The Rich Roll Podcast - Survival Is A Creative Act: Suleika Jaouad’s American Symphony of Contrast—Cancer, Art, Music, & Life

Episode Date: January 15, 2024

What do you do when the power goes out? You improvise and turn it into a creative act.  At the age of 22, confronted with a leukemia diagnosis amid the tumult beyond her control, Suleika Jaouad made a profound decision to embrace the art of journaling. Deliberately opting to distill insights from her affliction, she endeavored to endure her newfound residency in a Manhattan hospital in a meaningful and aesthetically resonant manner while giving ink to the intricacies that proved profoundly challenging to articulate. What began as a daily journal evolved into Life, Interrupted, an Emmy award-winning column and video series showcased in The New York Times, chronicling Suleika’s experiences from her hospital bed.  Our conversation today revolves around her leukemia diagnosis at a young age, the relinquishment of independence and identity in the throes of illness, the transformative power of writing as both agency and healing, and the embrace of the tumultuous and uncertain in-between space that defines life post-illness. We also discuss her newly intimate Netflix documentary, American Symphony—a beautiful exploration of Suleika and her husband, John Batiste’s lives individually and together.  This is exchange is about what it means to live a creative life, to be in a creative, collaborative relationship, and how mindfully to navigate hardship.  I hope it will be a wellspring of inspiration for you. Show notes + MORE Watch on YouTube Newsletter Sign-Up Today’s Sponsors: LMNT: drinkLMNT.com/RICHROLL ROKA: roka.com/RICHROLL AG1: drinkAG1.com/richroll This episode is brought to you by BetterHelp: betterhelp.com/RICHROLL Peace + Plants, Rich

I've shifted to a place of trying to live every day as if it's my first. Life is precious. We get that, right? What do you do when the power goes out? You improvise. Suleika Jawad is an artist, she's an Emmy Award-winning New York Times columnist, and author of the New York Times best-selling memoir, Between Two Kingdoms. At age 22, Sulejka was diagnosed with leukemia, beat the odds, and went into remission. A decade later, however, her cancer returned. That happened to coincide with her boyfriend,

now husband, John Batiste, being celebrated with 11 Grammy nominations, the most of any artist. The world was moving on, and I was profoundly stuck. If you see one documentary this year, it's the American Symphony, produced by the Obamas, that chronicles Suleika's cancer recurrence. I was stepping into the role of a war correspondent and reporting from the front lines of my hospital bed. I absolutely adore Suleika. She is a stunning and beautiful example of strength.

And her openness and vulnerability in this conversation is beyond moving. Hope feels like a dangerous and risky act sometimes. But what is the alternative? Well, I'm glad that you took the time to do this today. This will not be a five-minute junket-type interview, hopefully. Well, even better. I love a deep sit-down,

so I've been really looking forward to this yeah cool we met under very unusual circumstances about a year and a half ago at uh at an event hosted by google on the island of sicily where i don't know that i've ever experienced such a cute imposter syndrome in my life i just remember showing up at like the opening dinner and just feeling like the biggest fish out of water of all time. And I went alone, like my wife didn't come. I was there by myself. I didn't know anybody.

It was terrifying for me. And at some point I just sat down with you and John and I'm embarrassed to admit that like I didn't know who you were, but I was like, they look like nice people. And I sat down, I just sat down with you and John, and I'm embarrassed to admit that I didn't know who you were, but I was like, they look like nice people. And I sat down, I was like, can I eat with you guys? And you created this really warm, welcome comfort zone for me. So first, I just wanted to thank you for that. You and John together are such a beautiful, warm, special couple. And you definitely made me feel a lot better in that weird experience. Well, I felt the exact same way. I was in the midst of treatment with no eyebrows, no eyelashes, no hair. And it was my first trip since getting sick again. So I

was nervous on a number of levels in addition to the imposter syndrome. Right. And I had a wig that had been gifted to me and I've never really worn a wig before, but I was like, this is Google. These are important people I have to blend in. I was miserable the whole first night. My head hurt, the wig was too tight

and I went back to my room and I ripped it off and threw it in my bag. And I was like, I don't care how fancy pants of an event this is. The next time we have a dinner, I'm going out without my wig. And I think that was the dinner where we sat across from each other. And I felt like the kid who walks into the high school cafeteria and has forgotten to get dressed because I felt completely naked with my bald head. But that's the funny thing about those experiences is everyone assumes that everyone else somehow feels at ease or knows more people than they do. But I think in this case, those people all did

know each other. It is the star chamber where, you know, they're all hanging out doing whatever on fancy yachts and stuff like that. Yeah. Well, we were not part of that. I've never been on a yacht in my life. In watching the movie, which we're going to talk about, it's such a beautiful, beautiful offering. And, you know, what a gift to the world. So thank you for that. We're going to talk about it. But I couldn't help but wonder where you were in your cancer experience when you showed up in Sicily. So it

was right after getting the second diagnosis that the cancer had returned. Yes, I was deep in it. I had just had my second bone marrow transplant. I had just learned that even though the transplant had worked, I would be in treatment indefinitely, which was a really challenging thing for me to wrap my head around. And everything from fundraising slogans to conversations with friends, the goal is always to get to the cure. And that wasn't happening for me. wasn't happening for me. And that word indefinite presented a mental challenge in a way much more so than a physical one of how do I not only survive,

but how do I actually figure out how to live in the midst of this? Because surviving indefinitely did not feel like an option. Right, there's a lot packed into what you just shared that I want to tease out. But I think before we go any further, I think it would be meaningful if you could just recap the history of your experience with getting sick at a very young age and kind of provide a little bit of context. Yeah. So I graduated from college in 2010 and was preparing to enter the real world, as they like to say in college graduation speeches.

And I had dreams of becoming a journalist. I wanted to be a war correspondent, although the question of how to actually do that was unclear. But I think like a lot of people, especially young people, I had this sense of time, time to figure out who I was, time to figure out what I wanted to do in the world. But as it turned out, I did not have endless time. I mean, none of us do. I mean, none of us do, but it was, you know, a shocking realization at 22 to be confronted with my mortality in the form of a leukemia diagnosis. That's a period of time in which we feel, do the fun things, build your career. And the horizon is so far in the distant future that it doesn't even really compute.

And you were sort of robbed of that typical conventional experience and confronted with a very different relationship with time. What does the future look like when it's so uncertain? Yeah. Yeah. And it really felt like a breach of contract with the natural order of things to get such a dire diagnosis at that age. And overnight, my whole world changed. I lost my job. I was working as a paralegal. I lost my apartment. I moved back home into my childhood bedroom in upstate New York and began shuttling between there and the hospital where I spent that first summer living as I underwent various intensive chemotherapy regimens only to learn that none of them had worked and that in fact my leukemia had become much more aggressive. them had worked and that in fact my leukemia had become much more aggressive and it was at that point that it really occurred to me that there was a good chance I was going to die and the irony is you know far greater than the fear of death or the harrowing side effects of this treatment. What perplexed me more was this idea that I had spent my whole life preparing for a life in a way. The goal of young adulthood is to be independent,

and yet I was as dependent on caregivers as I'd ever been from the time, you know, that I was a toddler. And I think what was really hard for me to wrap my head around was that, you know, I hadn't figured out who I wanted to be. But all of a sudden, there was this urgency to do exactly that. It also confronted you with the limits of what it means to be an ambitious young person. Like you're a very ambitious person and very accomplished at a young age. And like many people, like most people had dreams and goals

and those were quite lofty for you. And suddenly that rug is pulled out from underneath you and it shifts your relationship with meaning in terms of like, who am I if I can't be a striver? Yeah. If my life is not about climbing a certain kind of ladder, which brings you into the present moment and creates a very kind of confusing space for anybody, let alone a young mind. know, a very kind of confusing space for anybody, let alone a young mind. Absolutely. I think, you know, in this culture where we prioritize hustle and output and productivity, I was like a lot of my friends, my entire sense of self-worth was wrapped up in my ability to succeed. And I remember going into the hospital that first summer, I packed pajamas,

the usual things, but I also packed like war and peace and every book in the canon that I hadn't yet read and announced to my parents that I was going to use this summer in the hospital to read through the remainder of the canon. And I had all these lofty ideals of what it's like to go through cancer treatment from just watching people in movies and documentaries and on social media, you know, people who go on to run marathons and to start research foundations. And in that first year, none of that happened for me. I was completely stripped down. I felt like not only laid bare, but almost larval. I couldn't do anything. I was angry. I remember at some point in the summer closing the blinds to my hospital room, and I was one of the lucky patients who had a view of Central Park, which seems like it would

have been a nice thing to have, but it was too painful for me to look outside the window because I would watch these people going to work. I would watch young couples making out on park benches, and it was this reminder that the world was moving on, and I was profoundly stuck. And I didn't know what to do with myself. I didn't know what to do with that rage, that sense of defeat. I didn't know who I was when I wasn't striving and it was the best thing that ever happened to me. Talk a little bit more about that piece.

