Before my diagnosis, the phrase “carpe diem” had always struck me as a cliché, something you heard in that sappy Robin Williams movie or in college graduation speeches. Now, as the transplant neared, each day felt like a carpe diem countdown. I felt a need to make the most out of every single thing I did. Every day, every hour, was invaluable and not to be wasted. Time stalked me like prey. I wasn’t the only one to feel this way. For the first time ever, my mother arranged to have a family portrait taken by a professional photographer. Will and my closest friends threw me a party that felt part “godspeed,” part “goodbye.” And my father started saying “je t’aime” to me each night before I went to bed. I had always felt fiercely loved by my father, but it was the first time in my life I could remember hearing him say it out loud.
I was moved by all these gestures, but I was a bit frightened, too. When you are facing the possibility of imminent death, people treat you differently: Their gaze lingers, recording each mole, tracing the shape of your lips, noting the exact shade of your eyes, as if they are painting a portrait of you to hang in memory’s gallery. They take dozens of pictures and videos of you on their phones, trying to freeze-frame time, to bottle the sound of your laugh, to immortalize meaningful moments that can later be revisited in a memory cloud. All of this attention can feel like you are being memorialized while you are still alive.
But what scared me more than the transplant, more than the debilitating side effects that came with it, more than the possibility of death itself, was the thought of being remembered as someone else’s sad story of unmet potential. My most significant accomplishments as an adult had been fetching coffees and making photocopies as a paralegal, and doing my best to fight a disease I’d never wanted in the first place. I hadn’t done anything I was proud of yet. I had spent my twenty-three years on this planet preparing for a life: pulling all-nighters so that I could get the grades to receive a scholarship to a good college and, one day, have a career of my choosing; learning to cook for the dinner parties I told myself I’d throw one day; saving up my paychecks to be able to go on a long trip somewhere; talking about all the writing I wanted to do without ever actually working up the courage to put any of my writing out into the world. I knew it was likely too late for most of these things, but I was determined to seize the days I had left. Facing my mortality had stripped away any concerns about being cool, and it did not feel embarrassing or too earnest to say that I hoped to make a difference. I wanted, in my own way, however small, to contribute something to the world. To leave more than I took.
After almost one year spent in isolation, shuttling between the hospital and my parents’ house in Saratoga, I was done hiding. “It is always what is under pressure in us, especially under pressure of concealment—that explodes in poetry,” Adrienne Rich wrote. I wanted to understand what had happened to me, to excavate its meaning on my own terms. I wanted the last word to be mine.
So, I decided to start a blog.
The idea was to create some kind of platform for a population of people who are too often misunderstood and overlooked: young adults with cancer. I didn’t know what this would look like yet but I began to document my time in bed and in the hospital. With my parents’ support and Will’s help, I got to work. I enlisted a photographer friend from high school to take pictures; I got ahold of a cheap video camera and spent hours shooting and editing little videos; I pored over YouTube tutorials, teaching myself how to build a basic website; and finally, in preparation for the blog’s big launch, I drafted my first posts, culling from some of the writing I’d done for my Hundred-Day Project.
I took myself and my new blog very seriously. “I’m on a deadline,” I would tell the nurses when they came around to check on me or to adjust my medications. Of course, these deadlines were entirely self-imposed, but it felt so good to have a job to do—to have a purpose other than just being a patient.
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When the blog went live in early 2012, my expectations were low. I was pretty sure that my readership would consist of only Will and my parents, possibly my grandmother. But to my surprise my first post began to be shared, not only by relatives but also by friends, classmates, and even my college journalism professor, who wrote to say that he was impressed, and that he planned to send it around to some colleagues. When I woke up the next day, I discovered that The Huffington Post had featured my first blog entry, titled “Good Afternoon, You Have Cancer,” on the home page: “Today, as I prepare for a bone marrow transplant, I’ve learned that my biggest challenge might not be physical,” I had written. “It is enduring the boredom, despair, and isolation of being sick and confined to a bed for an indeterminate length of time.” Within hours, my humble website had thousands of views. I posted a second entry, this one more tongue-in-cheek, called “10 Things Not to Say to a Cancer Patient,” with an etiquette guide for the friends of those living with life-threatening illness. Soon, I was getting letters from people who were not tied to me by blood or acquaintance—perfect strangers from all over the map.
