New York Times bestselling author and journalist Suleika Jaouad began writing her Emmy Award-winning column, “Life, Interrupted,” from her hospital room, chronicling her experiences as a young adult with cancer. She joins to discuss her remarkable life, career, and bestselling memoir, Between Two Kingdoms.
Debbie Millman:
When Suleika Jaouad was a young woman, she wanted to be a foreign correspondent. That career plan was upended by a cancer diagnosis when she was 22 years old. But in spite of being told she had only a 35% chance of survival, her creative spark didn’t diminish. They turned inward. Suleika wrote about surviving cancer in Life Interrupted, her Emmy Award-winning column and video series for the New York Times. She’s also written a New York Times bestselling memoir about the experience, titled Between Two Kingdoms. More recently, her cancer returned, and she had a second bone marrow transplant. That experience is chronicled in the multiple award-winning Netflix documentary American Symphony, which also features her husband, the celebrated musician, Jon Batiste, as he composed his first symphony for Carnegie Hall.
Suleika Jaouad, welcome to Design Matters.
Suleika Jaouad:
Thank you, Debbie. I’m so honored to be here.
Debbie Millman:
Oh, Suleika, I am so thrilled. I have an unusual question for you as my first question. I understand that you have an irrational fear of sharks, and I kind of want to know how any fear of sharks could be irrational.
Suleika Jaouad:
Thank you for this. I feel the same way. I’m someone who, every time I go on vacation to a place where there is any body of water, I immediately Google the number of shark fatalities in that place.
Debbie Millman:
Wow.
Suleika Jaouad:
And it’s something I’ve had from the time I was little. It doesn’t matter if I’m in an ocean, or a lake, or a pond, I have a deep fear of what’s beneath the water, and what I can’t see.
Debbie Millman:
Yeah, I do too. I really, overall, have a somewhat irrational fear of the ocean. In that, I really like to be able to see my feet in the water. Something about being grounded, I guess.
Suleika Jaouad:
I love it.
Debbie Millman:
In any case. Like me, you were born in New York City, but you were constantly on the move in your early childhood. You moved from the East Village to the Adirondacks, followed by stints in France and Switzerland, and Tunisia. By the time you were 12, you had attended six different schools on three different continents. Why did your family move around so much?
Suleika Jaouad:
It’s an excellent question. One that I asked myself quite a bit, when I was little, because like a lot of little kids, all I wanted was to feel normal. Whatever that meant. My dad is originally from Tunisia, it’s where his entire family lives. It’s where, actually, my parents and my brother now live. My mom is Swiss, and they both immigrated to New York in the ’80s, and I think they were really trying to figure out what home meant for them. My dad was a complet professor at a small liberal arts college in upstate New York, and my mom was a painter.
And so, in those early years, I think they were shuttling between their respective homelands, and the home that we were trying to make for ourselves in upstate New York. And the truth is that shuttling has continued happening, so home was really an elusive concept for me as a kid. And it’s only pretty recently in my life that I’ve been someone with a fixed address, who doesn’t live out of a suitcase. And it certainly was a slightly destabilizing way of growing up, but I think it also forced me to become a chameleon. I was an expert new kid on the first day of school, and I look back on that experience and I think, for so many children of immigrants, especially when you speak one language at home and another at school. You become a kind of translator between your family and the world. And those skills, I think, have made me a writer. Those skills of observation, of customs, of idioms, of all kinds of things.
Debbie Millman:
Yeah, I think it gives you a very particular kind of awareness, as you’re trying to make sense of how and where to fit in. And when you first came back to the United States and started kindergarten, you actually didn’t speak a word of English, and have said that the curse of the mixed child who grows up betwixt cultures and countries, creeds and customs, is too white, too brown, too exotically named and too ambiguously other to ever fully belong anywhere. And I understand that, at that time, you wanted to legally change your name from Suleika, which is your name in Arabic, to Ashley. Is that true, to Ashley?
Suleika Jaouad:
The coolest girl in my fourth grade class was named Ashley, and her nickname was Ashtray, which was-
Debbie Millman:
Oh, gosh.
Suleika Jaouad:
… even cooler to me. So not only did I want to legally change my name to Ashley, but I wanted my parents to call me Ashtray, which of course they refused, and rightfully so.
Debbie Millman:
Yeah. It reminds me of the character from Euphoria. Is the Arabic pronunciation that I attempted the correct way to say your name in Arabic?
Suleika Jaouad:
Yes, that’s right. So both my parents pronounce my names differently. Suleika, In Arabic. Suleika, in French, in English, or as my husband who’s from New Orleans says, “Suleika.” So there is always confusion around the pronunciation of my name, but I remember that first day of kindergarten so distinctly, the terror of being in a place where you don’t understand what people are saying, where people are laughing when you’re attempting to speak the language. And I think I had a self-consciousness around language, and around English specifically, from such an early age.
