“I hear baking can be quite soothing,” the therapist suggested. She lost me there. People were often making such suggestions to me. Hospital volunteers offered a variety of activities to break up the day—knitting and beading, making vision boards and dream catchers. Friends sent me jigsaw puzzles, “adult” coloring books, and board games. But none of these activities felt very me. I’m sick, I wanted to say—not retired or in preschool.
In the end, though, I agreed to try something we called the Hundred-Day Project. I don’t know who came up with it first, but the idea was that my family, Will, and I would each carve out a few minutes to work on a creative project every day for the next hundred days. The project was meant to be a way of organizing our lives around one small act of imagination; with time, it became much more.
For Will’s Hundred-Day Project, he decided to send me daily video dispatches from the outside on everything from the weather to the quality of the pizza in the hospital cafeteria. “Today, I’m reporting live from Central Park,” he said in one. “I’d like to introduce you to my favorite hot dog vendor. Rafiki, say ‘what up’ to Suleika.” I watched and rewatched the videos whenever I felt lonely. I worried sometimes that the distance between us was becoming unbridgeable, but the videos helped me feel connected to him, to the world outside my window.
As for my mother, she decided to paint one small handmade ceramic tile each morning. At the end of the project, she assembled the tiles into a big multicolored mosaic that she hung on the wall of my bedroom. “Suleika’s Shield,” she called it, telling me it had protective powers. She tried to hide her pain in the art, but I wondered if the images, mostly of birds in distress—falling, upside down, beaks open in despair—reflected her own state of mind. Le coeur qui saigne, the heart that bleeds, one tile noted.
For my father’s project, he wrote down 101 childhood memories that he printed and bound into a little book that he gave to me on Christmas morning. It was my first real glimpse into his past. He wrote about his family’s annual spring outings to visit the shrine of the patron saint Sidi Gnaw, in the Matmata caves of Tunisia. He wrote about my great-great-grandmother Oumi ’Ouisha, the town healer, who would send my father to fetch the herbs and desert plants she kept under her bed as she murmured incantations into her patients’ ears. He wrote about the shock he felt as a boy when he first visited the “French beach” on the other side of town, where colonial expats lounged in bikinis and Speedos. “Our women, when they bathed in the sea, which occurred once a year during Awossu, waded knee-deep into the water fully clothed. We called them ‘floating tents.’ ”
One entry haunted me long after I read it. It was the story of my father’s younger sister, Gmar, the one “with the beautiful face.” I had never heard of her—I had never heard anyone in my extended family even utter her name, which means “moon” in Arabic. As I read on, I understood why. Gmar had spent most of her short life in bed, enfeebled by a mysterious disease, until one blazing summer morning when “she expired,” as my father put it. He was four years old when Gmar died, but he could still hear his mother’s wails echoing through the house. He never dared ask her what had ailed Gmar for fear of stirring painful memories. To my knowledge, there was no history of cancer in my father’s family, but finishing the story, I couldn’t help wondering if Gmar and I shared a diagnosis. In a strange way, it was comforting to think that I wasn’t the only one.
As for my Hundred-Day Project, I decided to return to what I had always leaned on in difficult times: keeping a journal. I promised myself that, no matter how sick or exhausted I felt, I would try to jot something down every day, even if it was nothing more than a sentence.
* * *
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People often respond to the news of tragedy with “words fail,” but words did not fail me that day, or the next, or thereafter—they poured out of me, first cautiously, then exuberantly, my mind awakening as if from a long slumber, thoughts tumbling out faster than my pen could keep up. This was different from any kind of writing I’d done in the past. There was nothing future-looking about it. Each sentence was grounded in the now. I’d always imagined myself as the kind of writer who would help other people tell their stories, but increasingly I found myself gravitating toward the first person. Illness had turned my gaze inward.
As a patient, you are constantly asked to investigate the body, to report on yourself, and to narrate your findings: How are you feeling? What is your pain on a scale of one to ten? Any new symptoms? Do you feel ready to go home? I understood now why so many writers and artists, while in the thick of illness, became memoirists. It provided a sense of control, a way to reshape your circumstances on your own terms, in your own words. “That is what literature offers—a language powerful enough to say how it is,” Jeanette Winterson wrote. “It isn’t a hiding place. It is a finding place.”
There were days, of course, when I was too tired to write much, but keeping a journal rekindled my love of words, and that inspired me to begin reading seriously again. My mother had given me a hardbound copy of The Diary of Frida Kahlo, and I pored over it. I was moved when I learned that—at an age not much younger than I was when leukemia struck—Kahlo had been a premedical student in Mexico City. One day, while riding home from school, her bus collided with a streetcar. She suffered fractures of the clavicle, ribs, spine, elbow, pelvis, and leg. Her right foot was crushed, and her left shoulder was dislocated. She was pierced by the streetcar’s iron handrail, which entered her left hip and exited through her pelvic floor. The injuries left her bedridden for months.
