If his parents felt this way, they didn’t show it. They pulled up to the house, all booming laughter and bear hugs. Within minutes, his father, Sean, a towering Irishman with a white mustache and twinkling blue eyes, pulled me aside. “My son is a better man since he met you,” he told me. “I want to thank you for whatever it is you’ve done to him.” His mother, Karen, a radiant blond hippie who wore linen dresses and colorful beaded jewelry, shared her son’s knack for making everyone in his radius feel good. She told me over and over how beautiful and bold I looked with my bald head. “You should keep your hair short once you’re better,” she said.
Together, our families spent the weekend exploring Saratoga. We strolled through the rose gardens of Yaddo, a famous artists’ colony on the outskirts of town. We went to the racetrack and made two-dollar bets on the horses with the best names. (Somehow we lost every time.) In the evenings, we feasted in the backyard under the vine-covered lattice that my mother had decorated with string lights and paper lanterns. Our parents got along so well that it was hard to get a word in at dinner. Sean, a journalist and documentary filmmaker who had covered the war in Iraq, talked Middle East politics with my father, while our mothers bonded over their love of the arts. Will and I exchanged furtive winks and eye rolls across the table as our parents droned on.
On the last day of their visit, we all walked to the farmers market in town. The sun beat down on my wide-brimmed blue straw hat. I struggled to keep up as they wandered from stall to stall, sampling homemade blackberry preserves, olives, and cheese. Excusing myself, I wandered to a picnic table, where I took a seat in the shade of a tree. The twang of a fiddle and the shrieks of children chasing one another across the grass whirled around me, making me dizzy. I fanned myself with the hat, wishing I could teleport back to the quiet and cool of my bed.
When it was time for us to head home, I lagged behind, trying to conceal a limp. I didn’t want to ruin what had otherwise been a perfect weekend, but by the time we reached the house, my limbs trembled and my sundress was soaked in sweat. I hugged Will’s parents goodbye, promising to visit them in California when I was well enough, and then retreated into the house. “How are you feeling?” my parents asked when I hadn’t budged from the couch for several hours.
“All good,” I insisted, clenching my teeth. A dull, aching pain pulsed between my legs like a heartbeat. I was too embarrassed to explain its location—to say to my mother, or to my old-fashioned, bow-tie-wearing male doctor, or to anyone else, for that matter: My hoo-ha hurts, or some other anatomically vague description. I hoped the pain would go away on its own. But a few days later, I could no longer walk at all. As Will and my family sat down to dinner, I lay on the couch, my teeth chattering feverishly. When my mother took my temperature, the thermometer read 101. “That’s it, we’re going to the hospital,” she ordered.
My mother drove, and Will sat next to me in the backseat, cradling my head in his lap, as we sped down the black highway. Every half hour or so Will checked my temperature, which continued to rise. My mother accelerated, her brow taut with worry. Three hours later, by the time we reached the Tappan Zee Bridge that crossed over the river toward Manhattan, she was going twenty miles above the speed limit and I had a fever of 104.
It was a Sunday night in the emergency room at Mount Sinai. The waiting area was packed, people pacing by the vending machines, some slumped half-asleep in plastic chairs or clutching bloodied appendages wrapped in gauze, mothers cradling wailing babies, diabetics hobbling on swollen feet. Everyone was waiting for the gatekeepers—the intake nurses and receptionists—to call their name. Triage, the process by which medical experts determine who gets seen first, can elicit survival-of-the-fittest impulses. Everyone feels their emergency should be the priority, and to have your needs, let alone your kid’s needs, ranked among those of others can instill a sense of panic. Crowded emergency rooms do not bring out the best in people.
“My daughter has leukemia and a very high fever,” my usually graceful mother snarled at the receptionist, forty-five minutes after we showed up. “She is severely immunocompromised and if you make her wait any longer you will have blood on your hands.” Her threat worked, and for a brief moment, we felt victorious as a nurse came to collect us. But on the other side of the emergency room’s swinging stainless steel doors, the chaos was even greater. Gurneys covered every square inch of the floor. Patients cried and moaned, some wailing for help. A woman in a wheelchair with a feral, unfocused gaze ranted at no one in particular, claiming that she had been poisoned by her co-workers.