One of the first letters I received was from a young man by the nickname of Lil’ GQ, who wanted me to know that my story had touched, as he put it, a death row convict heart. But the real reason he was writing was because, in a strange way, he related to my predicament. I know that our situations are different, he wrote in flowery cursive, but the threat of death lurks in both of our shadows. While Lil’ GQ had never been sick, he, too, was stuck in limbo, awaiting the news of his fate.
As I lay in my hospital bed in New York City reading and rereading his letter, it was surreal to imagine Lil’ GQ in his cell fifteen hundred miles away in Texas. There was so much I wanted to ask him, so much I wanted to know. I wondered if he, like me, ever plotted his escape. I wanted to know if his fear of death was the same as my fear of death. Or if it felt different to await your execution, not at the hands of a disease, but at those of uniformed guards sanctioned by the law. I was hungry for more details about Lil’ GQ’s past—about how he’d ended up on death row. I was curious about what he did to pass the time. How do you wake up each day, how do you continue on when the future spells uncertainty, or worse, certain doom?
I made a couple of stabs at a response, but I couldn’t write him back. The blog consumed what little energy I had. Too weak to sit at a desk, I wrote from bed, propped up by a mountain of pillows. The chemo had made my thoughts slow and sticky, and I worked haltingly, in ten-minute bursts staggered throughout each day. For extra energy, I slurped iced cappuccinos. The syrupy slush cooled my inflamed mouth and the caffeine helped keep me somewhat lucid. When I was too sick to type, I dictated out loud to Will, who sat at the foot of my bed, tapping away on my laptop, giving me feedback and encouragement. It was arduous, exhausting, satisfying work.
Two weeks later, as I waited to get a final biopsy before beginning the transplant process, an email arrived. It was from an editor at The New York Times who had read my blog and wanted to know if I’d like to write an essay for the paper. The thought of a byline sent a charge of excitement through my body, and I suddenly wanted to jump up and down and do cartwheels in my hospital room. I wrote an email back and included my phone number, and to my surprise the editor called me right away.
“Interested?” the editor asked.
“Possibly,” I bluffed.
I had never been published in a real newspaper before. I had never worked with an editor. I had been rejected from the creative writing program freshman year of college, and, other than the two journalism classes I’d taken as electives, I had never formally studied writing at all. But during those many hours of writing in my journal and dreaming up my blog, an idea kept percolating in my mind, growing more insistent, until I could think of nothing else. I ached to find language for the mysterious happenings in my bones, for those endless months of lying in bed, forced into a state of solitary reflection, for all those humiliations and flirt
ations with the fatal, for the experience of witnessing the serial deaths of fellow patients, as well as parts of myself. In truth, I had no idea what I was doing and I certainly didn’t know if I was well enough to pull it off. But I knew I had almost nothing to lose. Cancer made me brazen.
“What I’d really love to write is a weekly column about the experience of illness in youth,” I said.
Pitching a column to The New York Times as an unpublished twenty-three-year-old was more than a little presumptuous. I understood that instead of funneling what little energy I had into writing, I should have been resting my body, preparing for transplant, and spending time with my family. I should have paused to ask myself how sharing the most difficult moments of my life in real time might impact my health, my future, my loved ones. But there I was, pacing around the room on my cellphone in my blue cotton gown as I made my case to the editor, explaining how I planned to harness all that had happened to me since my diagnosis, and to translate these experiences into thousand-word weekly installments. Maybe the column could be accompanied by a video series, I proposed, explaining that I knew firsthand how hard it could be to read when ill and that I wanted the project to be as inclusive as possible.