Before the accident, Kahlo had dreamed of becoming a doctor. Afterward, she had to abandon those plans, but all that time stuck convalescing at home pushed her to uncover a new passion. “I never thought of painting until 1926, when I was in bed on account of an automobile accident,” she said. “I was bored as hell in bed with a plaster cast…so I decided to do something. I [stole] from my father some oil paints, and my mother ordered for me a special easel because I couldn’t sit [up], and I started to paint.”
Kahlo transformed her confinement into a place incandescent with metaphor and meaning. Using a small lap easel and a mirror hung overhead in the canopy of her bed so that she could see her reflection, she began painting the self-portraits that would make her one of the most famous artists of all time. But the plaster corset she wore to brace her injured spine—the body itself—served as Kahlo’s first canvas, a canvas she returned to again and again. Throughout her life, she had dozens of corsets, objects of both torture and beauty, imprisonment and inspiration, that would define the trajectory of her existence and her career. She adorned each one, covering the plaster with scraps of fabric and images of monkeys, brightly plumed birds, tigers, and streetcars. Sometimes she painted her scars, even her tears. “I paint myself because I am so often alone,” she said. “I am my own muse, I am the subject I know best. The subject I want to know better.”
Kahlo’s surgeries and convalescences, infatuations and heartbreaks, lived on in her paintings after she died, and she eventually gained a near-mythical status as a patron saint of misfits and sufferers. Could these masterpieces ever have been painted by someone who was well? I wondered. Could they have been created by someone who hadn’t been forced to confront the terrible fragility of the human body? I wasn’t sure.
I was no Frida Kahlo, of course, so it was still difficult for me to imagine how I might creatively engage with my own misfortune. But her story had ignited something inside of me. I began to research the long lineage of bedridden artists and writers who alchemized their suffering into creative grist: Henri Matisse, while recovering from intestinal cancer, had worked on his design of the Chapel of the Rosary in Venice by pretending the ceiling of his apartment was the chapel, and attaching a paintbrush to a long pole, which allowed him to work from bed. Marcel Proust had lived lying down as a result of the severe asthma and depression that had plagued him since childhood,
and penned his seven-volume epic, In Search of Lost Time, from a narrow brass bed in his bedroom, which was lined with cork to buffer him from the sounds of the outside world. Roald Dahl believed his chronic pain had been the creative springboard for his career as a writer: “I doubt I would have written a line, or would have had the ability to write a line, unless some minor tragedy had sort of twisted my mind out of the normal rut,” he wrote in a letter to a friend. In all of these cases, it was the very fact of being physically limited, of life being foreclosed in other ways, that seemed to heighten imagination and embolden productivity. As Kahlo wrote, “Feet, what do I need you for when I have wings to fly?”
* * *
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I decided to reimagine my survival as a creative act. If the chemo sores in my mouth made it too painful to talk, I would find new ways to communicate. As long as I was stuck in bed, my imagination would become the vessel that allowed me to travel beyond the confines of my room. If my body had grown so depleted that I now had only three functional hours each day, I would clarify my priorities and make the most of how I spent the time I had.
With this in mind, I reorganized my bedroom so that everything I needed was within arm’s reach: a small night table littered with pens, notebooks, and paper; a bookshelf filled with my favorite novels and volumes of poetry; a wooden board that I placed atop my knees as a desk. I wrote when I was home, and I wrote each day that I found myself back in the hospital. I wrote until the anger and envy and pain bled dry—until I could no longer hear the persistent beeping of monitors, the hiss of respirators, the alarms that constantly went off. I had no way of predicting all the places the Hundred-Day Project would take me, but what I knew, for now, was that I was starting to find my power.
14
TANGO TO TRANSPLANT
NEARLY A YEAR earlier, shortly after my diagnosis, I’d called my brother, Adam, on Skype while he was studying abroad in Argentina. I had to tell him that I’d just been diagnosed with leukemia and that—no pressure—he was my only shot at a cure. At first he thought I was playing a twisted prank on him. “This isn’t funny,” he said. “I’m serious,” I said. “I wish I were joking.” My parents and I had kept him mostly in the dark about my condition, hoping to shield him from worry, and as it dawned on him that this was not, in fact, a joke, his face fell. Without question, he took a leave from his study abroad program and, a few days later, boarded a plane to New York to undergo the necessary tests.
The results showed that Adam was a match—a perfect match, a ten out of ten on the donor scale—and we celebrated, overjoyed by this bit of good news. We were in such good spirits that we could, in fact, find humor in the circumstances. Soon after, my brother christened me with a new nickname. “Salut, Suleikemia,” he’d say each morning. But then, the reality of what was to come began to sink in—that suddenly everyone in our family was leaning on my brother. Adam insisted he was glad to be able to do something to help, but it was an enormous amount of pressure to be under. By the time the clinical trial got under way, he was a senior in college, and while his friends were applying to jobs and partying away the final months of the school year, he was shuttling from campus to the city for appointments with my transplant team. On top of that, my parents were terrified that he might do something that would put his health at risk, so they began badgering him not to drink or smoke or stay out too late. One night during dinner my mother made a comment about his sugar intake and Adam lost it. “What is this? Some fucked-up version of My Sister’s Keeper?” he shouted before storming out of the room. In the months that followed, he struggled to keep up with his studies and reduced his course load. He started taking medication for anxiety and, when he came home on weekends, I could hear him tossing and turning in his room next door.