I’m still someone who, whenever I hear a turn of phrase or an idiom that I’ve never heard before, I immediately write it down and then proceed to try to use it as much as possible in every single conversation for the next couple of days, until I’ve mastered it. But I think that feeling of otherness really felt like an albatross. The tyranny of cafeteria lunchrooms, when you’re the kid showing up with couscous-
Debbie Millman:
That’s a good word, tyranny.
Suleika Jaouad:
… and tajine. And at that age, all I wanted was a Pop Tart, or very orange American mac and cheese. And I think at some point, by the time I turned 12 or 13, I realized that as much as I wanted to assimilate, as much as I would have loved to inhabit the Ashleys of the world, that just wasn’t going to be possible. And so, embracing that otherness, and I guess leaning into that difference, became my ammo.
Debbie Millman:
You’ve said that hustle is your family’s defining trait, and I’m wondering if you can share why you feel that way, or in what way?
Suleika Jaouad:
So my dad is someone who grew up in a family of 13 children, both of his parents never learned to read or write, and he is the only one of his siblings to have left Tunisia. And he worked all kinds of odd jobs while he was embarking on his studies, from a bell hopper at a seedy motel, to all sorts of things. And my mom, in particular, I think is someone who embodies that sense of hustle. When she first came to the East Village in the ’80s as a young aspiring artist, she was trying to figure out how to pay the bills. And so she started what she called the International Language School, and hired all of her friends as language tutors to wealthy business people uptown. And of course, this wasn’t an actual school, it was her landline and her apartment. And she would answer the phone and pretend to be a very official sounding secretary.
But I think that instinct to survive, to figure out how to make things work, to pivot as needed, and to adapt and move forward at all costs, was really a guiding tenet in our household. And we were firmly middle class and upstate New York, but there also wasn’t any sort of security blanket beneath us. So even when it came to college, I was fortunate to have the option of attending the school where my dad taught free of charge, but my parents made it very clear, “If you want to do something beyond this, that’s on you, you’re going to have to figure that out. You’re going to have to pay for your own way.”
And because nobody had helped usher their way, relative, especially to the way my dad grew up, we had immense privilege. We were living in the United States, and going to a good public school, and had access to education in a way that wasn’t so easy for him. And so there was always this sense that, given the leg up that we’d had, it was our responsibility to make something of that. To figure out who we were, and what we wanted to contribute to the world.
Debbie Millman:
You started piano lessons when you were four years old, at the urging of your parents, but it wasn’t until fourth grade that you chose music for yourself. And your music teacher at Lake Avenue Elementary School stood in front of the class with a dozen stringed instruments lined up at the front of the room, and asked you to choose your instrument. Tell us what you chose and why.
Suleika Jaouad:
So as well-intentioned as my mother was, she was very sort of stereotypically Swiss about her approach to my piano lesson. So I was forced to practice every single day. I studied the Suzuki method. I hated it. I wasn’t very good at it. And I remember that day in that fourth grade classroom so distinctly, because everyone was clamoring for the popular instruments. For the violins, for the cellos. And no one, with the exception of a couple of supernaturally tall boys, were interested in the double bass. And I immediately felt drawn to it, for two reasons. One, because I liked the fact that my teacher had told me that no other girl had expressed interest in playing it, and it seemed like its own kind of outlier in the orchestra, which was very much how I felt. But also because the mischievous part of me liked the idea of picking the instrument that would inconvenience my parents the most. And so, that’s what I did. And to my surprise, and I think to my parents’ surprise, I fell deep in love with the bass.
Debbie Millman:
And I believe you gave your bass a name?
Suleika Jaouad:
Yes, Charlie Brown.
Debbie Millman:
And why is that? Is it, I was trying to imagine why it was Charlie Brown, and I wasn’t sure if it was because of the round nature of the instrument, or the sort of wah-wah noise that the parents made, sort of as a way of being more defiant with your parents.
Suleika Jaouad:
Exactly. I think all of it, and it was a totally ridiculous sight. I was too small to carry this very large instrument, so my dad would have to shuttle it around for me. And in those early years, I would have to sit on a stool in order to reach all of the places on the base that I needed to reach. But I loved it, because it’s also the only instrument that you hug with your whole body when you play it, and you hear every note vibrating through your chest. And there was just this grounded feeling that I had, whenever I got the chance to play it.
Debbie Millman:
You went to band camp at 13. I sort of had this vision of it being like an episode of the TV show, Glee. I have no idea if that’s accurate or not. What was that like for you?
