Between Two Kingdoms

by Suleika Jaouad

  The world is moving forward and I am stuck, I wrote.

  * * *

  —

  With Will gone during the week, it was tempting to let myself stew in self-pity, so I began searching for something productive to do with my time. First, I decided to enroll in a creative writing course at Skidmore, the college down the road from our house where my father was a professor in the French department and my brother was finishing his senior year. But I only ever made it to the first day of class. By then, the clinical trial was under way, and within two weeks I was admitted back to the hospital with another neutropenic fever. The sores in my mouth multiplied and grew so painful that when I was discharged, my medical team prescribed me a fentanyl patch, an opioid a hundred times more potent than morphine.

  My days were spent in bed, propped semi-upright by pillows. Until my cancer siege, I had always prided myself on being ambitious. The detritus of past achievements that filled my childhood bedroom—ribbons, trophies, awards, and diplomas—now mocked me. Determined to keep searching for something to do with myself, I decided to start studying for the GRE with the idea that I could apply to graduate school. I spent the next few weeks brushing up on algebra, taking practice tests, and researching PhD programs in International Relations and Near Eastern Studies. I was hospitalized again before I could sign up for the exam—this time for an infection caused by the catheter in my chest, which was surgically removed and replaced by a new one—but as soon as I was back home, I registered to take the GRE later that week, before another complication could hijack the plan. On the morning of the exam, my mother made me a special breakfast of “brain-boosting foods”: scrambled eggs, with a side of sautéed kale and porridge with ground flaxseeds and blueberries. I did my best to take a couple of bites, even though I had no appetite. As she drove me to the testing center in Albany, I napped in the backseat, trying to conserve energy. When we arrived, a surly receptionist informed me that I wasn’t allowed to wear the knit hat covering my bald head during the exam. My mother explained that I was undergoing chemotherapy, but the receptionist was unmoved. “It’s the rules.”

  Shivering in the temperature-controlled air, my bald head gleaming under the bright lights, I was determined to finish that damn test. It took me the full three hours and forty-five minutes to do it. By the end, I was delirious, my eyelids drooping with exhaustion and my teeth clacking feverishly, but I finished. When I received my results a few weeks later they were mediocre, but I was undeterred. Over the next month, I threw myself into applying to a handful of PhD programs across the country, soliciting recommendation letters from former professors, drafting the necessary admission essays, and filling out scholarship forms. When I finally hit Submit on my applications, I expected to feel victorious but deep down I knew my efforts had been in vain. Even if I got into graduate school, there was no way I’d be well enough to attend.

  I stopped writing in my journal after that. I grew resigned to the idea that, for the time being, I had one central preoccupation: ongoingness. The clinical trial was proving harder on my body than anyone could have predicted. The toxicity of the drugs was so intense that at the end of each cycle I was rushed to the emergency room and admitted to the hospital for multi-week stays, battling more neutropenic fevers and life-threatening complications ranging from colitis to sepsis. My mouth was so blistered with sores that even with the fentanyl patch and a cocktail of supplementary drugs, I was in perpetual pain. I began keeping a bottle of liquid morphine on my bedside table and whenever the pain roused me in the middle of the night, I would take a couple of sips until I could fall back asleep. I started to wonder if the side effects of the clinical trial and the painkillers I was prescribed would kill me before the leukemia did. I often thought about quitting the trial altogether. If it weren’t for the pleas of Will and my parents, I think I would have.

  During one of my many hospitalizations that fall, I shared my wedding plans with my medical team. I expected them to be excited at my good news, but their reactions were more concerned than celebratory. Within the hour, a social worker appeared at my hospital room door, asking to speak to my parents and me. “The goal is to get you to bone marrow transplant,” she said. “As I’m sure you know, this is an expensive procedure—a transplant can cost more than a million dollars. Luckily, you’re on your father’s insurance, which will cover the majority of the cost, but getting married could jeopardize your eligibility to stay on his policy. We just don’t think it’s worth the risk. At least, not until you’re out of the woods.”