All of this added to the guilt that had been my steady, secret companion since my diagnosis. I felt guilty about the financial distress I was causing my family. The piles of medical bills and co-pays. The lost income. When I got sick, my mother had turned her focus from painting to being my full-time caregiver, and my father often missed class because of my medical emergencies and was beginning to wonder if he should take the next semester off. I felt guilty whenever I spiked a fever in the middle of the night, knowing one of them would need to drive me the three and a half hours to the city, streaking down the highway to reach the emergency room in time. I felt guilty after my father returned from his long afternoon walks in the woods, his face puffy. I felt guilty when Will turned down a promotion at work. He didn’t say it was because of me, but I knew it was. He was already pushing it with his boss, always asking to work remotely so that he could keep me company in the hospital, exhaustion ringing his eyes from all those nights sleeping on a cot, rest made impossible by the ceaseless beeping of monitors. I felt guilty about my brother who didn’t talk much about his feelings but who confessed one night to my mother that, as my donor, he felt responsible for the outcome of my bone marrow transplant. I felt guilty about what my illness had done to my family, the pain and stress I was causing everyone, the amount of “space” my body took up with its problems. It was impossible not to feel like a burden.
* * *
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After each round of the clinical trial, the doctors performed a bone marrow biopsy, checking for lurking leukemic blasts, the ten-inch needle notching a new scar on my lower back. For the most part, the results showed progress, but it was slow. “Just a few more rounds,” Dr. Holland would say at the end of a treatment cycle. For months it went on like this, until finally—endless biopsies and near-fatal complications, and months of hospitalizations later—we hit a magic number. While the clinical trial hadn’t completely eradicated my leukemia, the number of blasts in my marrow had dipped under 5 percent, a safe enough level for me to move on to what we all hoped would be the final phase: transplant.
Dr. Holland did his best to prepare me and my family for what was to come. He told us that I would spend about eight weeks in the transplant unit. During my first week, I would undergo an intensive regimen of chemo designed to wipe out my marrow and immune system so that my body could receive my new marrow. I was familiar with the nausea and vomiting that accompanied chemo, but Dr. Holland warned us that the treatment would be far more aggressive than any I’d received. My body would have to ward off fevers and mucositis without any white blood cells to protect me. I would likely need a feeding tube, and I would be connected to a 24/7 morphine drip.
The week before the transplant, my brother would be given injections to stimulate the production of stem cells, the primitive marrow cells that mature into red blood cells, white blood cells, and platelets. Forty-eight hours before the transplant, my brother would enter the hospital so that his stem cells could be harvested. For roughly nine hours, he would sit in a hospital room, with a needle in one arm, hooked up to a machine that would filter the stem cells from his blood plasma through a process known as apheresis. Once a sufficient amount of stem cells had been collected into IV bags, they would be injected into the central line implanted into my chest. My fate lay in those stem cells, in their ability to move through my blood and to find their way into my marrow, where they would hopefully begin to grow and proliferate. The two weeks after transplant would be the most difficult as we waited to see if the transplant had worked—if the stem cells successfully engrafted into my marrow. Assuming the transplant succeeded, the donor cells would slowly replenish my marrow and create a new immune system. Once my blood counts stabilized, and once I no longer needed transfusions, I would be discharged. I would have to find a place to live close to the hospital, so that I could come in for daily checkups. The recovery period would take several months, until my new immune system was strong enough for me to go outside without a protective face mask and gloves.
Among cancer patients, a bone marrow transplant is considered a rebirth, a second birthday—but only if it works. The transplant itself is dangerous. One of the biggest pot
ential complications is graft-versus-host disease (GVHD), which occurs when the graft (the donor’s cells) does not recognize the host (the patient’s cells) as derived from the same self. Immune cells relentlessly attack what is foreign—that’s how the body eradicates infections—but in the case of GVHD, the patient becomes the target. The first symptoms, which typically appear within the first hundred days after transplant, can be as mild as a rash but they can also be far more serious, ravaging the lungs, liver, eyes, and gastrointestinal tract. Even if the transplant worked—even if I did not develop GVHD—I would still be extremely susceptible to infections and a raft of other complications, including heart failure and organ damage. My doctors told me and my parents that I had about a 35 percent chance of long-term survival. Thirty-five percent. When I heard it, the number whooshed and rattled through my bones. And even if I did survive “long term,” the possible side effects, which ironically included a high risk of new cancers in the future, were also terrifying. I felt as though I was walking around with a loaded gun pressed against my temple. A medical game of Russian roulette.
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