Like why was it the best thing and what did you learn from having to put your ambition up on a shelf? So I spent my days trying to set the world record for the number of Grey's Anatomy episodes watched consecutively. That was my big accomplishment. I'm not just gonna binge TV, I'm gonna set a record.

Yeah, exactly. And I was angry and my parents were really worried, not just about my physical health, but my mental health, which is a piece of the illness equation that I don't think we focus enough on. And around that time, a friend came up with this idea of a 100-day project. And the premise was really simple. We were each going to do one creative act a day for 100 days. And so my dad, who grew up in Tunisia, decided to write one childhood memory

every day. And then a little nod to A Thousand and One Nights, he did 101 childhood memories that he compiled into a little booklet and gave to me and my brother at the end. That's really beautiful. Yeah. My mom, who's an artist, painted one small ceramic tile every day, and she, at the end of the project, assembled them into a shield and hung it above my bed. Did she do the tiles that are in your house? No, she didn't, but I do have that shield, and she made me a second shield when I had my recurrence two years ago. Although the second shield is made out of hundreds of woven hospital bracelets from the last two years. And I was really reluctant to participate in this

project. You know, when you're in a hospital bed, people are always pressuring you to be positive, to stay strong, to find the silver lining. And all, you know, those pressures made me want to punch everyone who walked into my hospital room in the face. I did not want to make something meaningful out of this experience. I just didn't want it to be happening at all. So for my project, I kept the bar very low and I decided to keep a journal. I was going to write in it every day. It didn't matter how long. Sometimes it was many pages. Occasionally it was one word, often the F word, which was all I could summon. But something interesting started to happen in that process of keeping a journal.

And I realized I was using the journal as a kind of reporter's pad. I was writing about the fellow patients I was befriending. A guy, a few doors down from me, his name was Dennis, went on a hunger strike when the meal trays kept arriving with the food still frozen. Just weird little details, overheard snippets of conversation by the nurse's station. And without realizing it, I was, in a sense, stepping into the role of a war correspondent and reporting from the front lines of my hospital bed. And it was this moment for me, and it was a gradual moment of realizing that within these limitations these bodily limitations that I had there were things that I could do from my hospital bed and much later that became that journal became the source material for the New York Times column I wrote

called Life Interrupted which is my first time ever being published. Yeah, yeah, yeah. That's an amazing story in and of itself. And I want to get to that. But just, I want to stay here for a moment. I'm curious around the relationship, like the necessity of finding an anchor to kind of ground you.

Like, I can do this. Like, I can do this. Like, I can make this my job. And I can approach it like a professional war correspondent. And there's some sense of safety and security in knowing, well, at least I have this. And this is something that I can control amidst the chaos and the many things that are well beyond your control at that time.

Yeah. I mean, there's so many things about the experience of being sick that can leave you feeling powerless. Just think about that clinician-patient relationship. They enter the room in a lab coat. You're in a backless hospital gown sitting on a table. And it's very hard to feel empowered. It's very hard to hold on to a sense of self when you're ceding so much control to your medical team, to your caregivers, to the ever-changing treatment protocols. And so I had to find forms of agency that I could hold on to. And for me, that started a journaling and became writing. But I realized it was essential to my own ability to endure whatever the next day was going to bring. That I had these little anchors,

these touchstones that brought me back to myself throughout the day. Going into the hospital thinking, okay, I have to get this thing treated. I'm going to bring all these books. I'm going to be productive. I'm going to muscle my way through this experience and then I'll get back to my life. And then realizing the treatments aren't working, you're headed towards these experimental treatments,

your mortality becomes a very kind of visceral present experience for you, creating a disorientation around what your future might look like, or if you might even have one, butts up against all of these traditional narratives that we have around illness, terminal illness, and in particular, very specifically with cancer. Like the narratives around cancer and the languaging around cancer is you go to war with it. This is a battle.

It's a very kind of masculine framing of how you navigate this disease set against a backdrop of this hero's journey expectation. Like you go through this, you come out the other side, somehow you're able to extract meaning from that that makes you a more integrated whole person in the world. And you took issue with these narratives and decided to confront them in your writing to try to figure out a space that made sense for what you were experiencing specifically. So talk a little bit about arriving at that and how you kind of came to a place of wanting to share the truth, the vulnerable truth of what you were experiencing as a salve to other people who might be experiencing something similar.

Yeah. So let me first go on record and say that I did not read any of those books. I have yet to read War and Peace. What that experience of being the opposite of productive taught me was what happens when you allow yourself to lie fallow and you do things, for me it was keeping that journal that you're doing purely for yourself without any expectation of anything coming out of it, of anyone ever reading it. And there was a sense of creative liberation that I felt when I tapped into that space. And I realized that there was likely, if I did survive this illness, never going to be another time in my life where I wouldn't have that outside expectation of output and that I should use this time to experiment and play and try things, you know, within my, it was the very opposite of the hero's journey. suffers well, whether you have cancer or you don't, to be stoic and brave and wise and transformed before you've even emerged from the belly of the beast. And I found that pressure exhausting. I

found it deeply dangerous and harmful. It glosses over all of the very real challenges of enduring a trauma, which an illness is, and having to navigate that experience of reentry, where you're trying to figure out who you are on the other side of it. Toni Morrison has this beautiful line where she says, if you want to read a book and it doesn't exist, then you must write it. And so I wanted to speak to that experience of being in the in-between place where you don't know who you are, where everything feels messy, where you're mired in uncertainty, to give ink to the things that felt incredibly hard to talk about with my family and my friends, to talk about everything from the sense of guilt that can come with being sick and that feeling of being a burden to the insanity of navigating our healthcare system, to what it feels like to be falling in love when you're falling sick.

And so that's what I tried to do. It wasn't the story I ever thought I would be writing. I'd always imagined myself as someone who would help other people tell their stories, but I found the first person to be an interesting challenge, to kind of resist what we think the story should be, and to keep pushing for the truth beneath the truth beneath the truth. As human beings, we're pattern seekers, right? And we love the before and the after,

and, you know, sort of right angles and clean lines. And your experience was one of saying, I don't feel like there's a before and after. I'm in between, I'm in this liminal space where everything is murky and gray and unclear. And I don't know if there is an after. And if there is, it's not going to conform to this hero's journey narrative.

