Mostly Healthy, Always Sick

 

 

When practicing Crow, the elbows must be carefully bent at ninety degrees to support one’s body weight. It is a tricky yoga pose. Like most other poses, it looks easier than it really is. When I squeeze my abdominal muscles and lift my feet up in the air, trusting that my balance will prevent me from crashing into the floor, I forget the platinum plate that came to replace my lower spine after my tumor was removed. Being a crow is quite different from being a cancer survivor. Falsely believing the two cannot coexist, I have been pretending to be the first while denying I was the latter. 

 

There are two ways to tell this story:

1. I have always been sick.

2. I have mostly been healthy. 

I am sorry if you find this confusing. I certainly have, and still do. It is easier to choose a box and stick with it. 

When applying to tenure-track academic positions in the United States, I was puzzled by the request to fill out a disability statement in order to comply with the 1973 Rehabilitation Act, which “prohibits employment discrimination by Federal government contractors and subcontractors.” Titled “Voluntary Self-Identification of Disability,” the standard form states that “you are considered to have a disability if you have a physical or mental impairment or medical condition that substantially limits a major life activity, or if you have a history or record of such an impairment or medical condition.” It lists eighteen conditions or illnesses considered “disabilities,” including cancer, PTSD, OCD, major depression, epilepsy, and many more. Below this shopping list are three boxes, of which an applicant is asked to only choose one: “Yes, I have a disability (or previously had a disability).” “No, I do not have a disability.” “I do not wish to answer.”   

The first time I encountered this form, my heart skipped a beat. Yes, I had cancer. Yes, I have a cardiovascular disease and a pacemaker. Yes, I struggled with depression, although I doubt it was “major” (there are two types of academics: those who experience depression, and those who lie about it). And yet, to declare myself “disabled” seems somewhat misleading. I am, after all, a thirty-seven-year-old able-bodied woman who practices yoga regularly and loves to walk, swim, and bike. Still, in the confession booth that is the “Voluntary Self-Identification of Disability,” I wasn’t sure what the correct answer was. And so I checked “I do not wish to answer” and clicked “send.”

 

I do, however, wish to answer. I wish to answer a question that no one ever asks, especially since I left Israel and moved to the United States a decade ago. 

Can one be healthy and sick at the same time? 

 

For years, I sprinkled my story like breadcrumbs. 

I still grapple with the idea that illness is an ongoing part of my existence, a shadow that will never go away. I used to think that if I could only keep gazing forward, I would simply forget this shadow exists. 

 

That my body is particularly vulnerable has always been a fact of life. I was born in the fall of 1983 with two supposedly unrelated congenital impairments: a ventricular septal defect (VSD)—that is, a hole in the wall separating the two lower chambers of the heart—and a facial paralysis. I spent my first year in and out of the hospital, and had an open-heart surgery shortly before I turned two. 

I grew up in Sde Boker, a kibbutz in the Negev desert of southern Israel, best known as the retirement home of Israel’s first prime minister, David Ben-Gurion. It was a close-knit community of several hundred people, many of whom, like my father, worked in the area or taught at Ben Gurion University. Despite my VSD and facial paralysis, my early childhood was blissful. A fearless tomboy, I kept myself busy by chasing dogs, climbing trees, and fighting with my older brother Uri. My relationship with my body was uncomplicated: I told it what to do, and it followed suit. Jump from the tallest tree in the yard, I would order, and my undersized legs would quickly find a small branch they could use as a makeshift ladder. The open-heart surgery had left a huge scar in my chest, yet the possibility of injury never crossed my mind. I pushed my body as far as it could go, and then pushed it further. 

I also benefited from the kind of screen-free childhood that Silicon Valley parents are now desperately trying to recreate for their children. We didn’t have a television set, and the closest cinema was many miles away, so my encounters with popular representations of bodies, and especially the female body, were few and far between. I knew that something was wrong with my face, as kids would call me names or try to mimic my half-smile, but it didn’t affect my high self-esteem.

My mother, who always wanted a daughter and ended up having me at thirty-six, bought me the most beautiful dresses and tiny blouses, which, breaking her heart time and time again, I stubbornly refused to wear. My five-year-old self insisted on wearing my older brother’s torn and oversized T-shirts and pants. Worse still, when I found a T-shirt I loved I refused to change it, let alone put it in the laundry, until it became unbearably smelly or my mom would take it off my back as I was kicking and screaming, whichever came first. I used to think that my deep hatred of dresses and leggings had something to do with my jealousy of Uri and other boys who ran around the kibbutz half-naked. But now I suspect that it had less to do with gender dysphoria and more to do with my desire to be as mobile as possible. Dresses limited my range of movement. I was smart enough to know that if I jumped into a sandbox and tore a new, pastel skirt, my mom would notice it immediately. There was another reason to avoid dresses at all cost: if I hung upside down from a tree branch or felt like doing a headstand, the boys would see my panties. And so I wore a grey, boy’s shirt and shorts until we moved to Jerusalem shortly before I turned six.

