Anaphylaxis of the Mind

Alyson Pomerantz reframes her understanding of illness when an allergic reaction turns out to be something else.

Alyson Pomerantz | Longreads | September 2019 | 21 minutes (5,316 words)

About 12 years ago, at my law firm’s holiday lunch, something strange happened when I took a bite of the crab appetizer. There was a tickling sensation in my throat. I say tickle, which makes it sound playful, but it was uncomfortable. I tried to clear it with a sip of wine, but the tickle stayed put. I went to the bathroom because the privacy of a small toilet seemed a better place for me to investigate what was wrong, despite the fact that it was poorly lit and I couldn’t open the door without it hitting the sink.

Of course, I could divine nothing in the tiny bathroom about what was causing the tickle deep in my throat. I sat on the toilet and tried to breathe, but my breathing only grew more labored.

I decided to call my doctor, who also happens to be my father. Though he worries about his children, he has that doctor way of being calm and cool in an emergency. Reciting some figures about anaphylaxis, he told me I should get to a hospital right away.

One of my co-workers helped me find a cab. The driver reminded me that he was not an ambulance, but I didn’t have a lot of experience with emergencies, and so I pleaded with him to take me to the hospital. At New York Presbyterian I stumbled toward the front desk, gesturing at my throat. I could barely whisper my name when the attendant asked.

They ushered me to a curtained-off space where I was given a huge dose of Benadryl. I was examined, but the doctor saw and felt nothing, which she said didn’t necessarily mean anything one way or the other. She implored me to breathe and told me she would be back to check on me. This was in 2007, before smartphones could entertain us, and so I eavesdropped. The curtains were thin, and apparently everyone else there knew enough not to come to the emergency room by themselves. A woman on the other side of the curtain pleaded with the person she was with to stop touching “it.”

Eventually the doctor told me I was stable and could leave. My orders were to get an allergy test as soon as possible to sort out what had happened. I didn’t yet know that the allergy test was going to raise more questions than it would answer.

After the doctor left, I weighed whether I should splurge on another cab. The thought of riding the subway seemed daunting after what I had just been through, but I was fine, wasn’t I? The woman next to me urge her loved one to stop doing whatever he was doing again. The attentive badgering made me suddenly desperate for my own mother, who had been gone six years at that point. My mother was the one who always told my sister and me to treat ourselves after we’d been through something hard, but my father’s voice, the practical one, also loomed large in my head. I was 30 years old, wishing my mother were alive to give me permission to take a cab.

At that moment, nothing seemed sadder to me than sitting in that hospital, alone, convinced that but for a dose of Benadryl, I would be dead.

***

I come from a medical family. My father is a urologist and my mother was a social worker and hospital administrator. My parents actually met at the hospital in the 1970s — Morrisania, in the Bronx, where my father was a surgery resident and my mother worked in medical billing. They were friends at first, though my father jokes that my mother mostly just used him for the discount that doctors got at the cafeteria.

There was a tickling sensation in my throat. I say tickle, which makes it sound playful, but it was uncomfortable.

My father split his residency between Morrisania and Montefiore Hospital, also in the Bronx. He happened to be the resident on call the day when my mother came to Montefiore to have an enlarged lymph node under her arm looked at. The Chief of Surgery suspected Hodgkin’s Disease and admitted her, while my father took her history and conducted a physical before she was biopsied. My father remembers that even when he examined her, he knew something was wrong. It turned out my mother did have Hodgkin’s, though it was “only” Stage 1a or 2a, because the cancer was above the diaphragm and limited to one or two lymph nodes.

If my mother had been diagnosed with Hodgkin’s 15 years earlier, she would have had a 30% chance of survival. But in the 1960s they had introduced a new treatment called mantle field radiation, and there had been improvements in chemotherapy, both of which dramatically improved survival rates. A large part of the upper half of the body would be radiated, often extending beyond the lymph nodes or organs where the actual tumor was identified. Supposedly it was called “mantle” because the scope was broad; its contours could reach as far as the entire area of the cloak, or mantle, that patients wore when receiving treatment. In my mother’s case, she received treatment only above the diaphragm. This is why I am here today: because my mother received mantle radiation, which kept her uterus and ovaries from being irradiated as well.

