By Brontë Pearson

I recall the day strawberry-banana smoothies turned their backs on me. My mother and I stopped for a sweet treat on our way to see my pain management doctor for my biweekly fibromyalgia check-up, as we often did. I’d never had issues with strawberry-banana smoothies in the 15 years before. In fact, I’d thought they were one of the most exquisite things the world could offer. I slurped down the sweet and sour blend like a tornado on a mission and relished the cool tingle inside my cheeks. But that day, as I lay back in the reclined passenger seat of my mother’s PT Cruiser soaring down the interstate, my bottom lip swelled. The inside of my lip sprawled against the outer wall until it couldn’t expand any more. And then, my throat. I found my tongue creeping back as far as it could stretch, wiggling back and forth to sooth a persistent itch.

I was suddenly allergic to bananas. We had to go back to the house to get my inhaler. My itches transformed into an asthma attack marked by intense coughs laced with desperate wheezing. We rescheduled my appointment, and I spent the afternoon inhaling albuterol to relax the muscles in my airways until my lungs decided bananas weren’t worth asphyxiating over.

As a plethora of other food allergies and symptoms soon developed, my mother took me to a gastroenterologist. The only way to uncover the issue was to perform an endoscopy. The pictures from the scope showed that I had ulcers and inflammation in my stomach lining, but the mystery was solved through a biopsy that same day. It revealed the presence of an abnormal number of eosinophils.

Although eosinophils are found in many places throughout the body, particularly within the gastrointestinal tract, the esophagus is not normally one of those places. The presence of eosinophils in the esophagus causes the allergic inflammatory condition called eosinophilic esophagitis, or EoE. I was officially diagnosed with this condition at age 15.

EoE symptoms vary for every person and may differ depending on age. A young child may struggle with eating, vomiting, and poor weight gain. As the child ages, he or she may begin to struggle more with reflux, chest and abdominal pain, and difficulty swallowing. Eating can be a serious gamble. Dairy, soy, peanuts, corn, and an array of other foods initiate an immune response as a toxin when eaten, pushing me into a slew of digestive and allergic complications. In my adolescence, my flares would primarily consist of digestive problems, while an adult with eosinophilic esophagitis is more likely to experience esophageal problems like difficulty swallowing. As I have grown older, I have noticed my EoE evolve from juvenile symptoms to more of those of an adult, though some of those juvenile symptoms remain prevalent. I’ve found in recent years that food gets more easily lodged in my esophagus when I swallow, not unlike when you swallow a big bite of the driest turkey you’ve ever had. This process causes me to choke or need to force fluids down my throat to push my meal along. 

Finding an effective treatment to solve symptoms and allergies that are continuously changing has been a major challenge. My pediatrician performed a scratch test to identify my exact food allergies, and the gastroenterologist prescribed a proton-pump inhibitor to suppress acid production and an anti-nausea medication. I started an elimination diet where I eliminated the foods causing allergies. This diet was usually helpful in reducing symptoms, but EoE is incredibly complicated. Sometimes, foods eaten regularly may lead to triggers, even ones that were never associated with symptoms before. Symptoms may also appear with a food on one occasion and then be absent the next time that it’s consumed. 

Rice gave me almost immediate digestive flares when I was a teenager, but as time has passed, I’ve reintroduced a side of rice with meals on occasion and have not encountered many issues. On some days, though, I transport right back to my adolescent body, and lo and behold, I’ll find myself doubled over with severe nausea and abdominal pain.

Unfortunately, it is not enough to be symptom- or eosinophil-free to be considered fully treated. Eosinophilic esophagitis comes and goes, unlike an infection. A few years after my diagnosis, I had minimal symptoms for about a year, but the summer before my junior year of college, I began having excruciating abdominal pain that seemed perpetual, and my food allergies returned. After a few months of seeking refuge beneath a heating pad, I visited another gastroenterologist and underwent an endoscopy and biopsy, and they confirmed that I had a high eosinophil count, gastritis, and multiple ulcers. Stomach acid eroded my stomach lining like heat melts icing off a cake. My medication fell short of helping my condition, so I tried new ones. I describe my hunt for the right medication as a process of trial and error over these last 11 years since my diagnosis, as my body either reacts adversely or develops a tolerance to medications. 

