Suleika Jaouad penned her Emmy award-winning New York Times column “Life, Interrupted” from her hospital bed after being diagnosed with cancer at 22. Her memoir, Between Two Kingdoms, was an instant New York Times bestseller and is one of Indigo’s best books of the year. She speaks to us about the four years she spent in the kingdom of the sick and how she found her place among the “living” again after emerging from treatment. “I wasn't a cancer patient anymore, but I had no idea who I was and no idea how to move forward with my life.” Listen to find out how she’s continued on and inspired people around the world in the process.
Suleika Jaouad penned her Emmy award-winning New York Times column “Life, Interrupted” from her hospital bed after being diagnosed with cancer at 22. Her memoir, Between Two Kingdoms, was an instant New York Times bestseller and is one of Indigo’s best books of the year. She speaks to us about the four years she spent in the kingdom of the sick and how she found her place among the “living” again after emerging from treatment. “I wasn't a cancer patient anymore, but I had no idea who I was and no idea how to move forward with my life.” Listen to find out how she’s continued on and inspired people around the world in the process.
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Heather Reisman:
Hi, I’m Heather Reisman, and this is Well Said, a podcast on the art and science of living well. This podcast is brought to you by Indigo.
Suleika Jaouad:
You know, I think when our lives are upended there’s a kind of clarity that comes, where we see very clearly what is working and what is not.
Heather Reisman:
As Indigo’s Chief Booklover, I am in constant search of a book that will capture me within the first page and hold me firmly in its grip until I’ve forgotten how long I’ve been reading. And this is precisely what happened to me with Between Two Kingdoms—a heart-stopping, heart-warming memoir by Suleika Jaoudad.
So I’m delighted, really delighted, to be welcoming Suleika to our podcast today. You might know Suleika from her New York Times column, which became an Emmy Award-winning series. It was called “Life Interrupted.” She began writing that column from her hospital room after being diagnosed with cancer at the age of 22. Between Two Kingdoms is Suleika’s story of her illness, how it has changed her and her life, and how she began and is redefining her identity as a survivor of this life-threatening medical journey.
Suleika, thank you so much for joining us today.
Suleika Jaouad:
Thank you, Heather. It’s such a joy. And I’m pretty sure Chief Booklover is the coolest title ever.
Heather Reisman:
It’s absolutely my favourite title. I say, “If someone had asked me when I was a teenager, ‘What would be the title you would wish to have?’ this would be it.” So I really am living my dream.
Speaking of titles, I’d like to start by asking you about the title of your book Between Two Kingdoms. Where did the title come from? And for you, what exactly is it saying about your story?
Suleika Jaouad:
So, the title is a reference to a line by the brilliant Susan Sontag, who describes how we all have dual citizenship in the kingdom of the sick and in the kingdom of the well, and it’s only a matter of time until we use our passport to that other place. And so, you know, what ended up happening is I spent four years of my life firmly planted in the kingdom of the sick.
And at first I hoped it was just going to be like a short sojourn—that I wouldn’t need to unpack my bags. But as I began to accept that I likely was going to be sick for a long time if not for the rest of my life, however long that was, I made a home in the kingdom of the sick. I made friends with its habitants, with fellow cancer patients. I learned to speak fluent medicalese. And I think I always assumed that if I were ever lucky enough to be cured, I would somehow eagerly, and quickly, and organically fold back into the rhythms of living and that I’d return to the kingdom of the well. But that didn’t happen.
When I emerged from that experience, I found myself in between those two kingdoms, in a kind of liminal space. And that came as a great shock to me. Because, you know, when we talk about survivors, we often apply like the heroic story arc of, you know, you emerge from this experience and you’re better, and braver, and wiser for it. And you’re grateful to be alive. And when I emerged from my time in the kingdom of the sick, I had never felt more lost, more broken.
I was carrying the wreckage of those four years in my body, in my mind, in my heart. I was grieving friends that I had made—fellow patients—who died. I was grieving the loss of self. I couldn’t return to my pre-diagnosis self. I wasn’t a cancer patient anymore but I had no idea who I was, and no idea how to move forward in my life.