And I'm not interested in being the sort of inspirational survivor here in the traditional sense. And so that creates its own crisis of meaning. Like, what does that mean? And I think the impulse to really dive into that and to explore it is an exercise in the messiness of being human. Like even if you haven't experienced cancer

or even a great tragedy, our lives are not really ones of befores and afters. They're marked by constant gradual transitions. And most of it is about the gray and the confusion and the in-between. And one of the really cool things that you kind of identified in the process of exploring this is the importance of ritualizing these transitions. of ritualizing these transitions, like to really honor them with ritual and appreciate them for what they are rather than deny them and say,

well, I'll just wait until I'm in that after space that I'm attached to with expectations. Yeah, I mean, the image that always comes to mind is a ceiling caving in. And when the ceiling has caved in on you, you no longer assume structural stability. Instead, you have to learn to live along fault lines. And so when I emerged from treatment after almost four years, I had expected that sense of being on the other side. And I knew how lucky I was to be alive. Out of the 10 young cancer comrades I befriended during my time in treatment,

only two of us were alive at that point. And yet I felt so lost, I could barely breathe. And I spent a year feeling completely stuck when I emerged from treatment. I had no idea what to do with myself. I had no idea how to carry that wreckage. I was desperately trying to move on in all the ways that we think we should move on, only to realize that moving on was a myth. I wasn't going to be able to compartmentalize, you know, this four-year period of my life. I wasn't going to be able

to skip back to the person I'd been pre-diagnosis. You have the hard wiring to be the striver, but then on top of that, the kind of social or societal expectations like, okay, this is in the past now. What are you doing now? Absolutely. The day I had my chemo port removed from my chest, I remember getting a slew of text messages from people saying, congratulations, like you can start your life now. This is amazing. But unlike when you're in treatment there were no you know medical protocols or 12-step programs to help me find my way forward after this illness I felt like I'd had this cavalry surrounding me for four years and I was suddenly on my own to figure it out and it was really isolating and really hard and to get back to the idea of ritual, I started thinking about how, you know, we have all these rites of passage, be it funerals or weddings or baby showers that help ease that transition between no longer and not yet. And in the world of illness, there wasn't a ritual, there wasn't a rite of

passage to help you find your way, your place back among the living. And then I was going to need to create that for myself. At some point though, you get this diagnosis of PTSD, which is sort of a light bulb moment. Like, oh, yeah, what I just endured was incredibly traumatic. And that helps create a frame for you to who've experienced some kind of acute violence. And in part, because of this hero's journey arc that is foisted on cancer patients and this expectation of constant gratitude, and this expectation of constant gratitude, it never occurred to me that I was suffering from PTSD,

although it sounds like the most obvious thing in the world. And it made me realize that in spite of having that diagnosis, there wasn't much in the way of support, at least not 10 years ago when I was going through this. That's surprising to me. You hear about cancer support groups, but I would think that there is a whole infrastructure around cancer survival and that very unique experience of what do you do now where groups of people would get together and share what their challenges are. That doesn't exist? I think it exists now more and more, but not enough. And so I really felt on my own

and had to create that support group for myself. So what I ended up doing was writing to some of the many strangers who'd written to me with stories of aftermath and their own life interruptions and asking if I could visit them. Before we get to that, though, I mean, you're like a lifetime journaler, right? Like journaling's a big deal, right? I have more questions about that. But you initiate this process when you're in the hospital, that ends up as a blog.

I'm interested in how that ended up as a column in the New York Times. Not only a column in the New York Times, but also an Emmy Award winning column. So when I got the date for my first bone marrow transplant, my doctor told me point blank that I had about a 35% chance of surviving it. And I had about a month and a half before I was going to undergo that transplant. And so that sense of finitude came crashing down on me. And I realized that there were lots of things that I wanted to do that I might not be able to do. But writing had always been this great love of mine.

And I decided I was going to take the contents of this journal and turn them into essays. And so I started a WordPress blog from my hospital room. I watched YouTube videos on how to build it. It was pretty, you was pretty basic stuff. And I'm sure that in that first week, my readership consisted of solely my parents and my grandmother, but I took it really seriously. I would write every single day and it felt really good to have a job to do other than just being a patient. And it was that sense of agency that I'd been craving for a long time. And about two or three weeks into writing that blog, it started to get

passed around and shared. And I got an email from an editor at the New York Times and later a phone call in which she asked me if I might be interested in writing an essay for the paper. And I thanked her and said I wasn't interested in writing an essay. And then I took a deep breath and I told her that what I really wanted to do was to write a weekly column from the trenches of treatment because so often illness narratives were written from the perspective and vantage point of someone who survived. And it was a very different experience to write from that place of not knowing, that place of deep uncertainty.

And then I said that I also hoped that there could be a video series accompanying it because I knew how hard it could be to read when you're sick and that I wanted this project to feel as inclusive as possible. And I went on and on and on. And, you know, this would have seemed wildly presumptuous. Yeah, you're 23 at this point? 22. 22, right. To pre-diagnosis me, never published.

From the global paper of record, yes. Audacious doesn't quite capture like the magnitude of that request, you know, without ever having being published before. Like, here's what I need in order to go forward with this. Exactly. But that's the thing about, you know, staring your mortality straight in the eyes.

Every other fear pales in comparison. And I had this sense of limited time. And in a weird way, I think cancer had made me breeze in. And I felt like I needed to shoot my shot because what was the worst that was going to happen? It couldn't be any worse than whatever it was I was about to come up against. And to my surprise, she said, okay, we'll try it for a couple of installments and see how it goes. And then I went, oh, shit, I don't know if I can actually pull this off and do it. This job just became a real job. Yeah, totally. And you're in your hospital bed.

What happens when you have an actual deadline, not an imagined deadline, and you're not feeling up to it? There's a photo of me in the bone marrow transplant unit where I have my laptop on my knees and a vomit bucket under one arm, and I'm crying not because I'm going through the most brutal chemotherapy that you can go through, but because I'm worried that I'm going

to miss my deadline. And that might sound unhealthy, but I actually think it was a really necessary, you know, shift in perspective for me because I wasn't, you know, wallowing in whatever was happening to me. I was figuring out how I could participate in the world from my room. So the tentacles from this column reach far and wide. You're suddenly on the receiving end of a lot of people who are being impacted

by what you're sharing. And you're reading all of this and taking note of these stories to bring this back to what you were sharing earlier about this decision when you finally are back out in the world to go and visit these people who had written to you. Yeah. And, you know, I think it's important to say that, you know, for me, I wrote these missives in a void. I sent them out not really expecting anything to come out in return, and I'd been so deeply isolated. I had spent that whole last year, I think I spent eight cumulative months in isolation in the hospital. And one of the very first letters I received was from a death row prisoner by the name of Quinton Jones, who'd read a column I'd written where I described what I called my incanceration and that experience of isolation.

And he had never been sick a day in his life. He used to do 1,000 push-ups every day to start off his morning. He related to that experience of confinement, of confronting your mortality and not knowing when the sword was going to fall. And so I received all kinds of letters, a lot of them from people dealing with illnesses, but a lot of them dealing with all kinds of life interruptions. And so to fast forward a couple of years during that really challenging year where I was done with treatment, I was on paper better, but off paper feeling worse than I'd ever felt. I was on paper better, but off paper feeling worse than I'd ever felt.

I began responding to these individuals, including Quentin Jones, and asked them if I could visit them. And I ended up embarking, well, first learning how to drive. Right. Like a good New Yorker, you never learned how to drive. Like a good New Yorker stuck in the hospital for my adult life, never learning how to drive. Like a good New Yorker stuck in the hospital for my adult life, never learning how to drive and embarking on a solo 15,000 mile road trip to go and visit about two dozen of these strangers and to ask them about their experiences of aftermath, to ask them, you know, how it was that they were healing and moving forward from their own particular traumas. You go and visit little GQ, right?

That's what he goes by, the guy in death row. Quentin Jones, yep, little GQ. Yeah, you visit him. You visit basically a survivalist compound where a woman had written to you. Yes. Which is interesting. And then this young girl, Unique, also, which I was very struck by her.

Yeah. Yeah. And, you know, I think we live in a loneliness epidemic, but when you're suffering, especially in this age of Instagram, where everyone is posting a highlights reel of their life, there can be this sense that you are the only person who is suffering in that particular way. And that everyone else seems to be able to somehow survive and to get it together better than you. And so it was a pretty extraordinary experience for me after spending so many years in confinement to thrust myself not only out into the greater expanses of the world, but onto the porches and into the guest rooms of these perfect strangers. Because I think what happens when we dare to share our most unfurnished stories of vulnerability

is that, of course, we learn that we're more alike than we are different it is the secret sauce to connection honestly and it's the thing that we're most scared of and yet it's the most powerful salve to unite us yeah and as a writer you're deeply connected to that but i'm curious as to whether in the the process of your journal then becoming a blog and then becoming a column and then ultimately a book, if you struggled with how much you should share or what that kind of vulnerability equation should look like. Absolutely. I mean, being vulnerable is not comfortable for me. I don't know that it's comfortable for anybody. I had a Post-it note on my desk when I returned from that road trip and began writing that said, if you want to write a good book,

write what you don't want others to know about you. If you want to write a great book, write what you don't want to know about yourself. My first drafts are often full of lies. Not intentional lies, but aspirational lies. Here's how I'd prefer to be perceived. Yeah, or here's the story I want to believe. And so I know that I'm doing my job right when I feel that sense of discomfort. Cheryl Strayed also offered a little nugget

of advice to you that's related to those post-it notes. So before I went on that road trip, I was actually interviewing Cheryl for a piece that ended up being killed. So it never came out about mentors. And at the end of our conversation, inadvertently, she became a mentor to me when she asked me what it was that I was working on. And I said, I really want to write a book, but I don't want to write about illness. I'm trying to move on from that. I don't want to be a sick person. I don't want to be pigeonholed as a sick person. Whatever it is I write about, it's got to be about something other than illness. And she said to me, the funny thing about that is that when I went to go write Wild, famous memoir about hiking the Pacific Crest Trail.