Although meal choices and even treatment methods are a gamble for people like me who live with EoE, the quality of our lives doesn’t have to be. I have joined a Facebook group for people who are diagnosed or have a loved one who is diagnosed with EoE. Here, we can endure our struggles and celebrate our battles won together as we exchange experiences and strategize our way through each round with the Russian Roulette of gastroenterological disorders. Because EoE affects only one to four of every 10,000 people in the United States, this struggle can feel lonely. Discovering a community of others who can relate to my experiences with this condition has benefited me in manifold ways. I am hopeful that, by sharing my story here, others who are navigating EoE may find that same comfort knowing they are not the only ones enlisted in this unpredictable duel against themselves and will feel inspired to find the connections and help they need to tackle this complex condition.

Brontë Pearson, M.A., is a research writer for the Winthrop P. Rockefeller Cancer Institute and a freelance science journalist and creative writer. Ms. Pearson resides in Little Rock with her two children and enjoys nature walks, alternative rock music, and Thai food.

By Elizabeth Bales Frank

I live two blocks from a hospital, so that the moans of passing ambulances never diminish but are choked off mid-cry. At the start of the pandemic, the ambulances wailed by my apartment building so consistently that it became a soundtrack, the woodwind section of a diabolical orchestra in a perpetual, unresolved tune-up. 

The advantage to the hospital’s proximity is that I can walk to the emergency room. I have done this twice. The first time, I walked in on an ankle fractured in two places. News of my feat spread among the residents, some of whom swung by to ask for a demonstration after seeing the X-rays: “They’re saying that you walked here. Can you show me?”

The second time I walked to the ER, I couldn’t breathe. I’d been to Urgent Care that morning and was dismissed after an hour on a nebulizer with the diagnosis: “Sometimes you graduate from Urgent Care. You’re still wheezing.” I knew better than the doctor that I was still wheezing, but unsure of how I was meant to commemorate my “graduation.” I returned home and coughed in long hacking arias, propped up on pillows in my bed. Intermittently, I checked my work emails. Then that evening, after addressing a calamity in corporate communications, something inside of me clicked. Asthmatics know this click. 

“I hope that helps,” I emailed my colleagues. “I need to go to the ER now.”

It was eight-thirty, approximately twelve hours since I had graduated from Urgent Care. I pulled on my coat and left my apartment so abruptly that I left behind both of my phones—my work iPhone and my personal cell. Midway on the journey to the ER, I realized that my lack of cell phones would be a problem when they asked at Admitting, “Person to contact in case of an emergency.” I considered “in case of an emergency” a semantic point, as the emergency was already occurring. I chose not to turn back. At a certain point in an attack, the lungs take charge, as they would if you were fighting to surface from a shipwreck and realized that your wallet is down on the ocean floor. You would not turn and dive down to retrieve your ID. You would dive up, towards the life-sustaining lungful of air.

The waiting room at the hospital was packed but calm. As I bent over the sign-in sheet, the admissions clerk asked, “Do you have asthma?”

For the previous two days, my breathing had whined like the fretful pipe of a damaged church organ, the congested whistling asthmatics try to fight with persistent but futile – “non-productive,” in medical parlance – coughing that results in no relief. The lungs, a collection of clogged, exhausted straws, ache. The ribcage aches. By the time I reached the admissions desk at the ER, my breathing had progressed to an ongoing crackle, like the static on a beat cop’s walkie-talkie. 

Did I have asthma?

I nodded.

With gratifying speed, I was placed into a jaunty wheelchair, brightly colored, shaped like a folding chair on wheels, and propelled to an admitting station. My intake was eased by the medical record of that broken ankle (“Everything still the same?”) Then I was wheeled through another crowded corridor. I was parked at a crossroads of activity and stillness, a tumult of patients to my right, and before me a long corridor which held a few crash carts parked outside open doors, with a circular desk at the end of it, manned by a young woman with a high blonde ponytail. 

