Between Two Kingdoms

by Suleika Jaouad

  I’m so mortified at this point that I’m harboring murderous impulses—but if Jon is repulsed, he doesn’t show it. When it’s time for me to be wheeled away, he kisses me through my mask and tells me he’ll be there when I wake up.

  On the operating table, I lie in a backless hospital gown under a blaze of fluorescent lights. “Congratulations!” the surgeon says to me as he enters. “I hear you are being deported today.” He is referring to the removal of my port, of course—the gateway for the dozens of rounds of chemotherapy, antibiotics, stem cells, immunoglobulin, and blood transfusions that have entered my body since diagnosis. It’s a line he’s clearly delivered dozens of times, a routine intended to make patients smile. As problematic as the pun is, this moment does feel like an official eviction of sorts, a final procedure that will firmly deposit me back in the kingdom of the well.

  An anesthesia mask is strapped over my face and I am told to count down from ten. “See you on the other side,” the surgeon says before I drift into a deep, chemical sleep.

  * * *

  —

  I wake up in the recovery room forty-five minutes later. My nerve endings bristle and tingle as I rouse from the twilight. Lids fluttering open, pupils rolling around the room like marbles, I can’t quite figure out where I am or why Jon, and not Will, is sitting in the chair next to my hospital bed. Then I see the bandage on my chest and remember what has happened. Instead of relief, I feel bereft at the loss of my port—at the thought that now my visits to Sloan Kettering will be fewer and farther between, that I won’t get to see my favorite nurses and doctors as often. The sadness is the start of something too complex and discomfiting for me to parse quite yet. So I chalk it up to the aftereffects of the anesthesia.

  Later that night, Jon suggests we go out to celebrate. I still feel off, but I make an effort to rally. We get dressed up and go to a gala at the Apollo Theater. Jon, who’s become somewhat of a celebrity among the Harlem cultural elite, keeps getting pulled away from our table by people who want to chat or to snap a selfie with him. I sit alone for much of the night downing goblets of chardonnay. At one point, the bandage on my chest detaches, slithering down past my navel and the hem of my dress before plopping onto the floor. I discreetly kick it under the skirt of the tablecloth, looking around to see if anyone noticed. My exposed stitches, tender and raw, rub against the fabric of my dress. I try to ignore the pain as I watch couples glide around a black-and-white-checkered dance floor, but it doesn’t work. The sight of these gowned women and tuxedoed men glittering under a canopy of soft white string lights makes the edges of the room where I sit seem gloomier, lonelier somehow. When I raise my hand to my face, I’m startled to discover my skin is slick. Tears mixed with mascara run down my cheeks in big, inky drops.

  “What’s wrong?” Jon says in alarm when he returns. It’s a question he’ll ask me repeatedly in the coming months, shocked to discover that the happy, confident, game-for-anything woman he fell in love with is an aspirational act.

  What I say in response: “I’m fine.”

  What I want to say but don’t know how to articulate: My port has been removed but it’s not gone. Its absence is a new kind of presence, a realization of all the other imprints of illness with which I have yet to contend. The ravages of treatment on my brain, my body, my spirit. The toll of burying dead friend after dead friend and the grief that’s been accumulating, unattended, inside of me. The heartbreak of losing Will and my fear that I’ve made a mistake in not taking him back. The terror and utter confusion I feel about what to do next.

  After three and a half years, I am officially done with cancer—more than four years, if you start with the itch. I thought I’d feel victorious when I reached this moment—I thought I’d want to celebrate. But instead, it feels like the beginning of a new kind of reckoning. I’ve spent the past fifteen hundred days working tirelessly toward a single goal—survival. And now that I’ve survived, I’m realizing I don’t know how to live.

  * * *

  —

  The hero’s journey is one of the oldest narratives in literature. Survivors, like heroes, have faced mortal danger and undergone impossible trials. Against all odds, they persevere, becoming better, braver for their battle scars. Once victory has been secured, they return to the ordinary world transformed, with accrued wisdom and a renewed appreciation for life. For the past few years, I’ve been bombarded with this narrative, observing it in movies and books, fundraising campaigns and get-well cards. It’s hard not to traffic in such clichés when they’ve become so culturally embedded. It can be even harder not to internalize them and to feel as if you have to live up to them.