Heather Reisman:
Let’s go back to where you were right before your journey to the kingdom of the sick. What was your world like before everything changed?
Suleika Jaouad:
So it was 2010, I had just graduated from college. And, you know, I think like a lot of 22-year-olds, I was a little lost. But not in an unpleasant way. I didn’t really know who I was, but there was the sense that, you know, I had time. The future was kind of limitless with possibility in a way that felt both scary—because I didn’t know what it would hold—but also liberating—because I felt like I could take my time to figure that out.
So I ended up getting a job as a paralegal at a law firm in Paris, and moving abroad. And it was so exciting. I mean, what 22-year-old doesn’t want to live in Paris? And right before I left, I met this guy, very briefly. My first and only one-night stand. I hope that’s not TMI.
(laughter)
Heather Reisman:
I think it’s great, because of what happened. A one-night stand. OK.
Suleika Jaouad:
Yeah. And I get to Paris. And, you know, I’m eating lots of croissants. I’m doing whatever it is you do in Paris. My job wasn’t ideal but it paid my bills. And I started corresponding with this guy—who actually ended up coming to visit me. And at the end of that two-week visit, he returned to New York just to pack his bags and to move to Paris.
So it was this really, you know, exciting almost fairytale-esque time. And yet, at the same time, there was this undercurrent of something foreboding. For the last couple of months I’d had, you know, a mysterious itch. And it wasn’t some kind of metaphorical itch or quarter-life crisis. It was like a real maddening, you know, claw-at-your-skin itch. And I began to have other symptoms; although I didn’t think of them as symptoms necessarily.
I was tired all the time. And so, you know, I would get winded walking up a flight of stairs, so I told myself I needed to get a gym membership. I was pale, so I bought blush at the drugstore to add a little colour to my cheeks. And over the next couple of months I was getting sick all the time. And I’d go to see a doctor, and he’d give me an antibiotic and send me home or tell me to get some rest. And it went on like that for about six months until I was finally hospitalized for a week in Paris, and ultimately released with a diagnosis of something called “burnout syndrome.”
Now, I don’t have a medical degree, but something about that didn’t add up for me. And I had this sense that the different doctors I’d been seeing weren’t taking me seriously. But the truth was I don’t know that I was necessarily taking myself seriously.
Heather Reisman:
Because you’re 22, and at 22 you don’t get anything serious. Life is a big open road and it’s just going to be all great.
Suleika Jaouad:
Totally. And youth and health are supposed to go hand-in-hand. Although I think all of us at some point probably have the experience of seeing a doctor, or worrying that something might be wrong, and not being sure about how to push back, if it’s appropriate to push back at all. And that was certainly true for me.
But ultimately, I found myself in the emergency room. My blood counts had tanked. And a doctor told me that I needed to get on a plane immediately, back home to New York, because if my counts drop any lower I wouldn’t be allowed to fly at all. And shortly thereafter I got my actual diagnosis, which was for a very aggressive kind of blood cancer called acute myeloid leukemia, which, in my case, had a prognosis of about a 35 per cent chance of long-term survival.
Heather Reisman:
So you’re living in Paris. You’ve got a one-night stand turns into a deep romance. He moves into your gorgeous little apartment. And then boom, you’re back home. Phoof. What are those few days like? Like is it just you can’t even process?
Suleika Jaouad:
You know, strangely, my first reaction when I got my diagnosis was relief. And it was very fleeting, but I had spent the last couple of months feeling like something was wrong, wondering if I was, you know, losing it. If I was a hypochondriac. If fatigue was somehow evidence of my inability to cut it in the adult world. At that time I was taking naps in the utility closet at the law firm during my lunch break, because I was so tired. And so there was relief in actually having a diagnosis that I could utter and hopefully do something about.
But very quickly thereafter, the relief evaporated and it was replaced by the kind of slow-motion horror that you feel when everything in your world has been upended. And, you know, I never returned to Paris, I never returned to my apartment, I never went back to my job. And it was this sense of bifurcation—that my life had kind of been fractured. There was my life before and whatever was going to come after.