Suleika Jaouad:
It was far more awkward, I can tell you that than anything that might ever have appeared on Glee. So I was in the orchestra camp and I loved it. I had gotten a scholarship to attend, and I felt like this portal had suddenly opened onto a world of possibility. I’d never considered playing music seriously, but I remember feeling for the first time, the deep sense of satisfaction that comes when you’re building a muscle and you see it getting stronger.
Debbie Millman:
Isn’t that remarkable?
Suleika Jaouad:
And I could actually watch that incremental progress happening, in real time. And I decided, pretty much after that summer, that I was going to become a double bassist, and I wanted to play in the greatest orchestras in the world. And that was my big dream, at that age.
Debbie Millman:
And this is where you met your now husband, the Oscar and Grammy winning musician, Jon Batiste. What was that first meeting like?
Suleika Jaouad:
Correct. Jon was in the jazz camp. He was all braces and gangly limbs. And I don’t think he would mind me saying this, because it’s how he described himself at the age, but he was just sort of shockingly, gloriously awkward. And I remember, the first time I encountered him, I tried to speak to him. And he was so shy, that he barely said a word back. But what I remember most distinctly was the end of summer concert, where all of the parents are invited to come and to pick up their children. And Jon played so extraordinarily, so virtuostically, despite only having played the piano for a year or two at that point, that everyone in the auditorium leapt to their feet and gave him a standing ovation, which is not something that happens at end of summer band camp recitals. And I just remember thinking, “This is someone extraordinary and intriguing,” and that was that.
Debbie Millman:
No crushes?
Suleika Jaouad:
No crushes.
Debbie Millman:
No chemistry?
Suleika Jaouad:
No, I think, intrigue. The crush came later. The crush came about three years later.
Debbie Millman:
Now I understand, and I don’t know if this is correct or not, but I found in my research that he wrote his first song for you, at that time. Is that true?
Suleika Jaouad:
No, it’s not true. And it’s also a point of discussion between Jon and me, at this very moment. So what I remember, which is not what he remembers, is that he dedicated a song to one of the ballet dancers, because there was also a sort of parallel ballet camp. And there was mass giggling at the top of the auditorium. But he told me, recently, that it wasn’t him who dedicated the song because he was far more interested in video games and jazz, than he was in girls. And he would never have dared do anything so bold and forward, so I’m clear.
But what he did tell me as we were discussing all of this is that if the jazz musician dedicates a song to you, don’t get too excited about it, because they can improvise anything on the spot. It only counts if the dedicated song makes it onto an album.
Debbie Millman:
Ah. So, Butterfly counts.
Suleika Jaouad:
Exactly.
Debbie Millman:
When you were 16, you won a scholarship to attend the pre-college program at Julliard School, in New York City. And for the next two years, every Saturday morning you got up at 4:00 AM so your dad could drive you the 45 minutes to Albany, to catch the Amtrak to the city. And after a long day of orchestra rehearsals, masterclasses, music theory, and auditions, you began to struggle with the schedule at school. And ended up striking a deal with your parents about the rest of your high school education, and I was wondering if you can share what that was?
Suleika Jaouad:
Yeah, that experience, that pre-college, I think was one of those fork in the road moments that we all have, but that was a big one for me. I was really struggling at my high school in upstate New York. I was getting mixed up in the wrong crowd, I was rebelling. I was a terrible student. And at one of these end of summer band camps, I had the opportunity to play a bass solo, and someone in the audience approached my parents afterward, and invited me to come to New York City and to meet someone by the name of Homer Mensch who was the principal of the New York Philharmonic, and to bring it back to sharks, he famously played the opening sequence of the movie Jaws, on his bass, that duh-duh, duh-duh.
Debbie Millman:
Wow, that’s incredible.
Suleika Jaouad:
Yeah. And it was extraordinary. I mean, it really changed my life. For the first time I was meeting kids who had a kind of ambition I’d only really read about in books, who had the discipline to spend seven, eight hours a day alone in a practice room. And who wanted everything, who wanted the world. And coming from a small town, I wasn’t used to being around people like that. I had this sense that I wanted to sort of thrust myself into the greater expanses of the world, but the how of that was completely unclear to me.
And so by the end of that first year, especially because of Homer Mensch and his mentorship and support, he really made me feel like I had the possibility of actually seeing this dream through. But with the commute, and with the number of hours that I needed to practice in order to keep up, it was becoming completely untenable. Because not only was I waking up at 4:00 AM on a Saturday, I was waking up at 4:00 AM every day of the week, to get in three hours of practice before I went to school, so that I’d have time to do three more hours when I got home.
And so the deal with my parents was that I could drop out of high school, but that I had to take at least two days of classes at Skidmore College, where my dad taught, and where I could attend for free. But the one thing that I look back on and marvel at is, they didn’t say to me, “You have to take pre-calculus,” or you have to take whatever the equivalent of your high school classes were. They gave me ultimate license to choose whatever I wanted. And so what I thought was my way of minimizing my schoolwork actually became the very opposite, because I was taking modern dance, I was taking a Women in Literature class, I was taking a class on Nabakov. I was reading all kinds of things that I hadn’t really had the opportunity to study in that way. And over the course of that year, I realized that while I loved music, there was so much more that I was hungry to learn about.