On my right, the corridor was packed and in a waiting area, every chair was taken. Patients laid on gurneys in a long line waiting to be X-rayed. Patients sat in chairs clutching injured limbs. Agitated patients weaved through the supine and the seated, demanding food, water, sympathy, acknowledgement. They were attended to or ignored by scurrying staff propelled by such urgency that I thought they were responding to a recent catastrophe—a train crash, or a building explosion. I asked, but was told no. Just a Monday night in December 2017 in a hospital formerly known as Astoria General before it was upgraded and absorbed into the Mount Sinai system.

I breathed shallowly, but with a serenity new to the past thirty-six hours. When I had decided, the night before, to go to Urgent Care, I learned that Urgent Care cared urgently only twelve hours a day. It was three in the morning when I checked their website. I had to wait until eight to walk through their doors. Unlike the depictions of them on TV, asthma attacks are not flailing, thrashing affairs. You don’t have the breath to rock to and fro shouting “I can’t breathe!” as patients do on hospital dramas. You sit. You quell your panic. Panic drains breath. Your reservoir is perilously shallow. You sip delicately at each breath. You promise yourself that help is on the way. 

At Mount Sinai, the ponytailed girl down the quiet hall called out my name and I raised my hand hopefully, like an airline passenger on standby.

Most medical personnel present to me as highly confident high school seniors. ERs in particular are staffed by recent graduates eager to combat their medical student loans with hefty schedules of overtime. The ponytailed young woman told me this after she trotted over and began firing questions. I responded with a few of my own, including why does the entire staff look like the student body of a high school. She herself looked like the captain of the varsity track team: fit, steely, restless with energy. She was my attending physician. I handed over the report from Urgent Care. She and the nurse at her side frowned as they read it.

“Left lung X-ray ‘abnormal,’ ” Dr. Track rolled her eyes. “How helpful.”

“This is the worst asthma attack I have ever had as an adult,” I told her in careful breaths. But history was irrelevant. I was no more than today’s readings. The doctor at Urgent Care had taught me this twelve hours earlier. 

“This is the worst asthma attack I’ve ever had that didn’t involve a cat,” I had told Dr. Urgent Care. “I had very bad asthma as a child. My parents were both heavy smokers and we had four cats.”

Dr. Urgent Care had gazed at me as though I myself were a cat, pussyfooting around his exam table while he waited for me to settle down so he could measure my signs.

At Mount Sinai, Dr. Track asked, “How often have you been admitted overnight for asthma?” 

“I’ve never been admitted overnight.” I added. When her raised eyebrow hinted that I was a lightweight, as asthmatics go, I supplied more unnecessary history: “The last time I was in the ER was the John Muir Medical Center in Walnut Creek. I was visiting my brother. He had a cat. It was a wonderful ER,” I went on talking about my California stay as Dr. Track tapped at her device. “They had heated blankets.” I was, also, their sole patient for two whole hours, until a boy came in with a sprained wrist, but it seemed rude to bring that up. “And an oxygen tent!”

“There’ll be oxygen in your nebulizer treatment,” Dr. Track told me with a touch of disdain, as if oxygen was just another drug junkies craved. “How long ago was this?”

“John Muir? Um, it was the year E.R. debuted.” Dr. Track exchanged an unreadable glance with her nurse. “The show, E.R.? George Clooney? I guess . . . you’re too young.”

“X-ray,” said Dr. Track to the nurse, and once again I was rushed away to wait. 

After my mother died when I was eight, I developed severe asthma. I’d had allergies before then. I remember my mother’s impatience with me when I couldn’t easily swallow my first prescribed antihistamine pills. But a few years after her sudden death, I found myself unable to breathe to the point where I was hurried to the ER. I was then sent to an allergist to determine the cause. 