  Over the fall, I make attempts to inhabit that narrative, to return to living as triumphantly as I can. I drag myself to the gym in the basement of my building a couple of times a week—a feat, even for my pre-illness self. I buy a juicer and for a short while force myself to drink gag-inducing kale concoctions. I go to my neighborhood coffee shop each morning and try to write something new. I have moments of laughter and lightness when I go out dancing with friends, but they are brief—gone as quickly as they appear.

  But I’m supposed to be better, I repeat endlessly to myself. After all, on paper, I am no longer considered sick. The torrent of doctors’ appointments, blood tests, and phone calls from concerned friends and family has slowed to a trickle. Any day now, I will be deemed well enough to be kicked off disability. If I manage to stay cancer-free for a few more years, I might even join the ranks of cancer survivors who are considered “cured.” And yet, I’ve never felt farther from being the healthy, happy young woman I hoped to be on the other side of all this.

  Every morning, I still down a fistful of pills. Immunosuppressants prevent my body from rejecting my brother’s marrow. Twice-daily doses of antivirals and antibacterials protect my fragile immune system. Ritalin combats the chronic fatigue and fogginess that haven’t lifted since the transplant. Levothyroxine does the job of my chemo-ravaged thyroid. And hormone replacements cover for my withered ovaries.

  Worse are the psychological imprints of illness, largely invisible to others and devoid of easy fixes. Depression descends like a demon, holding me captive for days, sometimes weeks at a time. Anxiety surges as I wait to hear the results of a routine blood test. Panic overtakes me each time I see a missed call from the doctor’s office or discover a mystery bruise on the back of my calf. Grief continues to haunt me, Melissa’s Nile-green eyes floating through my dreams, night after night, as I sleep.

  The harder I try to find my place among the well, and to live up to my expectations of the survivor’s journey, the more I experience a dissonance between what should be and what is.

  Even acknowledging this schism feels impossible: I’ve already put my parents through so much, and I don’t want to worry them with the challenges I am facing now. My medical team is focused on cancer, not its aftermath. Painfully aware that the struggles of recovery are a privilege many don’t get to experience, I’m afraid of sounding ungrateful—or worse yet, insensitive to those dealing with far scarier unknowns.

  But the contradictions leave me mired in unanswerable questions: Will my cancer return? What kind of job can I hold when I need to nap four hours in the middle of the day, or when my misfiring immune system still sends me to the emergency room on a regular basis? My editor is ramping up pressure for me to resume the column; readers want to know how I am doing, she prods, to hear about life after cancer. But whenever I sit down to write, I can only churn out lies. I want to give readers the kind of narrative resolution both they and I have hoped for all these years—to be able to say that Will and I are still together, that our long-postponed wedding is finally under way; that I’m now training for a marathon, reporting investigative features from far-flung locales, and having a baby. But, of course, that would be fiction.

  Because I can’t reconcile what I imagined remission to look like wit
h the facts of my reality, I put the column on permanent hiatus. I stay financially afloat by drumming up some speaking engagements and taking a part-time job at a real estate investment company that I’m able to do remotely from bed, but the work isn’t sustainable or fulfilling. I barely ever see friends, and when I do, I brace myself for the dreaded three questions: How is my health? What happened to Will and me? What will I do next? Eventually, I stop going out altogether.

  Meanwhile, Jon’s career is skyrocketing. He has always been the hardest-working person I know and I’m so proud of his success, but being in a relationship with a touring musician who spends more time on the road than at home is rough. I don’t feel safe in my own body yet without a constant companion or caregiver by my side and whenever I’m alone, I fall apart. At the same time, whenever Jon is around, I keep him at arm’s length. These mixed messages are confusing, and soon he begins asking for more. He wants to know where our relationship is going. He wants to know my thoughts on marriage and children. He wants me to open up. But the gap between us only widens the more he asks.

