Ten Percent Happier with Dan Harris - 378: Life, Interrupted | Suleika Jaouad

Episode Date: September 13, 2021

Here’s a thought experiment: how would you handle it if you got a terrible diagnosis? Of course, many of us have no choice but to find out. This is the situation Suleika Jaouad faced when she got gravely ill at a very young age. She had to figure out how to have a sense of agency when so much was out of her control, and how to stay awake and present when her life was hanging in the balance.  Suleika Jaouad is a journalist, author, speaker, cancer survivor, and the author of a book called Between Two Kingdoms: A Memoir of a Life Interrupted. She is also the creator of “Life, Interrupted,” the Emmy award-winning New York Times column and video series that she created from her hospital bed.  In this conversation, we talk about: Suleika’s journey from being diagnosed with leukemia as a young adult to her recovery today; managing your emotions in excruciating situations; handling an ocean of uncertainty; feeding your need for creativity and productivity when your body is in mutiny mode; and the immense value of strategically going easy on yourself, especially when you’re an ambitious person.  Download the Ten Percent Happier app today: https://10percenthappier.app.link/install Full Shownotes: https://www.tenpercent.com/podcast-episode/suleika-jaouad-378 See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

Before we jump into today's show, many of us want to live healthier lives, but keep bumping our heads up against the same obstacles over and over again. But what if there was a different way to relate to this gap between what you want to do and what you actually do? What if you could find intrinsic motivation for habit change that will make you happier instead of sending you into a shame spiral? Learn how to form healthy habits without kicking your own ass unnecessarily by taking our healthy habits course over on the 10% happier app. It's taught by the Stanford psychologist Kelly McGonical and the Great Meditation Teacher Alexis

Santos to access the course. Just download the 10% happier app wherever you get your apps or by visiting 10% calm. All one word spelled out. Okay on with the show. to Baby, this is Kiki Palmer on Amazon Music or wherever you get your podcast. From ABC, this is the 10% happier podcast. I'm Dan Harris. Here's a thought experiment. How would you handle it if you got a terrible diagnosis? Every once in a while I mustered the strength to think about this and I find

that my mind just revolts. I just don't want to think about this. Of course many of us have no choice and that's the situation my guest today was in. At a very young age she got gravely ill and really had to figure out how to have a sense of agency when so much was completely out of her control and how to stay awake and present when her life was hanging in the balance. There's a quote she likes from the great writer Miguel Servantes. Before death, it's all life.

My guess name is Suleika Jawad, she's a journalist, author, speaker, cancer survivor. She's the author of a book called Between Two Kingdoms, a memoir of a life interrupted, and the creator of life interrupted the Emmy Award-winning New York Times column and video series, which she created from her hospital bed. In this conversation, we talk about Soleka's journey from being diagnosed with leukemia, as a young adult to her recovery today, managing your emotions in excruciating situations, handling an ocean of uncertainty, feeding the need

for creativity and productivity when the body is in mutiny mode, and the immense value of strategically going easy on yourself, especially if you are an ambitious person. We also talk about what she believes is a porous line between sickness and health, and her rather astute critiques of what she calls the wellness industrial complex. Some exciting news earlier this year, we ran a survey of our listeners,

thousands of you answered a whole series of questions about your experiences with this show, and we in turn listen to you. It turns out one of the things you really don't like is the ads on this show. We'll be right in the middle of talking about the pernicious impacts of mass media or the importance of self-compassion or how to achieve a blissful state of attention and focus and then jarring voice elbows its way in and tries to convince you to watch a boxing match or try a new diet or buy a car. So we've heard you on this and we're going to try something new. This show, the 10% happier podcast, is now available ad-free inside our companion meditation app, which is also called 10% happier. So you can listen to all of our episodes without ads inside the app when you subscribe.

Relatable wisdom, sounds, distractions. So to get started, download the 10% happier app wherever you get your apps, and then open up the app and tap on the podcasts tab at the bottom of your screen. And good news as promised, this is now available on both iOS and Android. Okay, that said, that item of business out of the way. Let's dive in now with Celica Joad. Celica Joad, welcome to the show. Thanks for having me on, Dan. Pleasure.

So, I'd love to hear a little bit about your back story. You got sick pretty young. Can you tell me when you first learned that you were ill? about your backstory, you got sick pretty young. Can you tell me when you first learned that you were ill? So about a year after graduating from college, I was diagnosed with leukemia. But looking back, I'd been sick for a long time. It had started with a mysterious edge,

my senior year of college and fatigue. But I think like a lot of, you know, people in their early 20s, I had this notion that youth and health are supposed to go hand in hand. And, you know, I went to see a number of different doctors who, you know, sent me home with antibiotics or told me to get some rest.