I was subjected to a scratch test in which my back was pricked repeatedly with dots of potential allergens in long even rows (“hold still, hold still”), which raised hot itchy wheals as though an angry army had set up tents on my back. I was allergic to dozens and dozens of triggers. I was allergic to things I had never encountered, like cattle, things I had never heard of, like Brazil nuts, and things that filled my waking days and sleepless nights, such as cigarette smoke, cats, dust, and most of the grasses and the trees in the yard outside. 

Treatment in those days, at least in my part of the world, at least for children, was random and arbitrary. A belief prevailed that asthma was “all in your head.” It was the ‘70s, the era in which Susan Sontag was diagnosed with breast cancer and explored the culture of victim-blaming in the literature of health. In Illness as Metaphor, she wrote, “A disease of the lungs is, metaphorically, a disease of the soul.” But she also wrote, “Theories that diseases are caused by mental states and can be cured by willpower are always an index of how much is not understood about the physical terrain of a disease.” At Children’s Hospital in downtown St. Louis, I was made to drink water, glass after glass after glass, until I vomited. And then I was made to do it again. 

My future stepmother Claire, who had just started dating my father, sat with me, urging me on. “Honey, you know I’d drink that water for you if I could,” and “honey, the doctors know what they’re doing.” She said this after I pointed out that my stomach and my lungs were in no way connected. Why was I being made to drink water as though I had been poisoned? It wouldn’t clear my lungs. I was only eleven, but I knew that much. 

I also knew that I was a burden, that if I’d had any decency, I would have made myself easier, not more difficult, to care for, after my mother died. My grief was a corset and invisible hands pulled its strings. I was learning to manage the panic of an attack, but I hadn’t yet mastered the shame of one. My father wouldn’t sit with me. During the long night of the water, he sat in the waiting room where he could smoke in peace while his girlfriend, a woman so alien that she didn’t know enough to refrain from calling me  “honey” – that we were not a family of endearments – coaxed me through the ordeal.

We sat in a room filled with steam humidifiers, which would indicate a token acknowledgement that the crisis was in my lungs. But they made me drink on and on, glass after glass of water, all through the night. I have no memory of how this night ended, or when the morning came. Years later, one of Claire’s sons asked one of his professors why the doctor would put me through that torment. He replied, “To take her mind off things.”

After that, the prescription was to sit in the bathroom near my bedroom with the shower turned fully to hot until steam filled the room, and the doorknobs dripped fat drops of condensation. I was to breathe in steam until my lungs became “relaxed.” I did this on numerous long nights, in the spring, when pollen was at its worst, and in the fall, when mold was at its worst, until dawn—however a poet would describe it—gentled the sky with a smear of light. 

Only if that failed – and it nearly always did – only then was I permitted to wake up Claire. She was my stepmother by then, and tasked wholly with my care. So she packed up her cigarettes and drove me to the emergency room.

Friends and therapists have asked where my father was. He was in one of three places: asleep in bed, at the office, or standing in the kitchen corner with his cigar, his sports talk radio and his gin and tonic. “You’ll outgrow it,” was his only contribution, accompanied by a baleful stare reproaching me for not having got on with the outgrowing, the metamorphosis into healthier lungs.

My stepmother smoked and muttered in the car but delivered me into a suburban ER where the water torture was replaced by actual medicine: a hypodermic needle of adrenaline. I grew to associate the chemically-induced timpani of an adrenalized heartbeat with a profound sense of well-being. Once back home, I fell into a deep sleep, even while my heart raced.  

At Mount Sinai, they gave me vials of albuterol administered through a nebulizer which wafted out medicinal steam. I breathed through a mask through three courses of the medication. Although a stimulant, albuterol is no adrenaline. It relaxed my bronchial tubes but it did nothing for the mucus clogging them, which could only be dislodged through violent coughing, and then only temporarily. When I tried to lie down, mucus gurgled through my lungs with the groan and drama of pipes of an old apartment building. I had to sit up and cough it out in wracking jags that lasted two to three minutes, sometimes crouching on my hands and knees.  

