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The tobacco executive's son, I told my maternal grandfather on the phone from the hospital, would receive as a college graduation present a pied-a-terre in any city he wished. He was deciding between Paris and New York. My grandfather—raised in a poor shtetl in Romania, a prisoner of the Iron Guard at 17—let out a distant sigh.
It was the summer of 2001. I'd completed my first year at McGill University in Montreal, Canada and was an in-patient at the National Institutes of Health (NIH) in Washington, D.C. with a mysterious infection that doctors in my hometown of New York City had not been able to treat.
In the emergency room in New York, the doctors had thought it was strep throat; at the NIH, the doctors suspected a different infection was hiding behind the strep throat, something they could not easily see because of the antibiotics administered in the emergency room.
My boyfriend at the time, who had just graduated, was friends with the tobacco scion. He, like me, grew up middle class. He was criss-crossing France and Switzerland with the scion and called me once from an echoing bathroom in the family's Swiss chalet.
He asked me why I was in this hospital, so far from my home; I told him I had always had chronic granulamatous disease, a rare primary immune deficiency that doctors been studying most of my life, but that doctors did not know the reason for my current illness. He asked if it was genetic. I told him no one else in the family had anything similar.
My mother, in my hospital room during the conversation, later praised my diplomacy. She thought he was trying to find out if I would pass it on to my children, which hadn't occurred to me.
My parents grew up in Communist Romania and emigrated to New York City in the 1970s. I grew up in Kensington, Brooklyn, a working class neighborhood that became a neighborhood home to multitudes of diverse immigrants, and now features higher-end businesses like the bakery Der Pioneer.
My parents arrived with nothing, but with help from HIAS, a Jewish American nonprofit organization, they found their first jobs and while in my early childhood we struggled, we became solidly middle class. I chose McGill for Montreal but also because at the time tuition for international students was only $9,000 a year, and between that, a small academic scholarship, and my family's financial situation, I would not need to take out student loans.
At McGill, in addition to the tobacco scion, there was an oil mogul heir, an Egyptian prince, a young woman from Colombia whose father bought her a condo, children of film and music producers and top lawyers and judges, a business major from Toronto who thought it was funny to swipe her credit card through my cleavage.
Interactions with these friends were at times exciting and at times uncomfortable, for example when they wanted to go to expensive restaurants. Still, I had the privilege of studying and not working.
That 2001 summer, after a week in hospital on strong, broad-spectrum antibiotics but no correct diagnosis, I was sent home, seemingly better. I was so happy. I delighted in the creaky hardwood floors, the books, the Oriental rugs—in stark contrast to the beeps of machinery, the harsh light, the squeak of nurses' shoes.
But my lymph nodes swelled up again, pushing on my vocal cords until I sounded like Marge Simpson, and two days later I was back on an airplane, this time for emergency surgery to remove the infection before it hampered my breathing or got into an artery and quickly spread.
Maybe it was because of the free care I received at the NIH that I had the sense that at least some of my fellow patients were not well off. I recall especially a boy with a tired, pinched look. Of course, that could have been the tiredness of the fight to stay alive. In fact he wasn't a boy but a young man of 20, which I didn't realize until he asked me to guess his age. Before my surgery he showed me the many little scars on his neck from lymph node surgeries, to assure me I'd be okay. But it wasn't reassuring.
The surgeon was going to try to spare me this many-scarred look by doing one big incision and taking everything, all the lymph nodes in my neck, out. This was necessary because they feared the bacterial infection would spread quickly, especially if it entered an artery, especially if it traveled to my brain. One lymph node had already died.
The surgery was scheduled to be six hours long but lasted ten. The surgeon took extreme care with the stitches. The numerous risks they'd laid out for me beforehand included becoming a drooling hunchback if they cut the wrong nerves.
In the ICU, I woke up intubated. "Breathe," the nurses would sometimes yell at me, because I'd apparently forgotten to. I would struggle to inhale, until I heard machinery click in my throat. Ministers of all denominations visited my bedside because my mother left religion blank on the intake form, afraid to write Jewish. I held all their hands, desperately afraid for my life, but declined to pray.