I told myself, whatever it is that I write about, I don't want to write about my dead mother. Right. And of course, you know, Wild is the story of that hike, but it's also the story of grieving her dead mother. took away from that is that as long as there is a question that is pushing at the edges of your mind, as long as there's something that you're trying to figure out, you have no business trying to avoid it until you've written your way through it. And so my book Between Two Kingdoms was about this road trip. But of course, it was all about the struggle of not only falling ill, but figuring out who I was in the aftermath of that and figuring out how to carry, you know,

what had happened forward with me. That book ends up on the New York Times bestseller list like forever. I don't know how many weeks, how many weeks? I don't know. A long time How many weeks? I don't know. A long time, right? It's probably going to come back now because of the movie, which is amazing.

And on the heels of that, you do a TED Talk on the main stage at TED. That's sort of an encapsulated version of the book and what you've just been sharing that goes on to get, I don't know, 19 million views or something like that. One of the most watched TED Talks. And in reflecting on your book and that TED Talk, they're very much a capsule of what you were experiencing at a particular phase of your relationship with your illness and your life. And your life is different now.

I'm curious, when you look back on the book, the TED Talk, where your head was at, where your soul and your spirit were at that time, how does that match up with what you're experiencing now? So about two weeks before Between Two Kingdoms came out, I got a letter from GQ saying that he had gotten a date. He had gotten an execution date. And this was after, you know, spending more than half of his life, almost 25 years on death row. And I just felt my stomach fall when I heard that. And so when I went into my virtual book tour, because this is during the pandemic, I decided that I was going to try to use these speaking events to amplify his situation as much as possible. And what ended up happening was that, you know, through these

speaking events, there was one person in the audience who was the partner of a big law firm who ended up representing him pro bono. There was another person who helped with PR. And I got thrust into this multi-month clemency effort to try to get Quinn's death sentence changed to a life sentence. And he was the first person to say that he belonged behind bars for the rest of his life, but that he had also spent those 25 years on death row reckoning with what he'd done, taking accountability for it, asking forgiveness for the murder that he committed, and working to become the best version of the man he could be. And in the weeks leading up to what ultimately was a failed execution effort, I did not sleep. I could not sleep. I was working nonstop because especially having gone through illness, it seemed so unacceptable to me that if there was a choice to spare someone's life, that that choice not be made.

This is a very roundabout way of answering your question. But on the day of his execution, he was granted a four-hour phone call. And he spent those four hours on the phone with John and me. And I remember saying to him, I am so sorry. I feel like we failed you. And he said, you haven't failed me. And the reality is that even though it's not the outcome we'd hoped for, this feels like the greatest success that I could have imagined because I never experienced love growing up. And in the last few weeks, I felt more loved by more people than I've ever felt in my entire life. And I can walk into that execution chamber knowing that I've loved and that I've been loved and that's enough.

And the next day I couldn't get out of bed, which seemed understandable. But a week later, I still couldn't get out of bed. And three weeks later, that remained true. And at first, I attributed that fatigue to the exhaustion of working on Quinn's case to the sadness of losing him in the way that we did. But something about that fatigue began to feel eerily familiar. And ultimately, after a couple of weeks of being misdiagnosed, I learned that after nearly a decade in remission, my leukemia was back. And the irony is that, you know, my book is all about navigating the in-between and I found myself thrust in an in-between place unlike any I'd been in before. John and I were at what felt like the peak of

our lives. It was one of those moments where, you know, various projects that we'd been working on for years and years and years were all coming to fruition. And it was supposed to be this moment of celebration, of ease, and it became the very opposite of that. Once again, we packed up our things, we left our home, we relocated to the city to be close to Sloan Kettering, We relocated to the city to be close to Sloan Kettering where I received my treatment. And it was this moment in our lives of extreme contrast because the same day I started doing chemotherapy, John learned that he'd been nominated for a historic number of Grammys, 11 Grammys. And we realized that we were about to embark on a roller coaster, or actually to call it a roller coaster would be an insult to roller coasters. I expected that book coming out. I expected whatever came after to feel like the beginning of a new chapter. And in some ways it felt like an old one.

Right, yeah, that's what I'm getting at. It's sort of like, yeah, okay, I wrote this book about embracing uncertainty, but I did that. Like that's done, that's in the past. Now I'm moving here. So it's sort of like, I did that piece, I acknowledged it,

but I'm still in a new, I going to be in a new chapter right now so there's a sort of weird blind denial of the very thesis that formed the book and kind of how you were known publicly and then you got this reckoning or reminder that you had to once again

inhabit that space and it's very human it you know, it's sort of like, okay, I did that, like enough. And did you have a sense before that diagnosis that despite being told, like, here's the percentage chance that you'll survive or perish as a result of this disease, was there still a sense of having it placed in your rear view mirror and anything regarding cancer in the future was purely theoretical? Because you wanted to go get that biopsy when everybody told you like, hey, you don't really need to do that.

There was something inside of you that compelled you to do that. And had you not done that, you know, you would be in a very different place, I think. Yeah. I mean, I couldn't shake that fear of relapse for years and years and years and years, long after it stopped making sense that I would be so afraid. But by the time the book came out, I did feel past it. We were making all kinds of plans to have, you know, babies and get married and all the other typical things that you start to think about in your 30s. And to add to that, I was getting messages and notes every day from readers of the book saying, seeing you thriving 10 years out and

so healthy gives me the hope that I can too. So there was that added layer of it. And were you able to hear that and own that? Or were you like resistant to that being foisted on you? I resisted it because there was something inside of me that fell off. I wanted to receive it. I wanted to receive it. I wanted to believe it. But as is often the case when you're falling sick, there's a kind of schizophrenia that

takes hold of your mind where you're living a split reality. And I felt that. I'd go to sleep and write in my journal and find myself writing the exact same things I'd written when I was first falling sick but still in denial of it. And what troubled that even more was that when I went to seek medical treatment, I was told that I was totally fine. I'd had Lyme disease, and so they attributed my low blood counts to that. And I'd had an experience of a year-long misdiagnosis, my first time getting sick, where I had received every diagnosis from anxiety and depression to burnout syndrome. And once again, I found myself being confronted with various people telling

me essentially that I was fine when I did not feel fine. But I had the fortune, or I guess the misfortune of experience, and I pushed for that biopsy. And even on the day that I went to get that biopsy, I had asked a friend of mine who is very busy to take the day off to come with me. And when we arrived, the nurse said, we're just doing this biopsy to ease your anxiety. You can still change your mind. And I felt totally embarrassed, like I was being melodramatic, like I was some kind of hypochondriac and also embarrassed that I had asked this very busy, important friend of mine to come all this way. And so...

You're not going to say it, but the very busy, important friend is the great Liz Gilbert. Yes. So it's like, these are your writing mentors. You got Cheryl Strayed and you got Liz Gilbert. I mean, it doesn't get any better than that. It doesn't get any better. I've been rich in mentors. But Liz feels like the kind of person that shows up for her friends in this kind of way. Like,

this is what she does. She really is. And so, you know, I'd like to say that I pushed for that biopsy for myself, but the reality is I pushed for that biopsy because I wanted it to feel like a good use of her day off, which is pretty pathetic. But I'd also learned the hard way that, you know, you need to advocate for yourself. When something is amiss, you have to push for answers. And the worst thing that can happen is that you're wrong and you get to go on and live your life. Although in this case, I was right, though I wish I hadn't been. And about three days later, I got the phone call from my oncologist who was shocked and in tears and said the leukemia is back

and it's far more aggressive. And what did that feel like to hear that? I think I felt total shock and total terror, and weirdly after that came a sense of relief because this thing that I feared most more than any other fear had actually happened. And now all there was to do was to move into action. And that might seem like a strange response, but when you've spent many months feeling But when you've spent many months feeling that something is deeply wrong and being told that nothing is wrong, you start to feel like you're going crazy.