When I had inhaled every drop in the vials, a nurse appeared and replaced them with fresh ones. When those, too, were absorbed into my lungs, he appeared again, plucked out the empty vials, and replaced them with full. 

“Last round,” he said, patting my hand, before he disappeared for good.

I suppose the pat was a reward for good behavior, for not having dementia, like the woman on my left who continuously shrieked, “What’s taking so long? I’m gonna miss the ambulette!,” for not having loud combative relatives, like the woman on my right, for not complaining, like the ones cluttering the hallway. I spent my hour-long albuterol sessions quietly breathing in the medication, removing my mask only to cough. An ideal patient.

Although my father believed that my asthma was a rare malady I had plucked out of thin air to complicate his life, asthma is almost certainly as old as breathing. It is first mentioned in The Iliad, when Hector, mighty Hector of the glancing plume, lies out of breath (the word Homer uses is asthmatì) after battle on the plains of Troy. Asthma then meanders through the ancient world, through Aristophanes and Plato, generally employed to mean “breathless” before it is taken up for serious study by the father of medicine himself, Hippocrates, who describes it in some detail in his treatise On Airs, Waters and Places. Asthma then catapults to ancient fame with the asthmatic Seneca, who wrote to a friend: “anything else may be called illness; but this is a sort of continued ‘last gasp.’ Hence physicians call it ‘practicing how to die.’ ”

When I graduated from the Mount Sinai ER, I was released into the crisp, still air of a December near-dawn. I had been in the ER for roughly seven hours, the last fifteen minutes of which were spent with the hospital bursar, who was unable to convince the hospital software to process my hundred-dollar co-payment. She waved me away cheerfully. “We’ll bill you,” she chuckled. I laughed with her, as though hospital expenses were merry. Part of me laughed just because I had the air to do it. 

I walked out of the hospital, toward my bed, in which I would be able to lie flat and sleep for the first time in three nights. I went out as I had come in, on my own two feet, walking the 80 paces down Crescent Street to home, past the echoey pre-war brick apartment buildings with their grand colonial names – the Mayflower, the Queen Anne, the Jefferson — and the Church of the Redeemer, built in the 19^th century with local granite. I have always loved this church, with its Gothic design, its humble height, and its rambling garden made more bucolic by the intermittent nature of its tending. I remained sick, weak, coughing and bedbound for another week. My primary care physician prescribed steroids. Eventually, this fierce, mysterious illness left my body.

When the coughing finally abated and I came off the steroids, in early, pre-pollen spring, I looked up “deaths by asthma” on the website of the Centers for Disease Control and Prevention. In 2017, 3,564 people in the U.S. died from asthma. It struck me at the time as a very large number of people to die from respiratory failure. 

Although I had, during several of my adolescent asthma attacks, felt an encroaching blackness, there was only one time that I felt truly imperiled. It was bad enough that my stepsister fetched both my parents, bad enough that my father actually climbed the stairs to look at me. I was sitting cross-legged on my stepsister’s bed, hunched over, clutching my kneecaps.

“I’m gonna die,” I gasped.

“No, you’re not,” my father answered. His scorn was shriveling, as though I were indulging in mere teenage drama, claiming that I would just die if I didn’t get a certain prom dress.

I didn’t know, at the time, that people did die from asthma. I didn’t know until I moved to New York for college and the chancellor of the New York City Schools died. According to his obituary in The New York Times, he said to his wife, “Babe, I’m not gonna make it this time,” before he collapsed. He heard the click and this time, it was fatal. He never regained consciousness. Reading this in my dorm room, I thought of all the clicks I had experienced. I thought of my father’s disdain. I thought, now that I had control, or what I could muster of it, of my health, I would take this seriously.