I was hospitalized for a week and ultimately released with something called burnout syndrome. So all this to say that by the time I got my actual diagnosis, I'd spent the better part of a year feeling like I was losing my mind and knowing that something was wrong and not necessarily being or feeling taken seriously by the doctors I was seeing but also not taking myself seriously. And so in a strange perverse way, it was a relief to get a cancer diagnosis. Did they give you a sense of whether they thought you were going to make it? They told me point blank that I had about a 35% chance of long term survival. And, you know, that kind of prognosis, I think, is impossible to wrap your head around. But certainly, you know, at 22, I hadn't yet confronted or given much thought to my mortality.

And so I remember experiencing that prognosis like a kind of slap. experiencing that prognosis like a kind of slap. Did you start contemplating your mortality at that moment? And if so, you know, what was that? What did that look like internally for you? I think like a lot of patients and those first couple of days or weeks, there was so much adrenaline. You know, I felt almost super charged by this need to keep it together, to keep it together for my parents, to learn all of the information I

needed to learn. There's such a steep learning curve when you get a diagnosis like this. And I found myself wishing that I'd paid better attention to my high school science classes, but everything was overwhelming. And when I first entered the hospital that summer, I remember packing a suitcase full of books and telling myself that I was going to make the most of what I imagined to be a summer of illness, a short sojourn in the kingdom of the sick, and that I was going to read all the things I hadn't had a chance to read that this was somehow going to be a restful experience. And of course, you know, very quickly into that hospital stay, whatever assumptions or preconceptions I had about how my illness was going to go were upended. And at the end of that summer,

I had yet to read a single one of those books and I learned that the standard chemotherapy treatments weren't working for me. In fact, my leukemia had become much more aggressive. And at that point, my only option was an experimental clinical trial. And I think that's when it hit me. The realization, not just that I was sick

and that I could no longer recognize the person staring back at me in the mirror, I'd lost all my hair and my eyebrows and my eyelashes. But that, in cases like mine, medicine was more of an art than a science. So the art in this case involved an experimental treatment. How did that go? Not well in terms of the day-to-day experience of it. It was a really physically challenging eight-month course

of treatment. And I ended up spending about four of those months in isolation in the hospital, fighting off every possible complication that I could have. And I think it was also because of the length of the trial and the uncertainty of it, it was my first indication that cancer was going to be as much of a physical challenge for me as an emotional challenge. You know, they say you can survive anything as long as you can see the horizon or an end date in sight. And I think what was

most challenging was this sense of constantly moving gold posts and of not quite being sure what was going to be on the other side of that, you know, very, very literal trial. And what that ended up looking like for me was life-saving bone marrow transplant with my brother Adam as my donor and then two more years of chemotherapy. But in all of this and what ended up being nearly four years, I think that's the thing that I kept coming back to and kept being surprised by again and again was that this was as much a physically grueling experience as it was an incredibly psychologically trying one. So how did you manage your emotions? How did you tend to your psychology while in this awful, excruciating situation.

Mm. You know, I was someone who'd always been a high achiever before my diagnosis. I'd, you know, pulled countless all-naders to get into the best possible school I could go to and to get a scholarship to attend. And I really felt like I up until, you know, my diagnosis had spent my 22 years on the planet preparing for a life. And so in that first year, I felt, you know, a couple of things. The first strangely was a sense of relief to no longer have to or be able to participate

in the kind of anxiety of accomplishment. Suddenly the stakes were dramatically low. No, I couldn't work, I couldn't study. My parents were over the moon if I walked one block around the house. For the first time in my life, I had very few expectations. But the double edge sort of that was feeling a sense of deep frustration and anger at this feeling that my life was stuck, that my life felt over before it had really begun.

And so the thing that ultimately helps me after the first couple of months of trying to set the world record for the number of grays anatomy episodes but consecutively because that's all I did for those first couple of months was returning to the practice I'd always turn to in my most difficult passages, and that was journaling. And I began keeping the journal every single day, and it turned into a kind of reporter's notebook.

I would jot down, you know, over her snippets of conversations between the nurses. I would write about the new patients I was befriending. I would write about all the aspects of the illness experience that felt taboo and impossible to talk about. I wrote about infertility. I wrote about, you know, what it was like to fall in love, fall, falling sick. I wrote about all of it. And something about that act of putting pen to paper in the privacy of a notebook gave me a sense of narrative control at a time in my life where I'd had to see so much control to others to my

disease to my medical team to you know, forces beyond my comprehension. I want to talk about the journaling in a second and what that led to, but you mentioned there sort of this interesting and maybe seemingly contradictory pair of responses relief and anger at the stuckness. Just dwell for a second in the relief. When you talked about that, this, having spent 22 years, I believe you used a phrase, preparing for life, it just reminded me of a comment I once heard from a young man who was in college at the time, he was into meditation.

