of rest and relaxation.

That experience taught me a lot about myself. I felt so excited and courageous to be making this trip on my own, but I was also so frightened and worried that Garmin will lead me to another dead-end road in the middle of nowhere. I know I was feeling panic but at that moment I realized that not only did I NOT trust the

Garmin, but I didn’t trust myself or anyone else either. I am, along with my family of origin, skeptical. The trauma of the dead-end road on the way to Nassau Coliseum had a permanent place in my memory bank of catastrophes.

It did get me thinking, though, about trust and how hard it is to come by. It’s one thing not to trust directional systems, but a lack of trust in myself and others limits the possibilities of true friendships and creates a dark cloud on life.  I am filled with self-doubt as well as doubting the good intentions of others. I remember driving in the car with my father and if a police car had its’ siren blaring and they were speeding past us, he’d always say, “They are just going on their coffee break.” My parents didn’t trust others, so how could they instill trust in us? My mother was always so nervous about taking chances that when I’d go out for a bike ride she would plead, “OH PLEASE, be careful! Do you HAVE to ride the bike?” She made me so scared I doubted my own abilities and that extended far from riding a bicycle.

Lack of trust in myself and others makes me think back to Erik Erikson’s psychosocial stage of basic trust which we establish as a result of the quality of the response we receive from our parents when we are babies — my scared mother produced a scared child and so I didn’t have faith in my own abilities. Self-doubt accompanied me throughout my life.

I don’t think self-doubt ever really goes away, but when I moved out of my parent’s house at 18 and put myself through college, became a social worker, got good grades and accolades from my teachers and supervisors, saw some of my clients reach goals and live productive satisfying lives, when I learned to drive with vision in one eye, and saw life lessons in my cancer experience instead of feeling sorry for myself, the self-doubt became less important because it became balanced with the joy of success.

I learned that each time we are able to move forward, albeit fearfully, we experience success simply because we fought and won a round with the resistant part of us. Each time we take a chance we become more pleased with ourselves and that changes our self-image. I still get scared but I’m learning to take my fear with me as I move through the uncharted territory of my future.

When fear looms over me and I get the feeling that I can’t do things, that is where the learning experience begins. I try to face my fear and self-doubt by remembering all my successes and I remind myself that I have become an insightful capable adult. It feels like the grown-up wise me is sitting with my scared inner-child me encouraging, loving, and reminding myself that I can do this. The endeavor itself could come out great, or need improvement or perhaps it wasn’t even successful, but taking chances gives us adrenaline and the ability to see what needs to be modified.

I still use a navigational system however now it’s iMap. I am quite dependent on it, but I try to know beforehand what general direction I am going in. I notice that the system now gives choices of different routes, and they don’t scold when we make a wrong turn — I no longer hear “Rerouting”. Their silent redirection is kinder, and the choice of routes feels empowering. It seems as though as I became kinder with myself, so did navigational systems

Growing up in our house on East 9th Street in Brooklyn, we had a desk that fit in the corner of our dining room – a caddy corner desk of white oak that I enjoyed sitting under. I often set up my family of dolls under the desk. One day I was fascinated by an old broken rotary phone, probably made from Bakelite. I looked at the shiny black shell and wondered how it made the phone work. As any curious kid would do, I pried  it off. Underneath were gears, bells and whistles. I realized that the outer shell wasn’t what made the phone work, there were so many other parts hidden inside. The outer shell was simply protection.

 

As I got older, the image of that phone stuck with me. I began to notice that human beings are like that old telephone — we have our outer shell, our bodies that we adorn with fashionable clothes, and our hair and make-up that we spend countless hours protecting, as if we were the dolls we played with as little children. But the reality is, like the phone, the outer shell is only the casing. The protection. Underneath are our own gears, bells and whistles that make up who we truly are, and what drives us. Our feelings, goals, needs, and desires. Everything that makes up our authentic selves.

 

I have always thought of myself as an introspective person with an outer shell that I enjoyed adorning with nice hair styles and colorful outfits, but I also strived for a  peaceful existence. I educated myself, attempting to be self aware, to understand my feelings and how they affect the way I live. Helping others both in my personal and professional life has always been important to me. I thought my life was leading in the right direction. I learned about Eastern philosophy and Buddhism and began to practice meditation. I was aware of how my unresolved childhood issues affected my self esteem and how that limited my ability to go beyond my self imposed limits. Even though I believed I was self aware, I still buried my unpleasantness under a blanket of niceness. On the outside I appeared to be  wise, fashionable, and mild mannered while on the inside I was self critical, judgmental and envious. I felt I was reasonably successful at hiding that dark side even from myself —  and i was confident that no one knew how sharp those edges really were.

 

Unpleasant feelings can eat away at us. In order to cope, some of us  focus on our physical appearance, excessively shopping and exercising, while others try to eat away their fears. Alcohol or drugs  can also hide what we feel inside. We blame others for making us feel bad, we become envious when  someone does something great. We put people on pedestals and then look for ways to knock them back down. We’re intimidated by someone’s greatness making us feel terribly inadequate. We can fool ourselves into believing that something is true or false, ignoring reality and insisting that what we believe is The Truth. In that way, we don’t have to look any further, specifically within ourselves.  We resist doing this because knowledge of what’s inside requires responsibility and action. It turns out that understanding these ways of hiding our feelings is a starting point to growth because the question that eventually comes to mind is, “What are these defensive behaviors trying to hide anyway?”

 

The answer started becoming more clear to me when I was diagnosed and treated for lymphoma.  Having a life threatening illness tore all those defenses apart. During the diagnosing stage I was anxious, during the treatment stage I was scared, and the end result is that having cancer, and simultaneously trying to protect myself from covid left me feeling fragile and vulnerable. Being faced with the real possibility that I could die made my every-day neurotic worrying about  my perceived inadequacies a minor issue. I still feel raw and exposed, my outer shell cracked like Humpty Dumpty.

 

 Thinking about the end of life takes precedence over everything. Am I ready for life to be over? What did I accomplish? Was it enough? Do I want more? While part of me didn’t want the struggle and discomfort of treatment, another part of me, an instinctual force, moved forward anyway and I realized that is what resistance is. Both desire and dread existed at the same time inside me, a push/pull emotional conflict of wanting to move forward  while simultaneously fearing the unknown. It was paralyzing. This conflict of opposites helped me to see that this also occurs in other parts of my life:  wanting more but  not feeling good enough. This little war within myself, the resistance, was illuminated in my life/death situation. Feeling inadequate is where my sadness comes from and there is no amount of fancy clothes, good jobs, great vacations, or new skills that can cover up these dark feelings. We can look good on the outside but the inner workings of our own bells gears and whistles can still be out of order, just like the  broken telephone I played with as a child.

 

 With treatment completed, I was left to rebuild both my outer shell and my inner gears. I had to regain my physical strength and understand  a whole new set of emotions, needs and desires. My old life and way of being no longer existed, I was left face to face with what I saw as my inadequacies. The heaviness from unresolved issues left me feeling too scared to move on, but after facing cancer, I had new resilience. Low self esteem, jealousy, and shame are now easier to examine. They are not nearly as daunting as they used to be, but I’m still working at finding my way forward. That old expression, “You can’t go home again” rings true because my old path no longer fit.  Being 60 pounds lighter and having totally different hair makes me feel like more new beginnings are also in order and seeing resistance more clearly gives me the insight that enables me to make more choices.

 

I don’t want to hide any part of who I am. I remember an essay in “All I Really Need to Know, I learned in Kindergarten” by Robert Flulghum where the author watched neighborhood kids playing hide and seek. A child hid under a pile of leaves near his window and while everyone was enjoying the excitement of finding and seeking, he remained hidden. The essay ended with the author advising this child, “Get found, kid.”  This has resonated with me for a long time because I see how my pride has kept my sadness and feelings of inadequacy hidden, so in keeping with my need to be more authentic I need to identify this dark side.I need to acknowledge its presence. It’s certainly not all of who I am, because as sad as I feel at times, I also feel love, joy and a desire for greatness.

 

I am learning that my resistance is working when I feel like “I can’t” — that fear disguises my desire, and brings on sadness. Sometimes I don’t even know what I want because my desire is so overwhelmed  by my defenses. They put up a facade of, “Well, it’s not important.” It’s like the shiny red apple that looks delicious but the inside is rotten. 

 

I am learning, therefore, that the idea is not to hide but to get to know more about my darkness. My childhood wounds left me scarred.  When I grew up, and evolved into a beautiful capable being, my scars remained buried, holding me back and affecting how I feel about myself. I am learning.

 

I acknowledge my resistance by asking that part of myself questions, as if I’m trying to get to know a stranger. It helps me create balance.  I have learned that we can lovingly embrace our wounded inner child and show him or her that we are capable adults now and combine the authenticity of our childhood with the wisdom of adulthood, so we can move forward in life with joy instead of trepidation.    

 

The road to an honest look at myself is ongoing — my goal is to know all of me, inside and out so I can celebrate my wholeness with the knowledge that I am perfectly imperfect.

 When I was a child, the NYC public school system had something called release time on Wednesday afternoons. We would leave school at 2:00 and go for religious instruction. I was in the second grade when my mother arranged for me to go to a Yeshiva for release time.  People  from different parochial schools would come to pick us up and take us to our respective school. My second grade teacher inadvertently put me with a group of kids going to St. Edmonds.  When I got there, I realized that I was in the wrong place but I was fascinated at all that I saw and heard, so I stayed. I sat in the classroom with the other kids, hypnotized by the dramatic look of the nun in her long black robe covering everything but  her face.  I learned something that began a lifelong interest that went beyond the religion I was raised with.  As the nun walked up and down the aisle, her black robes flowing around her gave the appearance of floating, as she explained that we all had a guardian angel by our side all the time. I loved hearing that, it was such a comfort and though I never went back to St Edmonds, I never stopped believing in angels either. 

     When I got home I excitedly told my mother, “Mom, did you know we all have angels by our side?”

     “Where were you?” she said with alarm. Was she more upset that she didn’t know where I was or was she upset that I stepped out of our tightly bound Jewish circle to learn something about “Gentiles?” It seemed that a certain fear or consequence existed if one drifted out of the Jewish circle, maybe there was a fear of exposure to the rest of the world. I didn’t understand that kind of fear because I loved the dramatic flair of Catholic traditions and rituals. They have the beloved Santa Claus, festive Christmas trees and decorations, and now they also have angels to guide us through life!
     

      Over the years I read books, attended lectures, workshops, and trainings where I came to believe that we all have angels and spirit guides helping us live our best lives. In a book called “Your Soul’s Gift” I read that before we came to this life we established a contract with our soul family on what we want to learn or accomplish in this life. Our angels and spirit guides help us along our life path by gently trying to guide us, mostly without us even knowing about their existence. Some of the ways they come through is when we find ourselves coming up with a plan or fantastic idea that we wouldn’t ordinarily think of. Some messages come through with dreams. In an article entitled “How Dali, Einstein and Aristotle Perfected the Power Nap”  the author, Drake Baer, writes about how in those first few moments of sleep, an in-between state of being partially asleep but still conscious exists where poets, inventors, and artists often receive the inspiration they need to move them along in their endeavors. Thomas Edison has said that his mind was often flooded with images when he was half awake.  These power naps are called hypnagogia. In this in-between state our brain waves are in between alpha, which occurs when we are conscious and theta, a deep relaxed state where subconscious thoughts and ideas are more accessible.  Dr. Milena Pavlova, a neurologist, states that the combination of these brain waves give way to “unusual visions and sensations.” Are they subconscious thoughts? Messages from our higher self? The only thing I understand about quantum physics is that everything is energy and it is that energy that connects us to each other and to the universe. Like the joke about the Monk at a hot dog stand, “Make me one with everything.”  Part of that connection includes our guides, angels and higher selves. 

 

     Though there were several occasions in my past where I believe I had divine intervention, the most significant incidents came when I was diagnosed with cancer. I believe I survived not only because I had the best care, but I also had the help of my guides and angels. 

     In July 2019 I started a part time job as a social worker in a hospice agency. As part of the application process I needed to see my doctor to determine if I had antibodies for measles and mumps. After the blood test I asked my doctor, “By the way, what is this constant gnawing pain?” Without hesitation he sent me for a sonogram where we discovered that the lymph nodes at my groin were enlarged. I then had a Ct scan followed by a referral to an oncologist. Wide-eyed, shocked and nervous, my internist tried to reassure me by saying, “ Don’t worry, my dear, I see many patients who survived all kinds of cancer, and they live full, happy lives.” I wasn’t reassured but I took the referral and moved on.

 

     I wasn’t sure if I wanted to continue working after retiring from my full time job as a public school social worker, but I  wanted to work in hospice because 14 years ago I had the honor of being with my father during the last hours of his life and we both experienced a beautiful exchange of unconditional love and forgiveness which was profoundly healing. It made a big difference in my life and I wanted to help others have this sacred experience so I became a hospice social worker.  In retrospect this was, perhaps, the start of divine intervention because if I didn’t apply for that hospice position, I would probably have ignored the pain till other symptoms appeared because the pain started off as being annoying but not debilitating. This is when the doctor visits began.  I had  many blood tests, Ct scans, Pet scans and more, my anxiety increasing each day alternating with the insistence that it was nothing. Then, other symptoms began to appear that were  too intense to ignore. I lost weight, was getting night sweats that drenched my night shirt and went right through to the sheets, and an itchy rash that looked like hives that would mysteriously come and go. I went to a cancer center in Brooklyn and was assigned a doctor who took over 30 vials of blood to rule out different disorders. He sent me to all sorts of doctors to try to rule out infections or allergies. When a Pet scan showed cancer cells in my lymph nodes, the report said that there was a “probable” diagnosis of lymphoma but more tests were needed. The doctor said the cells were very small and we should wait six months and test again before definitively diagnosing. I went along with that plan because it reinforced my denial. This doctor was thorough but with each test my cancer was growing, unbeknownst to me as I still tried to convince myself that it was some minor annoyance that would go away.  I carried on as if nothing serious was happening. Though this doctor was trying hard  to figure it all out, he seemed to be lacking compassion and concern. This was more like a puzzle for him to solve. 

     Two months later, my lymph node grew to the size of a brussel sprout so I made another appointment.  On my next visit I was told that my doctor was on medical leave and he was replaced by a wonderful doctor with the biggest heart. Another stroke of luck for me, if luck is something to believe in with this very unlucky situation. Perhaps my angels found a way to help my thorough but detached doctor get the help he needed thereby paving the way and placing this new doctor in my path so I can get the help I needed. This wonderful doctor saw the diagnosing process was taking too long and told me, “If you were my mother, I’d want you to have a second opinion.” He then arranged for me to see an oncologist who specializes in lymphoma at Memorial Sloan Kettering.  

     While I was filling my days with more tests then I can keep track of, denial and repression, my favorite defense mechanisms, enabled me to continue working part time. I even went to Japan with my sisters. When my denial finally did wear out, I realized how frightened I was because this was not turning out to be an infection that I can just take antibiotics for. I became scared and  anxious, and it became difficult to attend to the needs of my hospice patients. There was a woman I used to visit  in an assisted living facility who was in her final days. Another bed was put in her room so her daughter could spend these final moments with her mother. When I sat with them, the reality of saying good-byes upset me so much, I couldn’t hold back my tears. The daughter was lovingly holding her mother’s hand then stroking her face and talking to her softly, as I did for my parents. I kept thinking who will do that for me if I am dying? I have a husband and close family and friends who were caring for me but sitting with a dying person requires a selflessness that is hard to come by. I couldn’t provide support because I needed some myself. Oddly enough I also facilitated a support group for cancer patients at Gilda’s Club and stopped when I was diagnosed.  I gave up my role as helper and let myself be helped as we cried together at my last session. Finally, on March 26, 2020, I was officially diagnosed with stage 3 angioimmunoblastic T-cell lymphoma. It is an aggressive and rare form of T cell lymphoma and by the time it was diagnosed cancer had spread to lymph nodes in my chest and neck, my bones, and I had a mass on my skull. 

      I’m amazed when I think about the course of events that  led me to this diagnosis: a well-meaning but inadequate doctor conveniently being replaced with a compassionate doctor who has a golden heart and referring me to Sloan Kettering.  Everything fell into place so easily to get me the help I needed at the best place possible. This, I understood was how our angels and spirit guides help us. When it feels like serendipity,  like everything is falling into place so easily, it is perhaps our angels and guides watching over us and giving life events a gentle nudge in a different direction.

 

   Once I was diagnosed I suddenly realized that I could die. It was a stunning realization that even working with hospice and cancer patients didn’t prepare me for. Am I ready to die? I had a satisfying career in social work where I helped a lot of people, and a loving husband, so maybe I’m finished, even though I never got a chance to enjoy retirement. I was 67 and only started collecting my social security pension when I was diagnosed. I wanted more payback before I died.  I was consumed with the thought that I was going to die and wondered if I wanted to, was I ready? Will the doctor’s treatment plan work? Will all the money I saved be spent on health care or will I get a chance to spend it on fun? Who will want my jewelry? The questions were constantly rolling about in my mind until I had 2 amazing dreams.

     There is so much literature and ways to interpret dreams: a Freudian view where our dreams are urges that we repressed in waking life, Jungian view stating that dreams help us create balance between conscious and unconscious thoughts and even more esoteric literature that talks about dreams being messages from our angels and guides. 

An article in mindbodygreen.com by an intuitive life coach, healer, podcast host, and writer,  Marci Moberg states “spirit guide dreams carry important messages for our healing, growth and alignment.” She further states “these dreams are designed to help us discover and align with our life purpose, recognizing what inner wounds are ready to be healed, to feel inspired and see a greater perspective on various challenges we are facing in our lives.”

     I don’t usually remember my dreams, unless they are unusual, and every once in a while there will be a particularly vivid dream that I can’t stop thinking about. One such dream was after I was diagnosed. I was on the Nostrand Avenue bus in Brooklyn, going toward Brooklyn College. Two big avenue blocks intersect there and Brooklynites call it “The Junction.” When the bus reached the junction, I looked out the window and instead of the usual buildings, a huge white crystal palace that sparkled and glistened was there instead. Everyone was getting off the bus and even though that was not my destination, it was so appealing that I wanted to get off as well. I woke up instead. I thought about that dream constantly, the metaphor of “The Junction” was interesting because I certainly was on a transitional path. The other thought was that death was closer than ever, I am not going to survive. When I realized that, I didn’t have the emotionally detached feeling when I learned about my diagnosis. I was scared, and not ready for my life to be over. I spent the next week with a variety of anxiety-producing emotions but I also realized that I would experience the afterlife which I read so much about in “Your Soul’s Gift” and in another book called “Conversations with Jerry and Other People I thought were Dead.” After-life was intriguing but I was uncomfortable realizing I was eager to experience that. Eventually I understood on a visceral level that I do not have control over anything and as frightening as that was, worrying and being scared wasn’t helpful — in fact it was making everything worse. I realized that though cancer can be deadly, my doctor felt certain that his treatment will be successful, and that I would be OK, but if I died then I’d experience after-life. I couldn’t make anything happen, and ultimately I believe that my angels and spirit guides are looking out for my greatest good and that helped me accept “what is” — whatever happened, it would be OK.

     Then, a short time after, I had a second dream which gave me relief and clarity. I was on a train platform with a little boy. We were walking to another train on another platform and I looked over to my left and in the far distance was the crystal palace I saw in the first dream. This dream gave me comfort because my first waking thought was that I have places to go, things to do, and because my palace is in the distance, I will have the opportunity. These dreams were from my angels and spirit guides — the second dream made all the difference in my treatment because now I was sure I was going to survive. My dreams enabled me to go through treatment calmly because treatment was now just something I had to get through.

 

     My treatment for cancer consisted of 6 rounds of chemotherapy every 3 weeks and in between a clinical trial which was in the form of a pill. I was being treated every day for 5 months, then I had a stem cell transplant in August 2020. In preparation for the transplant, a catheter was put into my chest which stayed in place for the next month. All my medicine, blood transfusions and more went through the catheter. I had more chemotherapy, then the baby stem cells were put back into my blood, also through the catheter. 

     Throughout every part of my treatment I never stopped being impressed by the  compassion and care every MSK staff  member gave to each patient. It was during the height of the Covid  pandemic and patients weren’t allowed to bring anyone with us so we found opportunities to chat with each other in the elevator and waiting rooms. We all felt comforted by the care we received and I believe MSK should be a model for all medical professionals.

 

      When it was time to have my new baby stem cells removed from my blood, the next amazing angelic visit occurred. During the process of removing the baby stem cells, my nurse discovered that the catheter was leaking and blood was all over my blouse. I was immediately taken to the surgical unit for repair. The nurse practitioner taped it up, and told me to come back the next day before my next appointment because if it was still leaking, he would have to restitch it. Because my blouse was drenched with blood, I went home in a hospital robe cut down to a blouse. The staff was apologetic but we joked that it was MSK couture. The rest of the day, I moved about tentatively, afraid of the catheter bleeding. When I went to bed that night I saw 3 ladies at the foot of my bed somewhere near the ceiling. The woman in the middle was showing me a sewing movement and the other 2 were leaning toward me with a caring gesture. They appeared as transparent white images, but clearly formed. I squeezed my eyes shut thinking maybe now I have cataracts, and when I opened them again they were still there. I watched them, curious and clueless but not afraid, and soon fell asleep. When I got to my appointment the next morning my catheter was indeed still leaking and the nurse practitioner restitched it, just as the woman who appeared the night before showed me.