       

While the kindergarten children in Sde Boker had sometimes teased me for my “weird-looking face,” it was nothing compared to the cruelty of the children at my new school. They would mock my facial paralysis, my minor speech impediment, and my inability to fully shut my eyes. I sought out the solace and empathy of adults during lunch breaks and quickly became a teacher’s pet. In Sde Boker, my hair was always cut short, but after we moved to the city, I started growing it long, hoping the dark, thick curls would hide my paralysis or, at the very least, draw attention away from my mouth. It didn’t stop the bullying and name calling. 

My obsession with athletics saved me. From age seven to seventeen, I tried every after-school activity my parents could find: first karate, then basketball, and—after I got tired of contact sports—swimming, running, and tennis. I created a binary in which my body was beautiful, skinny, flexible; my face was ugly, disfigured, unlikeable. This led to disastrous results, the worst of which was my decision to follow my parents’ advice and pursue a complicated surgery to fix my paralysis. Performed in Pittsburgh when I was fourteen years old, it entailed removing a muscle from my thigh and implanting it in my right cheek. The hope was that the implant would eventually connect to the healthy muscles in my left cheek, creating the appearance of a “normal,” symmetrical smile. Both the doctors and my parents downplayed the risks and overstated the possible benefits. The surgery was presented as a serious, yet safe, intervention that I would fully recover from during summer break. I remember the days before our trip to the United States, when I pictured returning to school with new clothes, The Simpsons backpack—and a million-dollar smile. The fact that the surgery was preceded by a family trip to Disney World in Orlando made the package even more tempting. Universal Studios and a new face, I thought, could I be luckier? 

 

As is often the case with plastic surgeries, my operation failed. The muscle removed from the inner thigh left a long scar that kept me from wearing a bathing suit for several years. This unfortunate muscle, like so many of my bodily organs, turned out to be unruly. Despite my surgeon’s best efforts, it did not play the part. Instead, it got stuck in my right cheek, creating a stiffness that, over two decades later, still makes my facial paralysis more pronounced than it was in my childhood or early teens. 

“We could try again,” my parents said, never uttering words such as “failure” or “disappointment.” A second trip to Pittsburgh followed, sans Disney World.     

The surgery failed. Again.  

 

My face was not the only body part that proved defiant. At sixteen, I had yet to go through puberty. I forced my mom to buy me a bra, more an aspiration than a necessity. The old lady in the small local shopping center asked if I would like to try some sports bras, as my chest was so flat it could not have filled any other bra without the generous help of socks or tissue paper. I refused. I wanted a sexy bra with thick straps that the boys could try to snap. I have an endless supply of tissue paper, I thought. Let’s have some fun. 

That same year, I went to a slumber party and realized I was the only girl in class who had yet to get her period. My girlfriends exchanged tips about tampons, pads, and PMS medications. “My bleeding is not too heavy,” I said offhandedly, growing a habit of lying about my body. “Man, you’re so lucky,” said a girl who had been wearing bras since her bat mitzvah, “I can barely get out of bed. It’s a killer.” What a weird feeling—to be jealous of someone else’s pain. 

I, too, wanted my body to bleed and cramp. I wanted it so badly I made an appointment with a gynecologist without telling my mom. The doctor, a middle-aged woman with huge gold earrings, asked me if I was “engaging in any sexual activity.” “Yes, I have a boyfriend,” I said. Perhaps I even gave him a name or said we’d been together for a year or so. Lies are hard to keep track of. She asked a few more questions and prescribed a pill. “I’m giving you hormones to protect you from unwanted pregnancy,” she explained without looking away from her computer screen. “Make sure you take the pill every night around the same time. Don’t skip a pill. Come see me in a year.” I already had three major surgeries, yet I was too young to ask her about side effects or risks. 

The hormones changed my body radically and rapidly. I gained weight, became accustomed to my pill-induced period, and was incredibly moody. Several months after I started taking the pill, I became depressed and, for the first time in my life, had suicidal thoughts. I attributed my distress to a boy who broke my heart and to the two failed plastic surgeries that left my face in a worse condition than before. But after spending many years reading about hormones and depression, I now know that the two are closely linked. 