The radiation worked for my mother. When she got better, she started advanced coursework in social work at NYU, where she ended up in class with one of my father’s closest childhood friends. She and my father reconnected through this friend, and they started dating not long after.

My father did have some misgivings as they became serious. While my mother was doing well, my father knew enough about her cancer and treatment to know that the downstream effects — what might happen eight or nine years after treatment — were unclear. She could relapse, or possibly suffer from some other side-effect of the radiation. When he confided his fears to his friend Bruce, who was also a doctor, Bruce stated the obvious: “Nobody lives forever.” So when my mother — never afraid to take charge of a situation — proposed that they turn their first planned vacation to Club Med into a honeymoon, my father agreed. They were married at the Harrison Jewish Center in Westchester in November of 1975, and I was born less than a year later.

While children of theatrical families grow up quoting Shakespeare, I learned how to speak about bodily functions as if I were Doogie Howser. We voided our bladders. Rashes were dermatitis and bruises were contusions. If we had the stomach flu, it might be “a little gastroenteritis.” Having mood swings was “being labile” and not being able to move past something was “perseverating.” There is a video of me reciting a poem on Fathers’ Day when I was 10. One verse went: Fathers climb trees, fathers climb ladders / My father operates on kidneys and bladders.

There were kids I knew who were allowed to stay home with their own decidedly non-medical diagnoses of “feeling under the weather.” If we complained of not feeling well, my mother would send us to our father. Though he is a specialist, he prides himself on his general examination skills. He would get out his otoscope if we complained of earaches, palpate any body part where we complained of pain. For sore throats we gargled with salt water, for fevers we took Tylenol, and for bodily aches we were to take warm soaks in Aveeno baths. Rarely did we ever stay home from school.

I know for many the language of medicine can be impersonal or alienating, but hearing my father discuss my symptoms in clinical terms reassured me. Whether speaking about my “slightly elevated” temperature or a “mild erythema” on my skin, my father sounded confident, capable, certain. After these conversations there was always a plan in place for my recovery. Even if that meant I had to go to school.

***

I went for my allergy panel with this same optimism. A medical opinion would be rendered and I would be not be unprepared the next time I saw crab on the menu. Though I was there for the crab, they tested me for everything, from hay fever to Penicillin to pet dander. The visible remains of these tests were a series of marks up both arms, made by a nurse who carefully documented what allergen went where. Allergies are serious things, obviously, and so they had to be sure.

After the tests concluded, the allergist told me in no uncertain terms that not only was I not allergic to crab, I was allergic to nothing. Not even pollen. Or dust mites. Or pet dander.

I come from a medical family. My father is a urologist and my mother was a social worker and hospital administrator.

To most, this would be welcome news. Allergies can be deadly. Plus, crab is arguably the most delicious of shellfish, more flavorful than lobster, more meaty than crawfish, more tender than shrimp. My wife is from Baltimore and she is obsessed with crab, having grown up in a culture where sitting around with your family and picking crabs involved as much ritual as church.

But I was not relieved. Where was my diagnosis that would help me understand what had happened to me that night?

At the time I lived with my sister, who had followed in my father’s footsteps and was in medical school, even studying at the same school my father had attended in Brooklyn. I couldn’t wait to tell her what had happened. Perhaps she would tell me that allergy tests were notoriously unreliable, or offer another physical diagnosis.

Instead, she shrugged.

“What could it be then?” I asked, amazed by her nonchalance over my near-death encounter.

“Maybe reflux?” She paused. “Or maybe it’s more a mind-body thing?” I looked at her, not sure what she was getting at.

“You know, it’s incredibly complicated. Was anything going on that day for you? Were you more stressed than normal?”

With these questions, I felt like that unsuspecting young woman in the horror movie who learns from the telephone operator that the call is coming from inside the house. Was this really all in my head?

