The first week I moved to Manhattan, I was so excited I couldn’t eat. I lost two pounds and gained a Metrocard, an apartment sublet, and a new internship.
I was supposed to be living at home, working the same internship I’ve had since I was a college freshman—not out of loyalty, but out of love for my father. Each summer, I stayed because I was scared if I left he would be gone by the time I returned. This summer, I was still just as scared, if not more, but I couldn’t stay again.
“I need you to let me do this, Dad,” I said to him the night before I left.
“You’re throwing away a perfectly good internship just to, what, drink and party in New York?” He shook his head, but his voice no longer held the coil of anger that it had before. He just seemed sad.
“I know you think I’m making a mistake, but if that’s true, let me make my mistakes now, when I can still fix them.” I squeezed his hand; he got up and dumped his mug in the sink, the clang of metal muffling his footsteps as he left.
The next morning, he woke up early to drive to New York and help me move in. I told him I loved him before he left, like any apology, and he hugged me, hard, and said: “I hope you don’t regret this.”
I didn’t realize it at the time, but I recognize now that he was imploring me to stay not only for his sake, but also for mine. That’s what loving someone with a chronic illness is like: you love her enough you want to protect her from herself.
I was diagnosed on an otherwise ordinary October day. I was seventeen, a senior in high school, when I woke up one morning and fell over. At school, I laughed with my friends about how clumsy I was. By nightfall, I was being diagnosed with Nephrotic syndrome.
I remember that year in two parts: pre-diagnosis and post-recovery. The during is muddled, just a blur of relapses and remissions. My nephrotic syndrome stemmed from minimal change disease, an autoimmune kidney disease with a name that mocked me as my body attacked itself. A primary symptom of the syndrome was swelling; my legs became thick tree stumps zigzagged with scars from where the water had stretched the skin until it broke. My face ballooned until I was barely recognizable.
I became steroid-dependent, unable to taper off the medicine that was slowly eroding my body. The pills also made me immunocompromised, and every time I got sick with a cold I would immediately relapse again, starting a vicious cycle: more medication, a cold, relapse, more medication. Specialists started describing me as a “unique” case, an “interesting” file. No one wants to be interesting in medicine.
I relapsed seven times in eight months. My parents spent every moment researching, trying to find answers, but I was furious at their helplessness. After each relapse, I spent days sequestered in bed, not talking or eating. During those periods, my father would bring me my dinner in bed, and he would try to feed me as I cried so hard my body shook, threatening to upend the tray. He would cut the vegetables and meat into bite-sized pieces and say: “I promise I will always take care of you.”
I developed steroid-induced glaucoma, cataracts, hyperglycemia, and I started researching topics such as: kidney failure, dialysis, and organ transplant. I stopped wanting to leave my house and became extremely agoraphobic and religious; I prayed each night I would either get my life back or just die.
What stands out to me most keenly from that period of my life isn’t my sadness, or fear, or anger; it’s my loneliness—the unrelenting black hole of it. I went months without talking to anyone other than my doctors and my parents. In the thick of my disease, I thought I was being punished, so maybe if God saw how hard I was trying, he would make me better. I kept a glass jar by my bed, and every night I would write something I was thankful for, slips of paper littered with phrases such as “Finally in remission!” and “Doctor says things are looking up,” slips that eventually morphed into “Woke up this morning and forgot I was sick for a minute,” and “I guess I still haven’t died yet.”
Time became largely irrelevant. A perpetual ellipsis severed only by my first stable remission. It was May by then, and I had returned to school. I was rejected from almost every university that I applied to, but I no longer wanted to graduate salutatorian, to go to Yale, to write books. I wasn’t even sure I needed to graduate high school; I just wanted to be healthy. During my last episode, when my labs started to drop, and a relapse seemed imminent, I called my nephrologist from my car and sobbed, “I just want to be a normal kid,” over and over again. He promised me we would get there and wrote letters to the insurance company when they refused to cover my experimental treatment. Three infusions of Rituxan later, I went into remission.
