Between Two Kingdoms

by Suleika Jaouad

  “For real? Me too! I mean, I’m not all that good at Scrabble but I’m trying my hand at it.” His whole face lights up as he explains how he and his neighboring prisoners create their own board games out of paper and call out their moves through the vents in the cells where they receive their meal trays. He tells me they’re able to play all kinds of games this way, like backgammon and cards.

  Lil’ GQ says he has never been sick in his life—he does one thousand push-ups each morning to start off the day—but there’s a lot about my cancer experience that he relates to. He understands what it’s like to feel stuck in purgatory, awaiting the news of your fate; the loneliness and claustrophobia of being confined to a small room for endless stretches of time; how it’s necessary to get inventive in order to keep yourself sane. These unexpected parallels are what initially compelled him to write to me. “You’ve faced death in your own personal prison just like I continue to face death in mine,” Lil’ GQ says. “At the end of the day death is death, doesn’t matter the form it takes.”

  We are trying so hard to reach through the plexiglass, to meet each other in shared territory we both understand, but what parallels exist between our experiences have their limitations. It’s a tricky balance, attempting to find resonance in someone’s story without reducing your suffering to sameness. Aside from the obvious differences in skin color and privilege, gender and education, the very fact that I am visiting Lil’ GQ while on a road trip underscores an oceanic difference: Mine is a body in motion; his is a body behind bars. But for the duration of our visit we pretend otherwise, both of us acting as if we are in a coffee shop somewhere, just two people chatting away, trying—however imperfectly—to relate to each other.

  A tap on my shoulder makes me jump. It’s a guard here to tell us it’s 3:00 p.m. “My time is up,” Lil GQ says. Before I leave, he asks one final question. “If you could take it all back, would you?”

  If I could take it all back? I’m stunned. “I don’t know,” I say, quietly.

  * * *

  —

  These are my last miles. I drive through the bayous of Louisiana, bugs splattering against the windshield. I get caught in a storm on the Alabama coast, run into engine trouble when I forget to change my oil, and stay at an inaptly named Comfort Inn near Daytona Beach, where I wake up to discover I’ve been bitten all over by fleas. I ring in the New Year with a glorious night of camping on Georgia’s Jekyll Island, the sound of waves lulling me to sleep. I stay with an old crush in Charleston, and get slapped with my first-ever speeding ticket, which my mother warns better be my last. Before snaking back up the East Coast, I make a quick stop to cross off one final name on my list: a pint-size teenage girl named Unique, who has spent most of her adolescence living out of hospital rooms, but is now preparing to rejoin the greater gathering. Over lunch, I ask what she wants to do next. She beams at me from across the table with a smile so bright it feels like basking in direct sunlight: “I wanna go to college! And travel! And eat weird foods like octopus that I’ve never tasted! And come visit you in New York! And go camping, but I’m scared of bugs but I still wanna go camping!” Maybe it’s her optimism; maybe it’s the long drive over; maybe it’s the knowledge that my time on the road is nearly done—but as I pop a salty fry into my mouth, I think to myself that it is the most delicious fry I’ve ever tasted.

  As I drive on, I continue to ponder Lil’ GQ’s question. I picture Will, arriving at my doorstep in Paris, both of us so innocent and brimming with hope. I remember my mother’s ravaged face as the doctor announced my diagnosis and my father’s bloodshot eyes whenever he returned from his walks in the woods. I think back to my brother’s faltering grades senior year, the pressure he felt as my donor, the way his needs were constantly overshadowed by mine. In the stillness before sleep, I hear echoes: those quiet moans of suffering, the animal bellows of grief. Of course, I would do anything in my power to spare my loved ones of all pain and terror and heartsickness. Of course, it would have been easier if I had never fallen ill.

  Then, my thoughts turn to all the words composed from bed, the letters received, the unexpected friendships made. At a stoplight, I reach back to stroke Oscar, asleep on the backseat. I think of Max, of Melissa—and all those whom I would never have met if it weren’t for the loneliness of hospital rooms and the malignant cells that yoked us together. I retrace the distance I’ve traveled in the last three months—the reckonings and highways and campgrounds. I see Ned, Cecelia, Howard, Nitasha, Bret, Salsa, Katherine, and all the others who have pushed me to plumb new depths. I hear the redwoods’ high-up branches creaking in the cool ocean air, the squawking of a fat russet hen being chased around and around a barn, the wind’s howl over the plains of Pine Ridge, and the satisfying crunch of pinecones beneath my boots as I pitched my tent for the first time.