And he was saying that when he got into meditation, he realized that much of his life had been a pregame and that he was never awake for the whole game, which was always right now. Anyway, does that resonate with you? It absolutely resonates. And I think now more than ever for college students, for high school students,

in this age of highly competitive college admissions and social media, there's so much pressure to make yourself into the smartest, most prolific, most productive, shiniest version of yourself. And so, yeah, in that sense, it did feel like a pregame. I felt like I was constantly hustling and constantly working and constantly striving. And so to have this thing happen that I hadn't chosen, but that hit the pause button on everything. And when I got my diagnosis, I lost my job.

I lost my apartment. I was living abroad in Paris and working as a paralegal. I lost my independence and suddenly found myself back home in upstate New York in my childhood bedroom, which is obviously not the plan, not my one year plan, my five year plan or my 10 year plan for that matter. But in a way, to have an element of agency or choice removed for the first time in my life did feel like a kind of forced exit from the pregame.

And I did have this sense that, you know, pretty much right away with my diagnosis, my relationship to time changed. I couldn't think about the past because it represented, you know, a life that I was no longer living. I couldn't think about the future because when mortality hangs in the balance, the future can feel like a very scary place because you don't know if you're going to exist in the future. And so in this strange way, I felt pinned to the present. I felt hyper-present for the first time in my life. Pinned to the present. I like that. You did have some agency, of course, and you made a really not only smart, but I think wise decision to revert to this practice of journaling. Just by

way of context, I want to say something that listeners might not know, which is that you had the career, you may have been working as a parallel legal, but in Paris, but you, you had the career ambition of becoming a war correspondent. I know, I know a little bit about that. And so personally, so I'm just interested to hear about that before we dive into what you did with the journaling while you were sick. Why, why, why on earth would anybody want to be a war correspondent?

It's an excellent question. One that I suspect you have your own answers to. It was born in New York City. Both my parents are immigrants. My dad is from Tunisia and North Africa. And so I'd always had a great interest in North Africa and the Middle East. I'd live there as a kid. I'd study to brought there. I majored in Near Eastern Studies, but I'd also had this this love of writing. You know, I felt this sense of pressure to choose a more pragmatic, financially viable route. And so the idea of like graduating college and doing an unpaid internship at a magazine or something like that did not feel like an option for me. But journalism did feel like career, not necessarily, you know, a financially lucrative career, but something that was viable and that had structure.

So that's what I set out to do. And right before my diagnosis, I got, but I thought it's going to be my first small break, which was an opportunity to interview for a position as a stranger in Tunisia, right in the early weeks of what was later known as the Arab Spring. And it was one of those moments when you're in your early 20s and you're not quite sure who you are or what you're doing, but you see a path towards a vocation that feels like something that somehow makes sense or that aligns with your interests and who you are. And so this notion of beacon of foreign correspondent or a war correspondent was very much that for me. Although, of course, I never got to do that.

I never made it to my second round of interviews. And in a strange way, I found myself in a very different kind of conflict zone. Yeah. You are a work correspondent, just firing experimental treatments at you, not bullets. Let's talk about that. You launched a project called Life Interrupted, that you launched a project called Life Interrupted? How did it come about and what was it? So, as I mentioned that first year of treatment, I really went into a deep retreat. I was writing compulsively, so might say obsessively

in the privacy of my journal, but I really didn't have any sort of career aspirations. It seemed impossible to imagine what kind of job I could hold or what kind of career I could create for myself in the confines of a hospital bed. But I ended up reading a lot about free to callo and doing a lot of research on art, long lineage of badbred and artists and writers and thinkers, people like Virginia Woolf who had managed to take illness and whatever

shape or format arrived to them and to transform it into some kind of creative grist or something, maybe even useful to others. And so as I learned more about these different people, I began to think of what I could do from the confines of my bed, my hospital bed. And leaving through my journal, I realized I had quite a bit of source material. And so like the good millennial that I am, I decided to start a blog, which I took very seriously. And I, you know, gave myself deadlines. I held myself to a high standard, but really expected nothing

to come of it. You know, nurses would come to my hospital room. And I'd say, can you come back in a couple of hours? I have a deadline. But of course, these were entirely self-imposed. And my readership at that point was like, will you gonna consist of my parents? And maybe my grandmother. But it felt really good to have a job to do other than simply being a patient.