     I think they  appeared to me to show me that they are there watching over me, helping me along the way. My angels never showed themselves again, but during my month long hospital stay, I often felt their presence. Stem cell patients are extremely vulnerable to infection so we all had our own rooms. Each room had a computer where the nurses would record whatever treatment they just provided throughout the day and night. Often I fell asleep before they left, so it wasn’t unusual to think the nurse was still there, but when I opened my eyes to look, the room was always empty. When I saw my empty room but knew I wasn’t alone, I was grateful because my angels and guides were watching over me.

 

    I spent this past one and a half years home regaining strength, giving my immune system time to grow, and staying safe from COVID. I haven’t felt the presence of my angels like I did while being treated, but I have become more aware of the significance of coincidences as well as my dreams. I am always comforted by the belief that no matter what is happening in my life, I am not alone — I am watched over, loved and learning life lessons along the way. 

     The worst thing that ever happened to me had the best possible outcome because I beat cancer AND I experienced the divine presence of my angels and guides. I love knowing that I have a future ahead of me and as I decide what direction I need to move towards, the presence of my guides continue to be a comfort and blessing. Their unconditional love is similar to what we give to our loved ones, as we do it without a need for acknowledgement. We do it simply because  the person we love needs it and that is how I believe it is with our angels and spirit guides. 

    Perhaps the mistake of ending up at St Edmunds so many years ago was not really a mistake and maybe unexpected paths in life turn into new opportunities and revelations for all of us. For me, it was probably the first time I stepped out of my tight family circle of Judaism and  family tradition and onto a path of my own choosing,     

Sometime during the spring of 2021 I felt a protruding lymph node  near my groin, the spot where lymphoma started over 2 years ago. I called my oncologist right away and they immediately took a pet scan — nothing. I was relieved! My doctor said he would repeat the test in October and eventually the lymph node disappeared until very recently, but this time it was on both sides. Another pet scan was taken and the Physician Assistant said the scans were perfect! I heard her words but I couldn’t react in any way. “You don’t look relieved,” she observed.

 

At that moment my mind went blank. I felt like a lion just let out of its cage and has no idea which way to turn. If the lion has been in the cage long enough, it might very well just turn back and stay there. For me, it wasn’t that I wanted to have cancer again, but I suddenly came face to face with just how much anxiety I have been living with. Up until this moment, my anxiety was directed at various body symptoms and if everything was “perfect” I wouldn’t know what to do with the complex feelings and physical sensations I was experiencing. My PA was saying I am well and I realized that I was not ready to embrace wellness. I have been in remission for one year but continue to have periods of total exhaustion, disturbing stomach issues and though technically I am cancer free, I still feel surrounded by an atmosphere of cancer. So when she noted that me I don’t feel relieved, I was baffled because instead of being happy, I was consumed with worry and now, the sudden realization of the weight of my anxiety. I had no idea what to do with wellness.

 

It’s an emotionally exhausting experience when there are questions and no answers. During the period of time when I was looking for answers to my symptoms, anxiety propelled me to continue my search so in a way my anxiety was useful. Once I found out it was cancer and my doctor expressed confidence that his treatment plan would be successful I was relieved. But now, like the lion out of its cage, wide eyed, looking to the right, left and straight ahead, all that exists is a vast empty, frightening space  and the anxiety which always propelled me forward was now an overwhelming mass of energy screaming for direction.

 

At that moment I was grateful for the need to wear masks, as I hoped she couldn’t see the variety of confusing emotions that were making me cry. The reality of the situation is that I am in remission, blessedly. I made it and though I am scared and lost with grief, it’s natural.

 

As I left her office, glimpses of light hearted relief crept up on me as the lion within trotted away happily into the unknown while I comforted my fears.

     My birthday is in July but on March 26, 2020,  my life  started anew when I was diagnosed with cancer. Learning to live with that is an entirely new life experience.

     I first began feeling unusual symptoms in July 2019 and it took over 8 months to diagnose, just about the same amount of time a baby grows to full term. Every part of my life that was safe and predictable ended, and from that moment on life became new and unfamiliar. It started when my oncologist told me my diagnosis:  stage 3 angioimmunoblastic T-cell lymphoma. He expressed certainty that I would respond well to his treatment plan, and I was relieved that there was an answer to all that I was experiencing. He was gentle and convincing, I trusted him immediately which was very different from my usual state of general distrust. He led me through 5 months of chemotherapy along with a clinical trial, followed by stem cell transplant  which involved more chemotherapy, and one year after to regain strength and let my immune system grow back to its full disease fighting state of being.

 

     Like a child going through the stages of development, the issue of trust vs distrust emerged again during my 2+ years with cancer. This time around I went for trust. Having full confidence in my doctor and his team was a first for me. I was brought up with the belief that everyone was out to make a buck at my expense, however having the best doctor in the best cancer center in the world was reassuring in itself. The oncology team was available to me every step of the way and they helped me to be able to trust that I was in good hands allowing me to let my guard down and be taken care of both emotionally and physically.

 

     When chemotherapy made me more exhausted than I ever experienced, I learned about the glory of total surrender. My arms and legs hurt so much during chemotherapy that ignoring what my body needed was impossible, so succumbing to the couch and letting the pillows and cushions envelop me became a most joyous experience. As I made my nest of pillows around me, it felt wonderful to listen to what my body needed. I felt my muscles go limp and my body became heavy on the couch. What a pleasant sensation, and what a wonderful experience it was to let go of everything and rest.

 

     When treatment was over, the major work completed, appointments  became less frequent and though the support was still present, seeking out my amazing doctors, nurses, and physician assistants who appropriately moved onto other people who need them right away, like I did, became necessary. I had a sense of loss when cancer treatment ended. I expected to feel rejoice because I pulled through but instead, I felt abandoned, and now there was an expectation to move forward, but to what? COVID made it too risky to venture out of my apartment, so I was more energetic with nothing to do, no one to see. Rebuilding my life at this stage is not as easy as it once was and even though cancer ended, it still feels like it is all around me, like a ghost lurking in the corner, waiting for an opportunity to show its ugly head again.

 

     I felt like a 7-year-old stuck on the rules of monopoly. It’s not fair! This was not the way life was supposed to happen. I was uneasy with no job to return to and uncomfortable with so many unknown factors, but I had no choice than to move forward onto the road to wellness. On the flip side of uneasy, however, was the vague notion to trust the process, which worked well so far. I made it through treatment and maybe my resilience will take me even further.

 

     After cancer, however, is a state of being all its’ own. So much was taken away from me — I could no longer return to my social work positions in assisted living facilities and hospice agencies because cancer came at the same time as COVID, and my weakened immune system couldn’t defend me. I was happy with my previous life, and though some people my age would retire, I am just not ready for the park bench, and still need to create a meaningful existence. Unfortunately, the ongoing rippling effect of COVID makes a career in the helping profession difficult for a person like me who is still immunocompromised, so the question I once asked myself as a teenager came up again: “What do I want to do with the rest of my life?”  Do I continue to be a social worker? Should I train for another type of position in the helping profession? Like a spiritual teacher or even a spiritual leader? I suppose I could do anything I want but trying to find the right path is difficult. Whatever I end up choosing for my next occupation is on zoom these days, but I still need new clothes as cancer left me 60 pounds lighter, which quite frankly is one of the few advantages of going through such  arduous cancer treatment. I now love passing mirrors and looking at my new thin  body, and my short straight hair. I feel like a whole new person with an open path ahead which leaves me with both eagerness and angst.

 

    What holds me back from rebuilding my life is the worry about a possible return of cancer. I never really thought about when and how I was going to die but now I wonder how long I have. Will I have enough time to do fun things with my money or will I spend it all on health care, and  will I spend the rest of whatever many years I have left fighting it off? The fear of cancer returning takes up a lot of energy leaving me with a tremendous amount of anxiety that I am still just beginning to see.

 

    In moving forward with my life, I saw that opting for trust has worked well for me so far in my life with cancer, and so I began to trust that opportunities for my future will present themselves when the timing is right. Thinking positively definitely feels better than my old mantra, “Aim low, avoid disappointment.” I felt that way for such a long time, but now that is far from my current state of calm and certainty. Surviving cancer made me more aware of my inner strength and resilience and I believe that was because I stayed in the present moment and complied to my body’s requests to rest and surrender. I didn’t force myself to be more active. I rested when I needed to, walked when I was able to. Acceptance was a new feeling for me because for the first time, I didn’t have to be productive, all I had to do was listen to what my body needed.

 

       Cancer also left me with the awareness that trying to control the uncontrollable is where anxiety comes from, and it uses up precious energy unwisely. Living in the moment is a meaningful way of taking care of myself. There is a force of profound energy when we are able to give in to our body’s needs — a feeling of aliveness takes over even in the most exhausting moments.

      Giving myself what I needed without question or judgement had a positive effect on my physical and emotional health. It gave me confidence. I feel thankful that I managed this ordeal with grace, dignity, and a bit of humor. By giving up the illusion that I have control, I now trust that there is a process that life takes us through when we are open to receiving it. I think that is what makes cancer survivors warriors.   

 

     Something shifted: managing and getting through a life threatening illness made me feel like the winner in a competitive game. I am proud of my strength. I didn’t know just how strong I was, but the fact that I persevered for such a very long time, from trying to find out what is wrong with my body to feeling weak and depleted from cancer treatment makes me stand up straighter with the understanding that I am a force to be reckoned with! Cancer made me a victim, but it also made me an adult.

     As I was looking at my upcoming appointments at Memorial Sloan Kettering, I noticed something amazing, something that has a constant impact on my life in both physical and spiritual ways.

     It has been one year after cancer treatment ended and there are all sorts of follow-up appointments. There were 2 tests to check my heart and lung functioning which ironically was scheduled on my mother’s birthday. It’s followed by another test and then an appointment with my oncologist to discuss all the test results. That appointment is scheduled on my father’s birthday.

       A coincidence, some would say, but seeing my appointments on those dates sent warm loving ripples throughout my body because not only did it feel like my mom and dad are watching over me but at that moment of realization, I was loving them too, grateful that they were there.

     I grew up in a Sephardic Jewish family where holidays were strictly observed. I followed all the rituals along with my family without question and as a teenager  I even worked in a day camp at a nearby girl’s Yeshiva. The Rabbi started to teach me morning prayers. I tried it for a short while, but it was all words in a language I didn’t understand and for me, following Jewish law seems like more of an intellectual exercise than a faith that came from the heart. While some people express a certain amount of pride because they follow the rules, it wasn’t a path that held any meaning for me so eventually I moved away from religion altogether and  spent the holidays enjoying wonderful dinners with my family instead.

    I began my  meditation practice in my thirties and as it progressed, I began to become acquainted with  a higher power that is separate from the religion of my childhood, and more recently I’ve been learning, like the joke about the monk who orders a hot dog from a street vendor “Make me one with everything,” that we are all connected and that the higher power lies within us. When we connect with this energy we are connecting with a Universal force:  it is a practice that has many beautiful moments when the path is clear and times when I feel stuck, like a bad connection when internet is down. I am understanding that it is all part of the spiritual path so when something like the coincidence in dates occurs I see it as a message: “we are here for you, whether you realize it or not, we are there, loving you, watching and listening.” When I am able to recognize this, the gates open and I am reminded that there is love and faith and goodness even in the darkest moments, and that when I am open to seeing it, it will be there. My mother and father are looking out for me, when in life it wasn’t as easy, but they never stopped loving me and with love comes forgiveness, the biggest blessing of all.

     I remember growing up in the 1950’s watching “Million Dollar Movies” — the same movie was shown continuously during the week and all day on the weekend. There was one movie that caught my interest involving  a woman who had amnesia, though I suspect that was a common theme for movies in those days. She kept asking, “Who am I?” in a melodramatic tone that many actors used at the time. I was so intrigued by amnesia because she didn’t remember anything  — no memories of anything sad, disappointing or upsetting in any way. There was a lot I wanted to forget, and wipe out of my memory bank. I was the third daughter of a rather traditional Sephardic Jewish family where sons were king, and daughters, though necessary to help with housework, were a disappointment. In addition, my vision problems created learning problems and so my parents took me to every eye doctor they could find to try to fix me. I could feel the disappointment and burden my parents grappled with, so yes, amnesia was quite  an appealing concept. I wanted to go around with the same blank stare and hypnotic tone that Greta Garbo had and ask, “Who am I?” so I asked my brother to hit me over the head with his baseball bat so I can get amnesia too. He complied with more of a bunt than his home run swing, however it hurt too much and ultimately it didn’t work.

 

     Not too many children in the 1950’s would ask that kind of question, and I certainly didn’t  — not until many years later — but there were many times where I would ask, “Why me?”  Why was I the only person with such bad vision? Why was school so hard? No one else in the family seemed to be having a hard time. I felt sad about all the burdens I seemed to be carrying around, but like a weary traveler who packed too much, I carried my bags around anyway. I didn’t know what else to do.

 

     Before my vision problems were discovered I remember being outgoing and bold. A boy in my 2nd grade class once made fun of me, so I stabbed him with my pencil. A little extreme, surely, but he stopped. I didn’t get bogged down by sadness, I reacted to both happy and sad situations with spontaneity, but when my parents discovered that I couldn’t see out of my right eye, they were overwhelmed with grief and guilt and I felt weighted down with their sadness, so my boldness was soon replaced with a heavy-hearted awareness that I was not good enough — which left me to feel like a wilted, trampled on flower that resulted with being a target for teasing by kids at school for years to come.

 

     By the time I was in high school, I became adept at looking and acting like other girls with pretty hairstyles, make-up and fashionable clothes. Deep inside, I still felt inadequate in every way but camouflaged it well by blending in.  When my English teacher gave us Siddhartha by Hermann Hesse to read, my world opened up and I began to understand that feelings ran deeper than just than happy and sad and that my sadness was part of a yearning that could not be satisfied with earthly wants and needs. There is something more to life and I didn’t know what. “Who am I?” became a question because on one hand I needed to blend in with others so I can be accepted, but on the other hand, I was beginning to understand that it’s possible to feel a sense of satisfaction that doesn’t come from being popular or looking good. It seemed to be less tangible but the inner peace that Siddhartha searched for was something that resonated with me. This is where my search began. 

 

     We grew up following Jewish law, my mother kept a kosher home, we observed all the holidays with  prayers that lasted for what seemed like hours  before enjoying a tremendous feast. As my parents grew older and went to Synagogue more often, I only saw religion as a set of rules to follow and it didn’t give me the sense of comfort that other people seemed to enjoy. For many years I read about meditation, tried to start a practice at least a dozen times but my mind was everywhere else and I couldn’t sit still. I read many books on Eastern philosophy, Krishnamurti was one, they were all interesting but none of them clicked with the heart felt longing of Siddhartha so I went about establishing a career in social work, married, traveled and continued to seek inner peace with therapists, meditation classes and having long conversations about life with a few close friends.

 

     In my search for answers I noticed that my spiritual growth happened naturally while I was busy living my life. After feeling accomplished in my career, having a life partner and a comfortable lifestyle, like Maslow’s hierarchy of needs, my spiritual needs, which had many years of ebbs and flows, started to evolve. Meditation became a satisfying experience, which led to prayer and comfort in connecting with an invisible life force that opened me up to receiving  loving universal energy.  The question of “who am I?” had a new answer. Marianne Williamson brilliantly shared with us that we are “a child of God” which gives me a warm comforting feeling because regardless of what I accomplished in this life, I am part of the loving energy that is there for us to receive when we look beyond our lifestyles.

 

     The ebbs and flows of my spiritual growth continues because when I was diagnosed and treated for angioimmunoblastic T-cell lymphoma, I naturally turned my attention to my body. For the first time in my adult life I was not working and did not have professional aspirations. Who am I if I don’t have an occupation, but  then I discovered that what I do is less important. I learned  that my career, who I love, having cancer, and many other experiences in life are all part of a path that brings me closer to my higher self.

 

    My childhood desire for amnesia makes me smile now because I learned that the life-long as yet unanswered question of “who am I?” has many answers, with one important one. While my accomplishments are part the foundation of my physical being, I believe that I am part of the universe, like a star, a rose, or a tree, one of God’s creations.

 

 

 

 

My mother’s ongoing weight issues led her to go to Weight Watcher’s when I was about 12 years old. Her sister’s, also overweight, made fun of her for paying money to lose weight. It was 1964 and Weight Watchers was a new idea in a blossoming weight loss business.

 

My mother was determined to be thin again, lost about 35 pounds, and worked at Weight Watchers as a clerk for many years after. Not only did she keep her weight off, a mandatory requirement for employment, she became consumed with everyone else’s. “Joan should lose some weight. Did you see the way she leaned on the dining room table? She is going to break it with all that weight.” “Phyllis would be so much more attractive if she lost weight.” “Marilyn, don’t you think you should lose some weight before your wedding?”

 

She developed a circus-like ability to guess anyone’s weight within 5 pounds. It was a very creepy skill as there were times when her eyes were zeroed in on my biggest body parts. I didn’t have to see her looking at me, I could feel it and it was a repulsive, invasive feeling  as she stared so intently.  I could hear her silent criticism, comparing my butt to hers, as well as her harsh judgement. I already lived with the feeling of not being good enough — I felt stupid and burdensome. Add fat and ugly to the mix, and together, these qualities didn’t make a very pleasant childhood experience.

      My father was also very critical of people who were overweight. He never had a weight problem but he would criticize others who did. “They should put people in jail for being so overweight.”

     “Really?” I asked, “Don’t you think that’s a bit extreme?” I wasn’t sure if he was kidding, but even if he was, it wasn’t funny.

     “It’s for their own good.” He responded. Was he talking about me? Upset and anxious, I took a handful of M&M’s and walked away.

     The interesting thing about my mother was that she clearly had this weight issue and knew just how overweight everyone at the table was, visitors as well as family, yet she would still put out lots of food, candy and cake and would insist, even demand, “Have more!” She wouldn’t stop until our plates were full again, till we were all stuffed.

 

     Needless to say, I was always a bit overweight. Coming of age in the 1970’s, a time of feminism and body acceptance, I insisted that this was me, take it or leave it. On a deeper level, I didn’t completely believe it and knew it was a defense because I would occasionally go on diets. I would try any other diet other than Weight Watcher’s, which was my way of rejecting my mother. Slim Fast was one of my favorites, I loved the name and its implication. It involved 2 drinks a day instead of meals and dinner was a moderate meal like chicken and salad. The trouble was, the drinks made me gassy. Once while on Slim Fast, I went to a Broadway play and was sitting in the middle of the row with a great view of the stage, but I was miserable because I was trying to hold in the gas, until intermission. I was in physical pain and overcome with the possibility of being embarrassed: it was the last time I ever requested center stage seats. I fasted once for about 2 weeks, just having fruit juices and water. I did lose a lot of weight, but gained it back just as quickly. I also tried just not eating breakfast or lunch but depriving myself made me feel weak, lethargic and sad. 

 

     Eventually I learned about conscious eating. I didn’t lose weight but I became more aware of my eating patterns and the emotions behind it. When I wanted something to eat I learned to think about whether or not I was actually hungry and what was I in the mood for? Did I want  something crunchy or smooth? Sweet or salty? Hot or cold? If I wasn’t hungry, what was I feeling and why did that particular feeling make me want to eat? 

 

     I had an “eye-opening” experience when I was in my 20’s. On occasion I would buy brownies at a bakery— I learned delicious brownies did not need frosting — and would take my box of brownies to the movies. Once, while waiting for the movie to start, cradling my delicious box of brownies, I asked myself why I was doing this and what I was feeling. The answer came through loud and clear. “I am depressed so I want to eat brownies and I don’t want to think about anything!” I ate the brownies with less gratification than usual  because now I understood, at a “gut level,” that I was hiding my feelings. The next step was to figure out what I was depressed about, but there were clearly times when I didn’t want to think or feel. I just wanted to eat. The general feeling I lived with was a constant low level sadness and dissatisfaction about every aspect my life. I needed escape from not feeling good enough. 

 

     I still like brownies but I always remember my “ah-ha” moment and when I  do have an urge for a brownie, I think that sadness must be brewing somewhere under the surface, just waiting to be acknowledged. 

 

     Conscious eating helped me become aware of the difference between stopping when content rather than full. It didn’t take me long  to recognize the difference but sometimes being full made me feel content.  That stuffed feeling was comforting as I sat back feeling sated physically and emotionally. It was like being drugged. As I got older and my body began to change, I began to notice that being full wasn’t as comforting as it once was because I was beginning to feel nauseous instead: however it didn’t always stop me from wanting to eat more and the term, “My eyes are bigger than my stomach” rang true. By this time in my life, I knew that eating in excess was my way of hiding my feelings, and stuffing unpleasant feelings beneath the surface was a habit that was difficult to stop.  