There was nowhere to go, and barely any room for Will and my mother to stand. I remember looking at Will and thinking he seemed overwhelmed. My mother must have thought the same thing, and suggested he take a break if he needed one. “Yeah, I guess there’s not much point in all three of us being here,” Will said. “I might go meet a friend for a drink.” A few minutes later he was gone.
I was placed in a bed an arm’s length from a young man with matted dreadlocks. He lay motionless with his eyes closed, his soiled clothing making a sharp contrast against the fitted sheet of the gurney. A doctor whisked a curtain closed between us for privacy, but I could still hear every word of their conversation. Over the next few minutes, I learned the young man had AIDS and that he had a hemoglobin count of 3.0.
“Do you want a blood transfusion?” the doctor asked.
“No,” the young man mumbled.
“Then you realize you’re going to die, right?”
“Okay.”
Not long after, a hospital worker came around to distribute sandwiches to the patients. The young man was too weak to hold his sandwich and it fell to the ground between our beds, lettuce and slices of pale deli meat splaying across the linoleum. “Is he all right? Someone needs to help him,” I cried out to my mother. That’s the last thing I remember before my eyes rolled back.
* * *
—
The next twelve hours unfolded in a series of feverish blackouts punctuated by brief pinpricks of fluorescent light.
Frame One: I woke up to a trio of doctors peering between my legs with flashlights. My face flushed with humiliation. I kept trying to push my knees together, but a gloved hand forced them apart. “Small cut in the inner labia,” said a voice from behind a face mask. “Infection, possible sepsis,” said another. “Let me get a look?” asked a third. The skin around the cut, they said, was necrotic.
Frame Two: “Where am I?” I asked, panicking. The steel mouth of an elevator yawned open onto a floor of the hospital I didn’t recognize. I was wheeled into a small airless white cube of a room with hazy orange overheads. A nurse explained that I had been admitted to the geriatric unit. The hospital was at full capacity, and I would have to spend the night here until a room opened up in oncology. This struck me as hilarious—indeed, my body felt twenty-three going on eighty—but I didn’t have the energy to explain to anyone why I was cackling, as if someone had delivered a particularly excellent joke.
Frame Three: I’m so cold, I’m so cold, I’m so cold, I repeated to my mother, but with each blanket she layered over me, the colder I felt. Nothing could warm me. My teeth clacked violently and I began to shiver uncontrollably. “Can we get a doctor in here?” someone shouted. Later, I’d learn I was having something called a “neutropenic fever,” meaning I had almost no infection-fighting cells left to do battle for me.
Frame Four: My temperature shot up and up and up until the thermometer read 105.8. When I tried to speak, my words came out in garbled, foreign tongues. My body, seized by rigors, shook and soiled itself. Will appeared in the doorway just as a nurse was attempting to wedge a bedpan beneath my naked flanks. “Tell him to wait outside,” I moaned to my mother, suddenly coherent, as I covered my face with my hands.
Frame Five: My usually smiling oncologist, Dr. Holland, was not smiling when he showed up. “Call your husband and tell h
im to come to the hospital,” I overheard him tell my mother. It was the middle of the night, my father was back home in Saratoga, a three-and-a-half-hour drive away. “Can it wait until morning?” my mother said. “I don’t want to frighten him.” Dr. Holland put his hand on her shoulder and looked her square in the eye. “Anne. Call your husband. This could go either way.”
* * *
—
When I came to the next day, my eyes rolled wildly around the room as I tried to piece together where I was and what had happened. My parents sat next to my bed, looking several decades older. A nurse leaned over me, handing me a paper cup with an oxycodone pill. Within minutes, I was retching into the plastic basin by the hospital bed. The drugs and the realization that I was alive crashed into me like a freight train, my relief soaring across the boundary into euphoria.