In April 2020, Elmhurst Hospital was the epicenter of the epicenter of the COVID pandemic, and the Astoria branch of Mount Sinai served as its overflow hospital. Ambulances rushed three times an hour past the Jefferson, the Mayflower, the Queen Anne. Crescent Street teemed with flashing lights and triage tents. The Church of the Redeemer set up cots for the staff of the hospital so they could snatch a nap between shifts, without having to risk carrying the infection home. I pictured Dr. Track, before she could so much as loosen her hair, collapsing on a cot into the gentle arms, as Shakespeare would have it, of “Nature’s soft nurse.” 

In Romeo and Juliet, Juliet petulantly demands of her Nurse: “How are thou out of breath when thou hast breath/to say to me that thou art out of breath?” The Nurse has returned from her visit to Romeo. Juliet is far more interested in what the Nurse has to say about Romeo than the fact that the Nurse lacks the breath to say it. 

The pandemic brought us many Nurses out of breath, and a not inconsiderable number of Juliets who resented the Nurse’s breathlessness as an inconvenience to their own affairs. In my small corner of the world, some of us even functioned as a kind of Chorus, marking the shifts of the health care workers wearily trudging home from the hospital with what became known as the “the clap,” the applause that started up when the shift change struck at seven o’clock, leaning out of their windows to cheer weary hospital staff trudging toward the subway. Some, not content with their hands and voices, banged cookware for greater effect and sound.

“Pots and pans,” I pictured Dr. Track muttering, “How helpful.”

But I tried not to picture the patients inside the ambulances keening past my window, the patients attended by EMTs in HAZMAT suits, wheeled into ICU’s as they fought for breath until, all too soon, they lost the fight, without so much as a part on the hand or the promise of a last round. In the early days of the pandemic, I was terrified, as everyone was. I was simultaneously more terrified, as someone with an existing respiratory disability and so more vulnerable, and less terrified, as someone who had, so many lonely, aching nights, been practicing how to die. It is a feat I have yet to master, just as I have yet to return to that hospital, on foot or any other way, as I live and breathe.

Elizabeth Bales Frank is an essayist and legal researcher who lives in Astoria, Queens, New York City. Her work has appeared in several publications including The Arkansas Review, Cosmopolitan, and The New York Times. She holds a BFA from the Tisch School of the Arts at New York University and an MLIS from the Pratt Institute. 

By Bree LeMaire 

The AIDS quilt panels spread out over a quarter mile in Washington, D.C., on the National Mall. People slowly, reverently, walk looking down, taking in endless panels. The reality of it all jolted me. I knew there were deaths, but I never dreamed they were of this magnitude. One panel had an appliquéd photo of a man floating on clouds surrounded by signatures. Another had a tree with a name on each branch and then further another extended section with kids having hemophilia, mostly boys, so very young. Another panel showed a bouquet of multicolored balloons and below them a name with the lifespan date. Next was a flag full of stars across a gay rainbow and a short poem with a name. Then came a Spanish saying mentioning discrimination with the victim’s picture and the word “non.” One after another of clouds, balloons, quotes, sayings, and special messages. With a full heart I realized they all spoke of a special individual loved enough for another to take their time to construct a quilt. I joined the slow parade, walking, in my own solitude, reading, digesting, taking it all in. 

I was two years into my work as an AIDS research nurse at UCLA, and had gone home to visit my folks in Delaware.  Only a short train ride to check out the quilt, this experience was a break from family intensity. 

Strategically dressed in white and walking between the panels were grief volunteers. It was late afternoon. Some spoke quietly with the strolling visitors, while another put their arm around an older man and offered a tissue. At one point I watched a conga line of those white-clothed people holding hands and quietly dancing by. There in the middle of the line was Richard, a handsome man with light brown, curly hair and deep blue eyes, a friend. Here was a familiar, understanding person to connect with, one of the subjects in my study. Neither of us had talked of going back East, and there he was, standing with his arms open for me to walkinto.

“I can’t believe all this. How does a person take it all in, so many?” I mumbled. 

Once we recounted our surprise at meeting one another so far from Los Angeles, Richard led me to a nearby bench. I cried while he supported me for at least an hour. Then a far-off bugle began playing taps. The white-clothed volunteers began to form a circle around each quilt, and slowly began a silent folding ceremony. Each piece was taken, stacked, and stored for the next day. 