 

     Conscious eating did help me become more accepting of my body image. I was still overweight but it was more OK than before. Food was a way of nurturing myself and I came to accept that this is me.  I didn’t have a model’s figure for sure, but it was my body and I enjoyed buying clothes that were creative and complimented my full figure. Then, when I was diagnosed with angioimmunoblastic T cell lymphoma in February 2020, everything changed. Chemotherapy was harsh on my body and for the first time ever, I lost my appetite. I didn’t think about food until suddenly I realized I was famished or sometimes even nauseous. I began to lose weight and when I would weigh myself I was stunned to see pounds disappearing each week. A month after chemotherapy was completed, I had a stem cell transplant which put more of a toll on my body. I couldn’t eat and became bothered by the thought of what I could eat that wasn’t going to make me feel ill. I lost more weight. Between chemotherapy and stem cell transplant, I lost close to 60 pounds and shortly after the transplant, developed “a touch” of gastritis and colitis.

 

     At the time of this writing, 11 months after treatment, I am thin for the first time in my life. It is easy to assume now that I am thin, my weight issues are over, however it’s the opposite because I’m used to thinking about food as a source of emotional comfort but my digestive issues create food restrictions and that makes getting comfort from food difficult. I am thrilled at being thin but worry about a fragile stomach. Because food is not doing its usual job of comforting me,  there are times when I am faced with feelings I’ve been hiding for a long time — fears of inadequacy, jealousy and repressed anger are big ones and the heavy hearted sadness that has always existed inside emerges once again. Sometimes I can hide it, other times I am consumed by it. When I can’t hide it, it emerges like unwanted weeds in a garden and I am confronted with a sadness that I became accustomed to hiding with brownies and big sweaters. I am learning that losing weight is easier than gaining self esteem, and facing old demons is harder than having cancer and that now I have the task of coming face to face with my sadness. 

 

     Surviving cancer, however, has given me the ability to see the depths of my inner strength and perseverance, and I notice that all my emotions seem closer to the surface. I cry at commercials. Though I wish my sadness would just go away, I see that it is the other side of me which needs to be comforted like a crying baby instead of being ignored and shoved in the back of the closet.  

 

     When I can acknowledge the sadness, I see that it is not always as painful as I thought it would be because it doesn’t consume me which I believe was my fear. When I let the sadness out it is a relief, like I’m finally being recognized after being ignored for a long time. Feeling it  and watching it pass actually makes me feel stronger. Each time I let the sadness happen I feel more complete like I just found another piece of the puzzle.

 

     I try thinking about food simply as a source of nourishment for my body, and I try to stop eating when I am content rather than full, enabling the emotional upheaval to emerge. My favorite way of nurturing these feelings has become my walks in the salt marsh. As I enjoy the beauty of the marsh,  anxiety and sadness comes out: my fear that cancer will come back, of having an attack of gastritis or colitis, and of gaining weight. I worry that I will never have the energy I once did and now my newest worry is that I won’t have enough antibodies to fight off COVID. I have, however, become better at understanding that I am not in control of very much other than to do the best I can in taking care of myself. My emotional load is lightened by the end of my walk, because I am l learning how to balance what I can control and what I can leave behind.

I’ve been buying some new clothes that fit me properly and getting rid of old clothes that are way too big. While looking through my sweaters, I was struck by the fact that all during my heavier years I was buying  oversized clothes that camouflaged my body. Seeing them now makes me feel sad for all the years spent not being content with who I am and of being ashamed of my body,  even though I thought I convinced myself that I was fine the way I was. I pack up my old clothes, a symbol of my past, as I take pleasure in neatly tucked in T shirts that are sized extra-small.

I am not the inadequate person I once thought I was. I haven’t accomplished all of what I wanted, but I like that I strive for truth and I believe that gives me strength. I don’t want to look at life through a lens of self doubt so when I see that old pattern I move my attention away from this harsh way of thinking and instead take comfort in knowing who I have become. There are lessons in everything and working toward a balance is necessary. Leonard Cohen’s brilliant line, “There is a crack in everything. That’s how the light gets in,”  helps me see how the opposing feelings I experience can work together to lead me toward growth.

 

 

    It’s been 11 months after chemotherapy and stem-cell transplant, My hair is growing back, thinner and finer, and I am 60 pounds lighter. I go from feeling energetic and wanting to start re-creating my life to feeling tired and just wanting to lie down. I spent the last year home, recuperating, staying safe from COVID, and ordering new clothes online. There are not many things I can save from my closet, stuffed with clothes from my old life, which ended at the onset of Cancer and Covid. My new clothes are hung outside my closet, my old clothes inside. I want to get rid of what doesn’t fit anymore but I seem to be holding on. Maybe I will gain weight, however, I like being skinny. It’s all a dilemma.

    I  think of life before and after cancer. Now, I look in the mirror and see a thin but finally proportioned figure that is unrecognizable, and an exposed face along with very short hair that barely frames it. My beautiful curly hair is a distant memory as I stare at this stranger in the mirror. So much is simply gone.

     Occasionally I open my closet and look at all my oversized clothes, then shut it again, not ready to face all the dilemmas these clothes represent. Recently, however, I decided that I will just look at my clothes, and pulled out an old favorite pink knit cowl-neck sweater that made me feel cheery on freezing cold days. The knit was soft against my skin, but now it’s so big, I can barely feel the softness of the sweater on my body — it used to make me feel nurtured but now I feel lost in it. I’m tired of feeling lost, and that inspires me to start a give-away bag.

     As I am going through my clothes, I see that just about everything has to go, regardless of how I feel about my favorite shirts and sweaters. Suddenly, I start to remember clearing out my mother’s closet after her death, and I realize that the grief I felt then is surprisingly similar to the feelings I have now. So much ended with cancer — my health, career, future plans — I simply survived through the ordeal of treatment, just waiting to get to the other side. 

     I’m ambivalent about holding on to or letting go of my clothes — so many emotional attachments.  I pick up a favorite jacket with colorful designs that I wore when I organized a memorial gathering at the hospice agency I worked for. I remember the gratitude I felt on that day that touched so many hearts. Into the give-away bag it went, but my fond memory remained. The striped shirt I loved wearing in Greece with my sisters, what an amazing experience that was, but  I didn’t need the shirt to remember.

    My reluctance to separate from my clothes is because the unique designs and choice of style represent different parts of my identity but I see that remains with me regardless of what is in my closet. There is still sadness at my losses but endings are followed by beginnings. I now have clothes that fit properly, I have ideas for my future and I have a lot to write about.

 

My Dad was a person who was able to fix just about anything. He was able to look at a broken machine or household gadget that was malfunctioning and know exactly what was wrong. If he couldn’t find the piece, he would make it. He was a mechanic and when the newspaper he worked for folded, he was lucky to find a job at the US Post Office. He used his talents well there, and even invented a gadget that went on the mail carrying cart which was named after him. He was quite the amazing guy. He had a good sense of humor and worked hard to  support his family.

I feel  like I inherited some of his creative talents. I don’t fix things, but I like to sew. I like to transform one thing into another. I took my sister-in-law’s clothes after her passing and made nine quilts for each of her children. I took neck ties and made them into bags, pillows and belts. When my dad saw this, he bought over a neck tie with a windsor knot and said, “Here, see what you can do with this.” I used it as a flap for a closure on a neck tie bag. It was brilliant and my dad appreciated my creativity!

He wasn’t the best father to his three daughters, because all eyes were on his son, the fourth child in our family, but he did his best with what he had. When he was 70 he stopped working only because he was making mistakes at work and he couldn’t figure out what went wrong.  He felt demoralized at these mistakes because he was always so proud of the work he had done, what he fixed and how he did it.

A few short years later, he became diagnosed with Alzheimer’s Disease, and we all spent the next 15 years watching him slowly disappear, a little at the time. Before realizing how bad it was, he tried to fix something in my bathroom, but sadly we had to call the plumber to really fix it after he left. My father was devastated at this loss, not just because of the loss of his ability to fix things but his pride disappeared as well.

By that time, I forgave him for not loving me as much as he loved my brother, and took the best care of him that I knew how to do. I loved him, even though he, or none of us were able to fix this.

It’s spring, 2021! I no longer have to bundle up with hats, scarves, or gloves and I can now take my daily walk without my shoulders scrunched up to my ears.  Instead, I  walk out of my apartment building relaxed, the day longer, the weather warmer, and I can loosen my scarf. By the time I get home, I am holding my scarf and my jacket is unzipped. I love that the sun is stronger and soon I will enjoy my favorite part of spring,  when I start seeing little bright green buds on the trees and bushes.

 

Spring has always inspired me to make changes in my life, because the newness of the season comes with an abundance of energy, like a gift for all of earth’s inhabitants.  I have often celebrated the season by learning something new. Some of my favorite ventures have been belly dance classes, Kundalini yoga, reading Tarot cards, and, of course, writing. For quite a few years I joined a gym and sometimes I also started the season by going on a diet.

 

This year, however, is very different. In fact, so was last year. I started my first chemotherapy treatment on March 26, 2020, so the first day of spring, which was March 19, 2020, came and went without a celebration of newness and good energy because  my whole world darkened with the news of my cancer diagnosis. The entire world was suffering as well with the onset of COVID-19, but I was so overwhelmed with cancer that I couldn’t grasp the intensity of the pandemic until now, a year later.

 

 When I was seeing doctors in late 2019 and early 2020, trying to find out what was wrong with me, and eventually diagnosed, I was anxious and worried that I did something wrong to bring this on. Test results were leaning toward angioimmunoblastic T-cell lymphoma but I couldn’t really think in that direction. I kept hoping that once they ruled that out, they’d find the real problem because, after all, I’ve always been healthy, and my whole family was healthy except for my father having Alzheimer’s disease. No one in my immediate gene pool had cancer. What did I do wrong?

 

When I was finally diagnosed,  I was relieved that my problem had a name and a solution. My wonderful doctor at Memorial Sloan Kettering believed that treatment would be successful, and so chemotherapy and a clinical trial started right away. I think that I went through treatment on “automatic mode” because I wasn’t feeling nervous or hysterical, like I would have expected. Even my blood pressure, which had been high for a while, went back down to normal. I wasn’t afraid of dying because my doctor was sure we could intervene in time, the cancer was at its beginnings, and I had two dreams that showed me death was far, far into my future, so I firmly believed I would get through it — I was calm. Sad, but calm. In retrospect, I think that was my strength.

 

I was no longer working, not going out at all because my immune system was severely compromised, plus COVID was out there. Like everyone else, my whole world for the year was restricted to my cell phone, Zoom, texting, TV, and writing. I had a meditation practice for four years prior to cancer, but somehow I could no longer meditate. Meditation has always helped summon positive feelings about my spiritual growth and life goals, and always encouraged a positive approach to life in general. Now I’ll either fall asleep or have what meditators call “monkey mind.” When I began to see and feel the side effects of chemotherapy — baldness, exhaustion, achy bones, nausea, and other symptoms — I’d get overwhelmed by all the loss I was experiencing, and just cry. I missed “normal” life and, most of all, I missed being healthy. I felt a heavy-hearted sadness that I just carried around with me while I was trying to accept the surreal fact that I had cancer and was going through treatment. I was able to experience it all with strength and acceptance that actually surprised me, because it is only now, after looking back, that I begin to feel more vulnerable. I feel aimless, sad, and suddenly cry easily, even at commercials. I picked up a habit of looking at photos of myself — I take many selfies then delete them, and I ask my husband to take my picture because I want to see if my looks correspond with my feelings. I’m amazed at how this experience has aged me, as there I am smiling like a worn-out soldier who just survived a battle. I am surprised that this is me, a person who spent a year battling cancer.

 

When I finished chemotherapy, I underwent a stem-cell transplant a month later. This is an experience that truly changes everything because even seven months after the procedure, I am still recuperating and I’m supposed to wear a medic-alert bracelet for the rest of my life. It gives special instructions in the event that I cannot speak for myself and need a blood transfusion. It is also a constant reminder of my cancer experience. I have all-new blood and it will take a year for my immune system to completely rebound. The process involved many steps that made me worry about making mistakes along the way. It started with injections I had to give myself to produce baby stem cells, which were then removed and put back after I underwent more chemotherapy. I was hospitalized for a month and had to keep a low-microbial diet for three months after with the primary focus of avoiding infection because I didn’t have any immune defenses to fight it. I had to live in a germ-free environment and, as with chemotherapy, monitor all my symptoms and call the doctor if I was concerned about anything. Seven months later, I am physically stronger but I still become exhausted beyond comprehension and frightened that I will get sick. I don’t know my new body and whether or not I am still the resilient person I always thought myself to be, both physically and emotionally.

 

I am now officially finished with treatment, but I still have a lot of follow-up appointments. I appreciate them more than I thought I would because after treatment I felt lost, aimless, and sad, which is confusing because I assumed I would be happy to move on. But the trouble is, move on to what? COVID limits choices, plus I am still being careful because of my developing immune system. I feel stronger but I am also filled with uncertainty. Part of me wants to think that this “cancer thing” is in the past and I can just move on now, but I also feel knocked down by the reality that I will never be the same.  Ongoing stomach issues, odd rashes that mysteriously come and go, and lingering exhaustion are a reminder that I can’t go home again. There is also resistance to accepting the fact that I now have a delicate stomach. As my body changes I seem to have developed sensitivity to certain foods, such as anything made with tomatoes. Even though I should have known better, I recently had tomato bruschetta over turkey and the next day my stomach was destroyed. It took a week to get my energy back and during that time the never-ending question without a satisfactory answer came up constantly: “What can I eat?” I miss my old iron stomach. The thing that changed is that I can no longer take my health for granted. It’s always in the back of my mind that cancer could return. The physical exhaustion and the emotional baggage that cancer involves is always with me. Things that happen, like stomach issues, rashes, and more-than-occasional sleepless nights, are all constant reminders that my body is not the same as it was a mere 20 months ago. Whenever I experience physical discomfort, I worry that it’s a cancerous lymph node. Having had cancer creates a cloud of worry that hovers overhead persistently.

 

On the flip side, when people ask how I am doing, I feel a genuine sense of relief  to admit that I am in remission. It took a while for me to say that because of the lingering side effects, but I realize the moment I say it that I am genuinely happy I survived and can enjoy another day. It feels like my heart opened up and is making room for this new and wonderful feeling, and I realize at those moments that I haven’t been happy in a while. I feel proud of myself for having gone through chemotherapy and a stem-cell transplant successfully and am now able to identify an inner strength that was there but not fully realized, so in addition to disturbing side effects, anxiety over cancer returning, and the frustration of having to recreate my life, I am also thrilled that I made it through to the other side and I am here to talk about it. It’s a wonderful feeling to experience something positive after such a long time.

 

At times it feels confusing to have two opposing emotions, but that’s what I feel — dread and relief. It’s like light and dark, good and bad, happy and sad. Duality is my new reality. The task now is learning how to create a balance somewhere between the two. And what better time than spring to learn about the experience of living with duality?

 

Handmade quilts are fascinating to me; the combinations of patterns, colors, and designs are so intricate and precise. Each individual piece of fabric — and there are hundreds that go into making a quilt — looks like scrap that could be thrown away, but together with the rest of the pieces, it becomes part of a whole, a wonderful image of diversified unity. There are as many designs to follow as there are pieces for a quilt, so choices are endless, which is both exciting and daunting at the same time. It is absolute bliss to walk into a quilting store and become awakened by the widest array of vibrant colors ever to be contained in one place. Every possible shade of each color is represented in a wide variety of patterns. It is also an overwhelming experience because, like a child in a candy store, choices have to be made on which colors and patterns to choose, and the impulse is to want them all.

 

There are a few steps to quilt making, each with its own challenge.  First is choosing different fabrics, which is easier said than done as it involves finding the right balance of contrasting colors and patterns, while looking for a unifying commonality. I often need the help of the salesperson, so I won’t pick a combination that is too busy. It’s like a Goldilocks moment — it shouldn’t be too bland, nor too busy, it has to be “just right.” The next step is cutting the fabric. This part of the quilting process can be fun because of the equipment used. I have a cutting mat filled with lines, squares, and measurements from length to width, a three-inch-wide, seventeen-inch-long clear ruler also with measurements filling the inside, and a fabric cutter that looks like you can also slice a pizza with it.

 

Even though the equipment makes cutting fabric easy, I find this process to be the most challenging part of making a quilt because it demands being exact. After cutting, the pieces are put together in the pre-determined design — it’s like putting together pieces of a puzzle, so if you’re even one-quarter inch off, the tiniest amount accumulates and can affect the design of the whole quilt. I find this intimidating because being exact has never been my forte.

 

It’s a funny thing about perfection. On one hand it makes us strive toward bigger and better things, not just in quilt making, but in life: everything from setting goals for our career to planning our day. When shopping, do we settle for the sofa that’s more affordable, or go for the one that really appeals to us and will look amazing in our living room? In quilting it’s easy to just ignore being a quarter inch off because, after all, no one is perfect. Native American tribes purposely put a flaw in their artwork as an act of humility, with the belief: “only God is perfect.” There are times, however, when I settle for something less than ideal, and I don’t always feel comfortable with my decision. I have taken apart many a sewing project in an attempt to make it better, and then become disappointed in myself when I look at the finished product that still has mistakes, and that is all I can see: a mistake. As a result, I lose enthusiasm and it becomes an effort to keep working on the quilt if I am not happy with it. I often cope with the disappointment by learning another craft, so I sometimes see myself as a “jack of all trades and master of none.”

 

I am slowly coming to the realization, however, that aiming for perfection is a goal that becomes impossible to reach and results in feelings of disappointment; it reinforces negative feelings. Yet when I show the quilt to friends and family, they don’t see what I see. They are looking at the whole quilt, not just the mistakes. That is a reminder for me — to be gentle with myself and follow their wisdom of looking at the bigger picture. This can pertain to looking at my whole life. Am I a product of my mistakes or am I the sum of success, failure, perseverance, and, ultimately self-acceptance?

 

 At the other end of the spectrum is the person who won’t settle for less than perfection, and consequently never accomplishes anything. As a young adult, I felt like I never measured up to anyone, which was exemplified in a relationship with a close friend who was a perfectionist in everything. Sometimes, though, this desire paralyzed him from taking chances in many areas of his life. When we would spend time together, the day had to be planned according to his specifications; shopping was an exhausting task and if I made a suggestion in a restaurant, he’d make a facial expression that conveyed his distaste. Where everything had to be just so, I was always settling with the feeling that this was merely the best I could do. It seemed as if our egos were at opposite ends of the behavioral totem pole and ultimately our relationship made me feel more inadequate than I really was. Cutting fabric for a quilt, therefore, often reminds me of this old feeling of not being good enough.

 

I am currently working on a polka dot duvet cover for a comforter that I bought several years ago.  As I cut out the circles, all traced from the same bowl, I notice immediately that they are all slightly different in size, so I decide to embrace my newly acquired  theory of appreciating this project as a whole. Therefore, instead of becoming fixated on the variations in size, I decide to scatter the circles across the fabric instead of using my original plan of arranging straight lines of circles. I also thought that a backing on each circle would make it puffy when placed on the fabric, but after sewing the back and front together I noticed that each circle has tiny imperfections on the circumference. All I can see now are little points and angles instead of a smooth curve, so the circle is not perfect. When I ask my husband for his opinion, again, he doesn’t see what I see. He sees the whole circle, the colors, patterns, and how it will look as a duvet cover. He sees himself sleeping under it, while all I see are my mistakes keeping me up at night.

 

I’m going to continue with this project and do the best I can. So far, I am pleased with the combination of colors and patterns in each circle and how they look all together on the duvet fabric. As I progress with cutting and sewing the circles and attaching them to the fabric, I will continue to do my best, but when I start to see only mistakes, I will take that as a sign that it is time to look within because at that point it is no longer about the sewing project but rather about my old tendency of being overly self-critical. I want to continue to enjoy making quilts and other sewing projects,  I want to be happy with the whole project, my creation, and while I appreciate the end result, I will also know that we are not here to be perfect. Our flaws provide lessons about acceptance, and sometimes there is room for improvement while at other times there is an acknowledgement that there is a duality in life, our ups and downs, pleasures and disappointments, and all of the in-betweens, all of which add depth to who we are and make us the intricate beings we are, as a whole, like a quilt.

 

 

 

 

 

The Life of Brian first aired in 1979. It’s a Monty Python movie, so it has a unique interpretation of events that took place in Biblical times; the retold story is hysterical but it is the final scene that sticks out in my memory, with a smile.  The main character is one of many who hangs on a cross, and he is singing “Always Look on the Bright Side of Life” while the others are swaying along to the catchy song’s rhythm. It is a cheerful, funny song with a lot of whistling about the inevitability of death — so life should be spent taking chances and being happy. Listening to the song again recently made me think that it would be a wonderful idea to look back and examine difficult times in my life with a sense of humor, or at least with a different, kinder perspective — it’s a process that involves being compassionate and nonjudgmental. 