***

Some families might demonize liars, or tattletales, or people who fall down on some other moral imperative. In my family, there was no greater disdain than for people who manufactured or overstated physical ailments. We would call them hypochondriacs with as much disgust as we could stuff into a five-syllable word. My mother might have said (behind their backs), “I wish they would just get over it.”


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This might sound uncaring, or even a bit cruel, but we were not trying to be the medical police, calling out imposters as part of some academic exercise. It was emotional for us. It was personal. This is because during the 1980s my family was inundated by one very serious medical trauma after the next.

After I was born, my father and mother moved upstate and my dad took a job at a small urology practice in the Hudson Valley. My brother Adam was born in 1979 with Down Syndrome. Unlike today, where parents generally learn that their child has Down Syndrome before birth, my parents did not learn that Adam had Down Syndrome until after he was born.

Unsurprisingly, this was a difficult time for my parents. There were so many unknowns. They worried together about Adam’s future. At the time of Adam’s birth, the average lifespan of a person with Down Syndrome was 25 years. In addition to developmental delays, people with Down Syndrome also had increased risks for many other health problems, such as heart defects, leukemia, diabetes, vision impairment or hearing loss. Would any of this befall Adam? What supports would Adam need on a daily basis? Would my parents be able to provide them?

Like most of life’s unknowns, these questions were only answered over time. In that time, our family adjusted to life with Adam, much like any family does with a new member. Two years later, my mother had my sister, and we re-calibrated once again, this time as a family of five.

My childhood was normal and stable in many ways. I went to public school during the week, Hebrew school on the weekends, and camp in the summer. We did many special things together as a family. My father taught my sister and me how to ski and even found a dedicated instructor to teach Adam. We took vacations to the Jersey Shore and Washington, D.C. and to visit my grandparents in Florida.

But, in 1983, my mother relapsed. It had been eight or nine years after her initial diagnosis of Hodgkin’s. This time, the cancer was under her diaphragm, in an area where she had not received radiation the first time around. My mother was treated with radiation, again, and she started to improve.

In a plot twist that borders on pulpy, soon after my mother recovered, my brother was diagnosed with leukemia. He, too, recovered, only to relapse again five years later. That second time, he suffered an infection during chemotherapy so pernicious that he almost died.

My father describes these years — the 1980s — as the decade without music. I can remember “Thriller” fever at elementary school when Michael Jackson’s video debuted on MTV. Someone who had an older sister clued me into Madonna. I was fond of wearing a white sweatshirt with two big rhinestone hearts on it. This sweatshirt, and my enthusiasm for acting, landed me Cyndi Lauper’s solo in “We are the World,” which I lip-synched along with other kids from various grades in our school talent show. Music was everywhere for me in the ’80s, yet, to this day, my father cannot recall a single song from that decade. It’s easy to see why: Every day during the decade without music, my father believed there was a pretty good chance that someone in our family might not make it.

After the tests concluded, the allergist told me in no uncertain terms that not only was I not allergic to crab, I was allergic to nothing. Not even pollen. Or dust mites. Or pet dander.

The lesson I took from my childhood was that very bad things could happen to our bodies at any time. I was a sensitive child, and my worry came out in myriad ways. I would become upset easily when I didn’t perform as well in school as I would have liked, or if I was teased by classmates. People called me a crybaby. I developed night terrors.

I also took away the idea that you were either really sick — like, going to die — or you needed to brush yourself off and get back to the task of living. I carried this black-and-white thinking into adulthood. During law school, I had a series of throat infections that culminated in an especially painful sore throat. I was loathe to come home to have it looked at because I was supposed to deliver an oral argument for my legal writing class, a milestone in the first year of law school. But I could barely speak, and so I dragged myself on Metro North back to my parents’ house. I only learned of the severity of my condition when the doctor who examined me told me I had to go into surgery immediately to drain my tonsil. “A tonsular abscess is what killed George Washington,” my father told me, after the fact. He almost sounded proud.