“The damp comes in at night and seeps in if we don’t put them in dry storage,” Richard explained.

As the guardians put the panels away, I hugged Richard and said goodbye. We promised to reconnect, and I headed back to Delaware, a million miles from all the sadness. A month later, I heard from Richard. He said he’d been dealing with mycobacterium avium complex and cytomegalovirus, both normal bacteria and viruses we carry every day, but immuno- compromised people cannot fight them off. 

“I was responding to treatment,” he said, “but we all know there is no cure.” When he felt better, I saw him for a home visit. This included a lunch his home health aide prepared. Richard lived in a beautiful West Hollywood house, bright and sunny with lots of windows, flowers, and white curtains. There were newly planted pansies, begonias, and white daisies along the entry walk. We enjoyed the sunshine from his kitchen window. He said, “I used to own eighteen houses in Los Angeles. I invested in real estate, and now I’m losing them all as I can’t make the payments.” It was his way of telling me how successful he had been, a counterpunch to his illness.

When I next called Richard, his roommate said he’d moved, which didn’t make sense, as he had seemed settled in at home with his aide. Then I heard from his aide. Richard had died. Six months later, I read his obituary in the L.A. Times. He’d died in a local hospice. I realized his desire to be seen as a successful real estate investor, not a debilitated victim in an AIDS hospice. Once more I knew the emptiness of separation during Richard’s final days and felt sad, as I was never offered the opportunity to say “Goodbye.” Even so, I cherish the sunny Washington afternoon when he emerged from a conga line and welcomed me into his loving embrace.

Bree LeMaire, RN, M.S., worked in HIV research for ten years. At forty-eight, she was happy to find a research job at UCLA, even though HIV was something health care workers avoided. Her focus would be on research, never thinking the patients would become dear friends who became sick and died. Writing was her method for coping with so many deaths.

By Carolyn Roy-Bornstein 

Decades ago, I stood before her, scalpel in hand, a shy young medical student, awestruck and trembling. Now I am 65, the age of my cadaver.

Four students were assigned to each donor body. We took turns with forceps and saws – cutting through layers of skin, fat and fascia. We teased apart networks of nerves, arteries and veins. We weighed airless lungs on hanging scales. We worked methodically in sections —limbs, pelvis, thorax — exposing only those areas critical to the day’s work, with the rest of the body kept wrapped in white sheets and clear plastic. Lastly, we unveiled the face. What could our professors have been shielding us from with this practice? Surely not death itself. By the time we viewed our cadaver’s face, we had held her non-beating heart in our hands, our knife edges placed across her cold still chest.     

I believe our mentors were trying to save us from our emotions. The message we received was to detach ourselves from this patient, essentially our first one. If we gazed into this person’s eyes, perhaps we would be unable to complete the tasks required of us. The precise incisions, the delicate separation of tissue, might be rendered impossible were we too attached to this figure on our table.  

This was the hidden curriculum in medicine, the seemingly agreed-upon agenda. Keep a professional distance between you and your patient. Don’t get too familiar. You may ask personal questions of them – you’re the doctor, after all. You must. But don’t give out any details about yourself. Bonding too closely with your patients will make caring for them too difficult. It will cloud your judgment. 

But what if it turns out that the opposite is true? What if the care our patients need is made clearer by listening intently to their story? By getting to know them not just through their symptoms but by how they came to be here—in your office, sitting across from you? Where they live and work, who their friends are? What their deepest secrets or worries might be? What if learning to listen in this way — paying radical attention to the other human being in the room —not only made us more empathetic physicians, but also created meaning in our professional lives? What if feelings were not something to be protected from, but rather something to be embraced and explored – something that could enrich our physician experience and make for purposeful work?

