By Shaili Jain

“Your father’s health has taken a turn for the worse. We’ve stabilized him, but he is approaching the ceiling of care. We’ll allow family to come in, two at a time, but visitors have to self-isolate for ten days afterward.”

My husband, R, and I sat on the couch in the living room of our London rental listening on speakerphone to Dr. P, a senior pulmonary specialist at an east London hospital as she took care of R’s father, ill with COVID-19 pneumonia.

This day, a Friday in January of 2021, marked day 20 of my father-in-law’s hospitalization. He was one of the unfortunate ones for whom a bout of coronavirus meant his own immune system, after killing the virus, went into overdrive from healing to destructive, attacking his own organs. For the past three weeks R and I have been virtually coordinating his medical care and, like millions of families around the globe, were immersed in the language of COVID: cytokine storm, Optiflow, venturi mask, CPAP machine, D-dimers and dexamethasone. We have been consumed in a daily rhythm of making calls to the hospital, waiting for medical updates from the doctors, anxiety, tears, randomly preparing perfunctory meals, and sleepless nights. As the brown children of immigrants raised in England, we have also reprised our childhood roles: advocates and translators for our parents and navigators of the hospital systems that will always remain anathema to them. 

This is the call we have been dreading. As Dr. P talked, I moved closer to R on the couch, instinctively grabbing his hand, and while I wait for him to respond, I studied his face, a face I had known for 30 years. The cheekbones were more chiseled, skin tanned from the California sunshine, and sideburns greying, but it remained the face of the man I’ve loved since my freshman year of college. 

“Thank you for updating us, doctor. I’ll make my way to the hospital shortly,” R said calmly.

As we hung up, R looked at me, his face stunned.

“This is it. Dad’s not going to make it, is he?” 

My mind whirled.

“We just have to take one hour at a time,” I murmured. “Call the rest of the family, they need to be updated.”

                                                                        ***

Not long after the world had celebrated a U.K. grandmother becoming the first to receive the Pfizer COVID-19 vaccination, R’s London-dwelling elderly parents reported feeling under the weather. By the morning of our Heathrow-bound December 19 flight, my mother-in-law was coughing and my father-in-law was nursing a sniffle. Sitting next to R, double-masked, in the quiet departure lounge of San Francisco International Airport, our interlocked hands sanitized to cracked rawness, I shared my gut instinct. “The doctor in me doesn’t have a good feeling about this.” 

Two days after arriving at the London rental that would become a temporary home for myself, R, and our two teenagers, I’d watched the news reports with mouth agape: a new U.K. strain of COVID-19 was responsible for a steep rise in cases. The earlier progress made in fighting the virus yielded to a new reality – Christmas was cancelled, and new lockdowns were announced. In the days that followed, my parents-in-law would both receive positive COVID-19 tests, attributable to this mutation that was spreading rampantly in populous London. A panel of government scientists deemed the new strain more contagious and 30 percent more deadly than the original virus. Most chilling was the fact that, in the U.K, COVID-19 death rates were highest among Blacks and South Asians.

Like my own, R’s parents were also part of the post-World War II wave of Indian immigrants to England. As brown kids born and raised in the often-racist Great Britain of the 1970s, both our formative years had been steeped in the traumas of working-class immigrant households. R and I were intimately acquainted with the life circumstances of these communities of color and how this correlated with their high COVID-19 death rates. The east London postal code where R was raised, and where his parents still live, was filled with the invisible workers who kept a metropolis-like London churning: bus drivers, janitors, deliverymen and small business owners – lower-paid workers in the public-facing occupations who didn’t have the luxury of working from home. And in Great Britain, with its deep and far reaching oppressive colonial history, such workers were more likely to hail from Black, Asian and minority ethnic backgrounds.  

We also understood the mindset of these families who lived life stuck in survival mode – when trauma, stress and job insecurity are everyday facts of life, there is a limit to how much mindshare gets devoted to a global pandemic. Moreover, a pervasive mistrust of White authority (e.g., politicians, government scientists and doctors) runs deep among the Indian, Pakistani, Bangladeshi and Caribbean communities living in under-resourced pockets of the U.K. The traumatic history of the British Commonwealth means they are skeptical of people in power and more reliant on their own respective clans. This deep-rooted generational mistrust translates to millions being stuck in a surreal time warp — they cling to cultural superstitions, traditional norms and religious ideologies decades after their counterparts back home have evolved and adapted to the realities of a new day. So, if your family mobile chat spreads the fake news that keeping raw ginger in your pocket will protect you from coronavirus, that may influence you more than the BBC public service announcement telling you to wear a mask. Moreover, you’re willing to bend lockdown rules to fulfill duties related to births, deaths, and marriages, because nothing matters more than obligation to your own kith and kin.