  I glared at the social worker. She was young and pretty with long, lovely strawberry-blond hair streaming past her shoulders. On a slender, perfectly manicured finger, she wore a giant diamond engagement ring. I knew she was just the messenger, and I knew she was right, but I couldn’t help but hate her for it. The wedding was postponed, joining the countless other plans and goals and projects that had been relegated to purgatory until further notice. No one spoke of it again.

  A kind of sundering was taking place within me: There was the good-natured patient, young and spunky and cheerful, who raged courageously against her disease, determined to make the best of her terrible circumstances, and this new version, envious, short-fused, sleeping sixteen hours a day and rarely ever leaving her room. On Sunday nights, when Will packed his bags, preparing to leave Saratoga for the workweek, I wanted to put on a happy, supportive face. I tried. But as the weeks passed and I got sicker, it grew harder. It was unfair of me to resent him for going—not least because I was the one who had convinced him to take the job—but an anger unlike any I’d experienced before was building inside me, contained for now, but threatening to consume everything around me. Will, the social worker, everyone else who was out there participating in the world—they weren’t the enemy, the disease was. I knew that, but with each day, each dream deferred, it got harder and harder to tell the difference.

  12

  CLINICAL TRIAL BLUES

  MY PARENTS BECAME convinced that I was depressed that winter. I had taken to pressing the button on my IV pole that delivered a bolus of morphine straight to my veins as often as possible. I looked forward to the smoky chemical twilight, a welcome respite from my mind’s incessant chatter. I talked less and less, drawing inward. Sometimes, out of frustration and anger, I lashed out, only to retreat even deeper. L’appel du vide beckoned; my moods sank into dark ruts from which I no longer knew how to lift myself.

  When I wasn’t sleeping or feeling seasick from the clinical trial drugs, I was busy setting the world record for the number of Grey’s Anatomy episodes watched consecutively. When one episode ended, without even thinking, I would begin the next, desperate for a distraction from my rapidly deteriorating mental and physical state. There was something strangely soothing about TV medical dramas—gruesome wounds gushing torrents of fake blood, patients coding on surgical tables only to be rescued by gorgeous doctors, fleets of ambulances screeching into the hospital parking lot following yet another epic, citywide tragedy. Flooding my brain with these images numbed me to my own medical drama. It also gave me an exciting narrative and some steamy plot twists to project onto the packs of young residents I saw roaming the halls. One day, while at the hospital, I asked one of the residents if her life bore any resemblance to those of the doctors on the show. “Everyone is significantly less attractive,” she said. “But we have just as much sex.”

  My favorite thing to watch when I wasn’t bingeing on Grey’s was a movie called A Little Bit of Heaven. In it, Kate Hudson plays a free-spirited young woman who gets diagnosed with colon cancer—or “ass cancer,” as she calls it—and falls in love with her handsome oncologist. Spoiler alert: She dies at the end, but there’s a joyous funeral with pink umbrellas, fluttering streamers, champagne, and a second line parade. By all accounts, including mine, the movie is terrible, but it was one of the only depictions of cancer in youth that I had come across and it made me feel a little le
ss isolated. Each time I watched it—and I did so dozens of times—I would cry inconsolably for hours, which was a relief, because I’d been finding it difficult to feel much of anything as of late. It allowed me to face the one topic my friends and family refused to discuss, even though it was on everyone’s mind: the possibility that I could die, and soon.

  In light of all this, it’s unsurprising that my parents were concerned—and that they were vocal about it. “Why don’t you go to a cancer support group, or reach out to some of your old Saratoga friends?” they said. “Take a break from TV, get out of the house for a bit, do something fun. Wouldn’t that be nice?”