  When Jon goes out of town for a gig, I crumple into bed, exhausted from the effort of pretending I’m okay. I pull the comforter over my head and curl into my usual position: fetal. I let myself cry—ugly, shuddering sobs. I stay in bed like this for days with the drapes closed, ignoring emails and phone calls, leaving my apartment only when the dog whines. Each night, I fall asleep telling myself that tomorrow will be the day when I finally get it together. Each morning, I wake up feeling so sad and lost that I can barely breathe. In my lowest moments, I fantasize about getting sick again. I miss the sense of purpose and clarity I felt while in treatment—the way staring your mortality straight in the eye simplifies things and reroutes your focus to what really matters. I miss the hospital’s ecosystem. Like me, everyone there was broken, but out here, among the living, I feel like an impostor, overwhelmed and unable to function.

  * * *

  —

  On an early morning that winter, I am out walking Oscar, wearing the gaunt, zombie look of someone who splits her time between Earth and some other, darker place. As I make my way up Avenue A, I bump into a man I vaguely recognize from the neighborhood coffee shop where freelancers hang out—he’s a novelist, I think. He’s dressed snappily in a tweed overcoat with leather elbow patches and a briefcase. I’m dressed in my pajamas and smoking a loosie I bought at the corner bodega for fifty cents.

  “Wake up, princess,” he says, looking me up and down. “Death is the last resort.”

  I feel so ashamed standing there, under his fixed gaze and the glare of the white winter sun. I’ve spent the better half of my twenties fighting to survive only to become someone so defeated as to elicit a sidewalk intervention from a concerned stranger. During my time in treatment, I’d had one simple conviction: If I survive, it has to be for something. I don’t just want a life—I want a good life, an adventurous life, a meaningful one. Otherwise, what’s the point? And yet, the place I’ve arrived at is the opposite. Now that I’ve been afforded the possibility of a good life, I’m not living it—worse, I’m squandering it. Guilt compounds my shame: I know how lucky I am to be alive, when so many I love are not. Out of the ten young cancer comrades I befriended during treatment, only three of us are still here.

  As I walk home, it becomes clear: I cannot continue on like this. Something—or maybe everything—must change.

  26

  RITES OF PASSAGE

  THERE IS AN impulse to trace a monumental decision—like embarking on a long journey—back to a single epiphany, a flare of inspiration. A plan of action that arrives fully formed when you find yourself lying on the floor, praying for something, anything, to change.

  I do not have one such moment.

  My decision to leave home and to go on the road comes to me in stages, but it begins with a trip I take for someone else.

  * * *

  —

  On the one-year anniversary of Melissa’s death and the end of my chemo, I stand in the security line at John F. Kennedy International Airport, hoping that the TSA agents won’t rifle through my suitcase. With a name like Suleika Jaouad, it’s not uncommon for me to get flagged at border crossings and airport security, but for once I actually have something to hide. In my suitcase I’ve stuffed a vial of gray-white powder inside a pair of socks. This isn’t your typical contraband: I’m smuggling some of Melissa’s ashes onto a fifteen-hour flight to India.

  After Melissa died, a grant was established in her name to send young adults with cancer on a trip abroad. I didn’t have to think twice about accepting the first grant—or, when Melissa’s parents asked, bringing a piece of her with me to India. The place meant so much to her when she visited, and it was where we had hoped to travel together someday. My decision to go now is a way of commemorating Melissa and a trip that never came to pass. It’s also a first exercise in confronting my ghosts.

  It wasn’t easy to convince my medical team to let me travel to India, given my weak immune system. “The risk of serious infection is too high,” my doctor said when I first raised the idea. But he eventually came around and began weaning me from immunosuppressants so that my body could ward off germs. I had to get a round of vaccinations, undergo a battery of blood tests, and receive sign-offs from everyone on my medical team confirming I was well enough to go.