In the early days of our own union, R and I decided education and an indefatigable work ethic were our escape from the powerlessness that defined our childhoods. In 2000, both tired of class-obsessed England, we’d made the ultimate commitment to the new world and left England for America. Together we’d built a modern life taking the only path available – working very hard at mastering difficult things. I was a psychiatrist, PTSD specialist and trauma scientist, while R was a technology start-up executive. Over the decades, we had collected accolades, reached targets, and accomplished goals which served as a healing balm that caressed the scars of our harsh early years.

The pandemic only further highlighted the differences between our Old World origins and New World life. Our adopted California tribe implicitly understood exponential virus growth, incubation periods, and why a facemask must cover your mouth and nose. Most of all, we understood how things you can’t see can still kill you. Our well-paying jobs and access to high-speed internet afforded us the privilege of spending most of the pandemic in a safe bubble, but all that changed in December 2020 when we returned to the country of our birth. In a global pandemic, a postal code, or a ZIP code in America, can determine destiny – simply living in the less affluent pockets of London means a higher risk of infection. Social distancing is near impossible on the narrow pavements of the inner city that, even in lockdown, those pavements were filled with unmasked pedestrians. The thin streets are lined with rows of century old-terraced houses, themselves barely six feet in width. Central London imposes a financial penalty for drivers of personal vehicles, so public transport becomes the default for those who are strapped for cash. Skyrocketing housing prices means multigenerational living is the norm, but this only adds to overcrowding in the grocery stores, hospital waiting rooms and local parks, structures not built to withstand this surge in population.

The forward momentum that was part and parcel of our dynamic Silicon Valley life was screeching to a halt, yanking us back into the helplessness of our past. Mental whiplash ensued along with the realization that, no matter how successful our new world accomplishments, we might not escape the destiny of our origins and our family was hurtling toward becoming a COVID-19 statistic. Our immediate concern was for R’s mother, who had the medical conditions associated with poorer outcomes from COVID-19. In contrast, his father was the healthy parent with the good genes who, with his tall, broad muscular frame and erect posture, easily looked a decade younger than his 80 years. He was the caregiver to his wife, walked five miles a day, had no major illnesses, and had never spent a day of his life in the hospital. 

This was not to say his life had been free of strife. He was the only member of his family of origin to leave his small Indian town for a better life in London. Even though he had an Indian master’s degree, he took the demotion required for so many immigrants and worked in the British postal office as a mail sorter. Once, during the 1970s, on his way home after working a double shift, he was viciously attacked by a group of skinheads at a railway station, and his subsequent police report went uninvestigated. He lived through the loss of his youngest daughter who died of childhood leukemia at age seven. Living far away from his beloved parents during a time when air travel was neither affordable nor frequent meant he was unable to make it home in time for either of their funerals. Despite all these cumulative wounds, he maintained a fastidious concrete positivity about life, saying, “Everything is fine, there is 
nothing to worry about.”

In the days leading up to Christmas, R called his parents everyday inquiring about their symptoms. Fever? Cough? Shortness of breath? Did you eat? How much water did you drink? In the backdrop, we continued to digest the local news reporting on hospitals running out of oxygen, ambulance shortages, and packed emergency rooms. Determined to avoid either of his parents needing to be hospitalized, R had a pulse oximeter shipped to their home and called 111, the National Health Service helpline, on their behalf, which resulted in a prescription for an antibiotic for his mother but no further recommendations for his father other than to keep rested and hydrated.

As we headed into the new year, R’s mother appeared to be slowly recovering, but the same could not be said for his dad. The frequency of our check-in video calls increased as we registered a dissonance between his self-report, “I’ll be fine…don’t fuss,” and his gaunt face and lethargic appearance. We could not shake the feeling that he was an unreliable narrator, not because he was intentionally deceiving us, but rather his ingrained stoicism was distorting his own perception of reality. Relative to what he’d endured in his immigrant life, how much harm could a little infection really do? 

R and I had grown up bearing witness to our parents’ suffering, whether it was the misery caused by major traumas or the torment of the daily microaggressions that accompanied life in a country where the color of their skin rendered their voices unheard. The absence of safe spaces in our childhood meant self-reliance within the family became a necessity, and this included us, as children, taking on the role of becoming parents to our own parents. Merging with their suffering led to a role reversal, as we learned from a young age to constantly worry about our parents’ physical and emotional wellbeing. This process of parentification also meant that in the face of our parents’ Old World suffering, any New World hurt we experienced paled in significance. We learned to negate our own feelings, and in merging with part of a more painful whole, we ourselves ran the risk of making our own emotions invisible.  