  Although my twenties have been wrenching, confusing, difficult—to the point of sometimes feeling unendurably painful—they have also been the most formative years of my life, a time imbued with the sweet grace of a second chance, and an inundation of luck, if such a concept can be said to exist at all. The tangling of so much cruelty and beauty has made of my life a strange, discordant landscape. It has left me with an awareness that haunts the edges of my vision—it can all be lost in a moment—but it’s also given me a jeweler’s eye.

  If I’m thinking about my illness—abstracted from its impact on the people around me—then the answer is: No, I would not reverse my diagnosis if I could. I would not take back what I suffered to gain this.

  EPILOGUE

  LIFE IS NOT a controlled experiment. You can’t time-stamp when one thing turns into another, can’t quantify who impacts you in what way, can’t isolate which combination of factors alchemize into healing. There is no atlas charting that lonely, moonless stretch of highway between where you start and who you become. But by the time New York looms into view, the city’s mad, glittering skyline blotting out the stars, something in me has shifted, maybe even on a molecular level.

  As I cross the George Washington Bridge, my head is full of dreams. Even if I can’t see their shapes clearly, or put words to them yet, there are some things I can already make out ahead. I drop off the car, visit my doctor, and move to the little log cabin in Vermont, where I live for several months and begin writing these pages. I read by the fire, wander in the woods, and sit on the back porch. It’s there on this porch, on an afternoon later that summer, that I receive the news that Max has died. “Heaven,” he wrote in one of his last poems,

  is really just a hospital for souls.

  When I get there, I will get there

  and it will not be complicated

  I am not that sick in Heaven.

  Whenever I wake up missing my friends, I visit them through their words and watercolors.

  My immune system keeps misfiring. I still push my body too hard. I am hospitalized for complications of the flu that turn into sepsis. I am forced to accept my limitations and slowness—a lesson I must learn again and again. I get discouraged. I stop writing these pages. I rest, recover, begin again.

  It takes a good while longer, and a couple more detours, but Jon and I eventually make a real go of things. We move to a quiet, tree-lined block in Brooklyn. On our first night there, we celebrate, eating takeout by candlelight amid piles of moving boxes. I unpack my double bass, dust it off for the first time in years, and Jon warms up the piano. Together, we begin to play.

  My brother, now a fourth-grade teacher, lives in my old apartment in the East Village and has repainted the walls with his own stories and memories and heartbreaks. My parents relocate to Tunisia temporarily, and I return to visit for the first time since college. I eat my aunt Fatima’s famous couscous, spend time with my cousins, and celebrate the New Year in the Sahara. My father is getting ready to retire and when he does, he plans on embarking upon a cross-country road trip of his own, following my same itinera
ry. My mother, no longer a full-time parent or caregiver, has turned her energies back to painting and has resumed her career as an artist, attaining successes and a sense of agency that she assumed had been foreclosed long ago.

  There are certain dreams I can’t dream, for I never thought them possible. The week after my thirtieth birthday, I complete a half marathon. I return to Ojai, where I spend three months as a visiting teacher at Katherine’s school. Inspired by the experience of meeting Lil’ GQ, I write my first reported feature, not from bed, but from the field, about a prison hospice in Northern California. One afternoon, while procrastinating on these pages, I come across a “for sale” ad for a 1972 Volkswagen camper van the color of Sunshine. I write to the owner, a retired U.S. Air Force officer, who it turns out is receiving treatment at Sloan Kettering and recognizes my name from my New York Times columns written all those years ago. “Name a price and she’s yours,” he says. “Nobody ever bought one of these old ladies to be practical.”