Debbie Millman:
I read that you loved the literature classes so much that you were taking, you started looking up English syllabi at different schools, and assigning them to yourself. I thought that that was sort of a wonderful example of how you assimilated your family hustle.
Suleika Jaouad:
Yeah, totally. Actually, I remember it so distinctly. A few girls from my high school had gone to a very fancy boarding school nearby, and I desperately wanted to attend, because I had just watched the movie Mona Lisa Smile. I don’t know if you’re familiar with it.
Debbie Millman:
Yes.
Suleika Jaouad:
But all the girls show up on the first day of class, and they’ve already read the textbook, but not only are they smart, they’re fabulously cool and funny and fierce. And so, I wanted to inhabit a world like that, and that wasn’t a possibility for us. And so what I did was, I looked up the syllabus at that very same boarding school, and tried to teach it to myself.
Debbie Millman:
I love that.
Suleika Jaouad:
I’ll just add that, you asked me about my crush on Jon. My very first day at Julliard, I was on the 1 train going to the campus, and I was with my friend Michelle. And we saw this young man who was behaving kind of strangely, and people were sort of looking at him. This young man was singing, and playing air piano, by himself. And I looked at him and I turned to my friend and I said, “I know that guy. That’s Jon Batiste from New Orleans. I went to band camp with him.” And then I said, out of nowhere in the way that 16 year olds do when they just run their mouths, I said, “That’s the man I’m going to marry someday.” And then I completely forgot about it, only to discover that he was also a student at Julliard.
Debbie Millman:
I just want to let that sink in for a second. You applied to Princeton University where, you not only got in, you got a full scholarship. And while there, you played in the university orchestra, but you also applied to the creative writing program your freshman year. And were rejected. And you’ve said that you took that rejection particularly badly. Why is that?
Suleika Jaouad:
I felt a huge sense of being an imposter, when I went to Princeton. I remember when I was thinking about leaving Julliard, my teacher, Homer Mensch had died, and I had been reassigned to the only female bass teacher at Julliard, and I was so excited to finally get to study with a woman. But rather than the kind of mentorship I’d had with Homer, it was the very opposite of that. She was tougher on me than everyone else, and she could be quite cruel. And I remember coming back from a weekend with a friend, visiting her brother at Princeton, and saying to her, “I visited this school and I never even considered that I could go to a place like this, but I’m interested in applying.” And what she said to me was, “You should do that. You should go to Princeton. You’re pretty enough that you’ll marry a wealthy man by the time you’re 22, and that’s a far better career path for you.”
I felt such rage in that moment, and such humiliation. That was the thing that propelled me away from music, because I did not want to continue studying with her. And that left a kind of chip on my shoulder, that proved to be useful, in the sense that it lit a fire under me. So when I did get accepted, I felt equal parts excitement and terror. I remember watching every episode of Gossip Girl in preparation for what I imagined a school like Princeton to be. I also read Prep, by Curtis Sittenfeld, but I had no sense of this world I was about to walk into. And so to receive that rejection first semester was confirmation of something that I feared, and hoped wasn’t true, and took to be true. And so after that, I would write for myself. I would write little fictional stories. I wrote obsessively in a journal, but I put the idea of pursuing writing seriously to the side.
And the irony is, there are a couple great writers from my same class who published beautiful books, and I’ve since learned that they too were rejected from the creative writing program. So I think, at that age, rejection can be devastating, it can be motivating for some. But I didn’t have the kind of confidence in myself, and my ability to look beyond that sort of outward validation, or outward confirmation of my failure.
Debbie Millman:
In your junior year, you came across a journalism class in the course catalog titled Writing About War, and it was being taught by the journalist Thanassis Cambanis. What gave you the strength or the courage to try again?
Suleika Jaouad:
So I was a near Eastern Studies and Gender Studies major, and I was studying Farsi, I was studying Arabic. I had spent every summer traveling to the Middle East, and traveling back home to Tunisia, and doing research. And so I felt not a sense of confidence in my ability to write, but I felt confident in my knowledge of this region and its complexities, enough to apply for this class. And I loved everything about it, from moment one. And writing about war is easier said than done from Princeton, New Jersey. But even that proved to be such a fascinating challenge.
Debbie Millman:
You traveled across North Africa and the Middle East to study women’s rights through narrative storytelling and oral history, and this led to your writing your senior thesis about the subject. I believe that one of the chapters was titled “Voices of the Voiceless,” and it detailed the under-reported stories of women in Tunisia, and it also included your grandmother. Your thesis won several awards, including a prestigious award called the Ferris Prize. Did that change your ambition to be a musician? Was that when you sort of had to decide, “Which direction am I going in?”