 

I started by going back to when I was 19 years old, when I was a secretary in a warehouse that made displays for business conventions. The downstairs held offices for the businessmen and other staff and the upstairs was a warehouse for construction workers. It was the 1980’s and the receptionist answered calls with a switchboard, fully equipped with plugs and cords. You had to stick the plug into the spot for an incoming call and then move the accompanying plug over to the person they were calling. If the call was for a person in the warehouse, the receptionist had to go to the microphone first and announce to Mr. So-and-So to pick up extension whatever. Part of my job was to relieve the switchboard operator at lunch and on breaks. I felt like Ernestine from Rowen & Martin’s Laugh-In: “Is this the party to whom I am speaking?”

 

One day it was so busy I couldn’t keep up with the high volume of calls and in my haste began to make mistakes. I got on the microphone and announced, “Hello, Warren Displays, Can I help you?” Well, I got about 20 calls from the men in the warehouse along with bad jokes that embarrassed me terribly.

 

This incident haunted me for years, and I was needlessly hard on myself for this foolish but innocent mistake. It took a lot of work at self-kindness and accepting that life is not meant to be perfect in order to transform the humiliation into humor. As I got older and came to experience different successes and failures, my views about life expanded. I learned about self-acceptance and finally understood, with relief, that we are not made to be perfect. Our task in life is to learn to love ourselves with all our hearts and what we perceive to be flaws are perhaps not flaws at all. Maybe they are just obstacles for us to climb and conquer, or maybe something we simply learn to accept and live with. It is only then that we can enjoy life with a sincere chuckle.

 

 

 

In January 2019, a firefighter fell to his death on the Belt Parkway in Brooklyn, responding to a crash. He was trying to climb over the barriers that separate the eastbound and westbound lanes, and fell through the gap. On the day of his funeral there were firetrucks everywhere, their sirens so piercing that everyone in the vicinity was caught in their roar, forced to acknowledge the loss.

As it happened, it was also the day I decided to start cleaning out my mother’s apartment. She had died in November 2018 and her apartment was close to the Belt Parkway where the firefighter lost his life.

I had arranged to meet with the building’s superintendent on that day, when bulk garbage such as furniture would be collected. We decided to start with the kitchen chairs: cream-colored vinyl cushions mounted on chrome frames which now had several rust spots that looked like many tiny eyes watching me. The cushions were flattened out and torn at the seams. For many years we happily sat on those chairs, talking, laughing, arguing, making important decisions, and connecting with each other, just being a family. My mother disliked parting with any of her precious belongings, so emptying her apartment overwhelmed me with sadness and guilt. I watched the chairs she took comfort in turn from a prized possession into four pieces of junk as the super carried them out, glad to be making some extra money for cleaning out my mother’s apartment.

The kitchen was always my mother’s favorite room, and though it still had all her furniture, pictures, and knickknacks, a quiet, empty feeling crept about, as if even the apartment was grieving her loss. Everything there was something I had grown up with, including a napkin holder I made from popsicle sticks in the shape of two Stars of David, painted light blue. I made it when I was seven years old and it was still stuffed with napkins. When I opened a drawer, I was unsure if I was emptying her apartment or just rummaging through the objects of her life, clutching to whatever I could of the past. While I was fixated on the memories, my two sisters and brother were better at clearing everything out, laughing and reminiscing, albeit with a matter-of-fact, task-oriented manner.

When I left the apartment, I noticed that the sun was shining brightly, and it cheered me momentarily. Then I looked ahead to the other side of the parking lot where the garbage was left and saw two men lifting my mother’s kitchen chairs onto their truck. By this time I was feeling drained and numb but when I looked beyond the garbage truck to the Belt Parkway, I saw a parade of firetrucks and heard their horns and sirens screeching loudly. At that moment it sounded like screaming and crying for all the sadness of losing a revered firefighter and the woman who was my mother, adored by all who knew her. Both gone, both loved and respected, both forever lost to their families. As the sirens filled the air with grief, the crescendo of loss was devastating. The sound of the sirens vibrated throughout my body, my heart cracked open, and I, too, started wailing along in unison.

 

 

 

Growing up, my two sisters, brother, and I all wanted to be the first to look at the newspaper my father brought home with him after work.  We scoured it for articles to cut out for our current events homework while my younger brother just wanted to see the comics. The newspaper my father read was called The New York Daily Mirror, which I remember to be similar in format to The New York Daily News.  When it got to be my turn, I would skip the news on the first few pages and go straight to the middle section, which, for me at least, was where the good stuff began.

 

When I was about ten years old, I started to take an interest in the articles for women on etiquette. I learned that wearing hats and gloves when going out on dates was the proper way to dress. If you balanced books on your head and walked without them falling off, it trained you to carry yourself with poise. Women were to talk softly. My favorite piece of advice was that if you were shy and didn’t know what to talk about on dates, you could make a list of topics beforehand and keep it in your pocket as an extra sense of security — in other words, a cheat sheet for making small talk. These articles were fascinating to me because they told women, and young girls like me, the proper way to be, and at the time, I thought I needed that kind of direction.

 

Even though I was too young to go on dates, I was still fascinated by these types of etiquette pointers, which, if followed successfully, I imagined would make us all look and act like Holly Golightly, from Breakfast at Tiffany’s. By the time I was ready for dates, my focus was less about fashion, class, and beauty and more about embroidered jeans and flowered shirts: no hats, gloves, or bras.

 

Still, small talk continued to fascinate me, as it always did. I was a serious kid, so light-hearted chatter seemed like an important skill to learn. My parents would have company over quite frequently and there would always be a lot of banter along with a lot of laughing. They were having so much fun, and I was curious to know what they were talking about so I could learn to master this skill myself. I would quietly hang around and listen to them talk about people who weren’t there or playfully tease each other. Later in the evening, when the women gravitated to the kitchen and the men to the card table in the living room, the women spoke about shopping and food prices while the men spoke more seriously about news and what repairs and updates they made in their homes. They also had periods of quiet that seemed comfortable to them as they played cards. They clearly did not need articles on etiquette, which didn’t seem to exist for men anyway. The carefree attitude of their small talk gave me the impression that these adults seemed to have adjusted quite well to life. I wanted to be an adult, have a house, and invite company over so that I, too, could be happy and well-adjusted: this was the way life was supposed to be. And small talk played a key part in moving that way of life steadily along.

 

As I got older, I began to have different thoughts about small talk. Though I eventually learned the skill and could happily chat with just about anyone, I often felt that there was something missing in idle chitchat, but I was unsure what it was.  It seemed like it was a way of avoiding reality. But what did I know about reality?

 

I was in my late teens when the Beatles brought Eastern philosophy to the Western world, which was followed by gurus, Buddhism, and meditation — all very “grown-up” topics, or novel at least. My friends and I took to all of this and would have serious talks about life’s bigger meaning. We read Siddhartha by Hermann Hesse, tried to meditate, and wanted to know how to reach the blissful state of Nirvana. Discussing this was so much more inspiring than small talk, but, in retrospect, Nirvana was a hard-to-reach goal. Small talk sometimes seemed to be an easier way of getting to a happy place, even if it was superficial and temporary. After all, Buddha said everything is temporary, so didn’t that reinforce the value of the quick and the casual?

 

Of course, there are different types of small talk. There is the sometimes awkward talk, like when you unexpectedly meet someone while you’re running errands or when you receive a phone call out of the blue. I don’t always know how serious or superficial these conversations should be. “How are you?” is generally a good starter. It eventually leads to other easy topics like the weather, news, what’s going on in our families, and our general health. It’s interesting how some of these subjects can be discussed so lightly, but they can also segue into a more personal heart-to-heart. I don’t always know which direction the other person wants to go. Do they really want to know how I’m feeling, or are they just being polite, and should we open up and have a meaningful conversation on the street when we only just ran into each other? I don’t always read the cues properly as I am still a rather serious-minded person, so I don’t know how deeply to delve into a subject. In that situation, I gratefully rely on small talk and humor to get  me through without feeling ill at ease.

 

It’s uncomfortable when a more serious-minded person is trying to connect with someone who prefers frivolous chatter. That happens to me often. When I am feeling more serious, it becomes difficult to adjust to people who don’t want to go there. I wonder if it is easier for a serious-minded person to adjust to light banter, or the other way around?  It seems to me that a person who prefers to keep things light may feel uncomfortable with the vulnerability that is exposed in more meaningful conversations, but then I tend to feel misunderstood and annoyed when someone else is busy making jokes while I’m pouring my heart out.

 

I don’t always know how to balance or negotiate serious conversation with the lighter variety. It requires being aware that we are on two different wavelengths. If I am not too anxious I can be aware of these moments and ask myself, How will I manage with this other person who wants to laugh it off? Will this other person be able to validate my feelings in any way or will I end up smiling politely while pretending I’m enjoying their jokes? There are a lot of adjustments for me to make. And, not so incidentally, am I the only person who is uncomfortable? Is the funny one even aware that this is awkward? The ability to communicate with a light-heartedness is a necessary skill that I didn’t have as a child, and one I continue to struggle with as an adult. I think this is why I often miss the punch line of jokes.

 

If nothing else, small talk breaks the ice and can soften that initial, occasional awkwardness in reaching out: it smooths over the rough edges of life. It’s fun to chat about TV shows, music, fashion, sports, or whatever pops into our head. Sometimes it is even stimulating to disagree on politics. It is a human instinct to connect with people and small talk opens the door, but it is our deep thoughts and feelings that we share with others that enable us to truly walk through the door into each other’s lives, where we can share our struggles, passions, creative desires, and aspirations in life. Revealing what’s in our hearts helps us form solid bonds with our family and friends, and helping each other move forward is what gives life deeper meaning. When our hearts are open, it happens quite naturally and we don’t need a list of preconceived topics to talk about from an article on etiquette. And maybe that’s the upside to small talk.

 

 

 

 

As a kid, it always seemed that I had scabs on my knees. I would pick at them, they would bleed again, and it was like I had a fresh bruise. I wonder now if I was clumsy and fell a lot or if it was in fact the same scab I just picked at numerous times. They eventually healed and left minor scars. My most recent scar, however, is on the right side of my chest. It looks like an exclamation point. It is from a catheter that was inserted into a large vein near my heart for a stem-cell transplant, which left more than a visible scar.

A week or two before the catheter was put in, I had to inject myself with a substance that produced baby stem cells. They were later removed through the catheter and when I was ready for the transplant, they were put back in, also through the catheter. During my month-long hospitalization for the procedure, the catheter was also used to supply my body with medicines and blood transfusions. There were tubes attached to the catheter with medicine in a pouch, which hung on an IV pole, and which was by my side 24/7. I would take a walk around the unit with my IV pole at one end and the catheter in my chest at the other. It became my companion.

An extraordinary thing happened when my stem cells were being removed. The site where the catheter was put in started to bleed and needed to be repaired. The person who repaired it asked me to come back the next day so he could check to see if there were any other problems. That night, just before going to sleep, I saw an image of three ladies by my bedside watching over me. The one in the middle had a needle and thread and was showing me a sewing movement. The next morning my catheter was still bleeding and needed to be restitched. My spirit guide from the night before was preparing me for what was to come. They didn’t show their physical presence again but every so often during my hospitalization I would wake up with the feeling that someone was there. I would look around and find myself alone, but the comforting feeling of being watched over stayed with me permanently. I still feel comforted by the presence of my angels.

The catheter was removed the day before I left the hospital. I walked around the unit without my catheter and IV pole. I felt vulnerable, realizing they had become my protectors too. I would be leaving the safeguard of my excellent nurses and aides, and though that made me scared, I also had faith that I was being watched over by a higher power.

It’s been four and a half months since my stem-cell transplant, and the scar that looks like an exclamation point remains. In writing, an exclamation point is used to emphasize “something surprising or forceful.” My experience was both. Surprising and wonderful to see and feel the presence of my angels, and forceful because of the procedure itself.

 

In the last years of my mother’s life, she struggled with dementia. She was a mild-mannered woman who enjoyed reminiscing, so whenever I visited, we would look through lots of old photos, a pastime we both enjoyed. There was one photo in particular that I loved looking at, a photo of my mother, aunt, and grandmother taken long before I was born. The women were so different in their personal styles but so close as a family. It looked like it was taken in the countryside somewhere and the three of them appeared happy, young, and beautiful. They had their whole lives ahead of them, lives that were eventually filled with children, grandchildren, and great-grandchildren, with good times and bad times, and through it all the secure connection of family to share their lives  with. Whenever I look at the photo, I think of the life they had yet to live, and all the experiences they had yet to live through.

 

It’s a timely reflection for me now because I’ve gone through six rounds of chemotherapy for angioimmuniblastic T-cell lymphoma, and I am in my 142nd day of recuperating from a stem-cell transplant. My immune system is slowly recovering, and my new stem cells continue to get bigger and stronger every day. When a year passes, I will get all my immunization shots once again, plus some new ones, and celebrate what stem-cell transplant patients call a rebirth. I think of this now because, like the photo, I realize that there is still a lot of life ahead of me to be lived and enjoyed.

 

When I tell friends and family that I completed treatment successfully and am in remission, or that I am cancer-free, everyone is overjoyed. My hair is beginning to grow back, and this can all be put neatly in a box of  memorabilia and stowed away on a shelf in the closet. It feels like the general expectation is that it’s over now and life can resume again. We don’t have to talk about the thorny subject of cancer anymore, and yet for me, even though it’s over, it’s not really over.

 

I am thrilled that I finished chemotherapy and that I survived a stem-cell transplant. Still, the transplant process was more complicated than I anticipated, and after four months I still tire easily, I don’t feel as focused, and odd things happen to my skin. Sometimes it feels like I am being stuck with a needle from the inside. I get nauseated and have digestive issues. I am constantly monitoring what I eat in order to try to find a pattern or way around the upset stomach. I remind myself, however, that I did survive, and that’s a blessing. It might not always feel that way because the side effects I’m left with are constant reminders. When people express their joy over my being in remission, I agree in earnest because the ordeal of the past year is over, but I don’t necessarily feel  the joy of being “cancer-free” or of being in remission (my doctor said they mean the same thing).

 

To me “remission” implies that there is the possibility of cancer hiding somewhere in my body while “cancer-free ” means just that: being rid of cancer. After speaking to my doctor and reading the reports, I believe that cancer is gone for now, but it might return someday when I least expect it, when I let my guard down and move forward with life, which is proving to be more difficult than all the ordeals I have gone through so far. Part of the difficulty is that now I have a bit more energy but the number of COVID-19 cases continues to rise, and even though vaccinations are forthcoming,  we don’t know when we will get them, so though I have more energy, I can’t do much with it. I hadn’t noticed how restrictive COVID-19 was during my chemotherapy and stem-cell transplant because dealing with my illness took up most of my attention, so now I feel like I am experiencing the frustrations of COVID-19 for the first time. Cancer and COVID —the two C’s — continue to hang over me.

 

Today my treatments are over, I am in remission (or perhaps cancer-free), my appointments with doctors have dwindled, and my hair is growing back. By these indicators one would think that it’s time to move forward and put this all behind me, but I’m noticing that I can’t. Cancer has made me more vulnerable. There is a mass of conflicting emotions I feel throughout the day. I often feel sad and think I am grieving the loss of my health, as the ever-present symptoms and side effects — exhaustion, stomach and skin issues, the inability to focus — are still with me, and they continue to hold me back. What’s more, when I retired five years ago, I was confident that my life would continue to be productive, but now that confidence has been taken away from me because of the two C’s. I feel like I need to rebuild from scratch. Because I feel unfocused, I don’t know what direction that rebuilding should take, and equally distressing is that my creative energy eludes me. When I was going through cancer treatments, I didn’t have to think about all of this because my attention was fixated on treatment itself, but now I am feeling weighed down by loss and the fear that there will be no regrowth. I miss the single focus of treatment: it gave me a mission.

 

I realize, however, that not all is lost.  Even though I am heavy-hearted, I must still remind myself of my skills, accomplishments, and creative abilities. I am immersing myself in sadness, which is all right for the time being, but not as a way of life. I choose not to fight sadness, but instead let it run its course, as I believe all my feelings need to be validated before they can be dispelled. I know from other life experiences that it doesn’t last forever. This is not the first time I’ve experienced sadness, and in the past I realized that when the weight of sadness gradually lifts, I learn something about my strength and resilience. This time may feel different because I haven’t been in this particular situation before, but, as I write this, I wonder how many times I have said that to myself. Perhaps that is a resistance in me that doesn’t want to let sadness go yet. My coping skills will once again be challenged and stretched, and I will once again be able to move forward, because I remember that I have access to the key: trusting and having faith in myself.

 

Helping myself out of this phase of sadness requires galvanizing resources. I have found that joining groups virtually or on social media with other cancer survivors provides a sense of validation. It eases the sense of isolation knowing that someone else out there is experiencing something similar to what I am going through. Keeping a journal has been a major source of comfort to me since my teen years and, more recently, writing and sharing my work online have all been channels of self-expression and catharsis. In essence, though there might be a desire to pull the covers over my head for an indefinite amount of time, talking, sharing, and connecting with others are important parts of the remedy.

 

The ordeal of being diagnosed with cancer, going through multiple courses of treatment, and the gratifying achievement of remission is a taxing experience both physically and emotionally. Practically speaking, life cannot go on “as usual.” Life is always presenting us with changes and challenges and so our task is to move forward and have faith in ourselves that we will eventually feel better. We deserve to treat ourselves with kindness and gentleness. Elizabeth Kubler-Ross, so many years ago, wrote about stages of loss and grief: it starts with denial then moves to bargaining, anger, depression, and, finally, acceptance. It is said that we go back and forth through all these stages until we are ready for acceptance. I experienced these stages many times in my journey with cancer, some feelings like anger and sadness more than others. I never found myself bargaining, perhaps because I spent so many months trying to find a reason and solution for my symptoms. By having faith that life is a process and that we will not feel this way forever, we can summon the strength to know that we have the skills to get through it, and we are getting ourselves ready for the gain. We will once again look forward to what’s ahead for us: life that has yet to be lived, like my family in the photo.

 

My husband and I went to midnight mass on Christmas Eve last year, where we met up with a teacher he used to work with. I didn’t know her as well as my husband did because they used to work together and I would only occasionally join them and their group for dinners. This teacher, apparently, had been suffering with memory issues, so it was interesting that she didn’t recognize my husband but did recognize me because she remembered my hair, which at the time was salt and pepper, curly, and full.

 

I loved my hair. It framed my face like a cornucopia of silver curls: it was parted along the left side and fell to my neck and chin. It was reminiscent of a 1930s bob, but it was a fuller mass of curls. I enjoyed the paradox of combining my silver hair — a sign of maturity — with a youthful, flowing army of curls all around my head. I also enjoyed the many different hair products made specifically for curly hair. Deva was my favorite product: the gel smelled like fruit and kept the spring of my curls intact. My hairstyle was what people noticed first about me and was, without a doubt, my favorite feature. However, I didn’t always love my hair. When I was a teenager, it was as if we were in a protracted war:  I tried everything to get long, straight hair: I ironed it, slept with huge rollers in place, and even used chemicals to try to get the popular style of the day. All that pain and effort was useless on a rainy or humid day when my tenacious curls defiantly made their presence known by coiling up like a Brillo pad. I’d have given anything to be able to stay home from school on those days. Then, when I was eighteen, I had my hair cut short. I recall it looking a bit like a pixie cut and would have to use a hair dryer to make it straight. One day a fashion-conscious friend and I went to a swim class and once we were out of the water she began to notice the curls springing to life as my hair dried on its own. She raved about the beauty of my curls and taught me to love my natural look. I felt so liberated at that moment, as it happily marked the end of my inexhaustible quest for straight hair. And I enjoyed my curls from that day forward.

 

Recently, when I was diagnosed with T-cell lymphoma, I knew I would lose my hair once I began chemotherapy and wanted to hold on to it as long as I could. Ironically, my diagnosis came right when I happened to need a haircut but  COVID-19 prevented that from happening as all the salons were closed. My hair was getting overly full and too hard to control: it was teetering on the edge of going from cute and curly to frazzled and frizzy. I found myself somewhat conflicted: on one hand I didn’t really want to lose my hair, but on the other hand, knowing I was going to lose it anyway made me feel impatient to get the whole “chemotherapy thing” started and done with.

 

Two weeks after my first treatment my hair did, in fact, start to fall out. I would run my fingers through it and would end up with small bunches in my hand. The first time it happened, my husband and I had just finished dinner and my mood quickly shifted from relaxed and content to anxious and uneasy. Even more fell out in the shower, which was extremely upsetting because I saw hair circling the drain, like a scene from Psycho, except instead of Marion Crane’s blood, it was my own hair pooling on the shower floor. I was struck with how surreal it was to keep losing my hair like that, and I couldn’t stop myself from removing small bunches at a time. If I were reading or watching TV, my attention would turn from whatever I had been focusing on to removing my hair. It reminded me of a sunburn that began to peel, and it became an obsession to keep picking at it. That was me. I had become transfixed with the process of hair just falling out. It was also physical proof that my life was changing drastically. I still looked like me, but I didn’t look the same.