While my family muddled through these traumas, friends and family would obsess over their own health problems. But there was always this understanding that these problems were trivial in comparison to what we were dealing with. My mother was a social worker and generally had a great deal of empathy for others, but with each illness our family weathered she grew less able to fully be there for others. Other people clearly couldn’t see how good they had it. In her mind, they had fear, played upon by a combination of some narcissism and an overactive imagination. But in reality they had little to really worry about, so why were they so worked up?

As an adult, confronted with the clean bill of health from my allergist, I struggled with how to process that information. There was still the memory of my own experience, which was very terrifying and very real. Yet there was no evidence that anything had actually happened, nothing to substantiate what I had felt.

Ten-year old Alyson would have channeled her mother and told 30-year old Alyson to get over it.

***

For weeks I did what lots of people would do: I ignored this new information from the allergist and my sister. The truth is I didn’t want to think about my mind/body connection. My noisy brain had already cost me lots in therapy; I had been on the couch and my own mind long enough to know I was an anxious person who sometimes tended toward depression.

But my throat was undeterred by my attempts to ignore it. I continued to have the throat-closing-up feeling over drinks with friends, at lunches with co-workers, during a writing workshop. Having been through it before, I didn’t haul myself off to the ER each time. Instead, I would find a new tiny bathroom and breathe on my own, sometimes taking Benadryl, telling myself I was fine and not about to die. I started to avoid what I thought might be triggers — red wine, soups with cream, crab, obviously.

My father likes to say that I come by my anxiety honestly, as if being honest in this instance should make me feel better. My father and my mother, and his mother, and my mother’s mother and father, and various aunts and uncles and cousins have struggled with anxiety, too. Anxiety was an old friend, ever-present in my childhood, the sidekick to all of the physical trauma in my house. If we weren’t in the middle of a crisis, then we were likely worrying about when the other shoe might drop.

It could also be that my anxiety is genetic — there is a variation of the gene that helps regulate serotonin which has been linked to increased depression and anxiety. Simply having the gene doesn’t necessarily dictate whether you will be a depressed or anxious adult. If the environment you grow up in is safe and stable, then stress later in life might not affect you much as an adult, whereas those who have had stressful childhoods may be more prone to depression or anxiety. I don’t know if I have this genetic marker, though it wouldn’t surprise me.

My mother coped with her anxiety by trying to control the things she could. She liked order and schedules. She packed our lunches and helped us pick out our clothes for school the night before. She instilled in us a slavish adherence to being on time. In college, when most of my peers hung out after class or napped, I went back to my dorm and did my homework just after “school,” as I had always done growing up.

She was also methodical about gathering information that would help her live better. She favored Oprah book pics, ranging from traditional self-help, like Tuesdays with Morrie andThe Four Agreements, to more practical books, like one I still have on my shelf about how to clean everything and anything in your house. I have inherited this overwhelming need to know more.

At some point, I decided that with respect to my throat I could use more information. My sister and my father had suggested it could be reflux, in which case certain foods or drinks may have been irritating my esophagus. To find out for sure whether this was the case I went to a specialist, making multiple appointments at the Ear Nose and Throat Clinic on East 13th Street. Service there is worse than the DMV. You take a number and wait — one, two, three hours. But I returned each time dutifully, after they gave me a new diet to follow or different pills to take. At the final appointment, after nothing improved, they scoped me. A camera was inserted through my mouth, down the back of my throat, and into my esophagus.

The doctor was pretty kind when he told me that everything looked fine. Then he repeated back a version of what my sister had said months before. He explained that the connection between anxiety and throat issues is quite common. This is because there are muscles in your throat that help you swallow, and when your body’s fight or flight response kicks in to real or perceived danger, these muscles can tighten. It gets even worse when you are stressed on an ongoing basis. I thanked him for his time.

Then I started carrying around an epi-pen. Just in case.

***

My mother’s third diagnosis came just after I finished law school. She was 52, and had been having some pain in her abdomen.

The doctors told my mother she had cancer again, but a different kind. Downstream effects. This time, the tumor was in her vagina so she had a hysterectomy. It appeared to have been caused by the radiation she received in her 30s.