Suleika Jaouad:
I knew pretty much as soon as I left Julliard that I did not want to be part of the classical music world, even though I continued to play, and to love music. But it changed my sense of confidence. I had started school feeling so unsure of myself, and unsure of my own merit and right to inhabit this world, and there were so many things about that school that proved really challenging. I mean, if you’re on full financial aid, you have a work study. And the very first job I was assigned was serving fellow students in the dining hall. And I’m not above serving anyone, but there was such a clear sense of divide, even optically, because a lot of my fellow work study colleagues were fellow students of color.
And to sit there, and to serve the richer students, was just such a bizarre way of being put in your place. And there were so many examples of that, during my time there, but more than anything I just flourished in this environment, where there was so much to learn. There were so many extraordinary professors. There were unlimited research and travel grants available to me. And by the time I graduated, I knew not necessarily who I was, but what my potential might be. And so those awards, for me, meant something. Because I started out as a struggling student academically, and I had worked really hard to get to a place where I felt I had steady footing.
Debbie Millman:
You’ve written a lot about bridging the gap between what you found interesting, and what might actually be practical or possible, especially at that point in your life. Did that have any influence in what you were choosing to do, in terms of what your parents’ expectations might’ve been for you at the time?
Suleika Jaouad:
When I graduated college, I knew I wanted to be a war correspondent, but how to actually do that, how to get your foot in the door felt completely mysterious to me. And so in a strange version of my own coming of age rebellion, I decided to do the opposite of what my sort of artsy-fartsy parents had always done, and to get a job at a corporate international law firm. And the notion of 12 hour days, and wearing a power suit, was very intriguing and exciting to me. Although, that excitement was very short-lived once I actually started that job. But I think like a lot of people at that age, I had this sense of time, time to figure out who I was, time to bridge that gap between my reality and those daydreams. Time to do it all.
Debbie Millman:
You went to Paris, you rent an apartment, you started working as a paralegal in this law firm. But then, you developed a high fever, painful sores in your mouth, and wrote this in your journal. “Something is terribly wrong. I can’t put my finger on it, but it feels like there is a deadly parasite growing in my body.” But it was worse than a parasite. And is it okay to share what happened next?
Suleika Jaouad:
Yeah. So after a year of feeling sick, of going to see various doctors, who would treat whatever ailment I showed up with without really assessing the full picture, I started to feel like I was unraveling. One doctor prescribed me an antidepressant, another after a week long hospital stay in Paris, where they ran every test they could think of except for a bone marrow biopsy, which they felt wasn’t necessary for someone of my age, released me with a diagnosis of burnout syndrome. And essentially told me that I needed better work life balance, and to take care of my mental health.
And so I felt this sort of cleaving happening inside me, where I knew something was wrong, but no one seemed to be taking me seriously, and people were telling me it was literally in my head. And I started to wonder if I was a hypochondriac. I started to wonder if I was going crazy, in some kind of way. And so in a sort of perverse way, after a year of this, I ended up in an emergency room and learned that my blood counts were so low that I needed to immediately get on a plane to fly home to upstate New York, otherwise I wouldn’t be allowed to fly at all. I arrived to Paris in very high-heeled boots, and I left in a wheelchair.
And when I got my actual diagnosis, I felt relief. I had a very aggressive form of leukemia, a kind of blood cancer. And while that wasn’t welcome news, it was terrifying news, it was gutting news. I felt relief to be believed, to have an actual diagnosis that I could wrap my tongue around, and hopefully do something about.
Debbie Millman:
The doctors in the United States told you and your parents, point-blank, that you had about a 35% chance of long-term survival. So overnight you left your job, your apartment, your independence, and became patient number 5624. At one point, your doctors told your parents to hurry to the hospital, because they weren’t sure you were going to make it overnight. And in your memoir, you write this. “How do you react to a cancer diagnosis at age 22? Do you break down in sobs? Do you faint, or scream?” What were you telling yourself about what was happening in that moment?
Suleika Jaouad:
Yeah, I remember feeling a kind of bifurcation, a sense that there was my life before, and now everything that would come after. And that the person I’d been, the dreams I’d had, were buried. I’d never experienced anything like that. I was at an age where most of my friends had never dealt with serious illness. But that being said, I also had a kind of helpful naivete about what it means to be very, very sick.
And so, when I entered the hospital that first summer, I packed all kinds of books, and I very cheerfully told my parents I was going to use this time to read through the rest of the Western Canon.
Debbie Millman:
And then War and Peace, when you were done with that.