 

In about a week or two, most of my hair finally fell out, so I decided to cut whatever was left very short and started wearing hats and scarves, but most of the time I just went around with a bare head. I would take selfies constantly, then examine what I looked like without hair. So much face! But as I studied my face with all its distinct features, I became intrigued by what I saw, as if part of me was beginning to emerge whom I hadn’t taken notice of before. I realized that hair definitely served as a camouflaging agent. Without it, there was a whole new me, like a snake shedding its skin.

 

Today, my newly revealed face has a lively expression and an impish grin that reveals a host of emotions brewing underneath the surface, just waiting to be seen or heard. This subtle grin seems to take pleasure from the rather humorous side of life, sometimes with a sardonic, sideways glance. It’s a quirky but cute look defined by spontaneity and receptivity. Without the cover of hair, I’ve become more aware of how my facial expressions are connected to my emotions. The discovery of one expression in particular surprised me because it is essentially the same look of contained discontent that my sister putters about with. I’m intrigued by my new look because I feel so exposed and transparent. Now the bareness reveals unfiltered facial articulations, along with marks left by the sun sprinkled all over my face from a lifetime of happy summer days at the beach. I never noticed how my nose took up so much space — and then there are my big ears which I had always been careful to cover up with different hairstyles. I like my newfound and funny smile, because it reveals a person who is facing this experience of cancer and chemotherapy head-on (pardon the pun) with openness, humor, and dignity, and sometimes with fear and sadness also. My unconcealed face is now in sync with my defenses, which have also been unmasked in the process. As my body changes from day to day due to a variety of side effects, my moods fluctuate as well, and I try to acknowledge them so that I may accept whatever the day brings.

 

Sometimes, the monumental reality of all that I am going through suddenly makes me feel vulnerable and scared. I can become irritable, impatient, and easily annoyed, and I was never really like that before. I’ve come to understand that these are moments when my defenses are down. I feel emotionally exposed and tend to react with intensity to every situation that comes my way, as if I’m walking through the Haunted House in Coney Island with the heightened awareness that just about anything might linger around the corner, ready to jump out at me. The hypervigilance is exhausting but there is no choice but to keep moving forward, and no hair to bury and hide my emotions in.

 

In the months following that initial round of chemotherapy, I noticed that my attitude about not having hair gradually began to change. I started to miss hair not just for emotional reasons, but for practical ones as well. It never occurred to me before that my hair served a purpose other than to obscure my ears. Until I lost it, I never noticed how much it absorbs and disperses perspiration in the summer months, or keeps you warm in colder weather. My hats and scarves became uncomfortable to wear in the summer and by fall I was just missing having hair. My bald head, still a symbol of my bravery, was also a reminder that I was not yet well. Then as now, there are times when I wish I could just put cancer aside even if for an hour, an afternoon, or a day, and just live — live to enjoy the wind blowing my hair about as I run and laugh and play like a healthy person.

 

 I don’t look at my experience with cancer as a misfortune, even if it abruptly altered my body and my lifestyle. Instead, I try to see it for the lessons this experience has taught me. I haven’t had hair for nine months and now that it’s beginning to grow back, I am eager and hopeful, but people are always reminding me how beautiful my hair was and how it will be once again. Curiously, I find that I’m not so attached to my hair anymore, mostly because I recognize how much I used to hide behind it. I have also come to understand that I am not in control of many situations in life, that every day is a new experience, and that I can accept that I have cancer without thinking of it as a punishment. Losing my hair was not some retribution by the Universe; in fact, it led me to look inside myself with an honesty I might never have otherwise. Being able to accept cancer without judging myself empowers me to feel brave. The self-criticism that once accompanied self-reflection has washed away, like strands of hair down the drain, and I am left with more self-compassion and self-love. So now when I recall memories that make me feel sad, or actions that stir regret, I remember them with more kindness toward myself than I ever have before. There is now more room for love.

 

It’s true that I still get impatient and critical of myself and others, but I’ve  come to understand that those are feelings of frustration, and they, too, shall pass. They don’t define who I am now and neither does my once springy hair. So who am I? I am a bald woman with cancer on a long road to heaven. This road is filled with opportunities to give and receive, to learn, to love and rejoice, and to appreciate what life has to offer, even when obstacles fall in my way. There is much life to enjoy and much learning to experience. The sense of sudden, somewhat startling exposure I felt when I started losing my hair now presents itself like that old familiar adage: when one door closes, another opens.

 

 

* A Note to the Reader: “Hair” was one of the first essays I wrote when I started my blog, and it continues to be one of my favorite pieces because I continue to look at my hairless head several times a day with a variety of reactions. With time, I began to realize that the feelings and emotions I originally expressed in “Hair” didn’t quite say enough. At the beginning of my journey with cancer and chemotherapy, I think I needed to feel that I had to handle anything that came my way, but eventually I began to feel more vulnerable, frightened, and sad. I would look back on “Hair” and think of everything that had yet to reveal itself during the months that followed — everything I had yet to feel, articulate, or convey. Allowing more vulnerable feelings to emerge didn’t affect my ability or desire to be able to say, “I got this covered,” but I began to understand that going through cancer and chemotherapy was more complicated than I expected, which made me want to revisit “Hair” and make some changes.

 

I named my revision “A New Hairstyle,” kept some of the original elements, added several new thoughts, and tried to express myself clearly. I chose to write “A New Hairstyle” rather than merely delete and replace “Hair” because it reflects where I found myself at a later time with some distance and reflection. To me they are both poignant and worth keeping in their own right.

The New Normal

 

“The new normal.” This is a term I’ve been hearing a lot lately. I’ve heard it in relation to COVID-19, which is not going away anytime soon. We are all tired of wearing a mask but we wear them anyway, in order to stay as safe as possible. This is our new normal. Holidays and events are cancelled or reconfigured. Life has become a remote virtual experience. I asked some Facebook friends in a cancer group I belong to: “When do things go back to normal?” The answers, unsurprisingly, were “That ship has sailed” and “This is our new normal.” I was asking about when the symptoms of chemotherapy would go away, not when we might approach a semblance of pre-pandemic life, but the question seemed to tap into a more universal concern about what has happened to our lives in the global community we live in today.

 

When I  think about what the new normal means, it feels like loss, followed by shock or surprise and then the expectation or desire for things to go back to the way they were. The need to adjust follows soon after. I am at times unsure and uneasy about change, but at other times, it’s like an adventure, something new that can be exhilarating. Someone I spoke to recently also said that hearing “the new normal” feels as if it carries a sense of loss with it, but she likes to turn it into an opportunity for improvement. Someone else relayed how he looks at the new normal as “going with the flow,” accepting what comes his way. Another person sadly remarked how it means previously inconceivable events are now reality.

 

Thinking about the new normal has made me question, What was the old normal? What is normal anyway? When I think of normal, I think of stability, predictability, and comfort in a regular routine, instead of having to think about how I should spend my day, which has been a more recent occurrence. Since retiring from my full-time job over five years ago, my work routine changed to part-time work with hospice patients whose lives were anything but what they’d consider normal. Instead, they lived one day at a time. “Normal” suggests some form of judgment or an assessment of how things ought to be. Throughout all my work years, different opportunities frequently came my way and so my work routine was constantly changing. There was always a new normal.

 

Then, when I was diagnosed with T-cell lymphoma, there were changes every day. My focus turned to chemotherapy, which affected my body and my emotional state, and which also meant the end of my work routine.  I lost my appetite and I lost weight. I felt scared and sad at the loss of my health and uneasy whenever I experienced new symptoms. So if my interpretation of normal involved predictability, then no, nothing was normal; at the time, my new normal was constant change.

 

When COVID -19 arrived, it changed our sense of normalcy completely. People gravely ill, over 300,000 deaths in the United States alone, hospitals overflowing with devastation and sadness in quantities never before seen. That became a new normal with no clear or immediate resolution. The ebb and flow of the disease frustrates us because when there is an ebb, we think it’s going away and we can tear off our masks, but then it flows again. This  constant change has become our new normal. Now that a vaccination is on the horizon, hopefully in the near future, it presents us with hope, but the stability of what is to be normal is still up in the air.

 

The loss that exists in the new normal reminds us that we all react to change in different ways. Some of us resist change completely and would be inclined to say that COVID is a hoax, so safety precautions are unnecessary. Others approach the new normal with trepidation and anxiety because the new normal is unpredictable and can change on any given day. The lack of assured safety is unsettling. It requires us to abandon our expectations and experience what each day brings with caution and an alert set of eyes.

 

 After chemotherapy, there was a short period of time when I thought that my body was going back to “normal” but soon after, as part of my treatment, I had to have a stem cell-transplant to minimize the risk of having cancer return. Initially I thought that after the transplant, everything would go back to normal, but now I’m finding that cancer is like living in a haunted house, because if I experience a minor ache or pain, my first thought is to worry that cancer might be returning. Cancer is always there, like a ghost creaking on the floorboards. When I’m feeling energetic and healthy, I look in the mirror and am reminded that I don’t have hair, yet that’s not the norm for most people. A routine of periodic appointments and tests to monitor my status is not likely to ever end, and there will be more blood tests where certain blood cells are either too high or too low. The good thing, however, is that the appointments give me something to do, as I would otherwise be home looking to keep busy. I am reminded that I am still in the early stages of recovery until a full year passes and I reach what transplant survivors call a rebirth. There will always be the reminder that cancer exists in my life. Even though I am considered to be in remission, the reminder that cancer once actively invaded my body and could do so again is always in the back of my mind.  This is my new normal.

 

It is human nature to think of normal as the good or safe, predictable life, while the new normal is an upside-down existence filled with stressful unknowns and possible hardships.  For some of us it’s an opportunity for positive change. What I am learning from all of this is that when we think of the old normal or the new normal, it is an expectation we are looking at, when in reality life is unpredictable by nature, and we are presented with changes more frequently than we realize.  A friend made me aware of a quote from Heraclitus that is very fitting at this time: “No man ever steps in the same river twice, for it is not the same river and he is not the same man.” This quote reminds me that change is constant, not just in the world around us, but within ourselves. Maybe there is no old normal or new normal. Maybe, instead, that’s just life, and we can learn to face every day with courage, openness, and the ability to meet all the new challenges that come our way.

 

I was about seven years old when my parents discovered that I was born with very little vision in my right eye. My left eye, it turns out, did the work for both of them. My mother was panicked when she found out and took me to every eye doctor she could find in the hopes of a treatment, operation, or cure. I don’t remember understanding much during those difficult times except that there was something terribly wrong with me that upset my mother. She eventually found a doctor at the Bellevue Hospital eye clinic who gave me “eye treatments” that, in part, involved wearing a patch over my left eye to force my right eye to see better. While wearing the eye patch, there were difficult and frustrating tasks like reading, tracing shapes, and using different machines, all geared to strengthen the vision in my right eye. One machine had a soldier on the left and a guard house on the right, and the task was to move the handles together until the soldier was in the guard house. I couldn’t see the guard house clearly enough, which ultimately made me feel even worse about having something wrong with me.

 

Of course my vision issues led to learning problems and, again, no one helped me understand the connection between the two. This made me feel even worse because I now had two problems. My mother was resourceful at finding tutors  to help me with reading and with homework. Even though most of the helpers were nice to me, I felt inadequate: a constant, overwhelming burden to my parents.

 

Accepting help as a child was a necessity because I was ashamed and embarrassed by what I was struggling with. Eventually I came to equate receiving assistance with something rather pathetic. My attitude about receiving help hasn’t changed until recently; however, what did change some years ago was my self-image. I was able to meet the challenges of life such as school, career, and living on my own. And though I no longer felt pathetic, for a long time, accepting help still implied admitting weakness. I have accepted help over the years, but have often felt compelled to return the favor somehow. Before I owned a car there were times that I would get a ride to wherever I was going. I made it mandatory that I pay for gas or tolls, in order to balance the give/take exchange. It embarrassed me to be on the receiving end without reciprocating. On some deeper level, I understood that it was my need to prove something to myself, and it was my issue alone because I don’t think anyone else saw it as tit-for-tat in any way.

 

In time, I also became curious about others’ views on accepting help. My husband eagerly accepts help because he sees it is an indication of how much he is loved and cared for. One of my friends is reluctant to accept help from her family because she is worried that the task she needs assistance with will be too much for them. They are more than willing to help, though, so it turns out that each person is thinking of what would be helpful to the other without actually talking about what is needed. It seems as if it’s not uncommon to assume we know what is helpful to someone else without actually talking about it. One example that comes to mind is when I worked as a school social worker. Parents, thinking they were being helpful, were sometimes too quick to help their children get dressed so that they wouldn’t be late for school, instead of teaching them how to dress themselves and therefore learn time-management skills.

 

Accepting help became an issue when I was diagnosed with cancer, which occurred at the same time that COVID-19 invaded our world. It was no longer safe to do many of the tasks we were used to doing on our own. Shopping became a huge obstacle for two reasons: first, my husband and I are both in the high-risk category, making it unsafe for us to do our own shopping; secondly, because suddenly items like cleaning supplies and paper goods became difficult to find. Receiving help became essential for survival. My stepdaughter would buy us supplies or give us what we needed from her own pantry. Her generosity was and continues to be a beautiful thing but it initially made me uneasy. I also needed assistance getting to the cancer center for my chemotherapy treatments. I couldn’t drive or take a car service so needed assistance getting there. I was amazed by how many people were so generous and willing to help. Both family and friends would change their schedules, without question or hesitation, just to help me.

 

This time, learning to accept help started to feel different for me because not only did I need the assistance but I also learned that those who willingly help do so out of a desire to reach out, connect, and in fact be helpful. While some people who are emotionally needy seem to have difficulty thinking of other people and being helpful, because they think they need all their energy for themselves, there are other people whose baskets are full, so to speak, and just want to share their wealth. Many people do good deeds because it provides a close connection to God, and kindness to others is seen as God’s work. This is important to one of my dear friends but she also says she loves to help people because it makes her feel good.

 

Spiritual teachers talk about how we are composed of body and soul. We are physical beings with the task of functioning productively in the world we live in. We use our intellect to help us find ways to be innovative, successful, and useful. We also live with ego, which in part leads to the feeling of satisfaction with our accomplishments, but can also breed issues of pride, envy, jealousy, insecurity, and resentment, which often creates conflict. Our souls, however, are connected to a higher power, God, and a universal energy where unconditional love exists. When we can respond to life’s challenges from our soul’s or a spiritual perspective, it becomes a heartwarming experience for both the giver and the receiver. It becomes a beautiful exchange. In my own life, I began to look forward to my rides to and from chemotherapy because of the love I received and was able to give in return. It was such a natural and joyous experience going to and from chemotherapy with people I love; the middle part, actually receiving chemotherapy, almost seemed like the least important part of my day.

 

When we love freely, there is an unconditional generosity that co-exists. We are sharing God’s gift to us with others. The sense of meaning it contributes to our lives is profound because it helps us connect to people on a deeper spiritual level. Life is best lived with an abundance of love and kindness. I have found that learning to accept help has nothing to do with neediness. In fact, my outlook on needing help is changing from something that was once negative to a meaningful opportunity to connect with others. I still think of reciprocating acts of kindness, as there are countless people who give of themselves so easily whom I am grateful for; however, I no longer believe I have to give back as some sort of quid-pro-quo. Instead, I “want” to because I want to share the love that is in my heart, which makes me feel very much alive.

Clearing the Isms of Communication

 

Just before starting chemotherapy, for T-cell lymphoma, I needed a biopsy of an enlarged lymph node. When I met with the surgeon who would be performing the procedure, she told me everything I needed to know, was reassuring, and I was comforted by her kind and professional demeanor. On the day of the procedure, just before it was to begin, she came into my room to greet me. While looking at her, I was suddenly stunned to see how young she was. Why hadn’t I noticed this before? It also made me wonder, Just when did I get so old? It seems as if everyone I meet is so young. As these thoughts raced through my mind, she understandably interpreted my pause to mean that I didn’t remember her, so she reintroduced herself. This exchange still makes me smile because, as I was thinking of how young she was, she was probably thinking that, because I’m older, I must have been having memory issues.

 

It continues to make me smile for several reasons, mostly because age appears to be a very big deal in our society. So many products promise to keep us young, but as we age there are many jokes and anxieties about memory loss, and often the first thing we worry about is getting Alzheimer’s disease. When my surgeon saw the paused expression on my face, it must have been on her mind as well; or, at least, something to be ruled out. I was taking a class recently to learn about reiki, and though I wasn’t surprised or uncomfortable to be the oldest student, I was surprised to hear how many agist jokes the instructor made throughout the course! She was clearly uncomfortable with my age, and I had to remind her that learning and growing continue even as we get older, and maybe especially because the desire to “keep as is” remains blessedly strong for many of us.

 

I’m discovering that when we communicate, we seem to have a filter that  assesses what we have seen and heard, and we unconsciously react; sometimes it could be just noticing differences, like age, or perhaps we have a flash of judgment or maybe a bit of discomfort. It’s a natural reaction to notice all the differences that exist among us, but if we are uncomfortable with differences, it can affect the way we interact. That, I believe, is an ism. It is clearer to see with racism, sexism, or agism, but when it comes to talking to someone who has an illness like cancer, the difference can be more subtle because our reactions tend to be tinged with emotions: love, compassion, sadness, or fear. Even though it might not have the negative judgment attached to other isms, it affects the quality of communication, nevertheless.

 

I have begun to notice the ism of cancer since starting treatment, as I have been talking to family, friends, neighbors, and many health-care providers. I have been wondering about what we hear when we communicate with others, with both new and familiar people. How do we react to what we have just heard? Are our reactions based on the facts of what we see and hear, or are they based on our own attitudes, reactions, opinions, and preconceived notions? Can we put all that aside and listen openly or do our own reactions interfere with the quality of our communication? There are a few neighbors in my apartment building whom I have always enjoyed chatting with. Our conversations were always very casual and light, but when I was diagnosed and started going through treatment they started to interact with me differently. Our conversations changed from light banter to their eagerness to help in any way possible, which I appreciated, but eventually that changed again. One woman looked at me with sympathy but still shared kind words. A nice gentleman’s expression shifted from a casual smile to an extreme sweet kindness, which was pleasant but also made me uncomfortable. Did my new appearance scare him? As he put his hand up in prayer for me, I immediately missed the casual banter that used to be, and then my own reaction interfered with our communication because suddenly I felt like I was being looked at with sympathy and pity. But then I wondered: Is that what they are projecting or what I am experiencing? It stems from my own issue about not wanting pity because it makes me feel uncomfortable and weak. Then again, perhaps I am seeing it as pity when it is instead love, concern, and compassion? Either way, it still interferes with true and open communication. There are also well-meaning people whom I will always love who try to encourage me with such phrases as, “You got this,” and, “You will beat this.” Even though I believe I will, and love their faith in me, those comments always come off as a reflection of their own fears and anxieties, so eventually I agree with them because it makes them feel better, but the difficulty I am experiencing at the moment somehow gets minimized.

 

The many health-care providers who treat me all chose to work with cancer patients. Some are attentive but quiet and reserved while others are curious about who I am, my career, what I have gone through, and where I am headed. Because it is their chosen profession to work with cancer patients, their demeanor is different. The stigma of cancer doesn’t seem to be as present. They look beyond it to the person who I am. It is the same with the support groups that I once facilitated as a social worker and now experience as a cancer patient and participant myself; there is a freedom of expression and therefore a connection with others that is less awkward. We listen to one another with compassion, without trying to fix anything. We can say scary things to each other with ease. We express our understanding without explanation, so the ability to truly listen becomes clear.

 

The anxiety that exists around the word “cancer” makes us all afraid; the fear becomes paralyzing as it brings us closer to the topic of death, our own mortality, as well as possibly losing someone we love. It’s as if our fear builds a wall between the healthy and the sick and it can make us feel uncomfortable, not knowing how to discuss such delicate topics. We want to be supportive but not upset a person who has an illness, so we don’t know how to approach the subject. When I first began experiencing symptoms and suspected I had cancer, I would talk about them with my sister, who listened sympathetically. Once, in a helpless way, she said, “I don’t know what to say.” It was the most important thing I could have heard because I felt her concern and knew she wanted to help but was uncomfortable with the helpless feeling she was experiencing. At that moment the helplessness didn’t bother me because that is exactly what we were both feeling. We connected beautifully on that emotion alone. What was wonderful was that she honestly expressed her concern and love for me. The connection was precious. I have come to understand from that exchange that we often aim to control life and situations but the basic fact is that not everything is controllable. 

 

Sometimes, it should be said, the patient might even perpetuate the uneasiness. In conversations where I am asked about my health and recuperation, I will often deflect and ask about the other person. If the other person also has a health issue, I will almost always hear them dismiss what they are going through because what I am going through is much more serious. It can feel like I’m setting the bar for human suffering, when in reality it is not a contest. It is yet another filter that we use. One of the most helpful tools I know for good listening came to me from my training in the school of social work, which was to be mindful when listening to others. As social workers, we learned to ask ourselves, Are we reacting to our agenda, or theirs? If we all do this we can learn to acknowledge the feelings that arise when we hear of someone else’s misfortune. Acknowledging the helplessness without trying to fix it is the key to breaking down the wall of uneasy dialogue. It is honest and real and if we can just observe the helplessness, fear, or insecurity without reacting to it, it can bring us closer to compassionate communication. We don’t have to aim for perfect moments, just real ones. And that can lead to the helpful ism: realism.