  I had no interest in attending a support group, but made an effort to reconnect with some childhood friends for the same reason I allowed myself to be poisoned over and over again with experimental pharmaceutical drugs that had yet to be proven effective and safe: I didn’t want my parents to worry any more than they already did. I reached out to Molly, whom I’d known since preschool, and who lived a few towns over, where she worked at a local bee farm. We talked on the phone one day and made a plan to hang out at the mall, the only meeting place for suburban young people with a serious shortage of things to do. When the day arrived, I pulled a rumpled blouse and a pair of black jeans from my suitcase, which stood, still unpacked from Paris, in a corner of my room. The clothes hung off my skeletal body, but I had nothing else to wear. I had long ago traded in civilian clothes for the patient’s uniform: comfy sweats, robes, pajamas, and slippers. My feet had grown so slender and bony that I had to borrow a pair of my mom’s boots, a half size smaller than mine. I covered my bald head with a hot-pink wig, adjusting it in the mirror. Peering into my makeup bag for the first time in months, I contemplated drawing on some eyebrows, but I was interrupted by my mother’s energetic ringing of the cowbell.

  “Don’t forget that I need to give you your injections before you go!” she hollered from the bottom of the stairs.

  My body tensed when she appeared in the doorway of my room holding two syringes. The clinical trial nurses had trained her to administer the chemo injections. This had seemed like a good idea, allowing me extra time at home before I was inevitably admitted to the hospital for another neutropenic fever, but I’d quickly come to dread the ritual, a metallic tang of fear coating my tongue at the sight of the needles. I knew how fortunate I was to have a mother who cared for me with such dedication and devotion. Since my diagnosis, taking care of me had become her main focus. I tried to remind myself that some people, like my friend Dennis, had no one to care for them at all. But in the moment, it was difficult to locate my gratitude.

  My mother sat on the edge of my bed and got to work cleaning my upper arm in gentle, concentric circles with towelettes of rubbing alcohol. “I’m sorry, I’m sorry, I’m sorry,” she said preemptively. With every day, the injections had become more torturous. Even though my mother was careful to alternate arms, by the end of each trial cycle, the skin around the needle sites peeled off in sheets. Beneath the needle sites, rock-hard cystic lumps had formed, the lightest touch making me cry out in pain. As my mother slid the first needle into the muscle, I grimaced, then yelped. By the time she finished the second, I couldn’t look her in the eye. The logical mind tries to remind itself that sometimes you must suffer in order to feel better. But the body has its own memory: It remembers who hurt it. On an irrational level, I felt wronged by those whom I saw as having “poisoned” me (people in lab coats, phlebotomists, my mother) and by those who encouraged me to think positively about it (friends, Hallmark cards, the “cancer books” section of Barnes & Noble). Finding the silver lining felt like part of the punishment.

  Much later, my mother would share with me her diary from that winter: I call my friend Catherine to cancel my tea time with her tomorrow morning. I want to say: “Catherine, how is this happening to us, to Suleika?” And instead I say this and I say that, I ask about her son and her husband. It makes me feel better and wounded at the same time, because what I have to tell is about transfusions and fatigue and reality. The tears are in my heart but they never come out. Only when Suleika doesn’t speak to me do I lose all strength. Communication, love, laughter, her presence—that’s what makes this bearable, what allows us to keep going like Ulysses.

  Maybe if I had read this then, it would have made a difference—though in all truthfulness, I doubt it. Suffering can make you selfish, turn you cruel. It can make you feel like there is nothing but you and your anger, the crackle of exam table paper beneath bruised limbs, the way your heart pounds into your mouth when the doctor enters the room with the latest biopsy results. But I wasn’t the only one whose life had been interrupted by illness; my loved ones all faced a rupture that was similar in kind, if not in degree. That I wasn’t the only one in the room meant I was one of the lucky ones, I knew.

  My mother went straight to bed, as she often did after the injections, and my father drove me to the mall. I had never gotten my driver’s license, but even if I had, in my condition I wouldn’t have been allowed behind a wheel. One of the side effects of being in cancer treatment and on a mother lode of painkillers was impaired motor skills and cognitive ability; another was helicopter parents who watched everything I did, hovering close at all times in case my body decided to call it quits.