Heather Reisman:
The book actually would have had its origin in the column that you wrote in The New York Times—the “Life Interrupted” column. But I wondered how you had the energy to keep up writing a column with the onslaught of all that was coming at you—the medication, the emotional impact that would have had on you. Where did you find the reserve to write? And how did you actually make that happen? And I’m curious, too, about whether you wrestled with how much of this personal journey belonged in a column?
Suleika Jaouad:
Yeah, that’s such a good question. So let me clear and say that: that first year after my diagnosis I was not productive. I was angry. I spent about eight months of that first year in hospitals, setting the world record for number of Grey’s Anatomy episodes watched consecutively. That’s what I was doing: I was sleeping and watching television.
And I remember, you know, like reading memoirs of cancer survivors who had gone on to run ultra-marathons or just start non-profits. And I would feel such resentment, in a way, because it made me feel badly about the way I was dealing with my illness. And the truth was that I didn’t have the energy then—physical or emotional—to even begin to think of how to make something productive of my circumstances.
Heather Reisman:
Didn’t anyone say to you, “You’re being enormously productive; you’re surviving”?
Suleika Jaouad:
They did, you know. And people would say, “You’re so brave,” “You’re so inspiring.” But I think the hard thing, for me, was that it wasn’t something I had chosen. I felt like at that point I had spent my 22 or 23 years on the planet preparing for a life: working hard to get a scholarship to college, to studying languages so that I could travel. And I hadn’t gotten to do any of those things.
And so ultimately, in the lead-up to my bone marrow transplant—which is a really risky procedure with a high mortality rate—something snapped for me. As the poet Adrienne Rich wrote, “It’s what’s under concealment that explodes into poetry.” And after a year spent living between my childhood bedroom and hospital rooms, I didn’t want to hide anymore.
And I began to think of how I might return to that first kind of dream that I had when I graduated from college, which was to become a journalist. And of course, you know, there was no possibility of being able to travel the world or to interview anyone. But I began to think about what I could write and report on from the frontlines of my hospital bed. And so that’s how it started.
Heather Reisman:
It feels like it just seemed important for you to have some sense of purpose. And you know, I have this image of you just reaching from where you are toward the kingdom of the well, despite everything that’s happening to you.
Suleika Jaouad:
I think the other thing that began to shift was my conception of time. Time no longer felt limitless. It felt very finite. And it almost, you know, and the lead-up to that bone marrow transplant was like a carpe diem countdown. And so I actually pre-wrote 13 of the columns that would later appear in The New York Times in the two months leading up to my transplant.
And then once I had my transplant, it was incredibly challenging to write. I would write in like five- or 10-minute bursts, staggered throughout the day. But at the same time, it felt so good to have a job to do other than just being a patient—to be able to start to carve out an identity for myself that wasn’t tied to the worst thing that had ever happened to me.
And there’s a photo of me in the bone marrow transplant unit. And I have a vomit bucket under one arm, and my laptop on my knees, and I’m crying. Not because I’m about to undergo this terrifying procedure but because I’ve missed a deadline. And it was important for me, you know, to have anxieties about things that didn’t have life-or-death stakes. It felt really healthy. It gave me a sense of purpose.
Heather Reisman:
Your book is all about the metaphorical journey between the kingdoms of the sick and the well. But I want to talk about a journey you took to India, which so moved me. I practically had tears; I did have tears when I was reading it. And it was your decision to take the ashes of your friend who had died, in an urn. And this was even earlier, so you were still quite vulnerable and you’re going to India, to Agra. Wow. Tell us a bit about what was in you that said you had to do that even with the risks? It didn’t strike me as the kind of place someone who was immune-compromised might go.
Suleika Jaouad:
So I met this incredible young woman in treatment. She was also diagnosed with cancer. And her name was Melissa Carroll. And she was truly the most beautiful woman I have ever seen in my life. All the teenage boys in the pediatric ward had major crushes on her and would blush every time they passed with their IV poles. And she was an incredible painter. And during the time that we were both sick, she learned her cancer had returned and was likely terminal.