 

It will be three weeks from the date of writing this that I’ve finished my chemotherapy. As the side effects slowly disappear, I find myself wondering about how bears feel when they come out of hibernation, so I’ve watched a couple of videos on YouTube. For one bear in the trunk of a tree, waking up was a long, slow process. It began with his head resting on the opening in the tree trunk. He turned and only his legs could be seen stretching out through the opening, then eventually his arms and back to his head. He was yawning a lot and then he slowly climbed out of the tree. According to the narrator, he was unsteady on his feet for a few days. The first thing the bear looked for was food. It wasn’t a ravenous search, like I would have thought; it was slow. He started off with tree barks. It seemed to take a while for him to regain his strength and stamina. In my current state, I feel like that bear coming out of hibernation. Rebounding from the diminishing side effects of chemotherapy is a slow process, and each day I find myself a bit more alert, a little more physically able, and in better spirits. I didn’t realize while I was going through it just how awful chemotherapy was!

 

I think I was rather impatient with the process in the first week, because my arms and legs still hurt but I was expecting (or wanting) the discomfort to go away quickly. I wanted to be more mentally alert than I was and so I felt a bit sad that I was still tired and uninspired, and without medical appointments I didn’t know what to do with myself. As I think about this now, I realize that I have learned a lot about myself during chemotherapy. I see myself in a more positive light: I am getting through this ordeal and I am proud of my strength. I am more accepting and less judgmental about my “shortcomings.” I try not to see them as “shortcomings” because that word is punitive. I still have a tendency to think in that way, but I catch myself more quickly. I am kinder to myself and I try to accept all of who I am in a more loving manner. What I still see, however, is that I am often quite impatient and then I become unsure of myself. Many years ago someone gave me a little cartoon that is framed, and it sits on my bookshelf. It is from The Humble Philosopher, who says, “I don’t know what I want, but I want it now!” That describes me very well. I tend to prefer immediate gratification whenever possible, but I also understand that it is not always the best practice. So I try to rationalize that if a sleeping bear who comes out of hibernation starts off slowly, which seems logical, then why do I put pressure on myself to resume “normal activity” immediately?

 

I like wise sayings from newspapers, cartoons, cards, and Chinese fortune cookies. I save them for moments of inspiration. A card once given to me from a good friend said, “Life can be a sleeping bear. Gather your berries while you can.” I saved that because I have a tendency to demand that I accomplish something, but I am also a great procrastinator; the combination can be a bit of a dilemma. I saw this saying as a reminder not to procrastinate, but more recently I started to explore the possible positive attributes of procrastination. Perhaps procrastination is too harsh. I think that sometimes I’m just not ready and I put undue pressure on myself because, as my father once told me, “If I don’t do it now, I never will.” This statement used to bother me, because I never liked being told what to do, and even if I didn’t always understand why at the time, I always knew I would do whatever I needed to do when I was ready. I now understand that when I was delaying a task, it was because I was unsure of myself, so I let myself be influenced by the opinion of others.

 

When I was studying for my bachelor’s degree, which was a part-time endeavor, I took a year off to establish new career goals. I was originally planning on teaching, but then decided I needed something different. It was during that time that my father made that comment. His statement had nothing to do with me and my path. I took my time, researched various careers in the profession of helping, and decided that social work was the best fit for me. I trusted my determination and intention to find the right path, but even for the most determined of people, the path is not always so clear. Other factors, such as fear of failing, insecurities, letting someone else’s agenda get in the way, illness, and pandemics can also become obstacles that interfere with our goals.

 

The challenge for us is to clear a path so we can attain our goals in spite of these obstacles that might seem like detours. It may take a bit longer but the road leads to the same place. It requires trust and clear intentions. On the way, we can learn more about our strength, and pick up more tools to help us along our path. For me, a great tool is to remember to trust myself and my intentions, while acknowledging that everything is a process and that instant gratification is not always the best route. Understanding this basic fact is sometimes easier said than done, and it requires learning more about patience. It would seem that when we have expectations, such as an imposed time it takes to recuperate or a schedule of events that doesn’t agree with our own agenda, impatience sets in, underlying insecurities get reignited, and if we can’t accept the idea that limitations or delays exist, it interferes with our ability to trust the process. It has often taken me a long time to reach a goal (eight years to earn my bachelor’s degree), but when I kept my eye on the prize and believed it would eventually be possible, I was less discouraged. It would be easier for me now to trust the process and know that in due time the side effects of chemotherapy will eventually wear off. I do see that there are times when I can be more patient with myself. Going to college part-time was one example, and now with writing, it is another.

 

Sometimes when I allow the creative process to happen naturally, I stop writing because I don’t know what else to say, even though I know I am not finished. When I take a break, it is without pressure because I know I will finish eventually. Then, unexpectedly, a thought pops into my head about what I need to say, and I return to my computer with a burst of creative energy. One of my nephews was composing a piece of music once but put it away for what ended up being a number of years. When he eventually returned to it, he had wonderful ideas about how to finish it. Instead of looking at this as a delay or disappointment, he understood that music is a part of his life and when the right idea presents itself, he finds the inspiration to finish. I admire how he trusted himself and respect that creativity is a process.

 

Some people work well with schedules, but for others, the pressure to finish in a timely manner can hinder the creative process because it comes from a sense of discipline and conditioning from our past, like not being able to watch TV until  homework is done. Discipline is essential, and we have all accomplished so much because of it, but I don’t think it always works with creativity, as creativity comes from our imagination, our need to play with ideas in order to make new discoveries. The process seems to be free from thought; it comes from an intuitive place within ourselves and it appears when we allow ourselves to be receptive and open to unknown possibilities. It takes trust and patience, and time. Sometimes, like a bear in hibernation, we just need to sleep on it.

When I was in my twenties, I lived in a six-room railroad apartment with two roommates in the Park Slope section of Brooklyn. This was before it became the  multi-million-dollar neighborhood it is now. Much of our apartment retained its original features. There was a huge claw-footed bathtub that was wonderful when there was time for a bath, but the plumbing, unfortunately, was original as well. When showering, the water would randomly turn hot, cold, or off entirely. The rooms were huge and the ceilings were high, and at that time in life, all we saw was that the rent was cheap and the apartment was great for parties. We would gather all our friends, play all sorts of records on the stereo, and dance the night away. The next morning, I would look at the huge empty space that had been filled with life just a few hours earlier and instead see ashtrays filled with cigarette butts that were overflowing onto the table and empty cups and bottles thrown all over the place. On more than one occasion I would look at the mess with a variety of reactions, still enjoying the fun from the night before, but a sad, lonely feeling would overtake me as I saw this huge living room left empty except for the awful mess that was left behind. Today, living with cancer, I sometimes remember that very same feeling.

I’m definitely not comparing a party to six rounds of chemotherapy along with a clinical-trial medication. I am, however, identifying with the emptiness and the mess left behind. I was so elated after my last treatment, filled with the glory of a huge accomplishment, but now, a week later, treatment is over and my body is still a mess. I’m worn out, my arms and legs hurt, my nails are dark and ugly with ridges and strange patterns, and food is still not the enjoyable ritual it once was. My immune system is compromised but I can’t venture very far anyway due to Covid-19 haunting our world. I’m done but I’m not done because numerous tests and preparation for a stem-cell transplant are coming up shortly. This in-between state is like purgatory and it is very unsettling because I’m finished and yet I’m not. I’m technically in remission, which is wonderful, but the transplant means that I’m still being treated for cancer.

I get an anxious, unsettled feeling when I don’t know what is happening in my life, when I don’t have a plan. Because I prefer everything to be predictable, I used to make plans and “to-do” lists that would ease that unsettled feeling a bit (I am still comforted by this ritual). Even if I didn’t follow through, at least I had a plan. I understand now that life circumstances, such as cancer and Covid-19, mean that this is not always possible and that, even though being content is a pleasurable feeling, the fidgety and uncomfortable feeling I get if I’m not accomplishing anything will be there anyway. I was “OK” during those months of initial captivity, as I was busy being “in treatment,” but now what?

In addition to not having a plan, I am not fond of free time either, because I put pressure on myself to fill it productively. I seem to be momentarily forgetting all the lessons I have learned these past few months about trust, in myself and in my resourcefulness. I try to remind myself that a struggle is good for the soul (“good trouble,” as John Lewis said), because it brings about growth and change. Feeling uneasy is not pleasant but it is not terrible either.

As I think about how to fill my time, I am discovering that it is the emptiness that makes me uncomfortable. I can fill it productively and creatively by reading or sewing, and feel fulfilled, but it’s a fleeting feeling, as there is still something missing that brings about the question once again, “Who am I?” The answer became a bit clearer recently after a mediation session, when I was more open and receptive. The emptiness cannot be filled with activity, no matter how interesting or productive. The emptiness is about the need to be a part of something greater. It is about fulfillment through a connection beyond our existence here on earth. It’s about being with God, with Spirit, with Universal forces where an eternal source of unconditional love exists, just waiting for us to make that discovery.

Growing up, I didn’t really identify with my religion because, to me, it was merely a set of rules to follow, and so I did not have much of a meaningful connection. I did enjoy holiday meals and celebrations for the socializing part (the delicious dinners were always amazing), but I had to endure hours of heavy traffic and prayers that I couldn’t relate to. That was what religion meant to me until I started to find a need to look for deeper meaning in life. My search led me on different spiritual paths, including Buddhism and meditation, and it continues in earnest to this day. What I am finding on my path, in my relationships with both friends and family as well as with patients I’ve worked with over the years as a social worker, is the need for love: Loving ourselves is first and foremost, then it can be shared with other people. I am also recognizing that fear inhibits our ability to love, and it inhibits our overall sense of fulfillment in life. It seems as though so many of us function with this cloud of fear that we are hardly aware of. It manifests as resistance and judgment and prevents us from being all we can be.

I see myself as a spiritual seeker. In the course of my metaphysical path, the poem below was given to me by an English professor in college, and it continues to be a source of understanding. Each time I look at it, a different line calls out to me. I have always kept a copy in my journals, in my desk at work, and in my handbag. It’s now on my cell phone.

When I first read this poem, I was drawn to it because of a poor self-image at the time, and reflecting on the first lines eventually helped me see myself differently. Now the part that calls out to me is that we are all a “child of God.” That sense of belonging is a beautiful emotional feeling that I want to nurture, to understand better, and experience more. I don’t always know what spiritual path to follow, and that will become clear with time, but what is clear is that when I experience the beauty of unconditional love, I experience a warm, passionate feeling that fills my heart and my body with an overwhelming sense of bliss. It fills me up and pours out of me and it makes me want to shower everyone I know with love and affection. I sometimes feel angry, bitter, and jealous, and it constricts my energy, whereas channeling positive energy leaves me feeling open to possibilities. My intention is to aim for the latter in order to bring me further along in my spiritual search.

Seeking a spiritual path is another piece of the puzzle of life. I have always been a spiritual person and before I had cancer I followed a meditation practice that brought me peace and comfort. As a result, I was beginning to experience a strong sense of who I am no only as an individual but also as someone who is connected to the Universe’s forces. I felt like I was part of something greater than myself. Chemotherapy changed all that. I found it too difficult to maintain my daily practice, mostly because of the exhaustion. I often felt drugged so I couldn’t completely open myself up, but now, since I’ve finished with chemotherapy, I am starting to feel like my search can begin once again. I sometimes find myself feeling sad and lost, but I’m remembering that when I feel this way, I can turn to a higher power for comfort. This is a new feeling for me, and even though I don’t know where it will lead, it feels like the right direction. I often admired people who felt gratified by their faith, and this is something I now want for myself, so I am filled with a feeling of hope and gratitude as I move along on my spiritual path. In the meantime, I trust that I have the ability to get through this next ordeal of a stem-cell transplant, not just because I am strong and able, but because I am also putting my trust and faith in a higher power. And it comforts me knowing that, while I am on my path to wellness, I am not alone.

 

 

An old memory popped into my head. My husband and I loved going to flea markets and loved buying the strangest items. We were at an Indian powwow once, and he bought a turtle-shell bag with a furry tail attached. It was eye-catching and irresistible and we laughed about it for a long time. So much time has passed and so much has been lost since those fun flea market days.

Now our tiny apartment is crowded with stuff and we’ve been home looking at it for about as long as I’ve been on chemotherapy. 100 Days!  I no longer work, or go to restaurants with my friends, and I can’t even have a glass of wine or visit with my family. I  read, talk, sleep, and watch the world go by on TV. I order things only to have them delayed or back-ordered, and if something is delivered, it either doesn’t work or it’s the wrong size. The days just go by and it is only now, when I am hurting so much physically, that I realize those 100 days went by with me being in a fog, neither happy or sad, just passing time.

My chemotherapy has so far been manageable, up until 100 days. Suddenly my voice is raspy and wobbles, my body is weak, and all my joints hurt, from ankles to neck. My strength and perseverance feel depleted with the onset of the pain. It brings me out of my fog and now I grieve for all that I have lost, and it makes my heart ache with sadness.

Pain, or any kind of weakness, scares me because I am a self-sufficient person. The pain devastates me because it feels like my body is broken and I worry that so is my spirit. The pain is all-encompassing and I can think of nothing else. It strips away everything that I am and I am left with nothing. I am sad for the loss of me and my spunk. I’m alive but my life has been taken away from me. When I was a social-work intern at an agency for senior citizens, I visited a woman who was a retired psychologist. She had the beginning stages of Alzheimer’s Disease. One day she asked me, “So how does it feel to talk to a living corpse?” I think that she, too, was aware of all that had been stripped away and was left with the remains. 

I am afraid of being “nothing,” but then again there is the remote possibility that “nothing” is something to achieve, because if we are stripped of our identities, the masks we wear in life, then we can have a better chance at being our true authentic selves. Then I realize there is the ego part of me that demands to know the next step! What do I do about this? I could call my medical team and ask what I can take for the pain, but I am reluctant because I also want to feel what I feel fully, rather than coping with life by ignoring negative tendencies. I don’t like pain but I do like that it is making me feel vulnerable, as it’s pushing pent-up emotions to the surface, making me feel sad and angry. That could be a good thing if I weren’t also so scared. Then I remember what I know about grief. It is to be felt and expressed. Once we “let it all out,” we can soften the edges of hurt and continue to move forward in life. I guess I will take my sadness with me for a while.

There are guided meditations I enjoy listening to that begin with several suggestions. They start with relaxing breaths and as they progress we are asked to imagine a table where we are to place our worries, concerns, and the many roles we play: our jobs, our role in family, and in society. What are we left with? Who are we without all those roles? So much of who I think I am is stripped away from me and I am left with this feeling of rawness that is hard to face but also impossible to avoid. I am afraid of the depths of my pain, both physical and emotional. The fear is paralyzing. It’s hard to just let it be and experience it because I know there is a part of me that just wants to experience the good things in life. I don’t want to experience what I’m experiencing. I’m tired of not feeling well.

But when I allow myself to witness the pain, I realize that witnessing, or just observing the pain, is like the relaxation techniques in those meditations. It brings me a sense of peace and acceptance with my current state of being. I am not resisting or worrying; I’m just feeling what I feel.

I think I am learning on my 100th day to feel everything as fully as I can because beyond the fear there is the knowledge that nothing is permanent and “this too shall pass.” If I continue to bury the pain and only look at one facet of my life, I will miss the possibility of recognizing the lessons that exist in life.

The Bell

When I was in graduate school I wrote my papers by hand, literally writing things out then cutting up and pasting together sheets of paper with tape. When finished, I would put all the pieces together then type it up on my electric typewriter. That was how it went throughout graduate school, without too much trouble, until my final paper was due and my hand began to swell up, making it difficult to write. When I complained to my friends and fellow students, I discovered that many of us had ailments that seemed to pop up just at the end of our graduate-school experience. Hunter College School of Social Work was a lovely, safe place where we were nurtured by our professors and by one another. Moving on to become a mental health professional was unsettling. None of us felt quite ready, and I believe that these unusual ailments emerged to remind us that there were feelings we just weren’t dealing with. Well, we all moved on, of course, and my hand eventually felt better. Today, life is even easier with a computer. 

The fear of moving on was frightening. We were leaving a safe space and had difficulty facing the fear of struggling with the unknown. This is something I have been feeling again lately as I move toward the end of my chemotherapy treatment. Cancer and chemotherapy are physically and emotionally draining, but my doctor and supportive medical staff have helped me through it by taking care of me on both a physical and emotional level. They always reassured me when I needed it and helped me through difficult and frightening times. Knowing I would have to leave their safety net was difficult, and equally frightening was having to move on to another unknown. I felt sad and frightened, but I pushed through my last chemotherapy treatment anyway, albeit with ambivalence. 

The nurse administering my final treatment was wonderful and when I told her that it was my last one, she became excited and asked me if I wanted to ring the bell, a ritual for patients finishing their last chemotherapy treatment. At first I wasn’t sure I wanted to. In boxing matches, the bell is rung after the end of a round, but the fight is not necessarily over. I was reluctant to ring the bell because my struggle is not yet over, but I decided to ring it anyway, and I was so glad that I did. It changed everything.

As we were walking over to the bell, my nurse told the other nurses where we were headed and they got excited and joined me for the ritual. They watched and cheered as I rang the bell. I rang once tentatively, then again with more gusto. The sound and vibration resonated through me and at that moment my reluctance faded away and  was replaced by the joy of the staff cheering me on, which made me realize that I accomplished something big. I did it! I experienced tremendous anxiety during the eight months of having symptoms but not knowing what ailed me. Then I got through 18 weeks of ingesting all sorts of chemicals that had many miserable side effects. I got through numerous tests and challenges, and even though my fight is not over, the sound of the bell at that very moment made me ready for the next challenge. It washed away my anxiety and ambivalence and replaced them with the elated feeling of accomplishment. At that moment nothing else mattered, not even fear of the unknown.

Life has a way of giving us what we need when we need it. A day or two before my last treatment, I was reading a magazine article by Brandi-Ann Uyemura that spoke about ways of rediscovering your passion. She wrote about suffering and stated that the word “passion” comes from the Latin which means to suffer. She goes on to say, “The path toward finding passion encompasses suffering and joy, pain and opportunity.” She helped me to understand that suffering, though unpleasant, is not something to avoid. Facing it and moving through it brings its own set of rewards. 

Just a few days later, the civil rights leader Rep. John Lewis died. I was watching a retrospective on his life’s achievements and there was a quote that rang true for me. He said, “Do not get lost in a sea of despair. Be hopeful, be optimistic. Our struggle is not the struggle of a day, a week, a month or a year. It is the struggle of a lifetime. Never ever be afraid to make some noise and get in good trouble, necessary trouble.”

Both of these messages inspire me to connect with the brave part of me, to move with eagerness and determination toward the many unknown paths that lie ahead of me. Yes, I will be afraid, and uneasy, but I will move forward anyway because the struggle will be worth it. Their messages remind me that facing a struggle is not a curse or a burden. It’s part of the experience of life. The struggle is in trying to figure it all out, in finding our way. The reward of struggle can be inspiring, like ringing a bell after getting through a difficult ordeal. It helps us see our strength and endurance, and rituals, in general, help us mark an ending, which gets us ready for a new beginning. Struggle helps unknown parts of us emerge, like when I am trying to figure out how to design my next embroidery project, and a spurt of creativity eventually pops up, and it feels wonderful because I figured it out. My father possessed this quality. He made every misfortune sound like a fun adventure. He grew up during the Great Depression and told fascinating stories about his resourcefulness during desperate times. My brother inherited this quality, too, and he always manages to see problems that comes his way as an exciting challenge. This is a quality I always appreciated but it is only now that I can acknowledge it at a deeper level, because I have learned to look at challenge differently.

I will go through the next step of my recovery, stem-cell transplant, carefully and successfully. I will seek the guidance of another supportive team. I will get through it and when it is over, I will be able to move on to the next part of my life. I have faith that as one door closes, another opens, and that there will be another path for me to follow. I am not sure what it is at this time, but I don’t need to know. I have faith that the unknown path will reveal itself when I am ready, and I am not afraid of the struggle anymore. In fact, I feel ready for it.

After my third chemotherapy treatment, I met with my doctor, virtually, of course. We were reviewing the great results of my PET scan, as my cancer cells had shrunk. We were so pleased and to express my excitement, I said, “I can’t wait till the end.” It would appear that my doctor heard something that I was not  consciously aware of at the time because he replied that he hoped treatment would remain successful and that I would be able to live for a long time.  

I laughed at my “Freudian slip,” corrected myself, and we moved on, but I thought about my comment for a long time after. Freudian slips are unintentional comments we make that reveal unconscious feelings or wishes. Do I really want to die? I didn’t think I did, but I also can’t deny that dying has crossed my mind quite frequently since being diagnosed with cancer. When I was first experiencing symptoms, I knew something was wrong but it took time fo find out what it was. I was always tired, I had hives that would come and go, and I mysteriously lost a bit of weight. I was anxious and had panic attacks. I was frightened that something was seriously wrong and answers weren’t coming fast enough. When I finally found my way to Memorial Sloan Kettering and my current doctor, I was oddly relieved to find out that my symptoms were real. It was cancer, and my anxiety lessened once treatment started. My focus turned  from fear of dying to coping with chemotherapy and its side effects: hair loss,  more weight loss, loss of taste, nausea, and fatigue, just to name a few.