I graduated. I went to college. I transferred colleges. And then my father almost died.
It was May of my freshman year, around the time I would have celebrated one year in remission, when my father was admitted to the ER for a combination of pulmonary and cardiovascular issues. I found out from his doctor, who called my house to ask if my father had gotten to the emergency room yet.
“What? Why would he be in the emergency room?” I was absentmindedly watering a plant; I thought the doctor was confused.
There was a pause, and then he said: “Whom am I speaking to?”
I put down the watering can. “Sabrina...his daughter.”
The pause was longer this time. “They didn’t tell you? We sent your father to the emergency room because we’re worried he might have had a heart attack.”
I can’t remember what I said after that. It might have been thank you for telling me. I didn’t finish watering the rest of the plants.
The first time I saw my father in the ICU I cried. He was so fragile; I couldn’t reconcile the man in front of me with the man who had helped buoy me through the worst moments of my illness. He looked like he had shrunk overnight, his legs pale and brittle underneath his hospital gown—or maybe I just hadn’t been paying attention all this time, so caught up in myself.
He was put on blood thinners, beta blockers, so many medications that each of his appointments was punctuated by long stretches of time filled with the clickclickclick of the technician scrambling to type in all the convoluted prescription names. By the time his aortic dissection and pulmonary embolism were stable, he was diagnosed with renal cell carcinoma––in addition to his pre-existing hypertension and diabetes.
I thought being a former patient would help me process my grief over my father’s disintegrating health; but I think my own experiences made watching my father’s much worse––seeing him grow progressively weaker reminded me of my mortality, and I wonder if, years ago, watching me fall ill reminded him of his.
At some point over the course of my father’s illness, I learned the comfort in avoidance: I stopped responding to his texts, I declined his phone calls, I created excuses for why I couldn’t take the forty-five-minute train ride home. Bogged down by an overwhelming sense of guilt, I found little ways to show my appreciation, and then spent hours convincing myself that they compensated for my behavior. I made a photo of us the background image on my laptop and phone, but I would also go days without talking to him at all. This was the absurdity of proactive mourning: I loved him so much that he terrified me.
In the month leading up to his partial nephrectomy, I sometimes snuck into his room late at night, just to make sure he was still breathing. Before they rolled him into surgery, he squeezed my hand and told me not to cry.
“Don’t worry, I can’t die yet.” He was smiling, but his face was pallid under the fluorescent lighting. “I still have so much of your life to see.” He turned to his surgeon. “You hear that, doctor? I gotta live to watch my only kid graduate.”
The nurses and doctor chuckled, and I wanted badly to give him the same reassurance—I will always take care of you—he had given me, but I was terrified of saying the wrong thing, so I said nothing at all.
When his postoperative scans showed he was cancer-free, I promised I’d try harder. A few months later, I ran away to New York.
In the spring semester of my junior year, after I got my new internship offer, my father and I had explosive arguments that left me in tears. Our attempts at reconciliation were bookended by fights so vicious my mother would leave the room.
“Don’t you want me to be happy?” I yelled, exasperated over wrangling the same accusations over and over.
He started to laugh. “Happy? Do you think when we immigrated to this country, when we were so poor that we were peddling shoes on the sidewalk, do you think we thought about happiness?” He shook his head in disgust. “Give me one good reason to fund this summer for you, since your paycheck isn’t even enough to live on.”
I didn’t have a good reason, at least not one I could admit to him. What I had, instead, was a deep, foreboding fear: If I stayed, I would never leave. One year would turn into five years, and then ten. Suddenly, I’d be thirty-five and living down the street from my parents, my minivan brimming with the various accoutrements of suburban life: children’s soccer gear, golf cleats, a Costco executive membership card. I would have made the practical choices, ones that made my parents proud, but I’d be swallowed by this dark thought: If this was the rest of my life, why did I even bother getting better?
