Part 1: Life, Interrupted with Suleika Jaouad

the hardest questions we fine as humans. When she first started working on her memoir, a friend told her about a saying they'd heard. If you want to write a good memoir, share what you don't want other people to know about you. If you want to write a great memoir, share what you don't want to know about yourself. Suleka wrote a great memoir. The title of her book, Between Two Kingdoms, a Memoir of a Life Interrupted, is a

nod to the writer Susan Sontagg. Sontag wrote that everyone who is born holds dual citizenship in the Kingdom of the well and in the Kingdom of the sick. Suleka writes about her experience in both these kingdoms and the difficulty of navigating the space that lies between them. Her story begins in twenty ten. She just graduated from Princeton University and had big dreams for the road ahead.

I buys met. And so what I decided to do was to take a job as a parent legal and a law firm in Paris, and to take the time I needed to find my way. And you know, there was this sense of endless time, as there often is when you're young. Time to figure out what you want, time to figure out who who you want to become, and how to plot the distance between you and that person.

And so I was brimming with joy, bringing with a little bit of anxiety about finding my way forward, but it was really this sense of being on the edge of something exciting. Yeah.

treat that, and then send me home. And so it took about a year and a half until I was about six months into my time in Paris, and I had grown so pale that my skin looked almost translucent, and I was so exhausted that I was drinking, you know, up to eight espressos every day to get through my job at the law firm, and spending my lunch hour napping in the office closet. That it began to occur

to me that something was deeply wrong. But as is often the case, especially for young people, especially for women, the challenge of getting an actual diagnosis proved to be so much harder than I possibly could have imagined. You know, we have so many examples throughout history where a woman's physical affliction is attributed to their mind, to a sense of hysteria, and that's very much how I felt. I kept saying, I think something is wrong. I've never been

sick in my life. I've never even broken a bone, and I can barely function. I so often would find myself on an exam table, feeling like I wasn't being taken seriously, feeling like I wasn't being believed. A doctor I saw prescribed anti anxiety medications to me. Another that hospitalized me for a week and ran every test they could think of release me with a discharge of burnout syndrome.

And I felt this sense of intimidation that I think many of us have felt when we're in a doctor's office, the sense that they had the medical degrees, not me. Who was I to question their judgment? And so at the end of this confusing year and a half, ultimately I found my self in an emergency room in Paris with blood counts so low that I had to immediately get on a plane back home to Upstate New York because if they dropped any lower, I wasn't going to

be able to fly at all. And it was shortly thereafter that I learned I had been diagnosed with an aggressive form of leukemia. And it was one of those bifurcating moments in a life where even though at twenty two I couldn't really wrap my head around what this illness meant for me. I didn't have friends who had suffered from cancer, and I didn't really have anything to sort of give me an indication of what it was

going to be like. But I knew immediately that whatever sense of innocence I've had had been buried and everything was going to be different from there on out.

be like. I packed a suitcase full of books like War and Peace, and I cheerfully announced my parents that I was going to use this summer in the hospital to read through the rest of the Western canon. I thought I was going to write a book. I thought it was going to do all these things, and of course I didn't end up doing any of those things. And it was a slow crushing realization that to hold on to the person I'd been, and all of the dreams and plans that that person had, was only going

to be a recipe for defeat and discouragement. And by the end of that summer, I had lost about forty pounds. I had lost on my hair and my eyelashes, my eyebrows. But worse than that, I had learned that the standard chemotherapy I'd been doing all summer not only hadn't worked, but that my leukemia was even more aggressive, and that my only option was going to be a clinical trial.

me crumble. It felt like a breach of contract with the natural order of things, because youth and health are supposed to go hand in hand. And that began a very different chapter where I really retreated into myself. I had this window overlooking Central Park from my hospital room, which was a great privilege to have landed in this

room by chance. And I remember closing the blinds because what had once brought me comfort to be able, you know, to see the world continuing to move, suddenly felt like a reminder that whatever future I'd imagine for myself, not only wasn't going to happen in the way that I'd planned, but that I might not get to exist in the future at all. And so for the next couple of months, I sank into a pretty deep well of depression. I no longer wanted to have visits from friends, I stopped reading,

stopped making plans. I instead filled my days by trying to set the world record for the number of Gray's Anatomy episodes watched consecutively. And I was angry. I remember, you know, being told stories of cancer survivors who had gone on to do extraordinary things, and feeling such rage at the idea that anything about what I was living could be useful, could be turned into anything other than what it was, which was a deep sense of isolation and a deep sense of fear about what was to come.