And it was that sense of agency that I was finding in writing, and editing, and exercising those muscles that I hadn't felt in a long time. And shortly after my blog launch, I was approached by an editor at the New York Times who asked me if I might want to write an essay. And I proposed and said that I write a weekly column that I wanted to report on from my hospital bed. And in addition to that, I pitched a video series to go with it. That was pretty gutsy. They reached out and say, well, you know, this is

this is an interesting little project you got going here. We should write us an essay and you're like actually, you know, let me take over a chunk of the most venerable newspaper on earth and populate that. I love it. I say this with admiration. Well, and I should say I'm not a presumptuous person. And even in that moment, I knew it was wildly presumptuous of me to pitch this. But there was something about cancer that had made me brazen. I kept returning to four simple words, no time to waste. Yeah. And that's what it felt like for me. I didn't have time to work as a fact-checker,

to slowly make my way. I was stirring down the Spoon Mirror transplant and I felt a sense of urgency to do the things I wanted to do now. I just been dwell on that for a second because it's interesting that you put it in the negative like that being presumptuous and this may not be the case with you, but I'll just say for my own personal experience, one of the things I like to do is talk to people about their careers. And so many of the people I have these kind of conversations, you could even call them

like mentor and conversations are women. And I noticed this sheepishness about asserting themselves or being ambitious. You know, I see it with my wife who is struggling a lot with imposter syndrome. I'm not speaking out of school here. She's spoken about this publicly. I almost never, I can't, I'm searching my mind to think if I can come up with a time where I've heard this from a male. I can't right now come up with one.

I spent a lot of my time when I'm having mentor and conversation is like cajoling people into being more obnoxious. But there I go with the pejorative, you know, like presumptuousness. But I say it facetiously, but I applaud you for doing that. I think that was awesome that you did that. And if there are people out there who may fall prey to the same sort of psychology that you may have fallen prey to.

And I don't really know. I'm just drawing conclusions based on your words. Then I would say that you should look at what Sulayka did and go for it. It's, you know, it's interesting. And I think you're absolutely right. I've been recently observing the number of thank yous and apologies and exclamation marks in my own email correspondence and the email correspondence from other women I receive. And I can't think of a single man that I've corresponded with who expresses gratitude and a berborous with frequent uses of exhalation marks in the same way women do. And I do think there's this sense, whether you

personally believe it or it's a kind of social performance that you do in conversations where you have to mitigate as a woman any sense of being being too ambitious and brazen. I, you know, that's something I've had to do a lot of work around. And I've done a dive into my imposter syndrome of last decade. And it's something that's a kind of endless work for me. But I do think, you think, especially as writers, the language we use matters, the language we use to describe our career trajectories,

to describe the decisions we make matters. And thank you for noting that. I've had to really sort of wake up to it because my mom was an unremitting ass kicker who became one of the first women to become a full professor of medicine at Harvard Medical School and it was just a complete badass. But not everybody's like that.

My mom was able to, I think, resist some of the more noxious messages from the larger culture. Along those lines, previous guest on the show, somebody I really admire named Alicia Menendez, she's a journalist currently with MSNBC. She wrote a book called The Likeability Trap, where she talks about a lot of the issues you're talking about there just so just as a side note. In any event, you succeeded with your quote unquote presumptuous pitch. So tell us a little bit more about what came about as a result of it. I remember, you know, as I was having this conversation,

I was actually waiting for a biopsy result. And I was, my mom was sitting next to me and I was in this hospital gown and I turned to her and I, soon as I hung up the phone, I jumped up and down and I screamed. And then I burst into tears. Because, of course, I felt tremendous excitement. I'd never been published before I'd never had a byline. So this is a very big deal to me.

But I also had this, you know, dual realization of, of, now I actually have to figure out how to do this. And the next eight weeks leading up to my bone marrow transplant, I think I pre-wrote something like 12 or 13 columns, knowing that I wasn't going to be well enough to maintain that weekly pace once I started the bone marrow transplant process. But more than that, I was learning how to write a column. I'd never done anything like that.

But something about those short 800-word installments worked for where I was at. I had very limited energy. And so I wrote in 10-minute bursts, staggered throughout the day, entirely from bed. And without, you know, thinking about it in these terms, I was really having not just to confront my limitations and to accept them, but to find workarounds. And so, in this sense, survival and the work that I was doing became its own kind of creative act,

and the two felt very much intertwined. So the column in the video series, which was called Life Interrupted, launched my first week in the Bunmero Transplant Unit, and it was this confluence of both my biggest dream and my biggest nightmare and fear. And it was very disorienting. But what I hadn't really thought about because just the act of physically writing these columns of having to use my brain in this new way was all I was focused on was what was going to happen after. And like I mentioned, the future had become a scary place. So I wasn't really thinking about what would come of these dual experiences.