The rooms were bigger and nicer in the geriatric unit than those in oncology. I liked it here, except for the nurse with the bottle-blond hair who talked too much. “I used to work in oncology,” she said as she lodged the silver tip of a thermometer under my tongue. “I remember a girl named Joanie. She was a sweet girl, around your age. Every time she came in with a new infection, I wanted to cry. When she died, it was just too sad. Just looking at you makes me sad, makes me think of Joanie. So now I work here, in geriatrics.”
Illness had made me good at separating my scripts. There were the words I kept in my head—please stop talking, don’t you see we are already so scared—and the words I actually spoke out loud: “Joanie was fortunate to have you as a nurse.”
That night, Will arrived to take over for my parents. He stretched out awkwardly in the reclining chair next to my bed, covering himself with a thin cotton blanket. The geriatric unit was all out of visitor’s cots. Tonight, like so many other nights, he would sacrifice comfort for closeness.
“I think we should get married,” I said, out of nowhere, the oxy making my tongue a little too limber. I worried that if we waited, we’d never get the chance.
“I’m all in,” Will replied without missing a beat.
We stayed up late into the night excitedly ironing out the logistics, the invite list and which of my musician friends we would ask to perform. I called my two closest friends from college, Lizzie and Mara, who jumped into action, offering their help. Lizzie and her mother would take Will ring shopping in the diamond district; Mara volunteered her family’s home as the venue for the ceremony. It would be a small wedding, a simple autumn shindig in the backyard, with a handful of our closest friends and family. Barring more emergency hospitalizations, we hoped to have it soon—ideally in the next few weeks.
* * *
—
A few days later, a room opened up in oncology and I was transferred upstairs. Just three months earlier, the oncology unit had felt like a foreign country; now, perversely, I felt at home among the chorus of beeping IV monitors and the bald-headed patients. I belonged. When I saw Younique we greeted each other like girlfriends reuniting after a long spell apart. “Why hello, Miss Suleika! I heard you were back. How are you and that fine man of yours?”
“Getting married,” I gushed.
I asked how my friends from the floor were faring. Younique sat on the edge of my bed, smoothing a blanket over me with gentle hands. Yehya was gone—“No, not back to Algeria,” she corrected me. He had died in the room with the beautiful park views, his wife by his side. As for Dennis, he’d been making progress toward transplant until, one afternoon, his organs started to shut down in swift succession. Despite the doctors’ best efforts, they hadn’t been able to resuscitate him. No one ever came to claim his body.
Younique rubbed my back as I tried to process the news. All I could think was, I’m next.
11
STUCK
I’VE ALWAYS KEPT a journal. The bookcase in my childhood bedroom is filled with dozens of colorful notebooks, each one detailing a new chapter in my life. The pages read like conversations with myself, expressed in thick, swooping pen strokes: fever-dream visions for the future, lies about late-night adventures I never took but wished I had, thinly veiled autobiographical short stories driven by aspirational female protagonists, bad poetry, and lists, always lists—of dos, don’ts, and dreams. My twelve-year-old self had different types of conversations from the ones I had at sixteen, or at twenty. But they all shared something in common: They were looking ahead.
With mortality in the balance, one of life’s most delicious activities when you’re young—imagining your future—had become a frightening, despair-inducing exercise. The future had once seemed infinite with possibility. Now it was shrouded in doom, a dark space ahead filled only with the promise of more poisonous treatments and terrifying unknowns. Thinking about the past stirred a nostalgia I preferred not to dwell on, a painful reminder of all I had lost, was losing: my friends; my youth; my fertility; my hair; the “milestone necklace” my parents had given me on my first day of chemo, which had gone missing somewhere in transit between the hospital and home; my mind, as the chemo made me cloudy and slow; my faith that I would ever make it to transplant.