  “Why don’t I park so that I can accompany you inside?” my father asked as he pulled up to the mall’s entrance.

  “I’ve got it covered, Pops,” I replied, trying to conceal my frustration. I hated how, ever since my diagnosis, everyone, especially my parents, treated me like a baby.

  I walked around the food court looking for Molly. When I couldn’t find her, I took a seat in front of the Burger King, trying to steady the squelching sensation in my stomach by taking deep breaths. I chalked this up to nerves. The last time Molly and I had hung out was in junior high. An incident one hot summer day involving a bottle of vodka, tacos, and multiple hours spent sunbathing had ended with Molly projectile vomiting and her mother screaming at me that I was a “terrible influence.” We hadn’t been allowed to hang out again. After college, Molly had moved back home to take care of her mother, who now had Alzheimer’s. As soon as Molly had heard the news of my diagnosis, she sent me a heartfelt note, asking if I wanted to get together. I was resistant, not wanting to take her up on an offer that I thought had surely been made out of pity, but as I waited for her, I realized I no longer cared. Now that I was out in the world, I was thrilled to have weekday plans with someone other than my parents or the cast of Grey’s Anatomy.

  Molly finally arrived, half an hour late. She looked the same but was taller, with wild blond hair that tumbled down her back and black combat boots that made her already long legs look even longer. She apologized for making me wait, then said, “I made a quick stop on my way over. Thought it might help with the chemo.” She winked and handed me a small cloth pouch fragrant with weed.

  We made small talk as we walked to the cinema and bought tickets to the next showing, then settled into the overstuffed seats of the theater. I tried to focus on the movie, but the smell of popcorn and stale sweat made my stomach squelch harder. Just as I felt the familiar panic rising up my esophagus, it hit me: In my rush to get ready, I had forgotten to take my antinausea medication before the chemo. I sprinted from my seat, trying to reach the bathroom in time, but I only made it as far as the trash can next to the concession stand. I retched and I retched and I retched, my body shuddering violently. A group of teenage girls standing in line looked on. “Ew,” said one. “Bitch is wasted,” snickered another. I ignored them. It wasn’t the first time I’d publicly disgorged the contents of my stomach since starting the clinical trial and it wouldn’t be the last. I was growing accustomed to losing my dignity in front of strangers.

  When I was done, I returned to my seat, as though nothing had happened. I wasn’t ready to go home yet, even though I felt trembly and nauseated. For just one night, I w
anted to pretend like I was a normal young person doing normal young person things. I sat there with my eyes closed, trying to steady my stomach, until the credits rolled across the screen.

  Afterward, Molly drove me home. When we pulled up to my house, the street was dark except for a pale light burning downstairs, illuminating the floor-to-ceiling red bookshelves of the study. My father was sitting at his desk, bent over a stack of papers, reading something. Probably medical stuff, I thought. Negotiating with the insurance company and decoding medical jargon had become a full-time job.

  “Bonne nuit,” I said to my father, poking my head through the doorway of his study before retreating upstairs to my room.

  “How was it?”

  “So much fun,” I said. I didn’t want to upset him with the truth.

  My father looked exhausted. He had dark circles under his eyes and his face was sallow and sagging in new places. I felt an impulse to hug him, to tell him I loved him, but we didn’t have that kind of relationship.

  “Molly gave me this,” I said, plopping the weed-filled pouch onto his desk. “You look like you could use it more than me.”

  13

  THE HUNDRED-DAY PROJECT

  “YOU NEED TO find a hobby, something you can do that’s within your physical limitations,” said the therapist my parents had forced me to start seeing. Her words seem obvious now, but at the time, I experienced them as an epiphany. The wedding, the creative writing class, the GRE, the applications to graduate school, the trip to the mall with Molly—these were all things that would have made sense in the context of my former life. I needed to find something I could do from home or a hospital bed. I needed not only to accept my limitations—the exhaustion and nausea, the brain fog and constant hospitalizations—but to figure out a way to make something useful from my pain.