Between Two Kingdoms: A Memoir of a Life Interrupted

by Suleika Jaouad

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.

Medicine, I was learning, was more of an art than a science in cases like mine.

Although I wasn’t planning for a baby anytime soon, preserving my ability to have one felt like my only lifeline to an uncertain future.

On some level, I was starting to realize that the life I’d had before was shattered—the person I’d been, buried. I would never be the same.

Suffering can make you selfish, turn you cruel.

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.

I understood now why so many writers and artists, while in the thick of illness, became memoirists. It provided a sense of control, a way to reshape your circumstances on your own terms, in your own words.

“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.

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.

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.

We are born needing care and we die needing care, but it was hard for me to accept how helpless I’d become.

My quest in the last few months had been to become an adult, as if adulthood were a test I could study for, fill in the right answers, and ace.

We were learning that sometimes the only way to endure suffering is to transform it into art.

People often described cancer as a journey. But we didn’t want to go on some bullshit “cancer journey”—we wanted to go on a real journey, one that would rocket us from the cancer ward’s sounds, smells, and sad plastic plants, and plunge us into the reckless lives we wished we were living.

As a patient, there was pressure to perform, to be someone who suffers well, to act with heroism, and to put on a stoic façade all the time.

To be a patient is to relinquish control—to your medical team and their decisions, to your body and its unscheduled breakdowns.

Grief is a ghost that visits without warning. It comes in the night and rips you from your sleep. It fills your chest with shards of glass. It interrupts you mid-laugh when you’re at a party, chastising you that, just for a moment, you’ve forgotten. It haunts you until it becomes a part of you, shadowing you breath for breath.

I had always believed in a world where love could overcome anything. I believed love could redeem suffering and transform the brutality of a life into something bearable, even beautiful. But I was losing trust that the next time things got hard, he wouldn’t up and leave again. I was losing faith in us.

When you survive something that was thought to be unsurvivable, the obvious is gained. You have your life—you have time. But it’s only when you get there that you realize your survival has come at a cost.

The way I was beginning to see it, I had a choice to make: If I wanted a shot at finding my place among the living, I would need to stop fighting for a relationship that had flatlined long ago. I would need to start fighting for myself.

“EVERYONE WHO IS born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick,” Susan Sontag wrote in Illness as Metaphor. “Although we all prefer to use only the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.”

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.

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.

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.

learning how to be on my own feels like a necessary first step to whatever is next. I need to trust that I can be independent. I need to become my own caregiver. It took me a while to say I was a cancer patient. Then, for a long time, I was only that. It’s time for me to figure out who I am now.

I decide to trust that what feels unknown and frightening will soon feel familiar and safe.

It isn’t so much that I’ve stopped being afraid but that my fear is slowly being supplanted by a yearning for freedom.

They taught me that, when life brings you to the floor, there is a choice: You can allow the worst thing that’s ever happened to you to hijack your remaining days, or you can claw your way back into motion.

To stay is to consign myself to refrains of brokenness forever. To leave is to create a new story of self. Really, it isn’t much of a choice.

“Before, if you had asked me who I was, I would have identified as an athlete,” she says softly. “But now, I’m not so sure, because cancer does a weird thing to you. It takes who you are and what you think you know and throws that all in the trash.”

There is no restitution for people like us, no return to days when our bodies were unscathed, our innocence intact. Recovery isn’t a gentle self-care spree that restores you to a pre-illness state. Though the word may suggest otherwise, recovery is not about salvaging the old at all. It’s about accepting that you must forsake a familiar self forever, in favor of one that is being newly born. It is an act of brute, terrifying discovery.

The notion that reentry is an ongoing and difficult process is usually referenced in the context of veterans of war or the formerly incarcerated, not to survivors of illness.

But he, too, is still finding his way, still struggling to carry the collateral damage of illness, and suddenly I realize: We may always be.

My illness has humbled and humiliated and schooled me, offering knowledge that might otherwise have taken decades for my pre-diagnosis, self-absorbed twenty-two-year-old self to accrue. But that old Hemingway saw—“the world breaks every one and afterward many are strong at the broken places”—is only true if you live the possibilities of your newly acquired knowledge.

We call those who have lost their spouses “widows” and children who have lost their parents “orphans,” but there is no word in the English language to describe a parent who loses a child. Your children are supposed to outlive you by many decades, to confront the burden of mortality only by way of your dying. To witness your child’s death is a hell too heavy for the fabric of language. Words simply collapse.

It is the certainty of never that hurts most.

To quell my own fears, I needed space from theirs.

It’s only now that you’re better that I’m allowing myself to feel my fear—that I’m listening more to what the whole thing has meant.”

“You can’t keep going and doing the same things as before when everything in your life has been turned upside down,” my mom says. “I haven’t yet found a journey like the one you’re on to help me refocus.”

I am trying not just to accept my body’s limitations for a change, but to savor the breaks I have to take because of them. These pit stops end up being some of my favorite moments on the road—shifting me out of my swirling mind and into the present, anchoring me in this strange new body, and in new places where I otherwise would never have gone.

It’s impossible to confront something so vast and not feel awed. My diagnosis produced a similar effect, and made me wonder how it was I’d ever failed to notice the beauty of my surroundings before or believed that life could be unremarkable.

There’s an old Tunisian saying that your entire life is inscribed on your forehead but it’s as though everything that came before my diagnosis has been scrubbed from mine. I don’t know how it happened, or if it could have been prevented, but at some point in the last few years my entire existence, my identity, even my career, became linked to the worst thing that ever happened to me. My scope of interests shrank in direct proportion to my world. A year out of treatment, illness continues to dominate the narrative and seems to squeeze out the possibilities of anything else.

To learn to swim in the ocean of not-knowing—this is my constant work.

Oceans.

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.

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.

I still couldn’t make sense of why some people suffered and others did not, why some lives were heaped in misfortune while others were spared. To be young and sick was unfair, so much so that it had felt unbearable in moments. I had always understood, at least in theory, that to rage against all this was pointless—poisonous. But still, I compared my limitations to the liberties of others. I wanted their freedom so badly that I hated them for it.

But it is hard to rage at something as nebulous as cancer. You have to steer the trajectory of your anger, ideally toward a canvas or a notebook, before it hurtles toward a human target—but

Untamed fear consumes you, becomes you, until what you are most afraid of turns alive.