Between Two Kingdoms: A Memoir of a Life Interrupted

by Suleika Jaouad

I was in love with the idea of being in love.

It’s a funny thing, coming home. Everything smells the same, looks the same, feels the same, but you are different; the contrast between who you were when you left and who you are now is heightened against the backdrop of old haunts.

But what scared me more than the transplant, more than the debilitating side effects that came with it, more than the possibility of death itself, was the thought of being remembered as someone else’s sad story of unmet potential. My most significant accomplishments as an adult had been fetching coffees and making photocopies as a paralegal, and doing my best to fight a disease I’d never wanted in the first place. I hadn’t done anything I was proud of yet. I had spent my twenty-three years on this planet preparing for a life: pulling all-nighters so that I could get the grades to receive a scholarship to a good college and, one day, have a career of my choosing; learning to cook for the dinner parties I told myself I’d throw one day; saving up my paychecks to be able to go on a long trip somewhere; talking about all the writing I wanted to do without ever actually working up the courage to put any of my writing out into the world. I knew it was likely too late for most of these things, but I was determined to seize the days I had left. Facing my mortality had stripped away any concerns about being cool, and it did not feel embarrassing or too earnest to say that I hoped to make

After almost one year spent in isolation, shuttling between the hospital and my parents’ house in Saratoga, I was done hiding. “It is always what is under pressure in us, especially under pressure of concealment—that explodes in poetry,” Adrienne Rich wrote. I wanted to understand what had happened to me, to excavate its meaning on my own terms. I wanted the last word to be mine. So, I decided

“Write,” instructs Annie Dillard, “as if you were dying.” We are all terminal patients on this earth—the mystery is not “if” but “when” death appears in the plotline. With my transplant date looming, her words rang loudly.

On March 29, 2012, my column and an accompanying video series—called “Life, Interrupted”—was scheduled to make its debut. Just a few days after that I would receive the bone marrow transplant. The confluence of these impending milestones was dizzying: a dream and a nightmare dancing the tango.

For the person facing death, mourning begins in the present tense, in a series of private, preemptive goodbyes that take place long before the body’s last breath.

You are a young woman, I am an old man. You are looking ahead, I am looking back. It is likely that we have only our mortality in common, he wrote. Meaning is not found in the material realm—dinner, jazz, cocktails, conversation or whatever. Meaning is what’s left when everything else is stripped away.

My time in India has given me a glimpse into how travel can hurtle you out of old ways of being and create conditions for new ones to emerge. It’s becoming clearer and clearer to me that I need to leave the familiar, but I don’t want to do it entirely alone—I want to seek out others who can offer perspective into my predicament, who can help guide my passage. By the time I finally pass my driver’s test, the next step is obvious: I am going to go on a road trip and visit those who sustained me when I was sick.

LIVE FREE OR DIE reads a big blue sign as I cross into New Hampshire.

“Slowly, with enough patience and persistence, you’ll become immersed in life again and, let’s face it, life can be so good. But I think it’s most important to find someone who has the wherewithal to stick it out with you. I owe more to my wife—” His voice catches. “Well, what I owe her, it’s beyond expression.” “Sounds like I need to find myself a Meral,” I say.

Seeing them together makes me want to open myself up to the future, but hard as I try, I still can’t imagine myself growing old, alone or with anyone else. To learn to swim in the ocean of not-knowing—this is my constant work. I can’t know if there is a rogue cancer cell lurking somewhere in my marrow. I can’t predict if my body will scuttle commitments to myself or to others. I’m not even sure I want to settle down in a stable, more conventional way. But I’m beginning to understand this: We never know. Life is a foray into mystery.

Trauma has a way of dividing your view of the world into two camps: those who get it and those who don’t.

I was cheered by their visit, but after they left, I felt down again. Seeing them—so happy together in spite of everything they’d been through—was proof that it was possible for love to survive a prolonged illness. It showed me how things could have worked out differently for me and Will, and raised painful questions about why they didn’t. —

As we live longer and longer, the vast majority of us will travel back and forth across these realms, spending much of our lives somewhere in between. These are the terms of our existence. The idea of striving for some beautiful, perfect state of wellness? It mires us in eternal dissatisfaction, a goal forever out of reach.