  I keep the van at the cabin in Vermont and attempt to learn how to drive a stick shift. I fumble with the gears and pound the steering wheel in frustration as I stall out too many times to count. Jerking along the back roads near the cabin, I shift from first to second gear, the engine spluttering and whining as I drive up to the top of a nearby mountain still dusted in snow. As I reach the summit, the road turns smooth and flat. Cruising along a dirt path, I pick up speed, passing evergreens fanged with ice. Oscar sits in the passenger’s seat, watching the trees blur past. In the icebox I’ve packed a smoked chicken, a bottle of wine, and a book. It’s been a while since we’ve been able to get away, and for the next few days, it’s just the two of us. Wherever I am, wherever we go, home will always be the in-between place, a wilderness I’ve grown to love.

  For Melissa Carroll and Max Ritvo—the ink behind it all.

  And for all the others who crossed the river too soon.

  ACKNOWLEDGMENTS

  To Richard Pine, king among agents, and Carrie Cook, who helped me turn a bar napkin into a book—I am endlessly grateful. To my editor, Andy Ward, for his enormous care, kindness, and guidance, and to the late legendary Susan Kamil, for believing from the beginning. To my old pal and assistant editor, Sam Nicholson, and to the many other wonderful people at Penguin Random House: in particular, Marie Pantojan, Susan Mercandetti, Carrie Neill, and Paolo Pepe, as well as my foreign editors, especially Andrea Henry. Special thanks to Ben Phelan, who shouldered the challenging task of fact-checking this book, and did so with unparalleled sensitivity, compassion, and good humor.

  A great debt is owed to Lizzie Presser, my dearest friend, who always reads first and who championed this book long before I had the confidence to write it. To Carmen Radley, brilliant quarantine comrade, writer, and reader, who ushered me to the end. To the matchless Lindsay Ryan, who made these pages immeasurably better, and to Vrinda Condillac, who saw what was needed and helped me untangle the threads. And many thanks to early readers and to my mentors: Glenn Brown, Lisa Ann Cockrel, Chris McCormick, Jenny Boully, Peter Trachtenberg, Esmé Weijun Wang, Lily Brooks-Dalton, Katherine Halsey, and Bonnie Davidson. To my writing group for being stellar company during this sometimes lonely, always arduous endeavor: Jordan Kisner, Jayson Greene, Frank Scott, and especially Melissa Febos and Tara Westover, who offered invaluable advice.

  For the gift of time and quiet when it was most needed, I am grateful to the Ucross Foundation, Kerouac Project, New York Public Library, Anacapa Fellowship, and Stone Acres Farm, as well as to the cabin in Vermont, where many of these words were written. To the Bennington Writing Seminars, for providing a beloved community. Deep thanks to Christina Merrill for her exceeding generosity, to Gideon Irving for entrusting me with his car, and to the Presser, Nelson-Greenberg, and Ross families for gifting me haven and support when I needed it most. My thanks also to Erin Allweiss, Marissa Mullen, Lindsay Ratowsky, and Maya Land, for their tireless efforts behind the scenes.

  A last, deep bow to those who make my world possible: To my parents—my deepest love and most profound thanks—and to my brother, Adam, for quite literally saving my life. To Dr. Holland, Dr. Navada, Dr. Silverman, Dr. Castro, and Dr. Liebers, and to my nurses Alli Tucker, Abbie Cohen, Sunny, and Younique, as well as the countless other healthcare professionals, for without them, I wouldn’t be here. To Jon Batiste, who taught me to believe again and who braved with grace and patience the long stretches I had to be away. To Tara Parker-Pope, who gave me my first break, and to my professor Marty Gottlieb, for the introduction. To Mara, Natalie, Kristen, Erika, Michelle, Lilli, Behida, Ruthie, Azita, Kate, Sylvie, and the many other women, too numerous to name here, who lift me up with their friendship. And, finally, to my road guardians, for opening their homes and sharing their stories with me. Thank you for guiding me through the most difficult passage.

  ABOUT THE AUTHOR

  Suleika Jaouad is an Emmy Award–winning writer, speaker, cancer survivor, and activist. She served on Barack Obama’s President’s Cancer Panel, and her advocacy work, reporting, and speaking have been featured at the United Nations, on Capitol Hill, and on the TED Talk main stage. When she’s not on the road with her 1972 Volkswagen camper van and her rescue dog, Oscar, she lives in Brooklyn.

  suleikajaouad.com

  Facebook.com/​SuleikaJaouadPage

  Twitter: @suleikajaouad

  Instagram: @suleikajaouad

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