Suleika Jaouad:
And War and Peace, which, of course I never read any of those books. And by the end of that summer I learned that not only was the chemotherapy I’d been doing not working for me, but that my leukemia had become much more aggressive. And at that point, my only option was a clinical trial that had not yet been proven to be safe, or even effective. And I think it was the first moment where it occurred to me that I might actually die, and imminently. And that the sense of infinite time to figure things out had been an illusion, an illusion that we all live with. I’m not special, because I got sick at 22. Our time here is short and fleeting, but to confront my mortality in that way, and at that age, was a sort of world shifting change for me. And I spent those next couple of months in a deep depression.
I remember closing the blinds on my hospital room window, which overlooked the park. And when I’d entered the hospital, I felt really excited about that. It seemed like a great asset. But looking out the window, seeing people going to work, seeing teenagers making out on park benches, all of that was a reminder of a life that I no longer could participate in. And I felt profoundly terrified, and profoundly stuck. And I think worse than the brutal side effects of the treatment, worse than the weeks and months spent in confinement in a hospital room, was the sense that I had spent my entire 22 years on the planet preparing for a life, without actually having lived it. But in those early months, it was hard to imagine what I could possibly do from the confines of my hospital room, from the confines of my bed. And I really struggled with that.
Debbie Millman:
It was there in the hospital that you wrote, “time stalked you like prey” and, go on to write that “there’s a tipping point, a special kind of claustrophobia, reserved for long hospitalizations, that sets in around week two of being locked in a room. Time starts to elongate, space falls apart, your desperation begins to border on madness.”
And so I guess somehow, in the face of all of this despair and suffering, as you’re facing some of the most difficult challenges of your life, you decide to start on two creative projects. A 100-day project wherein you and your family members all participate in undertaking one small creative act every day. You started journaling, which was really a return to a creative act you had started pretty much since you could first hold a pencil. Why journaling?
Suleika Jaouad:
So I had started and stopped enough projects in the hospital to know that I needed to set the bar very low for myself, otherwise it was going to result in further defeat. And so, I decided to return to the thing I’d always loved. And the reason I’d always loved it is because to me, the journal is such a sacred space. You don’t have to write beautifully, or even grammatically. You’re not doing it for anyone other than yourself. And you have this invitation to show up as your most unedited, unvarnished self. And so that appealed to me, especially at a time where I was feeling so many things that I couldn’t say out loud.
And this is a thing that happens to a family when they get sick. Everyone is trying to put on a brave, stoic face for one another. And the byproduct of that is that everyone ends up siloed in their own private fears and anguish. And so having this place where I could write down all of the things that felt impossible to talk about. What it was like, falling in love while falling sick. The sense of being a burden that can accompany being a person who requires a significant amount of care. Sexual health and infertility caused by chemotherapy, the social awkwardness of being sick at an age where your friends are outplaying beer pong, or doing whatever else.
And in the course of keeping that journal, I felt both a kind of catharsis, but I also felt my excitement and my ambition come back to me. Because I realized, at some point during that hundred-day project that I was using my journal as a kind of reporter’s notebook. I was observing this new kingdom of the sick, this new hospital ecosystem, that once again, I was the new kid, and that I was having to figure out how to navigate. I was having to learn to speak medical-ese. I was befriending the fellow patients in the cancer unit. I was getting to know my nurses. I was learning about the body. And while it wasn’t war correspondence, it felt like a kind of reporting from the front lines of a very different sort of conflict zone.
Debbie Millman:
You wrote this about your biggest fear. “What scared me more than the transplant, more than the debilitating side effects that came with it, more than the possibility of death itself, was the thought of being remembered as someone else’s sad story of unmet potential.” Nevertheless, by the end of the 100 days, you realized as long as you were stuck in bed, your imagination would have to become the vessel that allowed you to travel. And though you couldn’t be a journalist in the way that you imagined after graduating, you were actually reporting from a war zone, in a different kind of conflict zone. You then went deeper and launched a blog called Secrets of Cancerhood.
Suleika Jaouad:
Oh God, so embarrassing.
Debbie Millman:
Not at all, not at all. And you stated-
Suleika Jaouad:
And I must, I’m very impressed by your research abilities.
Debbie Millman:
Oh, good. Thank you. And you stated, “Cancer isn’t something that makes you want to share. It’s something that makes you want to hide.” And this, Suleika, is sort of my big question for the whole interview. Did it scare you at all to be so candid and so direct? So raw, so real. You put it all out there.
Suleika Jaouad:
By the time I started that blog, I had spent almost an entire year in total isolation, shuttling between my childhood bedroom in upstate New York and the hospital. And the few friends I had told about my illness hadn’t… Not all of them, some were wonderful, but some of them hadn’t responded in the way that I’d hoped. And I think when they couldn’t figure out what to say, or how to show up, they stopped showing up at all. And so, I didn’t talk about what I was going through. On my Facebook profile, it still said that I lived in Paris, and people were still posting on my Facebook wall asking if they could crash on my couch.