And so I felt relief to be believed and relief to hopefully be able to do something about it. And I guess relief to have had the experience to know how I wanted to approach this bout of illness differently. But of course, I felt total terror. My parents were living in Tunisia, which is where they currently live. And I remember feeling so afraid to call them and to tell them because I knew that a diagnosis like this doesn't just implode the patient's life, but it implodes the lives of everyone around you. Yeah. That's a weird juxtaposition of feeling vindicated, but also feeling terrified. Yeah. That's a weird juxtaposition of feeling vindicated, but also feeling terrified. Yeah. Like I was right. That feels good. Uh-oh. Here we go again. I'm probably going to die.

And this is where the movie opens, basically. Yeah. Yeah. So American Symphony is just this, you know, really beautiful exploration of your life and John's life individually and together. It's really an excavation of what it means to live a creative life, to be in a creative, collaborative relationship,

to navigate hardship. But whereas your book and everything that kind of had preceded this phase of your life with respect to your own creative output was really about these liminal spaces, these gray areas. American Symphony in this next chapter is really about extreme juxtapositions. It's about peak experiences, high and low. It's not so much about the gray as it is the ping-ponging back and forth between these extremes that most people in their life

will never experience, either the kind of highs that John was riding or the lows that you were experiencing just simply trying to survive. And it creates this really unique dynamic between the two of you that's absolutely captivating and mesmerizing, but also this beautiful kind of living example of one of your mantras, which is how do you make survival a creative act?

Yeah. How did the movie come together? American Symphony initially arose from a conversation John and Matt had over dinner. John had worked on his previous film, The First Wave, about the COVID-19 pandemic and scored parts of it. And when Matt asked him what he was working on, he said he was working on The Symphony, this project that had been in the works for many, many years and was finally going to premiere for one night only at Carnegie Hall. And he and Matt decided to make a short process film about the bringing to life of that symphony. And before Matt even began shooting, I learned that the leukemia was back and John was nominated for this record number of Grammys.

And as Matt likes to say, if you end up with a story that you began with, then you're not doing your job right. You weren't listening along the way. And so, you know, before the cameras began rolling, we all realized there was a very different version of the story to tell. But as you might imagine, I felt very hesitant about the idea of letting a camera into our private lives, especially at such a difficult moment. into our private lives, especially at such a difficult moment. Both John and me are fiercely private people, which might sound like an odd thing to say as someone who's written largely in the first person for my entire career. But usually I'm the one doing the writing. And usually whatever it is that I'm writing, I have the time to figure out what is the draft I want to write for myself and what is the draft that I want to share with the world. And so it took a real leap of faith to let Matthew Heineman, our director, into our lives in this way.

And Matt isn't just your regular filmmaker. into our lives in this way. And Matt isn't just your regular filmmaker. He woke up with us and went to bed with us every night, not literally, but he was there with the camera and ended up amassing about 1,500 hours of footage over the course of this seven-month period. And the truth is, when we started filming this documentary, I really didn't know what the story was going to be. None of us did. I didn't know if I was going to survive long enough to see the documentary. But we knew, John and I knew, that we wanted to capture these extremes. And maybe, you know, what we were living through was more extreme than what the average person

might be living through. But we all have to hold the duality of the human condition. We all have experiences in our lives where we're holding the astonishingly brutal facts of life with the beautiful ones in the same palm. And we felt that that was a worthy experience to document, even if we didn't know exactly what it was going to become. Right, the fear and the uncertainty of not knowing where this new chapter with your illness was going to take you

and the hesitancy around sharing that, butting up against both of you being artists, both of you being expressive beings who find meaning and purpose in sharing your unique experiences. And also as somebody who has a profound understanding of the power of vulnerability to heal and connect as we were talking about earlier creates its own tension you know like okay well

I say all these things and and you know my my whole kind of mo is sharing my life but now here I am in a very different place do I I really want to do this? Yeah. And I remember saying to Matt early on, I don't want to be a part of this film if my story serves the purpose of being the dramatic counterpoint to John's meteoric success. I didn't want my illness to be narrativized for dramatic benefit, which it easily could have been in the hands of a less thoughtful, less skilled filmmaker. And so we had a lot of conversations.

We had conversations every day, every week, where we had to continually reassess, this is something we want to keep filming. This is something we want to keep doing. This is something we want to keep doing. What was off limits? Nothing. Nothing. I mean, you really do get the feel that he's living with you. I mean, we are getting a bird's eye view of your daily life.

And the truth is, you know, as uncomfortable as it was to open ourselves up in this way, especially for me, where I was feeling my worst, looking my worst, I also knew that we had an opportunity on a whole new scale to pull back the curtain and to show that duality and that if we were going to do it, we had to do it right. Right. Which is to say that nothing could be off limits. So John is somebody that you met when you were 13 at like Juilliard summer camp or something, right?

At band camp before Juilliard. You played a stand-up bass as a young person. John was this musician from New Orleans. You had struck up a friendship as young people. You reconnected when I think you were a senior in high school, and he was a Juilliard. You bumped into him on the subway. He was playing music.

Do I have that right? Pretty much, yeah. I think I was 16. I would have been a junior in high school. I dropped out of high school. And you had kind of a spark moment shortly before you left for Paris at a going away party. But you weren't really a couple until you returned from Paris and kind of came out the other side of your first chapter with leukemia.

Then you become this couple and you end up getting married the night before you go back into the hospital, which is quite extraordinary. So John is getting involved with you knowing full well all of the uncertainty that this relationship presents. Yeah.

So what does that say about who John is? Like, how do we understand John Batiste? What a question. A very hard one for me to answer just because, you know, he's one of the most expansive, surprising, relentlessly unique individuals that I've ever encountered. And we had been together, you know, for about nine years or something. By the time I got sick, we'd been talking about getting married. But like a lot of couples during the pandemic, we were talking about getting married. we figured we would wait until it was

safe enough to have a big gathering. And the way that John put it to me was he said, we had a plan and we are not going to let cancer get in the way of that plan. And so we decided, you know, 24 hours before I entered the bone marrow transplant unit and was getting ready to be admitted to the hospital for several weeks to throw together a living room wedding, which is what we did. And John rented a grand piano for the night. We had champagne and fried chicken sandwiches as takeout. And we had this beautiful impromptu ceremony. We didn't even have wedding rings. We had twisty bread ties as rings.

The backstory with the twisty tie rings was all about. We had done everything. We had gotten a virtual marriage license earlier that morning while I was in the OR getting prepped for a port to be implanted into my chest, we had rushed to throw together outfits. And at the 11th hour, we realized we didn't have wedding bands. So that's where the red ties came from. And it moved me so much that this was his reaction.

I mean, we have the usual vows of in sickness and in health. And for us, we were starting that journey of marriage deep in the in sickness part of those vows. And I remember the next morning when I woke up feeling such a sense of hope that I think would have been really hard for me to muster as I was getting ready to go in the hospital because it wasn't just a marriage, it wasn't just a celebration of who we were as a couple, but it felt like this act of optimism, of saying, we are going to have a future and I will get to exist in that future. He's a special guy, that John.

I mean, in addition to just being absurdly handsome, he has a certain unique charisma about him. But that charisma, and he's a natural born performer, of course, but there's a joy and a gratitude and a curiosity. Like when he is with somebody, he has that thing where you feel like you're the center of the universe when his attention is focused on you. But it's coming from a really genuine place of wanting to understand people. It's quite a thing that he has. And I knew that about him long before we were ever a couple. When I first got sick and I spent that summer in the hospital and learned that all of the standard chemotherapy treatments were working for me. That very same day, John heard about my leukemia diagnosis and he was in rehearsal with this band

and he brought the whole band to the hospital unannounced, uninvited, and put on a spontaneous concert right there for me in my hospital room. And as the sound of music started to filter, started to filter into the hallways of the hospital, all of these patients and doctors and nurses came out of their rooms and everyone began to dance and sing together. And that's who John is. He shows up in the hardest moments. Doesn't matter if he knows you, if he doesn't know you. And he did that for me that day and he continued to do that for me again and again and again long before we were in a relationship. And so in a way, you know, this response to the recurrence wasn't surprising to me. He's that guy.