 

One morning when I was nineteen, less than two years after I started taking the pill, I woke with a crippling pain in my right leg and lower back, barely able to drag myself from my bed to the bathtub. An orthopedic doctor told my mother I had a herniated disc. That made perfect sense, as I had been volunteering as a paramedic with an ambulance crew in Tel Aviv and was carrying patients and heavy stretchers eight hours a day. What followed were months of physical therapy. I could barely step on my foot. I left my tiny flat-share in Tel Aviv and moved back in with my parents in Jerusalem. For a few months, life became a waiting room. I watched television, read books, saw friends, tried not to get too bored or anxious. My boyfriend at the time was a paramedic himself and would come to see me on weekends. We would have awkward sex on my childhood bed while he tried not to put too much weight on my lower back. 

After several months of self-induced confinement, I finally fainted, which saved my life. My parents took me to the emergency room, where the doctors performed a CT scan and then a surgery to remove a fourteen-centimeter tumor from my lower spine. When I woke up, I was surrounded by many friends, including several I hadn’t seen in years. The tumor damaged my nerves, and I lost sensation in my entire right leg, leaving me wondering if my toes were still there. 

I was diagnosed with Ewing’s sarcoma, a pediatric cancer that rarely occurs in patients older than sixteen. I was nineteen, and, as ever, it seemed my body had no respect for medical statistics. For many years, as I was struggling to console myself by searching for the root cause, I blamed my cancer on my birth-control pill and, indirectly—on myself. I felt guilty for lying to the gynecologist and for trying to trick my body into submission. It took me over a decade to realize that my desperate need for a clear-cut causality prevented—rather than assisted—my healing.   

While the muscle transplanted to my face proved to be stiff and immobile, my cancer was quick and spirited. By the time my spinal tumor was removed, I had metastases in my abdomen and chest.  

The doctors weren’t sure whether I would ever walk again. I was bedridden for several weeks, until a blood clot that reached my lung almost killed me.

After recovering from the pulmonary embolism caused by the blood clot, I had an additional surgery to remove one ovary and implant a port-a-cath, a small medical device used to give intravenous fluids, blood transfusions, chemotherapy, and other drugs. 

I then had seven rounds of chemotherapy, during which my mother slept next to me on Hadassah Hospital’s uncomfortable sofa bed. One night, as I was recovering from the final round of chemo after yet another stomach infection (caused by antibiotics, not by the cancer), my parents had to go to a wedding, and for a few hours I was left by myself in my hospital room. Shortly after they left, a tall, curly-haired doctor I had never met entered my room and asked for my name. I told him, and he said he needed to draw blood.  “We have to run some tests before your bone marrow transplant.” 

That was the first time I’d heard those words. I told him it must be a mistake. My oncologist had informed me that the Ewing’s sarcoma protocol consists of chemotherapy and radiation, nothing else. He looked at his paperwork, which he was carrying in a blue Hadassah binder, and said, “Are you Neta Alexander? You’re scheduled for a transplant once you’re done with radiation treatment.” 

I started crying. He didn’t like that. He said, “Look, I’m going to leave the paperwork here, and you can sign it tomorrow,” and left the room. 

When my parents got back that night, I told them what happened, and they both reassured me it was a misunderstanding or some kind of mistake. It wasn’t. 

 

A bone marrow transplant is a treatment carefully designed to kill you while keeping you alive. It is a “non-selective” treatment, by which I mean that it destroys both vital and non-vital bodily functions. It eliminates blood-forming stem cells before replacing them with new, healthy ones.  

I had the transplant shortly after my twentieth birthday, and ended up spending ten days in an isolation room, where there were no visits except from specialized nurses, and a few more weeks in recovery. Two months later, I started my B.A. at the Hebrew University, despite the fact I couldn’t attend most classes as my immune system was in constant collapse.

Years later I learned that the transplant was preventive rather than essential. By the time my oncologist recommended it to my parents, I had no sign of cancer in my body. It was designed to lower the chances of recurrence by giving one, final blow. While “successful” in medical terms, it destroyed whatever was left of my remaining ovary and made me immunocompromised for over a decade.

 

You are more than the sum of all your traumas.

 

My body speaks, and its language is heat. During my cancer treatments, either a nurse or my mother would check my temperature every few hours. If I had a fever when I was home, recovering from the last round of chemotherapy, I was forced to go to the ER. Sleeping in my childhood bed was a refuge from the long weeks in the hospital, where nurses would wake me up several times a night. Returning to the hospital spelled antibiotics, heartbreak, despair. I often said I was feeling fine, hoping to avoid another trip to the ER. But my body is a narc, and the thermometer a lie detector. 