“Okay,” the editor replied. “We’ll try the column for a couple of installments and see how it goes. I’ll connect you to one of our filmmakers on staff, so that you can discuss the possibility of a video series. Let me know when you finish a draft of the first column.”
I hung up the phone and burst into tears.
“What’s wrong?” my mother asked, alarmed.
“I think I just got a job.”
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“Write,” instructs Annie Dillard, “as if you were dying.” We are all terminal patients on this earth—the mystery is not “if” but “when” death appears in the plotline. With my transplant date looming, her words rang loudly. My mortality shadowed each breath, each step that I took, more present now than it had ever been. A manic energy hummed through me. I worked around the clock for a month to draft thirteen columns before I entered the transplant unit, fueled by the knowledge that it was going to be a long time before I was well enough to write or walk or do much of anything else again. What would you write about if you knew you might die soon? Bent over my laptop in bed, I traveled to where the silence was in my life. I wrote about my infertility and how no one had warned me of it. About learning to navigate our absurd healthcare system. About what it meant to fall in love while falling sick, and how we talk—or don’t talk—about dying. I wrote about guilt. I also wrote a will in case I fell on the wrong side of the transplant odds. To this day, I’ve never been more prolific. Death can be a great motivator.
On March 29, 2012, my column and an accompanying video series—called “Life, Interrupted”—was scheduled to make its debut. Just a few days after that I would receive the bone marrow transplant. The confluence of these impending milestones was dizzying: a dream and a nightmare dancing the tango.
15
ON OPPOSITE ENDS OF A TELESCOPE
ON MY FIRST night in the bone marrow transplant unit, I lay in my hospital bed, eyes wide, under a halo of hanging IV bags. My fear was alive. I could smell its wet fur in the room and feel the chuffing of its breath, hot on my skin. Folding back the blankets, I stepped out of bed and over the thick vine of tubes and wires that connected me to various machines. Dropping to my hands and knees as my late pal Yehya had done—careful not to bang my head—I pressed my forehead to the cool linoleum. With a father who had been raised Muslim and a mother who had been raised Catholic, I’d grown up with a mishmash of beliefs and traditions. When we were with our Swiss side of the family, we celebrated Easter and went to Mass; when we were with our Tunisian family, we fasted during Ramadan and slaughtered a lamb on Eid; and when we were in the United States, we retained a fairly secular existence, with the exception of Christmas. While I’d always had a great interest in religion, I’d never truly practiced one myself. I didn’t know how to pray, or to whom, but this much was clear to me: I needed all the help I could get.
What was it that I was asking for, exactly? How many other desperate folks had tried bargaining with a higher power in this same hospital room? I was beginning to feel dizzy, my emaciated legs trembling under the weight of my body. Heaving myself up, I grabbed a glow-in-the-dark pen a friend had gifted me and made my way to the wall. I had no poetry, no eloquent manifesto to impart. Just one simple, animal desire: Let me live, I scrawled in tiny letters—part prayer, part plea.
The intensity of the moment was heightened by my new surroundings. After researching the top transplant units, I had decided to transfer my care from Mount Sinai to Memorial Sloan Kettering Cancer Center, which was considered the best transplant unit in the city, if not the country. Still, I fretted over the decision. Shopping for bone marrow transplant units had been a bit like visiting colleges—other than the glossy brochures and swift meet and greets, only time would tell if I’d made the right choice. In Sloan Kettering’s transplant unit, with all of its beeping monitors, futuristic equipment, and unfamiliar faces in surgical gowns and masks, I felt as if I’d boarded an alien spaceship. I missed Dr. Holland and my medical team—our inside jokes, their nerdy brilliance and blazing compassion. Over the last year, my doctors and nurses had come to feel like extended family. “Promise you’ll come back to visit me once you’re better,” Younique had told me when we said goodbye.