He's the guy who says, we're going to get married today and we're going to make it happen. Because moments like this make you realize what really matters. Meanwhile, you go back into the hospital and then he's just on an absolute rocket ship, like, you know, beyond anything that mere mortals can understand. Like the arc of his career at this moment in time is just at the peak

of all peak experiences. And we see much of that experience through his eyes or as the viewer, like we're seeing him of is your internal experience of having to process that your husband is off in the world, you know, experiencing his best self while you're in this powerless condition, unable to enjoy it with him, but also, you know, unable to be in your own best expressive self. You know, I've known John from the time he was in braces. I have watched him work at his craft every single day. And when I found out I was sick, John's immediate reaction was, I want to shut the machine down. I want to be in your hospital room. I don't want to go to the Grammys. I don't want to go to work and perform on The Late Show. I it felt unacceptable to me that he miss out on this moment because of this

cruel twist of fate that I was going through. And so I very much pushed him to do all of the things and to seize whatever opportunities were coming his way. And I think in a sense, it was harder for him to be away. He felt like he was living this double life where, especially in the midst of so much glitz and glam, it felt impossible to care about all of that when his head and his heart, you know, were still in that hospital room. But like everything, he came up with a very creative solution to our being physically apart. And he began composing lullabies for me. He would compose them every single day. He had a keyboard connected to his laptop, and I would listen to them on loop for hours and hours and hours. Because for anyone who has spent a night in the hospital, you know it's not a restful place. Hospitals are noisy places.

There's a constant beeping of IV machines, the wheezing of respirators, the alarms that go off whenever your condition abruptly worsens. And so him composing these lullabies was something that brought him solace. They brought me great solace to listen to. I love lullabies because they're so elemental. You know, most lullabies are written in triple meter because they say that it mimics the experience of a baby in the womb listening to its mother's heartbeat. They're intended to soothe, they're intended to help you rest. And they made me feel like he was right there in that room.

But I'll also add that I didn't feel powerless in my hospital bed. I, that I didn't feel powerless in my hospital bed. I, you know, having gone through this before, knew that the only way to not only survive whatever it was that I was going through, but to really figure out how to live and to thrive in the midst of that, was going to lie in my ability to alchemize that isolation and suffering into something creative and meaningful and maybe even beautiful. And so that's what I tried to do in my own way. And what did that look like specifically? You were painting. So in a perfect world, it would have looked like writing and journaling, which are my two first loves, but I couldn't do that. I was on a medication that caused my vision to blur and double and made it very difficult to see. I was trying to write a little bit using voice dictation, but it was really frustrating and really slow. And so I picked up a paintbrush, which is something I haven't done from the time I was a child.

And I began to paint these literal fever dreams that I was having. These sort of biblical, surreal, nightmarish visions of myself with various animals that were appearing to me. And that's what I did. with various animals that were appearing to me, and that's what I did. I remember one night in particular, it was probably the most challenging day of my life, the closest I've ever been to the veil. I had three simultaneous infections, two of them in my bloodstream, and I had zero white blood cells, and I was as close to death as I've ever been. And to add insult to injury, my friend Liz, Liz Gilbert, was taking care of my dog. And she called me that morning.

And it turned out that my dog also had cancer and had to be put down a couple of hours later. and that night I felt like I was falling apart in a way where I wasn't sure I'd be able to put myself back together I was you know brought to my knees in a way that I've never experienced before and I felt so much pain, not only physical, but psychic in a way that felt unendurable. And I had this sudden vision of a wooden marionette being connected to strings to four birds and being lifted. And I picked up my paintbrush and I had this chant on repeat in my head, which was,

I release control, I surrender to the flow. I painted that painting in one fast, furious breath. As I started to paint the ropes connecting the wooden marionette to the birds, I could feel my spine lifting. I could feel myself being lifted. And that to me is the power of creativity. It's the power to make something out of nothing, to transform the most brutal experiences into something interesting and beautiful. And it feels like a kind of magic. beautiful, and it feels like a kind of magic. That's really powerful. The catharsis of that too,

and the demand that you deepen your surrender. Yeah. That this will not be like the time before. Yeah. And you're not going to be allowed to journal because you did that last time. You're going to have to find a new way to alchemize this. Yeah. And that process of surrender

and whatever relief you experienced as a result of that, like what does that look like spiritually? Does that have form for you? So, you know, my mom is Catholic, my dad is Muslim, and my brother and I, I like to say, grew up confused as a result of that. So I've never, you know, participated in organized religion. I've never had an easily definable sense of faith or spirituality, but I have, through writing and painting and my creative work, experienced that sense of being a channel, of submitting to something bigger than myself. And I've been humbled again and again, brutally so, by this disease. And so I think for me, that experience of surrender

is the closest I've come to feeling touched by a sense of divinity. And I think it's also the only way to navigate that depth of uncertainty. To acknowledge that you don't know, that you can't know whatever is going to happen to you or to the people you love most. And to try to tap into the mystery of that and maybe even into the magic of it. If there's peace to be had, it's going to be found through that process of extreme letting go. Yeah. in tandem with that to hearken back to Liz it's your job to pull that idea out of the ether

that's yours and uniquely yours to give expression to a different version of myself might have fought against not having access to the tools that I'd learned, which for me were writing and journaling might have wallowed in that. But I knew from going through this before that to fight that, to buck up against that was going to be a recipe for endless frustration and exhaustion. And that once again, when you let go of your striving and your fighting and your muscling,

things reveal themselves, things that you might not notice otherwise if you're busy striving and fighting and muscling your way through. Yeah, when you're in the allowing and you can be that channel for the unconscious and the divine or the beyond, that's where the real magic occurs. And that requires a certain level of surrender. And John said something in the movie that I thought was real, that really grabbed me about that with respect to music, which was something about the inevitability of music.

Like when you hear a song on some conscious or unconscious level, you kind of know what the next note is going to be. So that it is something that actually exists and your job as the musician is to bring form to it, but that it is not yours. It belongs to the universe or whatever. And I thought about that a lot and I was like, sometimes it'll be surprising because the artist will choose a different note when your brain has an expectation that, oh, this is the note that generally should follow this.

Yeah. So you can play with those rules, but typically when you hear a song for the first time, you kind of know a nanosecond before you hear it where it's taking you. Totally, even if it surprises you. And I was thinking about how that might apply to writing or to other, you know, creative pursuits.

Like you mentioned earlier, you know, what Cheryl had shared to you about writing and you find the writing in doing the thing, right? You don't sit down with an idea of what it is. You do the thing and it starts to tell you what it is. Totally. And perhaps there's an inevitability to that as well. Robert Frost has a beautiful line.

He says, no tears in the writer, no tears in the reader, no surprise for the writer, no surprise for the reader. And I live by that. And I live by that. It's like if the thing that you're trying to make does not surprise you, does not bring you to your knees in some kind of way in the process of making it, then you can't expect that it will have that effect on the people. On anybody else. Yeah, exactly. Yeah, that's a good note. And also this idea that the writing down of something makes it real in this kind of manifesting sensibility right like an idea is an idea but once you put pen to paper

something magical happens that just allows it to become a little more real or to take root in reflecting back upon that experience when we were in Sicily, so one of the things that I was meant to do during that trip was to interview Rick Rubin in front of a group of people. So I had an early copy of his book, The Creative Act. I read it on the plane on the way to Sicily and I was very impacted by that book.

And I'm a big journaler myself. I've been doing it forever, but I hadn't been doing it consistently. And I woke up the first morning at that hotel and went out on the veranda and journaled for the first time in months. And that journal entry and the journaling that I began to do as a result of that

became the outline of a book that I'm now writing. Wow. And I would not have realized or thought that or expected that at the time, but it's just an example of how that process works in the arc of creation. And I think that you are somebody who is a very powerful manifester, somebody who has been physically handicapped for a huge portion of your adult life. And yet at the same time, somehow managed to write a New York Times bestselling book, gotten a column in the New York Times, won an Emmy, was on the TED stage. And now you've got this documentary that very well could get nominated or even win an Oscar.