Since the early 1990s, narrative medicine has been studying this very possibility and coming to the heartening conclusion that yes, such deep-rooted human interaction can indeed deliver on each of these promises. As the writer-in-residence at a family medicine residency program, I have learned to use narrative medicine’s principles to create a safe space for young physicians to process their experiences with their patients through literature and gain perspective through reflective writing. We use close readings of poetry to enhance our powers of observation. We write reflectively together, releasing the suffering to which we bear witness every day. Sharing our work requires us to be brave and make ourselves vulnerable, but it strengthens our relationships with each other as colleagues and deepens our connection with our truest selves.

In a recent session, one of the residents wrote movingly about bearing witness to the death of her patient. 

 “How did it feel to write those words and to share them?” I asked.

“I guess I didn’t realize how much guilt I was carrying for not doing more for my patient at the end of his life,” she said quietly.

We noted the use of the past tense in her words, agreeing that in writing about the incident, she had not only identified the overarching emotion associated with the event, but also was able to release just a bit of it with her words.

Now finally, at the age of my cadaver, I think I understand what she was trying to teach me all those years ago.

Don’t be afraid, my dear. Come closer. Look me in the eye. You will suffer more by keeping your distance, by not allowing yourself to get close, to take chances, to feel. Remember: you will find your meaning once you open yourself, as you have opened me.

Carolyn Roy-Bornstein is a retired pediatrician and the writer-in-residence at the Lawrence Family Medicine Residency program. Her work has appeared in the Washington Post, the New York Times, the Boston Globe, JAMA, Poets & Writers, The Writer magazine, and many other venues. She lives and writes in Maine and Massachusetts.

By Elizabeth Hanson

She is thin, frail, and sickly when I meet her.  The right side of her chest is tattooed with a dark purple bruise that spreads up her neck – the aftermath of her port removal. She is tethered to an IV pole by multiple infusions of antibiotics, vasopressors, and fluids. She is bald. Her husband is next to her bed, his skin rough and tanned, shadowed by white hair and a stiff beard. He is feeding her watermelon with a spoon as she smiles when I walk in, her smile lighting up the room. 

She tells me that she feels okay today, that she is sore where they pulled out her port, but that she knows it had to go because of the infection. She tells me that she doesn’t mind the bruising, that she thinks it’s even starting to fade a little already. Her husband jokes that it makes her look tough, and she laughs as he offers another chunk of watermelon to her lips. He says he is thankful things are looking better this morning. She says she agrees, and that the watermelon is as sweet as can be. They sit together in the ICU the way an old couple sits together on a back porch sipping coffee at sunrise – as if nothing else matters.

She has cancer refractory to all therapies. Her infection is treatable though, and in three days’ time she leaves the ICU. Her husband walks beside her bed as she is rolled down the hallway. He reaches over the railing and their fingers entwine. She glows when they touch. A cautious smile forms at the corner of his mouth, subtle but suitable. He squeezes her hand, and together they go.

She returns in a week when her kidneys fail. Accompanied by her husband and a friend, she is sleepy and pale and unaware of their presence. A watermelon container sits between them, its lid tightly sealed. She is started on dialysis but she does not get better, her eyes blank and gray. Her mouth hangs open, her death rattle floating through the air, audible from the doorway. Her friend sits in the corner as her husband stays by her bed watching, waiting, hoping, and holding her hand as if this may instill her with new life. He bows his head when I tell him I think we need to talk. Yes, he says, I think that we do. 

I expect anger and sadness when I tell him she is dying, that we have tried everything, that the dialysis and infusions and poking and prodding are causing more pain and harm than good. I expect sniffling and tears.  But he nods in understanding. He lifts his wife’s hand between his palms and kisses it gently. And then he turns to her friend. How about this, he says. Why don’t we go downstairs, to the café, and split a pizza. How does that sound? Split a pizza and call the family. And then, we can come back to say goodbye. They walk out of the room, and I am left alone with her, surrounded by my thoughts and curious notions of what it means to be human.

Elizabeth Hanson, M.D., completed her residency in emergency medicine at UAMS and is currently a second-year critical care fellow. Outside of work she enjoys writing, drawing, and spending time outdoors.