I gnawed at the skin on my thumb until I tasted blood. “Do you remember when I got sick?” He snorted—it was a line I had overused throughout the years—but I continued, “Don’t you think I deserve the chance to figure out what I want?” I saw his hands tighten on the steering wheel. “Can’t you give me that?”
Even back then, when I was steeped in self-indulgence, I knew he was right; it made no sense to go. I would be taking a pay cut and thrusting myself into an industry where I surely wouldn’t end up with a full-time offer. I could have just lived at home, saved money, worked at a company that for years welcomed me with open arms. I could have spent more time with my father. Why did I fight so hard to leave? When I told my parents that I needed freedom, the chance to grow up away from them, what was I really saying? That I needed to get away from the two people who loved me most in the world? Who had never stopped believing I would get better, even when I didn’t believe it myself?
I left because I was scared, because being around my father sometimes feels like loving a ticking bomb. And I did feel trapped by my parent’s expectations, and their disappointment; I wanted to be a writer, but they wanted me to go to law school. I thought because I had fought an illness I deserved the chance to pursue my dreams, but they wanted to know that I would be able to support myself when they were gone.
Every day that I spend away from my father gives me a clearer understanding of what it means to love a patient. I see now that what I had interpreted as his emotional blackmail—phone calls littered with phrases such as: “I’m going to die and then you’ll regret this,” and “You don’t care about me at all, do you?”—was really his fear. I recognize terror as our commonality, the thread stitching together our actions: I fear wasting what feels like my second chance at life, and my father fears leaving me alone in this world when he’s not sure I know how to fend for myself.
I try to convince myself that I deserve the chance—the choice—to be selfish. I’ve been in remission for three years now, but being a patient is part of my identity. I live with a perpetual fear of relapse; I just want the opportunity to do what I think will make me happy. But I struggle to explain why my happiness has to be the inverse of my father’s, why it has to feel shameful. When I’m feeling particularly guilty in New York—on nights with vodka-blurred edges, with loud music and strangers on bar stools, with laughter so uninhibited it drowns out my self-doubt—I want to believe I earned this, the ability to be stupid and careless and young. But I’m not sure that’s true: If I woke up tomorrow and something had happened to my father, could I really live with myself knowing that I was busy frolicking around New York?
What strikes me now as the most ridiculous aspect of my reasoning is the way I phrased it—why did I bother getting better—as if I had any choice in the matters of life and death at all.
It’s been two months since I moved to the city, and every morning I wake up and clock into an internship where I feel inept, dressed in business-casual clothes that feel like costumes. I’m plagued by a sense of only “playing adult,” unsure of whether I’m putting up a decent show. I struggle with what I want and what I should want. Who am I? A patient? The daughter of a patient? I worry about my dad’s health, but I still don’t call him enough. On the days that I remember to call my parents, I tell them how much I love it here, not to hurt them, but because I don’t want them to worry over my regret, and my shame.
All my peers seem to be developing a blueprint of their futures, while I can’t figure out what I’m good at, or even what I want to be good at. I spend my weekends getting drunk and bombarding strangers at bars with questions like, Does it get better? Are you lonely here? Do you think you made the right choices? I feel like a ghost roaming around, watching everything move too fast. I write to my professors often, emails that are permeated with trepidation: Am I doing the right thing? Am I on the right track? I think about my dad every day.
I live in Kip’s Bay, and late at night, I sometimes wander outside and stare at the East River, watch the water glinting off the 59th Street Bridge. On those nights, when it’s too dark to see the questions that plague me during the day, I’m struck by the beauty of it all, of being alive and living on an earth where I get to be healthy and my father gets to live. On those nights, I pick up my phone and call my dad. I tell him I love him, and we exchange inquiries about each other’s health. On those nights, I think maybe that’s all we really need to be: alive.