But at some point that isolation became more painful than the risk of opening up. And I was preparing for a bone marrow transplant, which I knew I might not survive. And in the weeks leading up to that, I felt this force within me, to try to do some of the things that I had always wanted to do in whatever way I could, big or small. And the big one was writing. And while I always imagined myself as the kind of writer, who either through reporting or through fiction, would help other people tell their stories.
The story that was available to me, within my limitations, was my own. I remember my mom giving me a hardcover copy of Frida Kahlos’ diary, and pouring through it and feeling so deeply connected to her. Both because she had suffered a kind of life altering accident, at approximately the same age as my diagnosis, but because she had managed to find purpose in her pain. And that, for me, became a kind of guiding light. That the material that was available to me, even if it made people uncomfortable, even if it made people want to look away, had a power in it that I could tap.
Debbie Millman:
Your blog became immediately popular. And one of your journalism professors from Princeton shared it with an editor at the New York Times, and you were offered to write a piece about your experience. And in a moment of utter brazenness, you said you’d rather write a column, and in an effort to make it as accessible as possible, include video. That’s sort of the moment to me where it was like, “Ta-da!” Where did that courage come from? Where did you manifest that?
Suleika Jaouad:
You know, the funny thing is, I would never have dared be that brazen pre-diagnosis. I would’ve been thrilled for a fact checking position at any newspaper, let alone the New York Times. But I had lost so much, and I knew that within the next month, I might lose it all. And so it felt like there was very little left to lose. And for the first time in my life, I asked for exactly what I wanted, because nothing could be scarier than what I was already experiencing. And so, that’s what I did. And the fear came when the editor said yes, because suddenly I was like, “Oh crap, how do I actually pull this off?”
Debbie Millman:
Well, bent over your laptop, you wrote about how you traveled to where the silence was in your life. You wrote about your resulting infertility, and how no one warned you of that outcome. You wrote about learning to navigate our absurd US healthcare system. You wrote about guilt. You wrote about how we talk, or don’t talk, about dying. On March 29th, 2012, your column and the accompanying video series called Life Interrupted made its debut, and just a few days after that, you underwent your first bone marrow transplant.
And you said this about the experience. “The confluence of these impending milestones was dizzying, a dream and a nightmare dancing the tango.” Which seems to be a little bit of a pattern in your life, which is really cosmic and mystical and mysterious, in every possible way.
Suleika Jaouad:
Yeah, I feel like I’ve been the recipient of immense good fortune, and the recipient of immense misfortune, and often exactly at the same time. And that was a big one, for me. I was entering the most treacherous phase of my treatment, but at the same time, overnight upon launching the column and the video series, I went from being extraordinarily isolated to waking up the next morning to hundreds and hundreds of emails from people all around the world. People who were not necessarily sick, but having their own life interrupted experiences, be it losing their job, or going through a divorce, or grief, or some other kind of upheaval that had brought them to the floor.
And for the first time, too, I was hearing from people like me. I heard from a young man, a few doors down from me in the bone marrow transplant unit, who had my same type of leukemia. And just to know that there was another human, roughly my age, a few doors down, brought a sense of comfort and companionship that I hadn’t had in a long time. And one day when I was being wheeled out of my room to get a CT scan of my brain, I remember pausing in front of his door. And there was a little tiny window, and I wasn’t allowed to step inside because the germ risk was too high, but I knocked on the window. And he waved, and I waved.
And just that moment of connection, that realization that you are not the only person suffering or struggling in that particular way, that in fact all of us struggle, all of us have our hearts broken, all of us will confront our mortality at some point or another, suddenly made me feel less like a freak, and more like I was just part of the human condition and experience.
Debbie Millman:
Your work on Life Interrupted won a news and documentary Emmy Award, and after 1500 days, working to survive, 1500 days. You were discharged from the hospital on May 16th, 2014. And yet, when you finally emerged from your nearly four years of treatment, you learned that surviving is not the same thing as living. While you felt that it should have been a celebratory milestone, you wrote that you never felt more lost. Why is that?
Suleika Jaouad:
You know, we talk about the challenges of reentry with regards to veterans returning from war, but for whatever reason when it comes to surviving a traumatic experience like cancer, the expectation is that you’ll immediately and gratefully and joyously return to the world of the living. And I wanted that more than anything. I knew how lucky I was to be alive, but I was also reeling from those four years, I had been in survival mode for four years. And I hadn’t really given much thought to what would happen if I did survive, what would happen after.