Thinking about the Freudian slip helped me see that there were emotions brewing subconsciously that I was less aware of. I was scared and I pushed those feelings aside because I wanted to be brave, but I was too anxious. Fortunately, life has that way of giving us what we need. If we are paying attention, there is a learning experience in there somewhere, a message telling us that this is not just a misfortune, this is also an opportunity to evolve. I began to experience pain in practically every joint in my body, which became overwhelming. It was all I could think about and so consuming that it also made me feel emotionally vulnerable, which might explain my Freudian slip. I realized, on a deeper level, just how scared and sad I really was. The sadness overwhelmed me and all I could do was cry. I realized I was afraid of dying, I wanted to die, and wanted life to go back to the way it was. It was all swirling around in my head at the same time.

When I was working in a community mental health clinic, and someone began to express suicidal thoughts, I would gently ask questions to learn more about what they were thinking and feeling. One of the most important things I discovered was the difference between really wanting to die and just wanting the pain to go away. That comes back to me now because saying you want to die is somehow easier than dealing with the fear, the pain, and the unknown. I was afraid that my life was slipping away from me.  When treatment began, I was calm for a while, but I am afraid again because, what if it comes back? So many people who have cancer talk about waiting for “the other shoe to drop.” Cancer always exists somehow. It’s always there in the back of your thoughts.  Now I am almost finished with chemotherapy and am moving toward stem-cell transplant and I realize my fear is about getting better. Now I am a person fighting cancer. Who will I be once this is all over? I lost so much, will I be able to rebuild my life? It’s all too upsetting to think about.

The slip of “I can’t wait till the end” implies that I’d rather die than deal with the fear of the unknown. It’s like the game of chicken that we see in movies from the 1950s, with two cars driving head-on toward each other. On one hand, death is imminent for either or both drivers unless someone “chickens out” and veers away from the other driver. That person is considered the coward. Does that mean it’s more appealing to die than to be a coward? If that’s the case, is it easier to think about death than to deal with our fear?

In truth, I don’t want to die and I believe there is a lot of life ahead of me. I don’t want to face all the unknown factors that lie ahead of me either. I don’t want to be afraid, and I want life to be predictable. In spite of those desires, I am fearful anyway. When I experience new symptoms of chemotherapy, I realize I am afraid. I feel so frail sometimes, it’s upsetting. My fear also comes to the surface when I wake up each morning and realize I have the whole day ahead of me with nothing to do but stay home where it is safe. I never think positively about my cancer cells shrinking because I am afraid of moving forward to the next step in my life. I know I will move forward, but I don’t know what I am moving toward.

Wishing for death seems like the easy way out. I don’t want to die so I veer away from that direction and am left with fear. It is not with the cowardice of the movie version of the game; it is with bravery that I (and all of us) try to face fear. Fear is  so daunting because we think we are facing fear without the tools that help us to deal or cope. We don’t know what to expect from this next phase of many unknown possibilities, and when you’re a person who likes to know what the next step is in advance, it is an unsettling and paralyzing feeling. There is a tarot card called The Fool, who is standing on the edge of a cliff ready to leap forward to a new beginning and a new challenge in life. Does he move forward with courage or does he resist? The position of the card, upright or reversed, determines the answer along with the rest of the cards chosen, but I am reminded of The Fool at this point in time because the question for me is: How will I move forward with my fear?

This is a time of transition for me when my old habits just do not fit anymore, and I am developing a new way of coping. I begin to remember that this is not the first time I moved beyond fear. In the past, I carried my fear with me in my “emotional baggage,” did not deny its existence nor try to control it either. I am now moving forward with fear and I remember that this is a time to trust in myself and in my instinct to survive and do the best I can. I have faith in myself because I have gotten past difficult things before. Being so fearful hides the fact that I am a survivor.

Faith in our ability to survive is essential, but there is also faith in a spiritual sense. When I was a hospice worker, some patients and families who practiced their faith, prayed, and sought the help of their religious leaders were better able to cope with the saddest of life events. They were able to say good-bye to their loved ones with the beauty and gift of unconditional love. I think of that now because sometimes my fear is overwhelming, but during my own prayer and meditation, I am comforted.  Sometimes I am too tired, and sometimes I just want to be miserable, but other times, when I am open and receptive, I meditate and am filled with a feeling of unconditional love, which brings me to the understanding that I am surrounded by love both here on earth and beyond. That is the beauty of trust and faith. That is true grace.

I received the best training on mental health disorders at my first social work position in a community mental health clinic. I was particularly intrigued by personality disorders because people who fall under that large diagnostic umbrella just seem larger than life. They can walk into a room and fill it with their presence. They come forth as self-assured people with grand schemes and fantastic energy. They seek lots of attention and they disregard the feelings of others. Everything they are interested in, think about, or act on, is about benefiting themselves.

When learning about different diagnoses, whether medical or psychological, we often read about symptoms and think they are describing us. I remember worrying at the time that I had a personality disorder because I was frequently absorbed by my own emotional turmoil. Some days it consumed me. I also happened to be in therapy, so I asked my therapist if he thought I had a personality disorder. His response was, “No, you’re just a run-of-the-mill neurotic.”

Neurotic people worry about everything in excess. We are a self-conscious, worried bunch of people who often have difficulty putting our thoughts and feelings into perspective. It’s like having a constant voice inside your head second-guessing, “Are you sure? Well, maybe you shouldn’t.” You never feel lonely being neurotic because there is always that voice of self-doubt in your head. There is often no logic to the things we neurotics worry about, and the amount of time spent worrying is endless. Once, when I was taking a trip, I reserved my car service with plenty of time to get to the airport and to check in. But I worried about not being able to sleep, then about the alarm not working. Both went smoothly, of course, but then I worried about my car not showing up. When it arrived, on time, I worried about traffic, the crowds at the airport, my bag getting lost, taking off my shoes and walking barefoot at the security checkpoint…and on and on the story goes. My anxiety is like a pinball machine: landing on one point for a while then suddenly shooting off into another direction. It’s exhausting.

I think about all this now because being home due to Covid-19 and chemotherapy is certainly not boring when you’re neurotic. There is even more than the usual to worry about, and the amount of cleaning just to avoid this invisible germ is endless. If someone is coughing ten yards away and it’s windy outside, can I get the virus? Newscasters talk about what could happen if you do this or don’t do that. A neurotic person hears the word “could” and wonders about the percentage of likelihood, possibly more than the message itself.

I worry about all this and then some. I have a new concern that occupies my attention these days. My entire career was spent in the social services profession, where caring about the well-being of other people was a priority. It was meaningful work, so no complaints there, but now that it’s time to think of me first, I realize I feel guilty having that desire. I recently discovered as much when I was surrendering to my exhaustion, which, by the way, felt wonderful. I didn’t think of anyone but me. It helped me to see that all that energy spent trying to be the “perfect person” is misspent. In my exhaustion I thought, “Why? How does it benefit me? Will it really make things better?” Maybe it is wiser to just be myself and take care of my own needs.

Life feels different now. First, I am not socializing. I don’t count phone calls, texts, and Zoom as socializing. Also, I am not working and I still have to remind myself that I am not well. I have cancer so it’s time to think about me first. That  still sounds a bit too much, like I am making an excuse for thinking about me first. Well, sometimes the benefit of being neurotic is that self-reflection comes easy, so yes, I am still making excuses. Thinking of myself is now unapologetically my mission and it should be easy but it’s not. Sometimes when I do think of me first, I instinctively correct myself to think of another person. For instance, when I get a text asking about how I am, I immediately answer with all my woes of the moment, but then I remember to ask about them and go back and add a sentence of concern for them before my problems, to show I am thinking of them first. Then I feel entitled to move on to my favorite subject: me.

Thinking of “me first” is inherently uncomfortable for many women of my generation, but the Women’s Liberation Movement of the 1970s helped bring this fact to our attention, and as I become more aware of my neurotic tendency towards self-correction, I decide that I am a work in progress, which is an easier, kinder way of living. I am not giving up on self-improvement; it’s an admirable goal, so I try to be more aware of the neurosis that acts up when I’m ignoring who I am. Its aim is to control what is usually uncontrollable. It becomes a frustrating endeavor.

It’s challenging enough to struggle through the symptoms of chemotherapy, so lately, I find myself thinking only of me (not always, but more frequently than in the past). At times, I even have to remind myself to be mindful of other people. I still have to rationalize to myself that I deserve to think of myself first. The transition to this new mindset is like trying on a pair of shoes, an outfit, or a color you don’t usually wear. You like it but it’s not your style; however, each time you try it on, it looks better and better until it feels exciting to have a new look. I’m beginning to feel excited and self-indulgent each time I find myself thinking of me first. That being said, it’s getting to be a chore to read about all the current and intense news stories. When I talk about it with other people, I quickly lose interest and want to go back to talking about myself.

Thinking of me first is not only fun but it’s liberating and honest. I feel happier, strutting around with my new self as if it’s a brand new outfit. Does that mean I have a personality disorder? Well, I believe that a person with a true personality disorder would never ask him or herself that question. Only a “run-of-the-mill neurotic” person would.

When I began chemotherapy, I lost most of my hair pretty quickly. What remains is a feathering around my head, which makes me look like a monk. The interesting thing, however, is that as my eyebrows are thinning, the left one is much thinner than the right one. My eyelashes are falling out, too; however, my left eye has lost a lot more than my right eye. I also developed a problem with my voice and, upon an initial examination, I learned that there is a “slight asymmetrical quality” to my vocal cords. The left side is slightly weaker. These various uneven qualities seem to be in line with several other imbalances in my life.

When I was seven years old, I discovered that I have very little vision in my right eye. My parents took me to every eye doctor imaginable and I went for eye treatments at Bellevue Hospital to see if they could make the right eye work. They couldn’t. Oddly enough, I learned how to write before my vision problem was discovered and naturally began writing with my left hand. In those days, for some unknown reason, it was bad to be left-handed, so my father made me learn how to write with my right hand. To this day I have difficulty differentiating right from left. I remember traveling with a friend and while she drove I would navigate. She would ask, “Do I turn right or left?” I would point and say, “That way,” hoping I guessed right. Thank goodness for the invention of navigational systems. I still refer to my eyes as “my good eye” and “my bad eye.” I was so happy to get married because, among other reasons, we wear our rings on our left hand. I usually touch my wedding ring whenever I am in a situation to have to know which way is right or left.

I consider my right eye as “just there” for symmetry, because I see that my left eye, my good eye, just took over. It pushed aside my right eye and started to do all the work. I have come to realize that this is a frequent coping mechanism I’ve somehow learned to use in my life. I can plod ahead through life with a lot of heavy emotional baggage, without even thinking it’s possible to let it go; I just move ahead because I have things to do. But now, when I feel the weight of that luggage, it makes me think about all the asymmetrical issues I am experiencing in life and in chemotherapy, and that there is a larger theme in all of this.

I have written before about the importance of creating a balance in life. I believe the qualities in us that we refer to as “negatives” teach us lessons and are important for our growth. Accepting that they exist without judging them naturally leads us to find ways to overcome certain obstacles so we can discover our resilience. In addition, it helps us appreciate the positive parts of our lives that much more, as we have much to compare it to. But if creating an equilibrium is the goal, it is sometimes easier said than done, which brings me back to an asymmetrical life.

Perhaps asymmetry is more the norm than we’d like to admit, and by thinking of balance as the goal we are ignoring the benefits we can gain from looking at all the unevenness that is a part of our life. Having goals inspires us and focuses us toward higher learning and a greater state of being, but seeing where we are is just as important as seeing where we want to go.

I am leaning that our asymmetrical qualities are the instruments we can use to get us toward balance. It’s about recognizing the tools we have, and how to use them to get us to where we want to go. I see that with my vision issues. Having vision in only one eye created learning problems when I was growing up, which in turn fostered a poor self-image. I spent years feeling inadequate, just pushing things aside and burying them so I might do the best that I could, which was never enough. But as I am learning about acceptance and having compassion for myself, I look at all the ways vision in one eye made me a more persistent person, and I am amazed. Vision in one eye impairs perceptual skills, which made driving difficult, to say the least, so when I got a car I panicked as I drove up Ocean Parkway in Brooklyn on my way to work. My only goal at the time was to get to work one day without the panic setting in. A wise friend suggested that I learn to trust that the lanes were wide enough for me and my car. What a wonderful recommendation, but having a poor self-image also affects one’s ability to trust. Still, I kept her suggestion in mind because I liked her logic, and kept driving to work. Eventually I understood that that there was room for me on Ocean Parkway, and later I discovered that there is also room for me in this wonderful Universe. I now drive without panicking. In fact, sometimes when I drive I feel so elated that this is a skill I learned spite of my lack of perception. I now have a car with cameras and it is so excitingly liberating! Acknowledging the asymmetrical qualities that exist in us helps us see that they are not necessarily weaknesses. Instead of wishing things were better, we can use what we have to move forward. Those very qualities we try to ignore are what we use to bring us further along in life. When I became aware that I was driving to work without panicking, it lightened the load of my heavy baggage, and the pride I felt in being a driver helped me understand that what I thought was an obstacle was really the vehicle to liberation.

In life, it is often easy to point to obstacles, like my vision problem or being a slow student, as reasons for not moving on. It’s safer to say, “I can’t,” and let fear and old baggage get the better of us, but I see that each time I achieve something, my heavy baggage gets a little lighter, and I feel better about who I am and who I am becoming. There is always a place for us in the Universe even if a poor self-image might suggest otherwise. Learning to see our imbalances as the tools we work with instead of limitations lifts our spirits. When I realized I was a smart person but a slow reader, my vision issues made me structure my time differently, allowing me to study for my bachelor’s and master’s degrees.

So as I go through chemotherapy and watch the changes in my body, I do become upset at all that I have lost during this illness. I have periods where I just feel sad and lethargic, which is another imbalance, but I believe that there is value in succumbing to the sadness. We can examine it, make friends with it, and eventually learn from it. Laying around feeling sad and being unmotivated is what made me eventually question why and what, and it gave me the idea to write.

After receiving my bachelor’s degree, I worked at several different agencies as an assistant social worker to see if this would be a career I’d want to pursue. One job I had was in a nursing home, which paved the way to my future because in graduate school I pursued the field of geriatric social work and spent several years exclusively with senior citizens. At the nursing home, I would make my rounds on the floors and say hello to all the residents. I learned so much about life, and aging, in those greetings. For one thing, I learned that seniors love to give advice. I would say, “Hello, how are you today?” One lady I visited, Esther, would frown and say, “Oy, don’t get old!” I would smile back and say, “I’ll try not to,” then sit with her to listen to her life story. Another woman I liked to greet, Vera, would reflect for a second or two and then respond with a smile, “Well, I’m still breathing, so I must be having a good day!”

Both ladies had medical conditions that made nursing home placement necessary, but their respective attitudes about aging are what stuck with me, even to this day. Their views on life were like looking at a glass half-full or half-empty. I don’t remember their individual life stories but considering their outlook on life made me think of Erik Erikson’s stages of psychosocial development, and the last stage of adulthood in particular: integrity vs. despair. Looking back on life, did these ladies have a sense of fulfillment and/or acceptance? Or was there a sense of dissatisfaction? Esther, I imagine, had a difficult life with a lot of regrets, while Vera seemed to accept the obstacles that came her way.

I think about them now, having been diagnosed with cancer and struggling with the side effects of chemotherapy. I think I relate to both women. When I was first diagnosed I firmly believed that I would beat this awful disease. It helped my overall attitude as chemotherapy began taking its toll. I took it all in stride and at times was able to look at the brighter side of chemotherapy. Losing my hair during Covid-19 was a blessing in disguise because hair salons were closed, and, when I had hair I needed it cut regularly or else it would get wide and bushy and difficult to control. When I knew I was going to lose my hair, I thought it would be fun to dye it pink before losing it, but then I never got the chance. So one of my dear friends bought me a pink wig instead. It’s fun wearing it and having a whole new look. It’s even fun being bald; I like the feeling of air on my head and not waking up with hair all over my face. It saves me time and money. I like being thinner but I don’t like that I always have a bad taste in my mouth or that eating is a chore instead of an outlet for my difficult-to-deal-with emotions. I like being a size 8 but I can’t go shopping, so everything I own is big on me. I order stuff but deliveries are slower than usual and I have to wait. Waiting is a constant in my life right now.

I can see both ladies in me. Like Vera, I know that life is definitely easier with a positive attitude. There are things to laugh at all the time and knowing that everything will be all right is very reassuring. People I talk with are gratified by my positive attitude, that I am learning life lessons, and making lemonade out of the lemons I have been handed. More importantly, I am gratified that I am able to look at this experience and see the lessons it is teaching me about my own resilience. I am genuinely gratified to realize how comfortable and compassionate I have become with myself and others. All these qualities are strengths that make the ordeal of cancer and Covid-19 easier to deal with. I see the Vera in me who wades through the muck of life with a smile because she knows she will get to the other side. She can pass through the muck with a sense of humor because she knows that, no matter what happens, everything will work itself out in the end.

But then there is the Esther in me. I am tired all the time and it’s too hard to stay motivated and even harder at times to focus. I wake up at odd hours and can’t go back to sleep but desperately want to because there is too much time on my hands and I don’t feel like sewing, writing, reading, meditating, or watching motivating videos on YouTube. I used to sew bags and sell them at craft shows. At one of the fairs, there was a man with his mother selling their crafts next to me, and on this particular day neither of us made any sales but I won a ribbon for my very unusual and creative neck-tie bags. I was happy. This man next to me was not. He asked me why I was so happy and when I told him his face was sour, he said, “I HATE happy.” I feel like that sometimes. I hate having cancer and feel like I have been patient enough and just want it to go away now. I don’t care when the news is good that chemotherapy is working because I am still struggling with a plethora of annoying symptoms, and what if they don’t go away when I am done with treatment? What if, after all this, cancer comes back anyway?

But then there is the Vera side of me that takes one day at a time and tries to smile because she knows life is more manageable when it is lived with an open heart. With an open heart the glass is always half-full and, like Bob Marley said, “Everything will be all right.”

I understand that both of these sides to my personality are real and necessary. The Esther part of me is as real as the Vera side of me. When I remember these two ladies now, I see both were strong and resilient for living through the obstacles they experienced, but I like knowing that I am not either/or, and that there’s a yin/yang balance of positive and negative in me. The grumpy side of me remains necessary because those difficult-to-acknowledge feelings need to be identified and expressed. Then there is self-compassion, nurturance, and a little indulgence that help soften the edges so that the Vera and Esther in me can walk together toward the sunrise of a new day.

I’ve always thought of myself as a relatively calm person. I soothe and reassure others and have been told many times that my voice has a calming effect.   I even have a meditation practice of 4 years which I thought contributes to my calm demeanor. Of course, I would get anxious at times, but those moments seemed to be fleeting, or maybe I never really paid much attention to the extent of my anxiety. I would get anxious about being late, disappointing, or upsetting someone, speaking out, not being good enough, the list could go on and on. When I am anxious my heart beats so hard, it could pop right out of my chest. I can’t think about anything other than what I am anxious about and then when the moment passes, I would dismiss that awful feeling and go back to the calm grounded person I thought I was.  It wasn’t until I began to experience symptoms which turned out to be cancer that I understood on a deeper level what anxiety really is.

  

When I began to feel my symptoms, I became preoccupied and fearful that something was wrong with my body. It was all I can think about and because my energy level became depleted, I stopped working. I retired 5 years ago from my full-time job as a social worker and then worked part time in a hospice agency and began stress management talks with senior citizens. It’s ironic how I was able to teach others to be calm, through meditation and relaxation techniques, however when I began to become persistently anxious, none of what I taught was effective. They were all wise words of wisdom from the many books  I read and meditations I practiced over the years, but  when l began to lose my health I saw that the anxiety was deeply rooted and entwined with other emotions.  I saw that even though my seniors appreciated my talks and the attention that our groups provided, I didn’t see how their anxiety was attached to loss, an overall lack of control and grief, all camouflaged by various symptoms of anxiety.

  

Now that I felt it too, anxiety took on a deeper meaning. The anxiety was different from being late, though that is not to be ignored either because being late feels disrespectful to the person waiting and I am anxious about disappointing people.  The anxiety I felt over my health, however, made me frightened. If I can’t do things for myself, what will I do? How will I manage? My body is broken! I must have done something wrong! I didn’t follow healthy diets and now I am paying for it! Will I die? Am I ready to die? What about all the money I saved for my old age? Will I not get old? Oh, if this is as old as I’ll get and still haven’t spent it, I did my life all wrong!