The last week had been full of goodbyes. I spent my few final days before entering the transplant unit in Saratoga. I had packed my red suitcase in preparation for the eight-week-long hospital stay, adding, at the last minute, Sleepy, the stuffed dog I’d cherished as a kid. I hadn’t been able to sleep on the eve of my departure, so I got up at five o’clock and wandered the house. I took a last look at my childhood bedroom, bidding goodbye to those pink walls, bookshelves, and old favorite posters. Running a hand over the wooden nape of my bass, I said goodbye to it, too. I said goodbye to the dining room table, where we’d shared countless meals as a family through the years, and to the frozen flower beds of my mother’s garden. Will and my parents came down for breakfast and loaded our bags into the car. I felt a sinking sadness as the minivan pulled away from the house, wondering if I would ever return. For the person facing death, mourning begins in the present tense, in a series of private, preemptive goodbyes that take place long before the body’s last breath.
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In the transplant unit, I was surrounded by people who were concerned, first and foremost, with what I had—not necessarily who I was. Doctors and nurses in masks stood over my hospital bed, peering down at me, discussing me as if I weren’t in the room. They gave the Patient a hospital gown. The Patient was talked at, looked at, probed, prodded, and whispered about. They had a singular goal—to cure the Patient so she could go back to being herself. In all this lay a strange irony: It had only been a year since my diagnosis, but I could hardly remember what being myself was like.
Over the course of the next week, my immune system was blasted with twenty infusions of heavy-duty chemotherapy—more chemo than I’d had in the year since my diagnosis. During all this, I kept my hospital room neat. I had always liked organizing and arranging, but my tidiness became almost obsessive-compulsive as I stacked my books, pills, and water bottles into ruler-straight rows on my bedside table. I refused to don a hospital gown, wearing instead my own pajamas, robe, and sheepskin slippers. Each morning I rose from bed and moved to the fold-out couch in my hospital room that I made up with fresh sheets and blankets. I had brought a portable speaker from home, and as I revised my New York Times columns and responded to emails, I blasted James Brown or Bach to drone out the sounds of the hospital. I worked furiously, eager to get as much as I could done before the side effects of the chemo intensified. Inevitably they did, so as I typed, I kept a yellow vomit bucket tucked under one arm.
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On the morning of the transplant—Day Zero, as it’s called—my parents and Will arrived at my hospital room wearing yellow surgical gowns and blue face masks. My brother followed, with his usual greeting. “Salut, Suleikemia,” he said, leaning over to give me a fist bump through our latex gloves. I laughed, then replied, “Hope I never have to hear that again.” A few minutes later, half a dozen doctors and nurses filed into the room, and what levity had filled the air dissipated.
Given all the anticipation, the actual procedure was somewhat anticlimactic. Everyone stood solemnly in two rows, flanking my bed like a regiment of soldiers, watching as my brother’s stem cells dripped from a hanging IV bag. I felt calm as the last drops emptied into my veins, perhaps because I was not there, not really. I closed my eyes and began imagining myself across an ocean, on another continent, sitting in a café with Will in Paris, then strolling down the streets of Tunis. My body was strong, my hair long again.
Within minutes it was over, and everyone filed back out of the room to let me rest.
* * *
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The hardest part, my medical team warned me, were the days and weeks ahead, as I waited for Adam’s cells to engraft in my marrow. I was put back on “isolation” status. Precautions in the transplant unit were far more extreme than anything I’d experienced at Mount Sinai. A specialized vent in my room filtered out any impurities in the air. All of my food was nuked beyond recognition to kill off any potential germs. Anyone who entered my room had to wash their hands and to dress up in the equivalent of a hazmat suit—plastic gloves, a surgical gown, a face mask, and booties over their shoes. A kiss, a handshake, fresh fruits and vegetables, the common cold or a paper cut—these were all things that could kill me until my immune system began to work again. Even flowers were forbidden, though this seemed presumptuous to announce to friends and relatives, so bouquet deliveries gathered, unopened, outside my door.
Between Two Kingdoms Page 12