And she responded… am I allowed to swear on this?
Heather Reisman:
Yes, go right ahead.
Suleika Jaouad:
She responded by saying, “I’m going to India. I’ve always wanted to go to India. The culture, the colours inspire me. They make me want to paint again. This isn’t my bucket list, it’s on my fuck-it list. And I’m going.” And she did. And shortly after she returned, she died.
And even though both of us, of course, knew that was a possibility, because we had almost died so many times there was a way in which we felt…. We talked about death all the time. We talked about our funerals. We drafted the guest list and decided what cocktails would be served. We joked about it. You know, Melissa said she wanted everyone to cry a lot at her funeral. But when she actually died, it didn’t compute. It still doesn’t compute. And it’s still hard for me to talk about.
But on the one-year anniversary of her death and the end of my treatment, her parents had set up a fund to send a young adult with cancer to India every year, and they invited me to apply. And I thought, even though no part of me really was ready to do that, that I was going to try to channel Melissa. And ultimately, I actually ended up bringing some of her ashes with me to India. And it was, you know, I thought about it as a pilgrimage to her, to our friendship—a way of honouring that connection.
But I think, ultimately, it was also my first exercise in actually finding my place among the living again. I wouldn’t have done that without her.
Heather Reisman:
That story is really so touching.
You write about another journey that also struck me. You decide to take a journey—a 15,000-mile roadtrip in a rather rickety car—to meet some of the people who reached out to you when you were writing the column. Including someone who was on death row. Tell us about where the impetus to take this trip came from. It just seems so incredibly brave to go on this journey all by yourself.
Suleika Jaouad:
You know, the truth is when I emerged from treatment I felt the very opposite of brave. And you know, I say in the book that when the ceiling caves in on you, you no longer assume structural stability, you must learn to live along fault lines.
And so, you know, I didn’t have wanderlust. I was terrified of being alone after spending four years very dependent on caregivers. I didn’t feel safe in my own body. And after spending so much time in isolation—in my bed or in a hospital room—the outside world had grown frightening and foreign. But I knew also, and I had seen this happen, that there is a way in which, you know, when your life is interrupted one of two things can happen. That interruption can hijack your remaining days; or you have to find a way to claw your way forward and to figure out what comes next for you.
And so I decided to do something drastic, and to leave home, by myself, and to go on the road. Not because I had any desire to travel—the very opposite—but because I knew it was important for me to thrust myself back into the greater expanses of the world, and to carve out the time that I needed to reflect on what I’d been through, and to find my way forward.
Heather Reisman:
Let’s talk a little more about finding your way forward. You write in the book about the existing narratives around recovery. And for the most part, the narratives centre around the notion of a hero’s journey, where you conquer your illness and live happily ever after. And I have to say, for me as the reader, almost everything I read in your book conjures the word heroic. But you feel differently. You write, and I quote now: “The harder I try to find my place among the well and to live up to my expectations of a survivor’s journey, the more I experience a dissonance between what should be and what is.” So how exactly are you processing society’s expectations for you against the reality of what you’re feeling?
Suleika Jaouad:
I think the very fact of having survived did not feel heroic to me. Because I knew a lot of people, like my friend Melissa, who didn’t survive and who were no less heroic for not surviving. So I always struggled with that concept.
But the bigger truth was, you know, I didn’t emerge from that experience feeling strong. I felt physically awful. And it was so hard for me to actually imagine how I might exist in the world of the living. And there were even times when I missed being sick. Not the illness itself, of course, but I missed the hospital ecosystem, I missed my medical team and my fellow patients—because I felt comfortable there. I belonged.
But out here in the world of the living I felt completely out of place. And so I really struggled to reconcile that narrative of the heroic survivor with the facts of my reality. And I began to understand that the heroism or the bravery wasn’t just the mere fact of having survived, but it’s how you live into the possibilities of the life you have now and what you do with it.