 These are only some of the thoughts go through my head when I am anxious. Some thoughts are filled with self-criticism, which I am becoming more aware of. However, anxiety based on fear of loss of health brings us closer to our mortality. We are grieving for the loss of our health and fearful that we are near the end of our lives.  It also means we are in a vulnerable position where we have to depend on others and that brings up trust issues. Feeling regrets over what we did or didn’t do feels like an issue of high expectations instead of self-acceptance.

 I now see that anxiety is a real part of me and though it’s puzzling how I can be both calm and anxious, both qualities co-exist. Anxiety doesn’t define me. It is only one of many qualities that make up who I am. We are not all one thing or another. We are a mixture of ingredients that make up our identities. Like the Yin/Yang sign that balances the positive and negative. It is the balance that is worth reaching for. But that reach, I know, is sometimes beyond our grasp and we are not always in perfect balance as the ying/yang symbol portrays.

Those months of tests to find out what was wrong was overwhelming.  I experienced shame and the feeling that I did something wrong to make this awful thing happen to me. It took a long time for me to ask my doctor how I got T cell lymphoma. He said it was a mutation of certain cells. His answer was more complex, but in essence, his answer helped me to see how I beat myself up. I turned a mutation of cells into an old self-hating agenda.

 I have come to understand that anxiety is also because of our fear that we will not be able to handle whatever stressful situation we are facing. We won’t be able to control the uncontrollable so we get anxious, but in truth there are many things we cannot control.

I am now more than halfway through chemotherapy and though my anxiety continues, in many ways it lessened. I carry my anxiety with me like an overloaded suitcase, knowing I won’t be able to leave anything behind. As I became familiar with the amazing staff of professionals taking care of me, my anxiety lessened because I began to trust them. Whenever I get a new side effect, I become anxious again, thinking that my body is frail and will break somehow and I worry about calling them for fear that I did something wrong. I usually end up calling and am reassured.

It helps me see that by carrying my anxiety with me and not fighting it, I look instead for ways to manage it, like striking a balance. At times, the balance comes by trusting the professionals who take care of me, and always by trusting myself. I begin to remember that my old agenda is not helpful, it is not useful or even accurate. It has nothing to do with who I am today. I work at managing my anxiety by balancing it with trust. I get annoyed when someone trying to be helpful says, “Calm down” because I know it won’t go away on demand. Instead, I look for ways to lighten my load, like asking people to help me, because after all there is so much beyond my control.

My anxiety also lessens when I see that I am managing after all, like following written directions that initially look too difficult, but in rereading it, it looks easier. By balancing anxiety with trust, in yourself and in others, it lightens our load and we can leave past trauma behind, because it interferes with who we are today and in our present ability to function.

When I was a kid, I preferred television over going out to play. I would set up my beloved dolls around me on the sofa and we would watch TV together. I loved “I Love Lucy” and “The Joan Davis Show”. Both were bold women who were not afraid to be funny, unique and strong. Of course, I watched Popeye and was so disturbed that he let Brutus get the better of him until he ate his spinach. Why couldn’t he be strong all the time? I watched The Nearsighted Mr. Magoo, I don’t know why I watched so religiously because it made me nervous. I am very nearsighted, and it just upset me to see him get into clumsy situations, because he looked more foolish than someone trying to live his life with a handicap. Did I look like that? My poor vision was and is a major issue in my life.  I watched TV for what seemed like hours and I was quite content with the company of my dolls, until my father came into the living room and demanded that I go out to play with the other kids on the block. I complained that I didn’t have anyone to play with but it hardly mattered. Watching so much TV was bad. Going out to play was good. He wanted what was good for me. Even my mother wanted me to go out to play and it was odd that it hardly seemed to matter to them that I had no one to play with nor did it matter that that I was quite content to stay home and enjoy the company of my dolls who never ridiculed or made fun of me.

So, I would be forced to be go out to play. I would leave my dolls in the living room with the TV on while I went out. I remember finding some kids to play with for a while here and there, but odd things would happen to put an end to our relationship, and I’d be back on the couch with my favored companions. What things? Well I remember a boy named Richie. He vomited and his mother got all weird. I remember Andrea only insisted on being Barbie and I had to be Ken. Debbie’s mother was divorced. Who heard of that? Robert wanted to compare private body parts and one day tied a string around my neck.  It wasn’t that I was so opinionated and that these issues were too problematic for me, I think I just needed a reason to go back and watch TV with my dolls, which was much easier to negotiate. I had playmates for periods of time, but I don’t recall having many friends.

As an adult looking back on my life, I see this pattern has repeated itself in different forms. I had different friends for various stages in my life. They were meaningful relationships but for some reason I would drift away. My parents’ message to go out and play with your friends became my message to myself. I felt compelled to find friends so I would try to reach out, then pull back and end up feeling sorry for myself because I had no one to play with. My parents had many friends and frequent social gatherings. So did my sisters and brother. Sometimes I would hang out with them and their friends because I didn’t have enough of my own.  Was it the I didn’t have enough friends or maybe I didn’t know how to be a friend?

I was plagued with vision problems which created learning problems, not to mention difficult family dynamics, and a poor self-image, to say the least,  and so when it came to escaping all that difficulty with a friend for solace, friends seemed to be an additional chore rather than an outlet for all the pent up emotional turmoil that I was experiencing.

As I write this, I am reminded again how damaging a poor self-image can be. Even when it is pushed away and ignored, a poor self-image hurts. Someone says something benign and you get upset without understanding why.  Even when you accomplish things like a master’s degree, meaningful career or develop an amazing talent, a poor self-image still interferes. You know it is so because you didn’t think you were good enough for the promotion, or your talents are only for your enjoyment and not to be shared. There is always a feeling of being a fake. Yes, a poor self-image hurts even when it is ignored. Especially when it is ignored. There is no amount of compensation or success that can make a poor self-image go away.

I spent much of my life trying to ignore that kind of pain.  I worked at accomplishing things with the assumption that accomplishments would eliminate a feeling of inadequacy. Then years in therapy to try to understand its origins and make peace with it so I can let it go.

Now I am seeing lessons in everything. I see my poor self-image kept me from having meaningful relationships because I believed I didn’t measure up. It kept me from seeing myself for I was, and how I evolved into who I am. I am learning that a feeling of inadequacy is just that; it is not the reality.  I am learning now that when I can see myself with compassion instead of judgement, I am quite resourceful.  I didn’t have meaningful friendships because I didn’t know how to be a friend to myself. As I look back, all the obstacles I faced gave me moxie, like Lucille Ball and Joan Davis! And even Imogene Coca!

So perhaps I wasn’t really lonely because I had my Self. As I grow and learn about myself, I see that I always preferred my own company, but there was a certain pressure to be like everyone else. As I got older there was still the pressure I put upon myself to be more social and it is indeed a real need but there is a clear difference between isolation and loneliness. I was lonely until I learned  how to find comfort in being me. It then became easy to make the friends I do have, which are my friends for life. I don’t have a big network of friends.  I find the I am content to have a small number of friends from various parts of my life and we share love intimacy and comfort from being with each other. I am also discovering that there are other people in my life as well, who are eager to share and give their love too. All I have to do is reach out. I find comfort in my friendships, but I also find comfort in my own company, and being home for over two months while I undergo chemotherapy and avoid Covid 19 taught me that I am my best resource.

I am, however, currently isolated. Covid 19 and Cancer are the culprits.  Zoom, FaceTime, texting and good old-fashioned phone calls help, but I am seeing that nothing can replace face to face contact and the joy of being with others. I receive comfort and joy in my small circle of friends, but I also find peace in just being with myself. I have to be me without comparing myself to the rest of the world and remember that adage, quality vs quantity.

“Life is a balance between holding on and letting go.” Rumi

I remember as a kid I never wanted to go to sleep. If my parents had company, I definitely didn’t want to go to bed, I wanted to be with whoever was visiting. But on ordinary nights, I still didn’t want to go to sleep because I’d get bad dreams, or I’d be anxious about my struggles in school. If there was a test the next day, it sent me spinning with anxiety. I remember crying to my parents on those sleepless nights and I’m filled with empathy for the anxious child that I was.

 

School was terrible – I was always behind and my report cards were often filled with red ink showing my failing grades, leaving me with shame and humiliation. Family life was hard because my parents didn’t know how to handle the constant emotional chaos that would erupt between us, and my vision problems made me feel like I was “damaged goods.”  Difficultly making friends because I was so unhappy topped off the list of horrors.

 

Somehow, I got through each day — that was my job. I think back on my years and see that my way of handling life was to just push ahead, like walking through a dense forest that doesn’t have a path. I guess you can say I was in uncharted territory, but isn’t that the way for all of us? How did other people get through life? But I pushed through the sadness, the inadequate feelings, and the unsettledness that comes as a result of ignoring painful negativity.

 

Reflecting back, I’m amazed at my persistence, because in spite of the feelings that were unsuccessfully shoved down the rabbit hole, I carried on anyway.  I struggled through school, moved out of my family home at an early age, supported myself and eventually got a master’s degree in social work— all with a feeling of inadequacy and sadness. That’s quite an accomplishment! But there were times when I wondered why life was so hard. Why was I always struggling? Isn’t it easier just to be happy? But I couldn’t let go of these heavy-hearted feelings, no more than I could stop breathing. Self-hate became my companion.

 

Now I am retired, I had cancer, received chemotherapy and a stem cell transplant which two years later still knocks me out. I wake up and have energy, so I decide to go for a walk, or begin the tasks of the day, and suddenly my energy is depleted and all I can do is rest my body. When I sprawl across the sofa limp and relaxed, I don’t have the resistance I had as a child. I am not fighting sleep, nor am I trying to fight through all sorts of emotional issues in order to accomplish something. I just give in to my body, my muscles relax, and I feel glorious relief. In a few seconds, I am in a sound sleep and when I wake up, I am more alert and relaxed.

 

I learned so much about myself during cancer treatment. One thing I realized is that I spent a lifetime of resistance and not enough surrender. The resistance comes with lots of struggle with a poor self-image, but the surrender is a breath of fresh air. It is free from self judgement and criticism and is as refreshing as waking up from a nap. It’s giving into what is. I’m not fighting sleep like I did as a child. I am not fighting with anything. I am giving into the moment. As I am sprawled across my sofa with the blissful feeling of surrender, the thought occurs to me that if I can do this with my body maybe I can do it with all the negative feelings invading my heart and soul. Maybe the negativity is based on feelings and events from the past that do not exist anymore. Why did I think I wasn’t good enough anyway? Aren’t we all a work in progress? Yes, there are things I wanted to accomplish that I probably won’t get to, things I have accomplished, and other things that I will accomplish, like letting go of sad heavy-hearted feelings. How can I see myself with curiosity and love instead of shame and doubt? How can I let go of judgment?

 

By returning to my meditation practice which connects me to spirituality, I am learning that letting the self-effacing feelings melt away makes my heart feel lighter. Surrender feels like seeing with a fresh pair of eyes. There is vibrancy in just seeing things as they are without assessing whether it is good or bad. It’s like mornings before events of the day happen that tire us out. Or after a rain when everything feels fresh and new.

 

Surrender made cancer easier to bear because I got to know my new body and the persisting side effects without feeling sorry for myself. Struggles and fears still exist, but there’s also revelations that make life interesting. Without resistance and a judgmental attitude, I see my resilience and that I’m better equipped to manage whatever comes my way. I have more energy when I experience each moment without an agenda.

 

When I realize I am struggling with resistance I ask myself, what am I resisting and why? Where is this coming from? Does it have anything to do with present issues, is it old baggage from the past? I discovered that being aware of resistance and its origins, creates self-compassion and self-growth. We all deserve a reward for getting through childhood and we shouldn’t be blaming ourselves for anything, because whatever the issue we all did our best to survive and thrive and now we are able adults who can move forward — so I take a deep breath, and let life happen.

 

One of my favorite jobs was as a case manager in what was called a “halfway house” for people diagnosed with psychiatric disorders. They were discharged from hospitals but not ready to live on their own. They were a population of vulnerable sweet souls who struggled to exist, and so many of them were unable to utilize defense mechanisms. I saw them as frail, unique people who spoke honestly, simply because they did not have the ability to be deceitful. Many sensed that I liked them and in the time I worked there, some would come to me and say, “God loves you”.

 When I think about that now, I wonder if because they were honest and vulnerable people, did they have a special pathway to Spirit  and were delivering a message to me, or were they speaking from their hearts but were too confused about their own identities, or maybe they did have some defense mechanisms after all and found it easier to say God loves me instead of them loving me.

In any case I think about those lovely halfway house residents now, because I am not well and people who care about me tell me that they are saying prayers for me. I am conflicted when people tell me that. I am not a religious person. As a child my mother asked me if I would like to go to religious instruction after school. Well, I was a struggling student in public school and would never agree to more school after school so of course said, “NO”. For me, religion was a set of rules, what you can and cannot do, and of course having wonderful family dinners. As I got older, I learned more about Spirituality which is a better fit for me. I am still learning how to find my way to Spirit.

It’s also important to note that I have never liked asking anyone for anything, so it’s worrisome for me to ask God for favors even though I have been told that He and other Divine Entities are eager to help us here on earth. It makes me wonder, though, what exactly do people mean when they say they are praying for me? I have not actually asked someone to explain that. It might make them feel defensive, “Oh I’m only trying to help”. But, are they asking for God to cure me? Well, if so, isn’t that a bit presumptuous? It is like a mother saying to her child, “Here, let me do that for you” instead of teaching her child to do it themselves.  Because I’d rather do it myself, it brings up the song, “People who need people are the luckiest people in the world” Shouldn’t I be grateful for outside help, whether it’s from people or Other Sources? Am I too independent and can’t that be a bit isolating?

In truth, I do like to do things for myself and when I want help, I will ask for it. When it comes to computer skills, I know my brain has difficulty comprehending certain concepts so I will easily ask for help, or now with coronavirus, it’s not safe to leave home so will welcome assistance but when it comes to my life path, like  someone asking God to look after me, that path is mine alone to walk on. Well-intentioned people asking God to cure me is like an impatient mother telling her child, “Here let me do that for you”

But people who say, “I’ll pray for you” are beautiful well-intentioned people who want to help. It is difficult to see someone you care about suffer and it seems like a natural inclination to try to take it away however as I said in previous writings, we all learn from our difficult paths. The lessons we learn from our own suffering can bring us closer to having a relationship with God, which can be healing. As bystanders, we feel helpless and at a loss for words which is frustrating, and it is difficult to state our intention which is wanting the best for those we care about. So instead we say the next best thing.  It is like my sweet psychiatric patients saying, “God loves you” because they cannot say it themselves. I think the prayers I would like to receive is reassurance, hope, and faith that my path will be an easy one. It is like someone on the sidelines cheering me on as I am running the race.

Perhaps we can all learn how to sit with the discomfort that watching someone suffer causes, and step back from the inclination to take it away and see what else comes up. Perhaps love and compassion will flow and the connection to our loved ones will be the connection we needed. Making connections with people is something we always benefit from.  Asking, “How can I help?” will let our love and compassion shine. It makes such comments like, I will pray for you sound well-meaning but a bit controlling.

I want to end by saying that there are those who continue to believe that their prayers will be answered. It is important to say that if your prayers are not answered, it might not mean that you did not pray hard enough or the person you were praying for was not receptive enough. Perhaps it means that there is another plan in store for us and that when we pray, we are asking God to bestow upon us the lessons and events that are for our highest good. When we can exercise this kind of trust, we are surrendering our control to a higher power.

When I was a teenager growing up in New York City, my friend and I used to go to the Village and we loved browsing in such stores as Azuma, which had beautiful carved boxes from India, gorgeous Indian-print fabric that we’d find on many hippie couches and beds, and, of course, patchouli incense. There was also a store called Poster Mat, which had Peter Max and other similar posters that looked great hanging on a wall near the Indian-print fabrics.

I bought a postcard at Poster Mat that I kept with me for years. I thought it was hysterical and whenever I showed it to anyone, they would smile politely, apparently not really understanding what I found so funny about this postcard. Occasionally someone would give a genuine laugh, which confirmed my feelings about it. It was a red postcard with a cartoon drawing of a man leaning over a counter, returning a package. He is seen telling the man on the other side of the counter, “No, life isn’t what I wanted, haven’t you got anything else?”

I have to explain why I was so drawn to this card. My childhood, teen years, and early adulthood were complicated. In retrospect, I think that I was depressed, though not necessarily “clinically depressed”; I managed to get through life, but my mantra was often that I hated life. I was drawn to this card because, as a lost teen trying to “find myself,” it described a feeling that I was unable to express, and only remotely aware of. I was thrilled that someone out there understood how I felt, even if I did not. Eventually I stopped saying it because I realized it only perpetuated negativity. I was in therapy for a number of years, which helped me move forward. I went back to college for my bachelor’s degree and later for my master’s degree, married a wonderful man, was a great social worker, and established a lifestyle of contentment.

Seeking greater fulfillment in life led me to become interested in Spirituality. I find peace in meditating and understanding that our existence here on earth is only a small part of existence in a universal perspective. With that in mind, some years ago I went to a Dr. Brian Weiss Weekend at Omega Institute in Rhinebeck, New York, to learn about past life regression. It was thrilling to use hypnosis to bring us back to our past lives, see the lessons we learned from them, and if there are any traits or issues we still experience in our lives today, problematic issues to overcome. It was amazing to be able to tap into our potential in order to access these extraordinary experiences. One exercise he did was to bring us back to the existence in-between lives, just before we came into this one. This exercise was a most extraordinary one for me, as its meaning is now becoming clearer to me than ever. 

When Dr. Weiss led us back to this place before our birth, I saw myself circled by loving, supportive beings. They loved me and were telling me I had to go. I didn’t want to leave, but I knew I had to. I left reluctantly; I think on an escalator. In discussing our experiences, Dr. Weiss explained that we are spiritual beings having an earthly existence (as spiritual beings we are immortal, living several lifetimes, according to Dr. Weiss) and that there are many beings who are eager to have another experience here on earth. I raised my hand and asked him if they were so eager, and I wasn’t, why couldn’t they go instead of me. His answer was simple: “Because you had a lesson to learn.”

So that brings me here today: a 67-year-old woman learning my life lessons. I see a recurrent theme of resistance in many parts of my life. It seems that resistance and angst accompany almost everything I try to accomplish. I am always fighting through this feeling. Even when I am engaged in a project I like, such as writing or embroidery, there is an ever-so-slight quality of pulling back from doing my best. I think it takes me so long to accomplish anything simply because I have to struggle through this forest of reluctance and fear of inadequacy.

I am discovering, however, that life has a way of presenting us with lessons over and over again, giving us more opportunities to learn from, like that brilliant movie, “Groundhog Day.” I say this now because I have been diagnosed with angioimmunoblastic T-cell lymphoma, an aggressive and rare form of cancer that affects the lymph nodes. In the time it took to diagnose, it has spread to several parts of my body. I persistently went through many tests and doctors until I found answers, and started treatment right away. There was never a thought otherwise, but my postcard from Poster Mat and my experience with Dr. Weiss’s past life regression  immediately came back to me. 

Several thoughts kept racing through my mind. Life has been both difficult and rewarding throughout my years. I accomplished a lot in my life. Not all that I wanted, but do we measure whether we are ready to die by the amount of successes we have had, or do we measure our life by the quality of what we did, how we did it, and who was affected by our actions? So maybe I am finished and it’s time to end this experience in this particular life. But, then again, I haven’t even been collecting my Social Security check for very long and have yet to buy my second home. I have not yet enjoyed the full extent of retirement nor have I learned how to enjoy life without work. There are still things I want to accomplish, but there is that reluctance, resistance, and fear of inadequacy that follow me through life. When I was diagnosed with cancer, my dear friend Florence’s mantra came back to me. She said, “Everything is grist for the mill.” I understand that cancer has a lesson for me.

So, this is what I am learning. Yes, I get bogged down by a lot of uncomfortable side effects of chemotherapy and it is easy to forget about the bigger picture: that there is life ahead of me. Still, I chose treatment without a second thought, so in spite of the reluctance, I already chose to live. Now, how I live it is the question. Do I continue to live it with resistance and fear of not being good enough? Or do I look at what I am doing and how I am doing it? I am fighting cancer. My stepdaughter gave me a bracelet that says, “I am brave.” My niece gave me an air freshener that says, “I’m a warrior not a worrier.” I think they both describe who I am.

I choose life. It’s not always easy but it’s also about attitude. Cancer is making me brave because I am choosing life in spite of the fear, sadness, and loss that overcome me, not just during treatment, but in all of my life. I don’t want life to end this way, not when I’m realizing that I have always been a warrior, that I have always been brave and able to work through the many obstacles that faced me. I didn’t always overcome gracefully. In fact, I see that using that word is me giving me a grade. Did I pass or fail?  It is not useful to think in such a judgmental way. I am realizing that this self-judgmental way of looking at who I am and what I do and how I do it is exactly what is creating the reluctance, resistance, anxiety, and fear. I am also realizing that I am someone who learns from everything I do in life, which helps me become a wiser person. So, instead of making judgments that only lead to feelings of inadequacy, I’m going for compassionate self-awareness, which will take me further on this life journey. I know that there is more for me to experience. I want to look for positivity and love for a long time to come.