But when the column launched, I remember waking up the next morning, two hundreds of notes from readers around the world who, you know, some had been sick, some had cancer, but many of them were having all kinds of life interruptions. And for me, after a year of existing and total isolation, you know, shuddling between the hospital and my childhood bedroom bedroom to feel that sense of connection, to feel a kind of conduit to the world outside my window was no small gift. So what kind of subjects were you covering in the column? I wrote about all the topics that I found impossible to discuss with my loved ones. I read about sexual

health, I read about fear, I read about guilt, I read about anger. But what I was really interested in doing was reporting on this experience in real time because I think, you know, there are so many books that are told from the perspective of someone who has survived a traumatic event that are many years out. But when you're in the trenches of whatever that experience is, when you don't know how your story is going to end, that's a very different orientation and experience. And I wanted to capture that uncertainty. I wanted to write about the things that if I did survive, I would hopefully have some helpful amnesia

that would make it such that I wouldn't experience them in the same kind of aceral way. But I really, I think, have been most interested in my career in those kinds of in between places and those states or topics that allude easy categorization where you're kind of stuck in a liminal state, especially after my transplant, you know, no longer had leukemia, but was at a very high risk of relapse. I was still doing seven days of chemotherapy every three weeks. I was still very much in a place of isolation. My immune system had been completely obliterated by my treatments. So I wasn't allowed to go out in public. And if I did, I had to wear a face mask and gloves,

which of course, it's now a familiar experience for all of us. But I also felt in a kind of in-betweenness that I think a lot of young adults feel, where you're not a kid, but you're not a fully formed adult yet, as much as you may want to be. I had the thought while you were listening to you talk about sort of liminal spaces in-betweenness. Would it be fair to say that it actually looked at from a certain angle? All of life is in in between this? Yes, and you're right. We all exist in a liminal space.

We're all kind of terminal patients who are here on this Earth for a finite period of time. The epigraph in my book is from Miguel Servantes and it's one of my all-time favorite lines. Miguel Servantes wrote, until death, it is all life. And so in that sense, we're all in and in between place and as much as we like to think of sickness and health as binary, most of us, depending on the day, exist somewhere along that spectrum.

And the border between those two realms is very porous. Something that we've all had to reckon with in the last year with COVID of just how tenuous our lives are. And yet we are as the Buddhist master, Pemetrojourn has said, we are all programmed for denial. There's something about the human condition that doesn't quite let us take in our mortality. I often compare it to like trying to get one of my cats

to look in the mirror. You know, you just won't do it. You know, we're trying to put two magnets together. They won't quite touch. And I don't, you know, I don't quite know why it is. And there are lots of practices in Buddhism and the Catholic tradition is Memento Mori where you carry around like a stone in your pocket and touch it and to remind yourself you're going to die. And so one can get better at this, but it requires a lot of work. Have you now that you are out of that situation, we should talk

about how that situation resolved, your health, your health prevails. But do you find yourself forgetting once in a while that before death, it's all life? Yeah, I forget all the time. I have moments like this morning where I knew we were going to have this conversation and I was having a bad hair day and I rushed and took a shower and then I felt totally ridiculous because a couple of years ago I had no hair and so to be worried about a bad hair day especially on a podcast is you know a level of absurdity that I'm fully aware of. But I also think that there's good reason for why we can't have that heightened awareness

of our mortality. If we were all to live every day as if it were our last, we'd go bankrupt and probably make terrible decisions in the world that likely employed. And so I've come to delight in those moments of forgetfulness because they feel like a real marker of progress and healing for me. The flip side of that is that, you know, when I wake up in the morning, I'll often remind myself of when I was at my sickest and my energy was so limited that I could do

about three things every day. I could answer an email, I could watch a movie, I could see a friend, but I really had only enough energy to do three things, three simple things. And now, when I go into my day, I use that as a kind of thought exercise for myself. If I could only do three things today, what are the things that would feel most important, most rewarding, most nourishing. And of course, I was a privilege now of having more energy and being able to do more than that, but it's been a useful, clarifying exercise for myself. And I think it does take deliberation and deliberate intentional practices in order to get this into your

molecules, to strike this balance that you're describing between being aware of our own finitude and also enjoying the luxury of forgetting it. Yeah. Because I got us ahead of ourselves in the narrative. Can you just say, so you, at some point, as I understand it, you were told, you're cured. Am I right about that? Yes, yeah. So after about four years, I was told I was done with treatment. I Had my port removed This little device implanted beneath the surface of my skin through which I got You know everything from chemotherapy to stem cells and blood transfusions over the years And as the surgeon joked right before he removed it, he said, congratulations, you're being deported.

Which of course was, you know, a problematic part of it. On some level, it also felt very apt. I had this sense of, I'm finally done, and I'm going to return to the kingdom of the well. But that didn't happen. As I very quickly realized, a cure is not where the hard work of healing ends, in a lot of ways, it's where it begins. So, what do we need to talk about that in between place? That's very much where I found myself. On paper, I was better,

I was cured, but off paper, I was reeling from, youeling from the wreckage of those four years of treatment on my body, on my mind. I was grappling with PTSD, which wasn't something that I was aware of. And all the while I felt this enormous amount of pressure to, of course, be grateful to be alive, but somehow to follow that hero's journey that's often projected onto survivors, where you emerge better and braver and stronger and wiser for what you've struggled and suffered through. But that wasn't what it felt like for me. You know, that was probably the most lost I've ever felt in my life. I was struggling with depression and anxiety and PTSD and

very much wanting to find my footing among the living again, but having no idea how to go about doing that. I think you were right about considering yourself, and this will be a revival of a term we used earlier, you consider yourself an imposter in the world of the living. Yes, and in this strange way, I found myself missing the hospital. I found myself almost wishing that I could get sick again, not because I actually wanted to have cancer, but because I understood the world of the hospital,

