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After Cancer at 22, What Comes Next?

The hero’s journey is one of the oldest narratives in literature. Against all odds, the heroes 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. Survivors, like heroes, have faced mortal danger and overcome impossible trials. For the past four years, as I’ve undergone treatment for leukemia after being diagnosed at age 22, 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.

When I am finally pronounced “cancer-free” in the autumn of 2015, after being diagnosed at age 22, 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 off Craigslist 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. I’ve made it to the right side of a terrifying prognosis: a 35% chance of long-term survival. I’ve gotten through countless rounds of chemo, an experimental clinical trial, and a bone marrow transplant. 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 27-year old 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.

“The harder I try to find my place among the well, the more I experience a dissonance between what should be and what is.”

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.

The harder I try to find my place among the well, and to live up to my expectations of a heroic 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 illness, 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: 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? Because I can’t reconcile what I imagined remission to look like with the facts of my reality, I put my New York Times column, “Life, Interrupted,” 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 questions: How is my health? What will I do next? Eventually, I stop going out altogether.

suleika is seen standing with her chemo machines

Jaoad during her treatment.

Ashley Woo

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 my dog 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. 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.

On the one-year anniversary of the end of my chemo, I find myself at JFK Airport. It’s also the one-year anniversary of the death of Melissa Carroll, my closest cancer comrade. The grief of losing her has haunted me, her Nile-green eyes floating night after night through my dreams, but it’s also compelled me to act. As I stand in the security line, I pray 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.

It wasn’t easy to convince my medical team to let me travel so far 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.

suleika and melissa are seated on a sofa, both wearing all black

Jaoad with her close friend, Melissa Carroll.

Ashley Woo

When I arrive, I put the vial of Melissa’s ashes in my coat pocket each day 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.

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.

“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.”

The Taj appears like a floating poem in the dawn, a moon-white dream of marble pillars and minarets. 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. 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.

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.

Between Two Kingdoms: A Memoir of a Life Interrupted

bookshop.org

$25.76

From a distance of several continents, I am able to see my life with clearer eyes. For too long, I’ve been like a bee trapped inside a window, smashing my forehead against the glass with mounting desperation in a futile attempt to get out. I need to wriggle free of the oppressive myths of the heroic survivor’s journey. Surviving is not where the journey ends but where the hard work of healing begins.

On the long flight home, I daydream about embarking on a solo pilgrimage, though what form it might take, I don’t yet know. I want to be in motion—to figure out a way to unmoor myself, to thrust myself into the greater expanses of the world. Not because I have a particular hankering to explore, but precisely because I’ve grown afraid of the world and my ability to navigate it alone. I want to expect nothing. To ask for nothing. To depend on no one. To find out what lies on the other side of the in-between place. To start living again.


Excerpted from Between Two Kingdoms: A Memoir of a Life Interrupted by Suleika Jaouad © 2021 by Suleika Jaouad. Excerpted by permission of Random House, an imprint and division of Penguin Random House LLC, New York. All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.

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