* * *
—
Living with a life-threatening illness turned me into a second-class citizen in the land of time. My days were a slow emergency, my life dwindling to four white walls, a hospital bed, and fluorescent lights, my body punctured by tubes and wires tethering me to various monitors and my IV pole. The world outside my window seemed farther and farther away, my field of vision shrinking to a tiny pinpoint. Time was a waiting room—waiting for doctors, waiting for blood transfusions and test results, waiting for better days. I tried to focus on the preciousness of the present: the moments when I was well enough to walk around the oncology unit with my parents, the sound of Will’s voice as he read out loud to me each night before bed, the weekends when my brother came to visit from college—all of us together now, while it was still possible. But try as I might, I couldn’t help but feel an incipient grief and guilt as my thoughts turned, inevitably, to what would happen to Will and my family if I didn’t survive.
The infection had set me back by a couple of weeks, but the clinical trial was slated to begin the moment my doctors deemed me strong enough. I was one of 135 patients in the United States who were enrolled in the trial. The first nine days of each month I would receive a combination of two potent chemo drugs, azacitidine and vorinostat, and then I’d have roughly two weeks off to recover, before beginning the next cycle. The trial would be outpatient, meaning that when I wasn’t in the city for doctors’ appointments or hospitalized for complications, I would get to stay at home in Saratoga. The whole process would take six months—that is, if everything went as planned.
As the leaves on the old maple tree in my parents’ backyard turned a crisp, burnt orange, an uneasiness began to shadow my long hermetic days with Will. He had been my constant companion since my diagnosis and it was his intention to remain so throughout the clinical trial. Selfishly, I loved getting to spend so much time with him. Even though I was bedridden, bald, occasionally incontinent, and living with my parents, the very fact of having a boyfriend gave me a sense of normalcy, of still being young, wanted, even beautiful. But some part of me knew the situation wasn’t sustainable. The land of the sick was no place for anyone to live 24/7; I would never have wished it upon my worst enemy. I knew that if I wanted our relationship to last, I would need to encourage Will to start living his life again.
“Let’s find you a job,” I said gently to him one afternoon. We’d just finished a fifth consecutive game of Scrabble.
He sighed. “I know, I know, I’ve been thinking about that, too. I really could use the income right now. But I don’t want you to feel like you’re alone in this.”
“I’m not getting better, at least not anytime soon,” I said. He acknowledged that he couldn’t put his life on hold indefinitely.
At first, Will searched
for jobs that were close to my parents’ house, but other than bartending or waiting tables in downtown Saratoga, there wasn’t much to choose from. We widened the search radius and when I noticed an opening for an assistant editor position at a big news outlet in Manhattan, I pushed Will to apply. He was hesitant. Saratoga was a three-and-a-half-hour drive away—too far to commute back and forth every day. If he got the job, it would mean being apart during the workweek. When Will expressed concerns about the distance, especially when the trial was coming up and my health was so tenuous, I brushed them off. I wanted him to be happy, but a part of me was living vicariously through him, too. It was a job I would have loved to have had in the alternate reality where my body wasn’t trying to destroy me. So I threw myself into helping him—revising his cover letter, practicing with him for the interview, and finding him a free place to live in a friend’s apartment during the week in the event that he got the job. When the phone rang to say the position was his, I hugged him with all the force left in my frail bird bones. “Things are about to get better for us,” I said, and I meant it.
* * *
—
Not long after, on a brisk autumn morning, we headed to the Saratoga train station, where Will climbed aboard the Ethan Allen Express to begin his first week of work. As he turned to look back at me, I beamed a high-watt smile, then waved at him enthusiastically until the doors closed. Standing on the platform, I watched the wheels rumble along the tracks, heard the train as it whistled around the bend and disappeared. Alone, I felt my excitement dampen, then darken.
Back at my parents’ house, I walked up the stairs to my room, locked the door, and lay flat on my bed, facedown. I remained there immobile for a while, holding my breath. Then I howled into my pillow—a deep, blood-vessel-popping howl of frustration and envy directed at Will, at my friends, at everyone else who was out there starting jobs, taking trips, discovering new things—all unencumbered by illness. That everyone’s lives were starting while mine was over before it had begun seemed unspeakably unfair. When I’d run out of air, lungs burning, I stood up and walked across my room to the small wooden desk pushed up against the windows and flipped open my journal.
Between Two Kingdoms Page 9