I knew how to navigate it. I belonged there. I had befriended, you know, so many patients. there, I had befriended so many patients. It was the outside world that had grown foreign and frightening to me. And I very much felt like an imposter among the living. So how did you, your quote unquote, cured from leukemia, but you're suffering with anxiety, depression, PTSD. How did you, what kind of treatment did you seek out?

I didn't seek out any treatment in large part because no one really prepared me for the challenges of survivorship. So for a long time, I didn't understand what was wrong with me. I could see that I had certain physical long-term side effects for my treatment. And so I would go to my oncologists or my medical team and talk to them about that. But as far as the invisible imprints of illness, the grief and the heartbreak and the psychological imprints of that experience, I didn't have an understanding of where to turn to and who to seek guidance from. And so what I ended up doing was basically creating a kind of

ritual for myself. You know, we have these rights of passages, these ritualized healing ceremonies that help us through moments of transition. We have funerals and weddings, we have baby showers, we have bar mitzvahs, and all these ceremonies allow us to bridge that distance between no longer and not yet. For me, I didn't have a kind of right of passage to help ease my way back to the kingdom of the well. And so what I ended up doing was creating one for myself. And I learned how to drive and decided to leave home for a couple of months. And I borrowed a friend's car, rented out my apartment, and embarked on a solo 15,000-mile road trip around the United States, where I went and sought out some of the different people who'd written the letters and responses to the column over the years about their own moments of reckoning, their own moments of being stuck and that limital in between place.

And that was ultimately what allowed me to begin even just confronting what it was that I was experiencing and confronting the very real privileges, but also the very deep challenges of surviving something that was thought to be unsurvivable. How did it help you confront it? I think there's a kind of omairda of censorship around survivorship. Whether you're a veteran returning from war, there's again, like I said, the sense that you somehow are one of the lucky ones. And while that might be true, I think can also make it difficult to talk

about the physical and psychological toll of surviving a trauma. And so to have people who had lived some version or some degree of the same thing I was living and to be able to have frank conversations was a new experience for me. And you know I called the different individuals that I met my road guardians because they very much felt that way to me. They were a kind of red-crumbed trail through that wilderness of survivorship. And now you've turned this into a book. Can you tell us about that? Yeah, so the book is called Between Two Kingdoms.

It's my first book. It's a memoir. And it's really about the imprints of a trauma on a life and on our relationships and and that road trip that I ended up embarking on to visit these different strangers. Much more of my conversation with Celica Joard right after this. Raising kids can be one of the greatest rewards of a parent's life, but come on. Some days parenting is unbearable. I love my kid, but is a new parenting podcast from Wondry that shares a refreshingly honest and insightful take on parenting. Hosted by myself, Megan Galey, Chris Garcia, and Kurt Brown-Oller, we will be your resident not so expert experts. Each week we'll share a parenting story that'll have you laughing, nodding, and thinking.

Oh yeah, I have absolutely been there. We'll talk about what went right and wrong. What would we do differently? And the next time you step on yet another stray Lego in the middle of the night, you'll feel less alone. So if you like to laugh with us as we talk about the hardest job in the world, listen to, I love my kid, but wherever you get your podcasts. You can listen ad-free on the Amazon Music or Wondery app. What would you say are the most important takeaways for you from all of this this the illness the road trip all of it.

I'm reminded of this man I met on the road this guy named Rich and he said something to me that you know in the moment and since then is something I think about a lot. He said whenever we travel, we actually take three trips. There's the trip of packing and preparation and excited anticipation. There's the trip that you're actually on, which for me was this road trip. And then there's the trip that you remember. But the key is to stay present in whatever trip you're on without allowing your thoughts to time travel. And so I think that is one of the biggest lessons that I grappled with both in illness and in its aftermath and that I grappled with in this book, which is the question of how we learn to swim in an ocean of uncertainty,

which of course we're all doing all the time, but in these moments when your life is abended, you can feel subsumed by that sense of uncertainty. And so that was my work in writing this book. And that's my constant work is learning to swim in that ocean of not knowing. Well, that that sounds pretty Buddhist. And it sounds like what we've all been dealing with in living through a pandemic, you know, we, especially the beginning, we had no idea where this thing was going to go. And now, I mean, that's still true, but really true at the beginning. And it's just a reminder that the ground was never stable under our feet. Or as my meditation teacher Joseph goes, goal seen likes to say very simply, anything can happen at any time. Yeah. And, and you know, once we've lived through something like that, and I write this in the