Like, it's insane. You know, you're still a very young person. Like, that's an incredible resume of accomplishments. And then when you consider how much of your adult life has been spent going in and out of hospitals, it's quite a remarkable thing. So how do you think about manifestation? There's another line in the movie that really, it felt like a throwaway statement in watching the movie, but it really stuck with me in a big way, which is right after you got married

and you guys are all hanging out and John is talking about you and he said something like, oh, when I met Zuleika, she said, we're gonna change the world. Was that when you were 13? No, I think I was 20. You were 20, right? It's kind of arrogant thing you say when you're 20. You're like, yeah, we're going to change the world. But I mean, goddamn, like you guys, you're well on your way to doing that. You've already made a huge dent.

So I'm interested in where, not the ambition piece, but the sense of self or the kind of mission orientation that you have around that, that has fueled your creative works. if any of those accomplishments would have happened or been possible without the misfortune of being sick and living with so many limitations. I think you would have found other ways, though. I think it's in you. Whatever circumstances you would have found yourself in, you would have found a way to turn that experience into this creative act. Maybe so, but I also think I was someone who was a striver. I was a good student. I wanted to be a war correspondent, but because of the way

that I grew up, I didn't necessarily feel like that was a practical path for me. And so I was also toying with the idea of law school and trying to think about what might be most practical. Yeah, you're a fellow recovering lawyer. You know, getting sick foreclosed a lot of those more conventional paths and possibilities to me. more conventional paths and possibilities to me. And one thing I did in that first year of getting sick was I spent a lot of time researching and reading about the very long history and lineage of artists and musicians who've been bedridden for one reason or another

and observing everyone from, you know, Frida Kahlo, who painted her famous self-portraits from bed after being left bedridden by a car accident, or Matisse when he got diagnosed with cancer and attached a paintbrush to a long pole and painted the ceiling of his bedroom, or Virginia Woolf who wrote about mental illness and physical illness, and realizing that we all have experiences in our lives that thwart us from what we think is our path or that twist our mind out of the usual rut, and that there's an opportunity within that if you're listening carefully enough and if you're able to make space for it to see what emerges. And so I think for me, this experience of dealing with illness and living with these limitations have forced me to do just that. Because the

alternative would be to stay encased in the trauma of those experiences and encased by maybe the bitterness or the anger that might come with a sense that whatever's befallen you is unfair. And it's so much more interesting, as Liz Gilbert likes to say, to be 1% more curious about your circumstances than afraid. And so I've lived by that. I have ample reason to be afraid, ample reason to live in a safe bubble and not to put myself out there in the various ways I've chosen to do. But it's far more interesting to get curious about them and to figure out how to engage with your limitations and whatever constraints are placed upon you and to see what you can do within that. The movie completes an arc with respect to John's story, the ticking clock being the performance of this symphony, the American Symphony at Carnegie Hall. But your arc doesn't land as cleanly. We're not quite sure where you're at and what your future might hold. There's no punctuation mark at the end of your story. So like, how are you

doing that? Like, how is your health? Like, what is your current prognosis and how are you doing? your current prognosis and how are you doing? Well, first of all, I'm here. So that feels good. I've gotten to watch this film come out. I just got to watch it with all of my bone marrow transplant nurses earlier this week, which is such a beautiful experience. We'd actually never seen each other without masks on. So even that, you know, thank God for waterproof mascara. But I am in a different kind of liminal space now. I'm in a different kind of in-between place. I will be in treatment indefinitely for however long or short that might be. And when I got that news from my doctor, he said to me, you have to live every day as if it's your last,

which is the kind of thing that you say to someone when they're in that sort of limbo. limbo. And, you know, I tried hard to figure out what that meant for me, but more specifically, why it instilled an intense sense of panic in me. And I realized, you know, when you're trying to live every day as if it's your last, you're thinking about how you can wring as much out of life, how you can seize the day, and it puts you in this space of urgency and taking. And I've come to believe that as well-intentioned as that advice might be, it's terrible advice. Because if we were all to live every day as if it were our last, we'd be robbing banks and, I don't know, cheating on our spouses. Staring at trees. Eating ungodly amounts of ice cream.

And so instead, as I navigate this new level of uncertainty, which of course, you know, we all have. None of us know what the future is going to look like. And life is a finite condition for all of us. I've shifted to a place of trying to live every day as if it's my first, which is to say waking up with a sense of curiosity and wonder that a newborn baby might. And rather than seeking out these like huge important life moments, seeking out moments of play and tiny little joys and moments of nourishment. And that has made it such that I feel like I'm moving through this uncertainty in a way that doesn't put me in panic,

but places me in a state of wonder and awe and generosity. Also, I hope allows you to kind of really enjoy this thing that's happening now with the movie being out and everybody enjoy i mean that could be very destabilizing for a lot of people you know in hollywood you're getting a lot of attention there's a lot of press but i would suspect having lived the life that you've lived you can approach this from a very different kind of healthier place of like this is cool this from a very different kind of healthier place of like, this is cool. This is not the most important thing. And I can enjoy it for what it is and not get caught up in kind of the distracting irrelevancies that, you know, kind of get packaged into this type of experience. It really has. It's changed everything for me. You know, and as grateful as I am for, you know, the love

that this documentary is getting and as much as I hope that it, you know, resonates with the people who watch it, my priorities are elsewhere. Instead of doing press, I'm peacing out tomorrow and going to the beach with my friends for a couple of days.

Because that's what sounds fun and nourishing to me. And that's not something I would have allowed myself before. You know, David Brooks talks about resume virtues in contrast to eulogy virtues. And I'm living for the eulogy virtues right now. Beautiful. The movie's called American Symphony, and that's because that's the name of the symphony that John is working on. And we see that creative process kind of unfold over the course of the film. And I was thinking about the larger themes at play or like the metaphor that's built into that title.

I mean, John is a master of synthesizing a whole variety of influences to create his own type of music where you can easily identify like, oh, this comes from here and this comes from here. And when we were in Sicily, he kind of talked about that and performed his music.

And you get to see how he plays with everything from, you know, New Orleans jazz to Beethoven and has this sort of mashup approach to create his art. And this symphony, my sense is that the idea behind it is, although it's not kind of overtly stated, is that what would a symphony look like, like a classic symphony, if it was about the true American experience, like the reality of the melting pot of influence that crafted the soul of America in all its pain and beauty. What would that look like if it was a symphony? I don't know if that's accurate, but that was how it felt. And then thinking about how he's the result of so many influences and then you being Tunisian, Swiss, having these Muslim and Catholic influences. this is an american story

like the american symphony is you and john and your relationship as much as it is this performance at carnegie hall and the music that you know ended up getting nominated for grammys yeah it's really about the symphony of life the way i understand it and the synthesis of what can feel like contrasts we are so steeped in binary thinking but the truth is most of us aren't either happy or sad or healthy or well know, the border between those binaries is porous and much of us are forced to live in synthesis, to exist in that messy middle. And for John, there's that confusion.

He's in the shower. I'm a pop star. He gets like, you know, it depends upon what genre you're affiliated with. You know, that's how the lens through which John is celebrated or criticized, right? Like, is he a classical musician? Is he a jazz musician? Is he a pop star? Like, who is he? And he's able to like play with that. You can tell it bothers him a little bit that he gets a bunch of shit about that. But isn't that America?

And isn't that the tension that creates the beauty? And this is about him being in his own in-between or liminal gray area where he can't be pigeonholed or defined. His version of your experience trying to figure out where you belong in the world where one foot is on one side and one foot is on the other. Well, and I think in this world where we're more divided than ever before, my hope is that offering that liminality as a third way and also you know holding that duality um as something

that might be a bomb to people who feel like misfits yeah who aren't categorizable categorizable i think that's a word yeah i don I don't know. Let's make it one. John said about you, quote, she's able to transform darkness, alchemize darkness, and transmutate darkness into light. What does that mean to you? What does that mean to you? You know, I think we often think of healing as ridding ourselves of the pain that plagues us, whatever that pain might be.