In his late 20s, R had tussled with his father, urging his parents to move from his ever-declining childhood neighborhood, a place R had come to equate with their chronic sufferance. R was contemptuous of the mindset of the average Londoner now living in this postal code and perpetually frustrated by the lack of good healthcare available to his aging parents in an area that had become overpopulated and under-resourced. Yet his father resisted R’s arguments to move to a “better area.” Maybe he’d become too attached to the home he’d lived in since 1973, a house full of memories of his children when they were young, including memories of the daughter that never made it to adulthood?  Perhaps my father-in-law had no energy left for another move as he had thrown every ounce he had into that original move from India – a  destiny-changing move, which ensured his children and grandchildren a whole world of different opportunities? By his 30s, R and his father reached an uneasy truce on the topic; by the year R turned 40, both father and son had settled into a more peaceful acceptance about the situation. R quit trying to parent his own parents into making a decision he felt was in their own best interests. All this meant that for the 20 years that we made our annual visit to England from America, our first stop was the modest terraced East London home of R’s youth. My father-in-law seemed to possess a sixth sense about when our taxi would arrive, because he was always there, standing outside, to greet us: a kiss on the cheek for R, a fatherly touch of my forehead that conferred me with his blessings, and hugs, laughter and an abundance of grandpa jokes for our growing children.

Now, stuck in the eye of a COVID storm, R was again thrust into the role of parent. Immigrant kids often end up making decisions for their parents that, in an ideal world, no child should have to make, and they are also left to deal with the burden of the excessive responsibility that comes with such choices. On the morning of January 3, after R’s verbal poking and prodding, my father-in-law admitted that he was feeling a bit short of breath first thing in the morning and last thing at night. Within minutes, R made the call for an ambulance and, later that day, his father was admitted to a hospital in the heart of an East London borough with a mild COVID-19 pneumonia. 

Whatever hope we might have once held that my father-in-law would make a complete recovery from COVID-19 dwindled on day five of his hospitalization, when his doctor called to inform us that R’s father was struggling to breathe, and they were now giving him hospital-grade oxygen to keep his saturation levels in the normal range. According to the doctor, while there was still a reasonable chance of his recovery, he remained in real danger and the next seven to ten days of progress would be critical in determining his overall prognosis. This sobering statement was followed with an obligatory discussion with the family about end-of-life and do-not-resuscitate decisions. 

Along with this heart-breaking turn of events, I witnessed a shift in R who, faced with the possibility that his father might die, aged overnight. With each subsequent FaceTime call he made to his dad, his own hair greyed, the circles under his eyes darkened, and his weight steadily dropped. A tenderness seeped its way into their conversations, and I watched how, during this time of crisis, the considerable differences in their ideologies dissolved, revealing instead only their stark similarities. On one particularly tough day, when hope was evading even my ever-optimistic husband, R choked up during his FaceTime call with his father. “I’m not leaving England till you come home from the hospital, dad.”

In the Old World Indian patriarchy, honoring one’s father is one of the highest virtues, and Lord Rama — an avatar of the god Vishnu, the most virtuous hero in the Hindu religion, and a person revered the world over for his goodness as a son — remains the personification of that ideal. During the distressing days of witnessing his father’s demise, I watched R’s strong sense of filial duty emerge as he took on that ancient avatar for himself. The patriarchal burden that had, until now, rested on his father’s shoulders now shifted directly to R’s, bypassing any surviving parents or other family elders. 

                                                                        ***

Dr. P’s unexpected Friday evening call interrupted my evening meal preparations, so as R started calling family, I returned to the kitchen reasoning that he had not eaten properly all day and he needed something in his stomach before he would leave for the hospital. I finished boiling the abandoned half-cooked pasta and doused the rigatoni in a pre-made carton of tomato mascarpone sauce. As the adrenaline-fueled distress of the evening ebbed, my mind started to churn. The doctor in me played out the consequences of R going to the COVID ward to be at his dying father’s bedside. What would come of him exposing himself to this more virulent and deadly strain? None of us have had COVID (so no natural immunity), nor have we been vaccinated, so our best-case scenario was putting R in strict isolation on the top floor of our rental and spending 10-14 days hypervigilant for signs of fever, cough, loss of taste or smell, all the while remaining COVID negative. A daunting scenario, but nonetheless doable. What if his hospital visit resulted in a mild case of COVID-19? That, we could also handle. I had packed some basic medical supplies and PPE in my luggage, he could monitor his symptoms and communicate updates to me via phone, and I could deliver food to his bedroom door until he was COVID-free. 