  As I board Air India, I strap a mask across my mouth and sterilize my seat, meal tray, and armrests with antiseptic wipes. But despite such precautions, I fall ill with a virus within a few days of arriving in Delhi. I’m weak and feverish for much of the two weeks I’m there, and end up having to go to a local hospital to make sure it’s nothing serious. I’m beginning to understand that no matter how much time passes, my body may never fully recover to what it once was—that I can’t keep waiting until I’m “well enough” to start living again. It’s a bitter concession but a necessary one. While it might not be possible to move on from illness, I have to start trying to move forward with it.

  As terrible as I feel, each day I drag myself out of bed and head outside to explore. I put the vial of Melissa’s ashes in my coat pocket and carry it with me everywhere I go, feeling her presence with each step. Together, we explore the dusty streets of Delhi: the pungent spice markets, contemporary art galleries, and sprawling gardens strewn with ruins. We ride rickshaws through a chaotic tangle of buses, bicycles, and the occasional elephant. As we wander, I take on Melissa’s painterly gaze, and I relish the vibrancy of the colors—the gem-toned saris, the flower stands filled with marigolds, and the Technicolor pigments that dancing revelers throw into the air by the handful during the Hindu festival of Holi. As part of the grant, I spend each afternoon volunteering at Mother Teresa’s Home for the Dying, a hospice for the destitute, where I hang wet laundry on lines of chicken wire and hand out meal trays to the bedridden.

  * * *

  —

  I save the Taj Mahal for last. I’ve carried Melissa with me for two weeks, and it’s time to say goodbye. I arrive one morning before the sun rises: Only a dozen tourists stand in line, waiting for the gates to open. The streets are dark and deserted except for a stray dog sleeping in the middle of the road, her puppies coiled around her for warmth. I tell the tour guide that I have a vial of ashes to scatter once we get inside. The guide informs me that this is against the rules and security is very strict, it will never be allowed. I tell him Melissa’s story and how much she wanted to return here. By the time I’m done, the tour guide not only agrees, he offers to smuggle the vial in himself.

  The Taj appears like a floating poem in the dawn, a moon-white dream of marble pillars and minarets. It’s a place that spoke to Melissa as she faced the end of her life, and after studying its history I understand why. It was commissioned by the Mughal emperor Shah Jahan as a memorial for his wife, who had died giving birth to their fourteenth child in 1631. The emperor was so grief-stricken, th
e story goes, that his hair turned gray overnight. He vowed to immortalize their love with a monument more beautiful than any the world had ever seen. It took decades to build, but once it was completed, the emperor was able to find solace. As I wander through the ornamental gardens, I think of how the Taj embodies both love and grief. So did my friendship with Melissa. In life, I’m realizing, you don’t get one without the other.

  Ascending the steps, I drink in the calligraphy and semiprecious stones—coral, jade, onyx—inlaid in marble. I circle around to the back terrace that overlooks the Yamuna, a sacred river flanked by the crackling fires of crematoriums where Hindus come to say last rites for their dead. Gazing onto the river, I think of Melissa’s final Instagram post. It was a picture of her taken in India, captioned with the words: gate gate paragate parasangate bodhi svaha. Gone, gone, gone beyond, gone altogether beyond, O what an awakening, all hail. I scan the terrace for security officers, and when the coast is clear, I step over the rope cordon and walk to the edge. I open my palm toward the river. For a second, the vial catches the light. Then it tumbles toward the water and is gone.

  * * *

  —

  Taking Melissa’s ashes to the place she loved most doesn’t lessen the pain of losing her, but it has shown me a way that I might begin to engage with my grief. It has introduced me to the role of ritual in mourning—the ceremonies that allow us to shoulder complicated feelings and confront loss; that make room for the seemingly paradoxical act of acknowledging the past as a path toward the future. It gets me thinking about the other ways we mark the crossing of thresholds: birthdays and weddings and baby showers, baptisms and bar mitzvahs and quinceañeras. These rites of passage allow us to migrate from one phase of our lives to another; they keep us from getting lost in transit. They show us a way to honor the space between no longer and not yet. But I have no predetermined rituals. They are mine to create.