To be well now is to learn to accept whatever body and mind I currently have.

THE WAY WE heal does not always look like healing.

Move on already, I tell myself. Get over it! But the more mileage I put between Will and me, the more preoccupied I become by what happened to us. The unraveling of our relationship seems worse to me after seeing Bret and Aura find a way to thrive together, even plan for a baby, despite the ongoingness of his health struggles.

Later that night, once the horses have been returned to their stalls, the dogs walked, the dinner eaten, and the dishes washed, I retreat to the spare bedroom. Sprawled across the bed, I open my journal and begin to revisit all the ways I’ve tried to do the opposite of Katherine—to avoid actually experiencing pain. Numbing out on everything from morphine to marathons of Grey’s Anatomy. Denying that it’s there at all. Refusing to let people in. I see now that these tactics have not rid me of my sorrow, just transmuted it, delayed it. What if I stopped thinking of pain as something that needs to be numbed, fixed, dodged, and protected against? What if I tried to honor its presence in my body, to welcome it into the present?

I used to think healing meant ridding the body and the heart of anything that hurt. It meant putting your pain behind you, leaving it in the past. But I’m learning that’s not how it works.

Healing is figuring out how to coexist with the pain that will always live inside of you, without pretending it isn’t there or allowing it to hijack your day. It is learning to confront ghosts and to carry what lingers. It is learning to embrace the people I love now instead of protecting against a future in which I am gutted by their loss. Katherine’s experience and her insight sit with me. She went through something she thought she could never survive and yet here she is, surviving. “You have to shift from the gloom and doom and focus instead on what you love,” she told me before bed. “That’s all you can do in the face of these things. Love the people around you. Love the life you have. I can’t think of a more powerful response to life’s sorrows than loving.”

Jon has been teaching me that sometimes all you can do is show up. And when things are hard, to keep on showing up. —

“Every day is a gift,” he says.

I make a pact with myself and send it off into the desert: May I be awake enough to notice when love appears and bold enough to pursue it without knowing where it will lead.

“We travel with the agricultural seasons,” JR tells me when I ask how they can afford to keep their gas tank full. “We live on very little and whenever we need cash, we work as farmhands and migrant laborers for a month or two. Fruit harvesting, dairy farming, haying horses, digging ditches—you name it, we done it.”

they seem to have found a purpose in the endless promise of the open road. They strike me as proof that home doesn’t need to be a place or a profession, that I might find it wherever I go.

idle theory—their philosophy that our lives should be less busy, more filled with leisure, with days just like this.

Gazing up at the Milky Way, I remember when all I wanted is what I have in this moment. Sitting on the kitchen floor of my old apartment, sicker than I’d ever felt, my heart fractured into ten thousand tiny pieces, I needed to believe that there was a truer, more expansive and fulfilling version of my life out there. I had no interest in existing as a martyr, forever defined by the worst things that had happened to me. I needed to believe that when your life has become a cage, you can loosen the bars and reclaim your freedom. I told myself again and again, until I believed my own words: It is possible for me to alter the course of my becoming.

I am alive and as well as I could ever hope to be.

I have been entrusted with a life that I am making into my own. Tonight, this feeling is the closest I’ve felt to being at home within myself.

want to be released from what won’t let me go. I want uncomplicated joy. But I see now that, without realizing it, I’ve been waiting for permission—from Melissa, from Will, from all the people who have disappeared from my life before a sense of closure could be reached. I want their blessings to fall in love again, to dream a new future, to move forward. I keep waiting for some kind of sign, or reassurance that it’s okay to go entire days without thinking of them—that it’s necessary to forget a little if I am going to live. No matter how many apologies, acts of contrition, or sacrifices I offer up, I’m realizing I need to accept that things may never feel fully resolved—with the living or the dead. —

This man has already been judged for what he has done, and that’s not why I came here, anyway. And

“We tell ourselves stories in order to live.” Except that in the case of Lil’ GQ, he is telling himself stories in order to ease the passage of death.

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

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.

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.

Wherever I am, wherever we go, home will always be the in-between place, a wilderness I’ve grown to love.