What if his symptoms took a turn for the worse? That scenario fueled a sick feeling in the pit of my stomach. What if he became too sick to measure his pulse oximeter reading or too weak to get a tray of food or communicate with me by FaceTime? I’d have to go in with my basic PPE to nurse him, but what if I got sick too? How would I ensure it did not spread to our children? And what about the worst-case scenario – what if his symptoms were severe and we had to call for an ambulance? As a middle-aged man of South Asian origin being treated for this deadlier variant of COVID-19, in an overloaded government healthcare system, what would his prognosis be?

Every fiber of my being knew R’s decision to go to the COVID ward was a mistake. Yet shockingly, despite having an honors degree in microbiology, over 20 years of experience as a practicing physician, and world-class science training, I was frozen and unable to challenge R to rethink his decision. The last few weeks of bearing witness to R’s filial duty toward his sick father had thrown us both back into the Old World values of our youth where patriarchy reigns supreme. As a wife and daughter-in-law, what I had to say under these circumstances paled in significance, even though I understood the risks better than most and I was the one who had to take on the side effects of R’s decision. I stood staring out of the kitchen window into the pitch-black evening darkness and felt myself shrinking. My father-in-law’s fatal illness thrusted us back into the ingrained rhythms of our ancestral DNA where R plays Rama and I, by default, am forced to assume the role of his wife, Sita. 

Sita is the cultural ideal of a woman that permeated my childhood. Sita, the wife of Lord Rama and an avatar of the goddess Lakshmi, accompanied her husband into exile and was then abducted and imprisoned by the evil Ravana. Upon her release, she underwent an ordeal of fire to prove her purity, only to be banished by Rama, in deference to his public’s protests that her captivity had tarred her. The world in which I was raised attached a nobility to a woman who was a Suffering Sita – the good wife who says yes to others, even if it means saying no to herself, over and over. To this day, billions of Hindus all around the world celebrate this ancient union as ideal – a symbol of love and devotion, even though the virtuous Rama was guilty of benign neglect toward Sita: ignoring her undesirable circumstances despite the fact he also held responsibility for them.

When R and I came of age in the early 1990s, it was still acceptable for brown British girls to be coerced into arranged marriages with grooms from the Indian subcontinent. With our “love marriage” (our decision to marry was driven by us, not our parents), R and I made an unwavering commitment to modernity: we lived together before we got married; I did not take his last name; R supported my career aspirations, which meant that, on paper, I would become more educated than him, and the two decades we’d lived in America represented us building a life where we took turns prioritizing careers, housework and childcare. 

Yet, as the years rolled by with us both reaching for the heights of our careers, all while caring for children at home and aging parents abroad, our marriage had periodically been branded with the deep cultural imprint of Ram and Sita’s inequitable relationship. This ancient traumatic rhythm manifested with my claim that, despite doing the lion’s share of work that kept our demanding 21^st-century household running, R did not truly value me. R’s response? He did value me and had no idea what I was fussing about.  This bristling had previously stirred deep discontent in our modern relationship, and here it was again, this time triggered by a global pandemic.

I reached over the Miele stove top to switch off the electricity and cast the pasta pot, now holding a hot, red gelatinous bundle of rigatoni to one side. I felt an oppressive patriarchal force burrowing down through the centuries and forcing me into silence – a force so strong it rendered me illogical. I had the professional expertise to understand the gravity of this situation, yet I felt I didn’t have permission to speak. I sensed the Old World pressures that were, once again, straining my marriage. Then, perhaps due to the months of built up COVID-related existential angst, a moment of clarity: These patriarchal forces were so entrenched they will seep into every aspect of my life forever. I had to draw a line in the sand that represented enough and rid myself of every trace of the Suffering Sita within me. It dawned on me that the only thing that mattered in this moment was that no one else in this family got sick with COVID-19, and I had to do everything in my power to ensure that outcome – even if it meant that R and I would have the biggest fight of our marriage, a conflict powerful enough to sow the seeds of its eventual destruction.

Just then R burst into the kitchen and rushed toward me, sweeping me into a tight hug. Pressed against his chest, I heard him breathing hard. Fighting back tears, he said, “I can’t go into the hospital. Who will perform Dad’s last rights if I get COVID?”