The more medical professionals monitored its function, the more alienated I grew from my body. It belonged to them and not to me. My body speaks in tongues, through heat and pulse, sweat and excrement. Before I taught myself to listen to it more carefully, I was always afraid of getting caught in a lie.

 

During my roaring twenties, I worked hard to create and sustain the kind of happy-go-lucky persona that social media made ubiquitous, if not compulsory. I posted photos from Primavera and Coachella, from a summer trip to a Mexican fishing village and from red carpets at the Tribeca and Toronto film festivals. I shared my journalistic and academic work, as well as carefully curated links to works of others I admire. I perfected the art of hiding my facial paralysis from selfies and public photos. When shot in profile and at a certain angle, my face passes as normal, even cute (ask those miserable souls who swiped right on me on dating apps—only to ghost me after we met in person). Not everything was a lie. I had a wonderful time working as a journalist, moving to New York City, going to grad school. I felt incredibly lucky to be surrounded by friends with whom I traveled the world and went to the movies. I had partners who supported me and taught me how to trust my body once again. Even without a functioning immune system, life was good. 

Shortly before I was diagnosed with cancer, I had been scheduled to fly back to Pittsburgh for a third facial surgery in one last attempt to correct the damage done by the previous two. But while I was sick, I decided I would never subject my body to any kind of unnecessary surgical procedure ever again. I had bigger fish to fry. 

During this time, I started to think about my facial paralysis as a blessing in disguise. Paradoxically, the only impairment that had no medical ramifications whatsoever was the one that signaled out to others that something was wrong with my body. I was “passing” as someone who never had cancer, but I couldn’t pass for someone with a perfect smile. The more I read queer, crip, and disabled writers, from Alison Kafer and Sunaura Taylor to Carolyn Lazard and Ellen Samuels, the more I was able to make peace with my face. Still, my social media posts depicted a healthy young professional. Nothing to see here, gentlemen, just an overly-ambitious cinephile with a penchant for partying.

And so “passing” as an able-bodied woman became a way of life.  

 

I have been listening to a podcast called “Ten Things that Scare Me.” The episodes are short, between three to ten minutes each. The idea is brilliantly simple: in each episode, someone reads aloud a list of ten things that scare them. Twenty episodes in, I started to realize that humans are scared of three things: death, dependency (by way of losing their mobility, memory, cognitive functions, money, etc.), and traumatic things they already experienced. The latter category fascinates me the most. A mother who was sexually assaulted as a teenager is scared that her teenage daughter will be raped. An ex-convict is scared of being sent back to prison. A woman whose first husband died in a car crash is scared of dying in a car crash. Yet, these people are not scared of the many things that I find horrifying: surviving a stroke, having a heart attack, dying before I’m able to find a way to translate my own experience into something that might be meaningful for myself and others. And, worse still, speaking Hebrew with an American accent. 

We are terrified of that which has already happened. When something entirely different takes place—something like a global pandemic with no known cure—we are left, once again, anxious and frustrated. It is a game we keep losing, yet we never stop playing. 

I spent the better part of a decade obsessing over the idea that my cancer would return with a vengeance, looking for suspicious cysts on a daily basis. And then I ended up lying in the ICU of NYU Langone Health hospital in Manhattan on a hot summer day, waiting for a pacemaker transplant after my pulse fell under 20 BPM. So it won’t be the cancer, I thought. I wasted so much time preparing for a battle I had already won.

 

Like the open-heart surgery I had as an infant, the pacemaker saved my life at the age of thirty-three. It made me a reluctant cyborg, forever monitored from afar by a cutting-edge piece of technology. It also added a fresh new scar, replacing the almost invisible scar left by my port-a-cath. “You should save yourself some time and just sew a zipper on my chest,” I told my surgeon. “This could be a start-up,” he smilingly replied.

My battery will die in three to five years. Another surgery awaits.  

 

Things I wish doctors would have told me: 

– This medication has terrible side effects, and that sucks. I wish we could give you something less aggressive, but we need to make sure you’re not in danger, and right now this medication is our best shot. 

– Your body is not about to collapse and die at any given moment. In fact, it is incredibly strong. It survived an open-heart surgery, cancer, a bone marrow transplant, and a complete heart block. Its self-healing powers are unimaginable. And all it’s asking you to do is to be patient, give it time, and trust that it will not hurt forever. It is not a ticking bomb. It is a beautiful, evolving body-mind. 