book, you know, once the ceiling caves are not new, you no longer assume structural stability. You have to learn to live along fault lines. In a way, you know, my 20s were a kind of PhD course in learning to live along fault lines. But more than that, I think in these moments of heightened uncertainty or isolation, we have the power to kind of transmute whatever that circumstance is into something, into a kind of creative solitude or into a sense of connection. And so for me, that seeking out that kind of creative solitude, seeking out those unlikely connections

across the globe has been my way of learning to live along those fault lines. So the punchline or a punch line here is, and I don't mean to be clip, is we're in the situation, we're all in this bus, and we may run out of road at any moment, and that's scary, and it's non-negotiable. It sounds like the best coping mechanism is to make friends with the other people on the bus.

To make friends with the other people on the bus and to make friends with yourself through some kind of creative outlet, and you don't have to be a writer, you don't have to be an artist, but to find some mode of expression where you can give ink to the things that feel indescribable or uncontainable. In terms of the human connections you made on your road trip, just something I'll ask about one person. Apparently you met a death row in made in Texas. Is that, am I right about that? Yes, yeah.

He was a young man by the name of Quinn Jones or a little GQ as he's called in the book. And he was someone who never been sick before. But I had written this column about what I described as my incansoration, reflecting on the parallels and the language we use around sentencing and also diagnoses. And someone had sent him this column and he wrote me a beautiful letter reflecting on our shared experiences of isolation and facing mortality. And we struck up a correspondence. And so he was probably one of the most powerful stops on that road trip. But I think it is very much someone who's done

those two things that we're talking about now. He spent, you know, more than half his life in solitary confinement on death row, reckoning with what he'd done and who he'd been and doing that through learning how to write and more than that, letter writing and really sharing that vulnerability with others, most of them complete strangers. And I think that's been my experience that was certainly Quinn's experience, which is that when you dare to write or to share vulnerability, there's a kind of reverberation that happens where vulnerability begets vulnerability begets vulnerability. And so even if you're someone unsolatory confinement on death row or someone in isolation in a hospital room, as I was, there are these opportunities for connection.

I want to put a fine point on that, because there's a way in which terms like connection and vulnerability can slide by people because they're treading in the area of cliche, even though the frustrating thing about cliches is they become cliches because they're true. But the challenges, they're true, but the challenges to sort of revivify the cliche by coming up with new ways to talk about it. And so I just want to make sure that doesn't slide by people. The, the, the

point I think you're making, especially with the vulnerability, begets vulnerability, begets vulnerability is that if you take a risk and tell somebody what's going on for you in a real way, that is likely to encourage them to reciprocate and on and on. And then we're dropping our masks, we're dropping our personas, we're dropping our curated Instagram profiles and actually getting to know one another. And therefore, we're all getting more comfortable on the bus, which again is on a road that is bumpy at best. Am I restating your thesis with some faithfulness?

You are, thank you. How are you doing now? I'm doing really well. I'm nine years out from my bone marrow transplant. In a strange way, I think, during the pandemic, it felt a sense of return to a kind of familiar state. And so I've had to be, you know, extra careful because of my immune system. But I've also delighted in my world system, but I've also delighted in my world quieting and slowing down a little bit in this last year. And so now, as the world opens back up, and as we all are in this process of reentry, I'm being reminded daily of how, how similar in a lot of ways it feels to how it felt when I was tasked with a very different

kind of reentry all those years ago. I do want to go back to something you said before about back to the bus analogy. It's not only making friends with people on the bus, it's also making friends with yourself. What have you learned about that? Because you talked about not recognizing yourself in the mirror, having lost your hair and your eyebrows, it's gotta be hard for somebody who's a kid, really, in your 20s. And really getting in touch with the unreliability of your own body, the fallibility of your own body.

I'd love to just hear you free associate a little bit about what you've learned on having a relationship to yourself given all of this. Hmm, I think illness for me was an experience of having all the artifice stripped away, be it hair or certain values or even people in my life. And what was left at the end of that process were the raw facts of who I was, even if I didn't necessarily from the outside look the same way I had, but also what felt most meaningful to me.

And I'm fascinated by how these moments of a heightened awareness of our mortality unveil and reveal our most primal savage selves. And so I learned a lot about myself and those years of illness in a way that I think would have probably taken a very long time for pre-diagnosis twenty-two-year-old me to a crew. And so in a way, if illness was an experience, an experience of unveiling, of losing my hair, of losing my job, of losing all these kind of outside markers, of who I was and really'm really going beneath that.