In traditional Hindu culture, the last burial rites of a parent are the responsibility of a son – an assignment grounded in an ancient belief that only a male heir has the power to pave the way for his parent’s soul to reach “moksha,” or heaven. As his father’s only son, R assumed this duty as it lay squarely on his shoulders. On a better day, a day before COVID-19 had wreaked havoc in our lives and world, R and I would have debated such antiquated beliefs and their relevance to our modern lives, but this was not the time for such a discussion. It was my father-in-law’s belief that R should perform his last rites, and in the face of his impending death, nothing else mattered. As I held R tight, I felt relief that he had organically come to the same decision (albeit for different reasons) that moments earlier I was ready to go to battle for. I also felt deep sadness that he had to choose filial duty over his wish to be at his dying father’s bedside.

That night, we were lying in bed, sleep evading both of us. I wrestled with R’s decision. I feared the downstream mental health consequences of such a traumatic choice – would he suffer guilt, depression or a complicated bereavement? I started to second-guess myself. Had I blown the risks of getting infected out of proportion? My insomniac churning sparked a possible solution. My father-in-law at the time was COVID-negative and received only palliative care, so perhaps he could have been transferred to a non-COVID ward? A ward where the risk of exposure to a visitor was slim? This was a more justified risk that R could take, so duty would not rob him of a chance to hold his dying father’s hand.

Early next morning, we called the hospital and asked to speak to the doctor on call. I explained the situation, asking if an accommodation could be made.  The doctor listened patiently, and then in a calm voice, laced with the heaviness of fatigue, reminded me of the gravity of the situation.

“There is no non-COVID ward in this hospital, every ward is now a COVID ward. It’s not a good idea to come to the hospital…you can catch COVID walking down the hallway.”

                        ***

The weekend marked the start of a virtual vigil at my father-in-law’s hospital bedside. Over these hours we slowly accepted our family’s defeat against COVID-19 and let go of any hope for his recovery. We shifted our energies, instead, toward ensuring he has a peaceful death. A Hindu priest delivered a last prayer, via telephone, and religious music played softly in the background as he took a few sips of the Indian holy water (ganga-jal) that my mother-in-law delivered to the ward.

As he was lying in the hospital bed, a reduced version of his former self, struggling to draw each breath, he somehow summoned the strength to listen to our final messages for him. Then, with determination, he shared his last words of advice for his children and grandchildren. When it comes to R’s turn, I mentally predicted what he might say.

“Take care of your mum,” or “You are the man of the house now” – loving reminders of what is expected of R in the years ahead: a formal passing on of the responsibility baton from immigrant father to son.

I imagined R’s response in return, seeing him bravely conjuring up the boldness required to give his dying father the reassurance he needed.

“Don’t worry, Dad, I’ve got this. I’ll take care of everything.”

But then my father-in-law took us by surprise. For a man not known for his mastery of the spoken word, he spoke with poetic lucidity, voicing a single intimate sentence he never explicitly stated to R before.

“You are my good boy, my special boy, I see your face every time I close my eyes and you’ll forever live in my heart.”

R broke down in tears and, because our lives have been intertwined since we were teenagers, I knew what he was feeling. A burden lifted from his shoulders as his father’s deathbed message did not consist of a wish, request or instruction. It was a sentence, without conditions, signaling to R that he was known by his father, that he was seen by him and that, more than the Old World values of duty, respect and honor, pure love was what ultimately defined their bond.

The next day, as the sun shone uncharacteristically bright for a January afternoon in London, my father-in-law peacefully slipped away. COVID-19 may have caused his death, but in his last words to R, he ensured the virus will not leave indelible scars on his son’s psyche. Instead, his dying message provided R with the sustenance he will need to eventually heal from the sudden loss of his father, beautiful words that will, in time, form a bridge transporting us safely from our Old World traumas back to our New World lives.

Shaili Jain, M.D., is an Adjunct Clinical Professor of Psychiatry and Behavioral Sciences at the Stanford University School of Medicine. She is an internationally recognized leader in communicating to the public about trauma and PTSD. Dr. Jain’s acclaimed debut non-fiction trade book, The Unspeakable Mind: Stories of Trauma and Healing from the Frontlines of PTSD Science (Harper, 2019), was nominated for a National Book Award. Her essays and commentaries on trauma and PTSD have been presented by the BBC, CNN, The New York Times, STAT, Newsweek, The Los Angeles Times, TEDx, public radio, and others. 

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.