The lesson I took from my childhood was that very bad things could happen to our bodies at any time. I also took away the idea that you were either really sick — like, going to die — or you needed to brush yourself off and get back to the task of living.

There has probably never been a diagnosis of cancer in the history of cancer that has been well timed, but this diagnosis came at a particularly bad time in my mother’s life because so many things had come together for her just at that moment. She had been promoted at her job and was now the director of a psychiatric inpatient unit. Adam was on the cusp of finally moving out of my parents’ house, into a home with five other adults with Down Syndrome. My mother had been working on these plans for years. My sister was in her junior year of college, almost out on her own. My parents themselves had reached a new phase of their marriage. You hear stories of couples growing in different directions as they grow older, but my parents changed in ways that brought them closer together.

This time, my mother did not live.

The loss was incredibly difficult for me. I was very close to my mother and relied on her for emotional support in just about every area of my life. I was just starting my career as a lawyer and dealing with the demands of a high-pressure job. My friends were doing the same, but also moving into adulthood in other ways. Many had started to settle into relationships that would be “the one.” But I could not get close to anyone; I spent the latter half of my 20s trying to process this ultimate loss. How could I adjust to a world without my mother?

My mother kept a diary when she was getting treatment for her third bout of cancer. She wrote about all of us in the family. Of me, she wrote: “When Alyson was a little girl she would become frightened at the thought of losing her mommy or daddy… Even as a little girl she would try to rehearse and plan for the worst case scenario of her greatest fears.” If my childhood was governed by fear of loss, my 20s were governed by actual loss.

What I learned was that there was no way to rehearse or plan for loss. All of my mother’s rules be damned; I was unprotected.

***

The Hindu tradition teaches that chakras are energy centers in our body that correspond with various nerve centers. The fifth chakra is the throat chakra. It serves as the bridge between soul and mind. It is the source of self-expression and allows us to speak our highest truth. Creative expression is also tied to this chakra. When your throat chakra is blocked, your communication center is down. Physical symptoms of a blocked throat chakra are said to include sore throats, allergies and problems swallowing.

My throat problems started on a very ordinary day. I worked at a small law firm with only four other co-workers and it was the day of our office holiday lunch, at a steakhouse whose name I can’t remember. We ate together most days, and so the holiday lunch was more of the same, except for the fact that we ordered wine. Because we ate together so often, we also had the same conversations over and over, like married couples, but with fewer gratuitous details. At the time, I was single, and the partners, who were no more than five or six years older than me, liked to give me life advice. One encouraged me to “marry rich” (he did not marry rich). The other warned me that if I was going to have kids, I should “have them soon” — this advice usually came after a sleepless night because his twins were under a year old. I mostly just listened, but I didn’t connect at all with their advice. I could not imagine getting married or having kids. In fact, I couldn’t much imagine my future in any sense.

If anything could be said for this time in my life, it was that I was stuck. I had a job that paid well, nice bosses and good hours, but I was deeply unhappy with my career. I continued to have a difficult time in my relationships, unable to commit to anyone. I dated men and women, but never lasted more than a year with anyone. I filled my life outside of work with as much activity as possible. I ran the Brooklyn half, swam across the East River, took a creative writing class, studied Spanish. I hoped that by filling my days up with activities, I could fill all the loneliness and fear that had settled in when my mother passed away. Instead, I was just insanely busy, and I had a permanent sinus infection from the pool.

I wish I could tell you that there was something definitive that pushed me in a different direction, but the truth is change happened slowly. I got tired of my job. Some of the therapy I’d had years earlier finally came into focus. I started to grow up. Almost one year after the crab incident, I allowed myself to actually fall in love for the first time. Of course, I picked a terrible woman to fall in love with. Terrible because she was already in love with someone else. When she realized that I was her rebound, we broke up. After the breakup I felt as alone as I did when my mother had died. But I had overcome a huge personal barrier. I was able to show another person my whole self, something I had never done before, and I met someone else.