This current phase of my life has been trying to live into the possibilities of that knowledge that I acquired. Can you say more about exactly what you mean by that living into the possibility of the knowledge you required? What does that look like in a day to day life. One of the questions I always returned to when I was at my sickest was, if I survived this, it has to be for something. It has to be to live some kind of meaningful,

happy life, otherwise what's the point of going through all this? And so the answer to how to go about that has looked very different over the years, but I think that the big thing that I come back to is a sense of wanting to keep that artist at bay and of not letting myself get to tangled up or wrapped up in these kind of outside markers of who I am and to stay in that kind of tender, stripped down place and to stay connected to that. But I think, you know, people always say that when they have near death experiences, they have epiphany, but what they'd like

to change and who they'd want to be. So I think the simplest way to say what I'm saying is that there's the epiphany and then there's the application of the epiphany onto your life. Now that's so interesting. I mean, I've experienced that on meditation retreats where I have all sorts of epiphany and I go back and I revert to being a schmuck and countless ways. So, I'm curious, what are the biggest obstacles for you between the epiphany and the application of the epiphany? Oh, God, that's a very good question. Instagram? Yeah, exactly. You know, I think the irony here is we started this conversation by talking about that anxiety of accomplishment and that kind of culture of constant hustling and striving. And so I think, you know, something that I have been working on a lot in this last year

is having more ease in my days and not pushing and striving as much in part because I can't, you know, I pay for it physically, but I pay for it in other ways. And so I think in some ways, yeah, Instagram is one of the impediments that kind of culture of constant comparison, whether it's to, you know, other people or past versions of ourselves, and these kind of constructed standards that we set for ourselves that make it difficult to slow down and to actually take a pulse check and to figure out not just where you're going, but maybe more importantly, why? Kind of last question for me, while we're being critical of Instagram, we just push you to explore another critique. I believe in your book, you explore kind of some critiques

of the wellness or self-care industry. Can you tell me a little bit about that? Yes, I have a very complicated relationship to the wellness industrial complex I imagine, like a lot of cancer patients do. And the thing that shocked me pretty much the day I received my diagnosis was the amount of unsolicited medical advice I received about how to cure my leukemia with everything from juice clumsies to apricot seeds to coffee enemas.

And I think, you know, in going through that experience too, I've kind of had to develop a heightened detector for the ways in which, you know, are most vulnerable, are most sick, are often the people that end up falling prey to misinformation from the wellness industry or, you know, being taken advantage of. But I've really learned the hard way to have to, you know, approach my health as a journalist might, to do my research, to get my second and third opinions, to speak to fellow patients, to really arm myself for this much information and research and due diligence as I can so that I can be the kind of advocate I need to be for myself and that all of us, Frank Ladoe. So the takeaway for people listening is, it might be, and please correct me. Yeah, it's easy to get

enchanted by whatever the latest wellness trend may be or some glossy article you see somewhere on social media or in a magazine, but do your research and think carefully before you dive into something that you think might be miraculous or as being sold to you as such. And the last thing I'll just add to that is, you know, we live in a culture that's constantly striving for some perfect state of wellness, whether that's interior or some level of fitness or it's the way that we look. And I know that for me since emerging from cancer treatment to constantly be striving for that state of wellness is to live forever, mired in dissatisfaction.

And so I've had to release any expectations of feeling well or unwell or of aiming for some, you know, mirage like state of health. And instead of had to learn to accept myself as I am and to exist somewhere in that messy middle. Something we should all be striving to do. Before we go, it would be great if I can nudge you to remind us all again about the name of the book where we can get it. Any other places where we can get content from you on

the interwebs, etc., etc. Can you just plug everything, please? I'll do my best and I'll try not to feel presumptuous as I do it. So my memoir is called Between Two Kingdoms. It's available anywhere. That books are sold. And I also founded a creative community called the Isolation Journals during the pandemic where every week in my newsletter I send out a different journaling prompt from an

artist or writer or thought leader. And it's a free project. It's been really, really beautiful. And in some ways has, yeah, married all of my interests in the last decade of really turning to creative expression as a form of healing and in connection and self-examination. Yeah, if you go to my website, sulaycajewa.com, Yeah, if you go to my website, sulaycajewa.com, I have everything there. And the New York Times column to the books, to the newsletter. Such a pleasure to meet you.

Congratulations on the book, and thank you for coming on. Thanks so much, Dan. It's been an honor. Thank you. Thanks again to Silayca. The show is made by Samuel Johns, Gabrielle Zookerman, DJ Cashmere,

Justin Davie, Maria Wartell, and Jen Poient with Audio Engineering by Ultraviolet Audio. As always, a hardy salute to my ABC News comrades, Ryan Kessler and Josh Kohan. We'll see you all on Wednesday for a brand new episode with Dr. Deliep Jeste, who is a scientist and medical doctor who has studied wisdom and how to get the wisdom of old age right now. Fascinating discussion we'll see you all on Wednesday for that. Hey, hey prime members, you can listen to 10% happier early and add free on Amazon Music. Download the Amazon Music app today,

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