Heather Reisman:
I have to ask you, after hearing all about this health journey, how are you feeling now? Are you in good health?
Suleika Jaouad:
I feel great, healthwise. And otherwise I would say I’m COVID-good. (laughs a little) As my friend Priya Parker likes to say, it feels like an important qualifier after an extraordinarily difficult year. But all things considered, I feel really well. Thank you.
Heather Reisman:
Did you have to be super careful because of COVID? Would you have considered yourself a compromised person and therefore you needed to really be careful?
Suleika Jaouad:
Yes. So ever since I had a bone marrow transplant, I’ve struggled with a compromised immune system. And so I did have to be extra-careful. But the strange thing about it was that so much of what we all kind of collectively had to adapt to, especially in the early days of the pandemic, felt eerily familiar to me. You know, that experience of isolating at home, of navigating the world with a mask, those were all things that were a part of my daily life for the better half of my early 20s. But the irony is because I’ve been home and mostly quarantining, I’ve felt better in the last year than I have since my diagnosis.
Heather Reisman:
You just said that this way of living that we’ve all gotten used to over the last 14 months or so, that was kind of like your life when you were going through it. Do you think those of us for whom this experience is idiosyncratic to pandemic, do you think it’s going to change us in some fundamental way, having lived this amount of time under this threat?
Suleika Jaouad:
I think there’s no way that it couldn’t. And you know, this is true when I was sick. It’s true of this last year of living through a pandemic. You know, I think when our lives are upended there’s a kind of clarity that comes, where we see very clearly what is working and what is not.
And I also think there’s something really interesting that happens when we’re forced to step away from the culture of busyness that so many of us kind of are enshrouded and when we actually have to be in our own company. And obviously that can be kind of a torturous experiment. But I think it’s an important one.
Something I’ve been thinking about a lot, and reflecting on, in this last year is how when choice is removed, when our world narrows, survival becomes a kind of creative act. Everything from, you know: how we can work from home, or if we can work at all; how we re-imagine community. All of those are no longer givens. We can’t kind of resort to the things that made sense in a pre-pandemic life. And we have to use our imagination.
And I don’t know about you, but there are many things that I’ve realized about myself, about my lifestyle, in the last year that have been useful and that are things that I want to carry forward with me beyond the pandemic.
[music]
Heather Reisman:
Before we go, we always like to ask a few fun questions at the end. And I have a feeling that these are going to be particularly compelling. What book has had the most profound impact on your life?
Suleika Jaouad:
Yeah. I have probably a very long list but I’ll pick one that’s popping into my head in this moment, which is the Autobiography of a Face by Lucy Grealy. It’s a memoir. It’s beautiful and haunting. And I recommend it to everyone.
Heather Reisman:
What brings you joy in life?
Suleika Jaouad:
My dogs. My partner John. My garden. I have a garden for the first time. It’s the small things, of course, and the work that I get to do, truly. To get to write and be creative is what sustains me.
Heather Reisman:
What does intentional living mean to you?
Suleika Jaouad:
Intentional living, to me, is when we remove ourselves from that culture of busyness, from that anxiety of accomplishment, and instead of focusing on the things that we can put on paper—on a résumé, for example—we are prioritizing the spirit and the feeling that we want to imbue our daily lives with. And I’ve actually recently started, instead of a to-do list, beginning my day with a to-feel list, which I highly recommend to anyone who is interested in trying it.
Heather Reisman:
Thank you so much, Suleika. Thank you for writing Between Two Kingdoms. Thank you for being here. I just so enjoyed this time.
Suleika Jaouad:
Thank you so much, Heather. This has been such a joy and an honour. Thanks for having me on.
[music]
Heather Reisman:
Thank you for tuning in to our conversation with Suleika Jaouad. For more ideas to help you live well, including the book featured in this episode, Between Two Kingdoms, visit indigo.ca/podcast. If you enjoyed this episode, please leave us a rating on Apple Podcasts. You can follow us wherever you listen to your podcasts.
Well Said was produced for Indigo Inc. by Vocal Fry Studios and is hosted by me, Heather Reisman.