Soon after that, I got up the nerve to make a career change. I went back to school to get my MFA in Creative Writing, moving from New York City to Baton Rouge, Louisiana. I was the oldest person in my class, almost by a decade; many of my classmates were recent college graduates and had already been published. To say I had imposter syndrome would be to put it mildly. For the first year I worried about everything, so much so that it was difficult at times to even write a sentence. In the classroom, I found I could barely speak. My anxiety and fear of getting it wrong would practically paralyze me for entire three-hour workshops. I spent most of these workshops trapped in my head, convinced I did not belong.

The history of hypochondria — a physical illness turned mental illness — makes me wonder about how we understand where illness comes from and what we believe our illnesses say about us.

My girlfriend, Sandra, moved with me to Baton Rouge, and offered a fresh set of eyes on the anxiety I lived with that I thought was no big deal. She had once gone to art school and was surprised to see how affected I was by the classroom, but Sandra was also very supportive and encouraged me to keep going. It wasn’t an easy place for us to live. Baton Rouge is a college town where the main cultural event is football, something that neither she nor I had any interest in. But there was one redeeming quality for Sandra, and that was crab season. Once, after I had enough beer, Sandra convinced me to eat crabs. After all my worrying about crab, nothing happened, confirming what the allergist had told me years before.

But I still continued to suffer from unexplained problems with my throat at other times. It usually happened when I was out. I would rarely tell anyone what was going on. I feared that if I said out loud that I was having the feeling, then it would make it more real. I was also embarrassed. Why did I feel that my throat was closing up all the time?

Coming back from summer break after my first year, I knew I couldn’t go on with this much anxiety for much longer. I had lost weight. I wasn’t sleeping well.

I found a therapist who focused on mindfulness. When I felt myself get anxious in the classroom, she wanted me to consciously notice the place where my feet touched the floor and where my back touched the chair. I started to practice mindfulness every day, and these exercises actually started to work on a very incremental level.

The throat-closing-up feeling didn’t go away completely, but mid-way through my second year of grad school I was mostly myself again. I could talk in class. My writing started to open up and I had more ideas than I could handle. Sandra and I made plans for the future.

***

Hypochondria is now called illness anxiety disorder. Turns out it wasn’t always considered to be a mental health issue. The root of the word is Greek: “Hypo” means below, and “chondria” refers to cartilage. In Hippocrates’ Aphorisms, hypochondria referred to the soft part of the body below the ribs. Catherine Belling, who wrote a book about hypochondria’s history, says that “until the early 18th century, it meant a physical disease caused by imbalances in the region that was below your rib cage.” This changed in the 1800s because of new medical frameworks and shifting social attitudes.

The history of hypochondria — a physical illness turned mental illness — makes me wonder about how we understand where illness comes from and what we believe our illnesses say about us. I grew up believing that the only kind of illness that mattered was the kind that could kill you. But as an adult, I feel differently. We are trapped in our own bodies and our own minds. When we experience distress, it doesn’t really matter where the distress comes from. We feel it just the same.

A distant cousin of hypochondria is the psychosomatic illness — where a physical condition has no medical explanation and is thought to be caused by a psychiatric problem. I still have no way to confirm whether the thing I felt that day and continue to feel from time to time in my throat is “real.” There is no one to tell me whether I will feel it again. There is no plan for recovery. I do not know if this will affect my chances for survival — if the anxiety I carry around will mean I will have a shorter lifespan. I think back to my father’s friend’s advice when my father was worried about falling in love with my mother. “Nobody lives forever.”

***

Sandra has started an annual tradition with neighbors, where they steam crabs in our backyard. Since that night in Baton Rouge, I haven’t eaten it again. It makes me too nervous. She points out that I have eaten crab since that first fateful day and nothing has happened. She reminds me of the allergy test I’ve taken. She challenges me to eat it, telling me that moving past my fears is a sign of growth.

On the night of our crabfest, I remind her to pick up a side of shrimp.

* * *

Alyson Pomerantz works in law firm communications and lives in Poughkeepsie, New York.

Editor: Sari Botton