to kill me? Is this going to save me? But I would say things to my parents sometimes when I felt I was really in a low down place, that you know, maybe I was better off stopping the clinical trial, doing some kind of make a wish bucketless trip to some tropical island and smoking pot and doing whatever else it was that I wanted to do, And more than anything to really savor whatever time I had left with them, with my friends, with my loved ones, rather than torturing

myself with these treatments. But I had this amazing oncologist, the late doctor James Holland, who, when I was at my most defeated place, began during his lunch hour coming to my hospital room with his paper bag of sandwiches and sitting by my bed and talking to me, not about my latest biopsy results or blood counts, but he would ask me what I majored in in college, what my most daring dreams were, what I wanted to do

after all of this was over. And it always confused me because I felt like, he's this busy man, you know, why is he doing this? And I realized now that he was reminding me of who I was outside of these hospital rooms and trying to keep that sense of hope alive for me.

a hard worker. What mattered to me was simple. I wanted to spend as much time with my loved ones as I could, and I think what it did for me was that it released me from any sense of self imposed or external expectation. For the first time in my life, I was free of expectation for the first time in my life. My parents were overjoyed and would pat me on the back if I managed to walk half a block to come home. That's how low the

bar was set for me. And what surprised me is that I felt a real sense of liberation to do the things I wanted to do simply because they nourished me, because they felt life giving, and not because they were the things I thought I should be doing. And so, for the first time in my life, I began creating

entirely for myself. I began keeping a journal that I used as a sort of reporter's notebook, where I would you write about the different patients I was befriending, you know, the guy down the hall who was trying to encourage everyone to mount a hunger strike because our meal trace kept arriving with the food still frozen. I wrote about the nurses and the gossip that i'd overhear by their station.

time to just try things for the health trying them. Yeah, to read things because they piqued my interests and I didn't know why. And I had never had that luxury of time, which is an irony, because of course, you know, time felt more precious and fleeting than ever before. And in writing in that way, I wasn't concerned with writing well or beautifully or even gramatically. I was really interested in pushing myself to dig for the truth beneath the truth,

beneath the truth. I wasn't trying to impress anyone. I wasn't trying to sound smarter than I was to imitate anyone. I was just following the threat of curiosity wherever it led me. And so because I was so mired an uncertainty. I had no idea what the next couple of hours were going to bring, let alone the next day or the next week. And because initially that writing was just for myself, for the first time in my life, I felt like I had finally found my voice.

perspective of someone who had survived. And I started to notice that there was this kind of hero's journey arc to illness narratives, where you return from the thing that nearly killed you better and braver and stronger for what you've been through, and that couldn't have applied less to me. I was terrified, I was struggling, I was isolated, and I wanted to put all of that into ink. And so what I began to do was to write about the very things that felt impossible to talk about. I

wrote about the infertility caused by my cancer treatments. I wrote about the experience of falling in love while falling sick. I wrote about the in betweenness of young adulthood. I wrote about navigating our healthcare system and all of its complexities. I wrote about the sense of guilt and the feeling of being a burden that so often comes when you're acutely sick. I wrote about all of it. Tony Morrison said, if you want to read a book and it doesn't exist,

then you must write it. And so I think, in my own small way, that was my version of doing that. And so I decided, because I was pretty limited within my options, to start a blog, a really simple blog, and it felt so good to have a job that I could do other than merely being a patient. And to my great surprise, the blog was passed around and the journalism professor of mine sent it along to an editor at the New York Times, and she called me up and asked if I might want to publish an essay.

And because I was facing the possibility of imminent death, I shot my shot and I said, I don't want to write an essay. What I'd like to write is a weekly column written from the trenches of that uncertainty where you don't know how the story is going to end. And I went on and on and on, and at the end of it, to my great surprise and then terror her, she said, okay, we will try it for

a couple of installments and see how it goes. And I had never been published before, I never had a byline, and certainly not in a place like the New York Times. And what began as elation immediately turned to a sense of, Oh shit, how am I.

bumping up against my limitations. But it was also an exercise for me, a first lesson really in not only accepting those limitations, but trying to find creative workarounds. And it occurred to me as I started to look to examples throughout history of artists and writers who found themselves in similar situations, that the limitations could actually be creatively

generative themselves. So I was obsessed with Free to Callo, who had a similar age, had, of course, found herself in bed and began making these beautiful, heartbreaking self portraits that led to her becoming one of the most well known artists throughout time. I read Sarah Manguso, I read Lucy Grayley, and I began to get curious about how my limitations will challenging were actually twisting my mind out

of its usual rut. And I began to realize that, really, you know, survival is its own kind of creative act. When you have chemo sores in your mouth and throat that make it impossible to speak, you have to find new ways to communicate. When you're confined to a bed, you have to use your imagination to travel when you can't move, you have to find new ways of entertaining yourself. And so I began to get curious about that and open to whatever it was that emerged.

that I hadn't felt before. I heard from a young man down the hallway from me in the transplant unit who was going through the same thing I was going through, And I never met anybody my age with my same illness. And I'll never forget one day when I was being wheeled down the hall to get a CT scan, I paused at this door and we couldn't meet because the

germ risk was too high. But I knocked on the window and he waved and I waved, and just that tiny little moment, that sense of being seen and known and that you're not alone, and that particular kind of suffering, gave me a sense of hope that fueled me in those coming weeks. What surprised me most though, was I wasn't just hearing from young people with cancer. I was hearing from all kinds of people dealing with all kinds

of life interruptions. And one of the very first letters I received was from a man by the name of Quinn Jones who was on death row in Texas, and he had read a column where I'd written about that sense of being in solitary confinement as I was, that sense of waiting for a verdict that is going to determine your future. For me, of course, you know that verdict meant biopsy results and all kinds of other tests.