And I have tried to do that in every number of ways, from numbing it to compartmentalizing it to dodging it to stowing it as far down as I can. But the only way that I've been able to endure these various things that have happened is by engaging with that pain and looking it directly in the eye, observing it the way you might through the lens of a kaleidoscope where you shift the prism and the light falls in a different way. And how are you channeling that creative impulse now? I know you have a couple of projects that you're working on. I'm working on a couple of different projects. I'm working on two books, one called The Book of Prompts, which is about the alchemical properties of journaling.

And the other that I'm calling Drowning Practice, about this year of recurrence and really figuring out how to surrender and float. And it's 12 of the paintings I made paired with 12 essays. And, you know, nothing about these books feel intuitive to me. Books, as you know, take a long time to write. intuitive to me. Books, as you know, take a long time to write. But again, I think, you know, the temptation for me is to stay glued to the present. The future feels like a scary place for me right now. But I guess these projects are my way of forcing myself to think ahead and to make commitments to the future. Does that feel uncomfortable to you to make future commitments? Definitely.

It feels like a very tenuous act of planting a flag and hoping to God that you'll get there. But hope is a courageous act, more so for you than the average person. Yeah. Hope feels like a dangerous and risky act sometimes. But what is the alternative? Exactly. You have to. You have to.

Yeah. Yeah. Yeah. Of all the things that you've done and accomplished and suffered through and high highs, low lows, you mentioned, we took a break, that you still feel like this imposter, that you do have an imposter syndrome, which is surprising to me as somebody who said we're going to change the world to John as a young person in some ways I love my imposter syndrome it's the thing that fuels me to work harder at my craft to push myself

but I also think it comes from a lifelong experience of feeling like a misfit on the outside of things. I've never quite fit and I've come to embrace that and to love that even though it feels a little uncomfortable in certain situations. And I'm, you know, someone who feels a huge amount of fear. I feel a huge amount of fear before I do anything. And then I do it anyway. By do anything, you mean embark on a creative project or anything in general? Because you've met fear in places most people never venture. So my instinct would be that tackling a creative project is not scary because you know real fear. Yeah, I think like a lot of people, you know, who've been in the belly of the beast, I feel most at ease when the stakes are life or death. I know how to navigate that. It's the everyday part of life that is scarier to me.

creative projects, I feel a huge amount of fear. As I was saying earlier, I have to greet my fear, welcome it, and then make space for the curiosity that leads me beyond it. Doesn't Liz talk about that like a road trip? You can come on the road trip, fear, but you have to sit in the back seat or if you talk too much, you're going in the trunk or something like that. Exactly, exactly. Yeah, yeah. What didn't end up in the movie

that you kind of wish had? Was there anything that was left out that you think would help complete the story or? I mean, so much was left out given how much footage we had, you know, and a thousand different filmmakers would have made a thousand different films. But I like that at least my role in the story is left on this note of ambiguity.

and ongoingness to that struggle. There is no neat ending as much as we might like one that's wrapped up in a perfect bow of a message. And so I appreciate that Matt, the director, you know, left the viewer in that gray space. It feels like a much more honest ending to that story than the alternatives. And what would you hope for somebody to take away from the film? John says at one point in the film, when he's under a tremendous amount of pressure and the stakes feel impossibly high, he asks a friend, am I going to crack? And to me, the question for all of us

isn't, are we going to crack? Because I think it's a certainty that we will have moments of cracking. But my hope that people will take from the film is what you do when the crack happens. How you continue showing up and love for the people you care most about. How you improvise and pivot in the way that John with his jazz roots so masterfully does both in his music, but also in his personal life, and how we can all reimagine survival as its own kind of creative act. Whether you think of yourself as creative or not, I think creativity is a gift that we all have access to and that we can all benefit from. Yeah, it's beautifully put.

There's a moment in the film when John's performing on stage at Carnegie Hall. The symphony is in full swing and the power goes out. And there's a long pause pause and then he begins to play and what he plays is improvised and that improvisation goes on for 10 minutes 12 minutes and within that you see this montage like it's sort of a flashback of your life together with John. And that's the whole movie. What do you do when the power goes out?

You improvise. You improvise. And his choice around that improvisation felt very personal to you. It was like he had an awareness of the extended metaphor of the power going out. opening in which he could bring expression to all of his confusing emotions around what was happening in his personal life and what you were enduring. And it was like a little missive to you in the middle of that symphony that says everything you need to know about who he is, your relationship, and survival as a creative act, in my opinion. Like, it was so beautiful. It was really, it was quite moving. Because there are so many reactions you could have

if you're John in that moment, and the power goes out mid-performance. You could stop the concert, make an announcement, hope for the power to come back on. You could run off stage in tears, but I love that he was able to surrender to the power going out, to pause, take stock of what was happening, even to smirk a little bit in defiance. And then to listen for whatever it was that was arriving to him and to play. And the irony is nobody in the audience, maybe other than me, knew that the power had gone out. Oh, really? Oh, I didn't get that from watching it. I knew because I had heard versions of it,

but nobody had any idea. Wow. And that was the beauty of it. They just thought, this is part of the thing. This is part of the thing. There's a 10-minute piano solo in the midst of the symphony, because why not? Yeah. Beautiful. I want to close with some thoughts on change, which is something that I

think a lot about. You're somebody who's had to change in partnership with changes that were foisted upon you. There's change that you have to weather, external changes that you have no control over, and then there's change that you initiate. And as somebody who's been compelled to change and then volunteered for other changes, how do you think about the nature of being in relationship with changes you don't have control over?

And then conversely how do you how do you kind of leverage your own will or sense of purpose and direction in your life to initiate positive changes in how you're living your life what comes to mind is a line from the Holocaust survivor and psychiatrist Viktor Frankl. I think about it probably every day. And he says, between stimulus and response, there is a space. And within that space is our freedom to choose how we respond. And within that response lies our growth and our freedom. And so I, like many other people, have been faced with something that's happened that has maybe on its surface left me feeling powerless. But I always hold in mind the fact that I have the power to choose my response to the stimulus and that that's a great deal of power and that there's a great deal of agency within that. And so no matter how powerless I feel, I always try to locate whatever that small act of agency is that I have. And so for me, that's looked like writing and painting and learning how to drive and who knows what else will come down the road.

knows what else will come down the road. But I take a great degree of comfort in knowing that within how we choose to respond lies the power to transform whatever it is that you're experiencing, whatever it is that makes you feel disempowered or even helpless. It's easy for me to say that. I don't think it's easy for you to say that. I think you've earned the right to say that. But I also want to say that, you know, whatever that response is, it usually takes a long time for me to figure out what that is. This isn't something that happens overnight. You mean you're a human being? Yeah, exactly. It takes many months of binge-watching Grey's Anatomy

and raging against the world sometimes to get to the place where you figure out how you want to respond to something. And that's okay, too. Yeah. Thank you. This was really beautiful. Thank you.

To spend this time with you. I was very deeply moved by the film. I think it's just a beautiful, poetic work of art. It's only been out for like two days at this point. Yeah. But already the reception is pretty dramatic. It's nothing but universally adored at this point. And I'm excited for

you know kind of the fun adventure that you get to have with this and like I said earlier I hope that you can just be present and enjoy it for what it is it's a pretty special peak experience that I think you've more than earned for yourself and nobody is more deserving than you

and John I just I love you guys individually and as a couple it's inspiring to see you collaborate and co-create together. And I wish only the best for both of you. Thank you. Yeah. We love you. And we're grateful to you for being our wonderful dinner companion at that terrifying event. And hopefully our future dinner companion at less terrifying events yeah cool um all right well great well hopefully we can do this again i would love that i appreciate it thanks thank you

peace that's it for today thank you for. I truly hope you enjoyed the conversation. To learn more about today's guest, including links and resources related to everything discussed today, visit the episode page at richroll.com, where you can find the entire podcast archive, as well as podcast merch, my books, Finding Ultra, Voicing Change in the Plant Power Way, merch, my books, Finding Ultra, Voicing Change in the Plant Power Way, as well as the Plant Power Meal Planner at meals.richroll.com. If you'd like to support the podcast, the easiest and most impactful thing you can do is to subscribe to the show on Apple Podcasts, on Spotify, and on YouTube, and leave a review and or comment. Supporting the sponsors who support the show is also important and appreciated. And sharing the show or your favorite episode with friends or

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