"I'm still in the hospital," I wrote in a mass email to friends at the clunky Apple computer in the patient lounge. Morphine had confused me; I'd neglected to write a prior email explaining the situation, which in turn confused my friends. A ward fellow told my mother that next time I was ill, I should go to a tertiary hospital; that I would get better care. Better how, I wondered? It wouldn't be free.
My throat hurt. I lived on soup, jello, and throat lozenges. My paternal grandmother, who survived the Holocaust, ovarian cancer, and breast cancer, hauled a vat of matzo ball soup from her Borough Park apartment onto the B train, onto a Greyhound bus, through swampy mid-Atlantic heat onto the DC Metro, and brought it to me.
I resembled Frankenstein's monster after the surgery. Thank goodness this was before the age of Instagram, though I don't think I would have attempted to document the bloat, the barbed-wire stitches, the horror. By the time the stitches were entirely removed, a true diagnosis was made: actinomyces, a chronic bacterial infection which would ultimately require a year of treatments.
I was relieved there was a plan though dismayed at how long it would be before I was completely better, dismayed that I'd have to learn how to care for the port, inject myself with medication, figure out how to dispose of the needles once back at a school, do physical therapy for six months to get the strength back in my neck.
Lymph drainage massage was prescribed, which I did on the Upper East Side. I could not help but think this was a recovery place for rich women. Pearl earrings in the waiting room. Massage therapists in medical-spa white. On my way there and back, I would pass a sidewalk table for the Coalition for the Homeless and leave a dollar or ask if I could leave a sandwich.
When finally I returned to my family home, the house was less charming. The elderly woman next door had moved to a nursing home; the family that bought her house was gut-renovating it, sending mice to our house. I had to contend with memories of the past month and learn how to manage an IV bag for the rest of the summer, as well as traveling on the subway to many appointments with one in a fanny pack while a device the size of a Gameboy pumped medication into a port two inches below my collar bone.
If the stitch connecting the tube to my skin tugged loose, the flow of blood could suck the tube into my heart. Meanwhile my boyfriend and the tobacco princeling hopped on and off various metro systems of France, evading fare for the thrill of it.
Facing the fragility of my existence at this young age, I realized life was too short to be "the best" at everything as I'd done in high school without understanding why; a pointless goal. Despite being too nauseated by morphine to physically write, I knew that summer that I wanted to write, and experience the world as broadly as possible.
After graduation, I went to France to teach English. I thought I'd teach my way around the world, but a tonsillitis scare sent me home to New York, where I could teach, live with family, and write. Writing expanded my life. My illness expanded my life in ways I never expected.
Even after nearly two decades, the image of the tobacco executive's son being bestowed a pied-a-terre is still disgusting to me. During 2001, the contrast between wealth and poverty in both the United States and Canada, the free healthcare I received and the assumption that I could somehow afford more and that that would be "better" would solidify my views that the connections between money and healthcare are a dire symptom of our inability to truly care for each other as a society.
I think now of all the empty pied-a-terres in New York and other international cities, empty places for the super-wealthy to park their assets, nose-bleed skyscrapers, pencil-thin. I pictured him, a handsome Francophone playboy, handsome not unlike young Marlon Brando, smoking. Poor boy. What would his pied-a-terre do for him if he developed lung cancer?
Now, at 40, I am trying my best to juggle care for my body, my brain, and my spirit with care for those around me, without making myself sick. I am fortunate to write at home and to teach writing, mostly remotely. I followed the path I decided upon in 2001.
I am fortunate to have a supportive life partner with a steady job with health insurance. Our toddler is a life-changing force all his own. We find a balance in caring for him, fortunate to have help from family and part-time daycare; we find a balance in caring for ourselves and each other.
That is the constant balance to seek. How can each person do this in their own way? Life is short. What is the point of anything if we don't care for ourselves—and others?
Anca L. Szilágyi is the author of the novel Daughters of the Air (Lanternfish Press, 2017), which Shelf Awareness called "a striking debut from a writer to watch." Her second novel, Dreams Under Glass, released from Lanternfish Press in September. Find her at ancawrites.com or on Twitter @ancawrites.
All views expressed in this article are the author's own.