– We can help you learn how to walk the tightrope between anxiety and responsibility. Instead of pretending we have all the answers, we will give you the skillset to differentiate when you need to take action and when you need to recognize “symptoms” as distant echoes of your past. Not every subdermal cyst is a cancerous tumor, not every cough is Covid-19. 

– Your emotional well-being, and especially your stress levels, are more crucial to your health than you might imagine. Stressing out about imaginary what-if scenarios can become a self-fulfilling prophecy.    

– There are endless ways to heal, and we are only trained in a few. Your injuries are not your fault; they may have been exacerbated by environmental, social, and political factors. They may have been ignored or misdiagnosed because of the inability to see you as a whole, complicated person. We don’t have all the answers. No one does. Still, those with similar experiences might help you more than the doctors who treat them.       

 

Under Covid-19, playing hide-and-seek with my pre-existing conditions became an entirely different game. When the pandemic started spreading in New York State, I obsessively read the news, trying to decipher the potential effect of triage—the medical term for “the assignment of degrees of urgency to illnesses to decide the order of treatment of a large number of patients or casualties.” If I need a ventilator, I wondered, will my pacemaker and cancer be seen as liabilities? Will I be denied treatment so that the doctors could save those whose medical histories are less complicated? 

Anxious and stressed, I resorted to what Americans like to call “self-care.” Performing my civic duty, I subscribed to Zoom yoga classes. I turned my living-room into a makeshift gym, I made a contract with myself: If I exercise regularly, consume organic produce, avoid sugar, eggs, meat, and processed food, maintain an eight-hour sleep schedule, meditate ten minutes per day, take multi-vitamins and herbal supplements, shelter in place, not see any friends, and disinfect every item my partner and I buy at the local supermarket—I will not fall ill.  

This was not the first contract I made with myself, and it was as flawed as the rest of them. If I get sick, I only have myself to blame (for not being vigilant and careful enough); if I remain healthy, I have to maintain a strict, costly routine that leaves very little room for grief, rage, or blissful laziness. 

Relapsing into old patterns, I became over-productive while lecturing others about the need to slow down. I replaced a final exam for my Introduction to Film and Media class with a digital detox assignment that required my students to read Jenny Odell’s How to Do Nothing and spend at least ten hours away from their screens. Soon after, I graded forty digital detox papers and fell asleep caressing my laptop. 

The next morning, I practiced Iyengar yoga via Zoom, recasting books and chairs as props. Instead of focusing on my breath or alignment, I found myself studying the living rooms of dozens of other yogis. They were performing for an unseen audience, stretching and sweating while using Jill Lepore’s These Truths or Alain De Botton’s Status Anxiety as blocks. Their pets and kids would occasionally Zoombomb the session. A forty-something white man forgot to mute himself, flashing on my screen whenever he exhaled. “I can hear your fear,” I whispered, using a wall to support my squat.              

 

In the past few years I learned to inhabit my body like an old, beloved house. You know the two top electrical sockets in the living room don’t work, so you use the third. You train yourself to ignore the mold in the bathroom. You order an overpriced Japanese wallpaper online but never find the time to replace the stained one in the kitchen. Such are the ways of inhabiting one’s tender body. Every day brings with it a chance to accept, or grow indifferent to, those things that once kept you awake all night. For me, growing older is growing forgetful, in the best possible way.

 

In yoga, Eagle is a pose that invites us to transform the body into a self-contained cocoon by wrapping one arm beneath the other and subsequently wrapping one leg around another. The result looks less like the majestic bird and more like a six-year-old trying to stop a tantrum by turning into a pretzel-shaped demon. Many yoga poses call for taking up as much space as possible by stretching one’s limbs. Eagle is one of my favorite poses since it forces me to bring my entire body together, as if holding it tight enough will protect it from breaking apart. When I’m able to balance on my left or right foot while squeezing my shoulder blades together, I feel invincible. In love with my limbs, I disentangle myself and stretch them out as far as I can, taking up more and more space in tiny, invisible increments.

 

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Neta Alexander wearing a blue blazer ad white top

Neta Alexander is an Assistant Professor of Film and Media at Colgate University, New York. Her public scholarship, encompassing topics such as the Internet of Medical Things, predictive personalization, and the limitations of technology, has been published in The AtlanticPublic BooksReal Life MagazineThe Brooklyn Rail, and Haaretz. Her recent book, Failure, co-written with Arjun Appadurai, was published by Polity. (PHOTO CREDIT: NATAN DVIR)