And he wrote me this beautiful letter in long hand cursive, and he explained that he had been on death row for more than half his life, from the age of eighteen, and that even though, of course our circumstances were different, he understood how it felt to be confronting your mortality and waiting to find out where the gavel landed. And it was just one of the most humbling, dizzying experiences

I've got had. But more than that, you know, I think there's a way in which, when you're in pain, that pain can turn you selfish, and in a way it's necessary. You have to be preoccupied with what's happening with your body and accounting how you're feeling, and you know,

making sure that you're keeping yourself alive. But in the act of writing, in the act of daring to be vulnerable, which had felt frightening and uncomfortable, I realized that deep, unvarnished vulnerability creates a reverberation where vulnerability begets vulnerability begets vulnerability.

And so in writing my story, I was getting the privilege of hearing so many stories from so many different people, from so many different walks of life, and it was I think a much needed reminder for me that we all have these life interrupted moments, these things that happen that bring you to the floor. And there was a kind of equalizing sense to that, a sense that I wasn't alone, and that I wasn't special, and that I was part of, you know, the human experience.

to do that for your sake, for your Olympics. I know, no suffering lipings, but I had been experiencing just one of the most acute, crippling bouts of anxiety that I had ever experienced, and You're your column was so transformative

for me. So like, thank you, I guess in hindsight for the way that you made me feel in that moment and for what you did for young like twenty something my I mean, I can't imagine the number of lives that you be touched through the column, but just a personal thank you from me for that.

And that is the moment that I'm always looking for when I'm reading, and it's the moment I'm always striving for when I'm creating and writing.

longer assume structural stability. I didn't feel safe in my body. Every cough sparked a fear of relapse. Every voicemail from the doctor's office would send my pulse racing, and I think, you know, more than anything. When I was finally done, what that meaning schemo. When the port in my chest was removed, I expected to feel a deep sense of gratitude and relief, and more than that, I expected to quickly and organically fold back into the world of the living.

But that didn't happen, at least not in the way that I'd hoped. I was really struggling. I had spent at that point four years in the kingdom of the sick that had been my whole world, and I had figured out, you know, how to build a home for myself there. I'd even curved out a career within its conscience. And to my surprise, it was the outside world that suddenly felt scary and overwhelming to me. I was no longer a patient and I couldn't go back to twenty

two year old me. But I had no idea who I was and how to find my way forward, and I felt a deep sense of shame. Because I was alive. I was lucky to be alive. I knew that so well. Out of the ten young cancer comrades as we called each other that I befriended during my time and treatment, only three of us were still there, and I felt that I should move on with my life. And as it turned out, moving on begin to feel more like a mirage or a myth, because we don't get to

compartmentalize the most painful parts of our past. We can't, you know, skip over the hard work of healing and graving, and so instead I began the long journey not of moving on, but of trying to find my way forward, to move forward with all that had happened.

of compassion or simply that they can lend you. When you tell people I'm a recent cancer survivor, you don't what they say is congratulations, congratulations, right, I mean, that's that's the problem, congratulations, whereas the reaction maybe, I mean it should be maybe congratulations, but like maybe not and if it is congratulations and is congratulations, and let's have a discussion, you know.

traumatic stress disorder. Because I had been so focused on surviving for four years, it hadn't even occurred to me that there's a wide gap between surviving and living, and that while I was an expert at surviving, I didn't know how to live. And in a strange sense, it was the hardest, most isolating transition because I didn't have treatment protocols, I didn't have doctors telling me what to do.

I was entirely on my own to figure out how to make this transition and so at first, I, almost like an anthropologist might, was like looking around at my friends and thinking to myself, what is a normal, healthy twenty six year old women do and trying to emulate that, which,

of course, you know, wasn't working. I was still healing physically from this experience, but more than that, emotionally and spiritually, And it took me a while to understand and acknowledge to myself that the hardest part of this experience was going to be its aftermath, because that's where my own

work was going to begin. And as much as we think of recovery as some sort of gentle self care spree involving you know, massage, therapy and you know whatever else, for me, at least it was truly this kind of terrifying, brute act of discovery.

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a very special thanks to Jimmy Lee. You can follow a Slight Change of Plans on Instagram at doctor Maya Schunker.