And it took me a long time to understand that I was grieving. I hadn’t had the time to grieve, I hadn’t had the privilege of having enough energy to even allow myself to fall apart. And I was grieving so many things. I was grieving my 20s. I was grieving a relationship, that hadn’t survived my cancer treatment. I was grieving my best friend, Melissa, who I’d met in treatment, and who had died only a few weeks earlier. And so as much as I wanted to be this happy, healthy,
26-year-old young woman that the people around me wanted me to be, I just couldn’t. And so, to my surprise and with a great deal of shame, I felt whatever scaffolding that had propped me up during those four years collapsed, and I just went inward.
I didn’t know who I was. I wasn’t a cancer patient. I couldn’t go back to the person I’d been pre-diagnosis. My career, albeit what felt like a miraculous one, was anchored around the experience I was trying to move on from. And I was still physically struggling with the long-term side effects of my treatment. And so, more than anything, I desperately wanted to move on from all of that, only to of course realize that moving on is a myth. As much as we want to, we can’t stow away the most painful parts of our life, and skip over the hard work of healing and grieving. And that while moving on wasn’t going to be possible, I had to figure out a way to move forward with what had happened, and that became my work.
Debbie Millman:
You talk very eloquently about Susan Sontag’s book Illness as Metaphor wherein she writes, “Everyone who is born holds dual citizenship in the kingdom of the well, and in the kingdom of the sick. Although we all prefer to use only the good passport, sooner or later, each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.”
And Suleika, one of the things that you write about so beautifully in your book, is that space between the two kingdoms, which became the title of your subsequent 2021 memoir. Can you describe that space between, a little bit?
Suleika Jaouad:
Yeah. So on paper, I was better. I no longer had cancer, I was cured. But off paper, I couldn’t have felt further from being well. And so I was in this kind of liminal space, where I was no longer part of that hospital ecosystem. That cavalry of doctors and nurses and family that had surrounded me were no longer there. Yet, I couldn’t have felt further from relating to or being able to inhabit the kingdom of the well. So much so that in that first year, I remember missing the hospital, wishing I were back in treatment. Not because I wanted to have leukemia again, of course, but that was a world I understood.
That was a world I knew, I had built a home for myself within its confines, and it was the outside world that had become disorienting and terrifying to me.
And so, I began to look to the language of ritual, to these rites of passage that help us move from one place to another, that help ease that transition between no longer and not yet. And we have all kinds of rites of passage. We have funerals, and weddings, and baby showers. But I realized that for me, and at least at that time, there really wasn’t much in the way of survival. There wasn’t going to be any treatment protocols to help guide my way forward, and that I was going to essentially have to create my own. And so that’s what I decided to do, in my own kind of way.
Debbie Millman:
Your memoir Between Two Kingdoms is about not only your experience with cancer, but the aftermath, which includes this sort of between space. And then the 15,000-mile road trip you took to kind of find yourself again, through the people who wrote letters to you and people that you had met in this journey. As you wrote the book, you kept a Post-it note above your desk, and it stated, “If you want to write a good book, write about what you don’t want others to know about you. If you want to write a great book, write about what you don’t want to know about yourself.” How hard was that to do?
Suleika Jaouad:
I felt slight terror, even just hearing you read that line from the Post-it note. It was extraordinarily challenging. I had read so many illness narratives that sort of mirrored the hero’s journey arc, where the final act was being cured, and people seemed to return from that experience better and braver and wiser for what they’d been through. And because of that, I think I had this expectation of what that would look like for me. And because of that, I also had an immense sense of shame, when my lived reality did not sync up with that. I felt like I was somehow doing healing wrong, or recovery wrong. I knew how lucky I was to be alive, and wanted to make the most of that.
And so in writing this book, I really more than anything, wanted to talk about aftermaths. About what is required of us when we survive, and that large gap between surviving and living. And I wanted to tell the truth of that reckoning. And it was interesting. My first drafts, I used to jokingly say, were full of lies.
They were full of aspirational lies of what I hoped that process of recovery might look like, but that just wasn’t the truth for me. And so, writing that book forced me to really excavate the truth beneath the truth, beneath the truth. And I struggled especially with part two of the book, with the road trip, with that chronicling of the recovery. And it took me a year of just banging my head against the desk to realize that the issue was I was writing about recovery in the past tense, and it wasn’t past tense for me. Recovery was and is an ongoing process.
And once I understood that I was allowed to change tenses midway through the book, which I did, and to write that part in the present tense, I felt like I was finally able to access the truth of it. Which is to say, that there wasn’t some neat, tidy bow at the end of that story. That road trip was the best decision I made in my 20s. It forced me to inhabit the world again, to figure out how to stand on my own two feet, to find out what was on the other side of my fear. But the lingering imprints of my illness, especially on my body, didn’t go away. I didn’t return from this road trip magically healed, somehow. And so, I wanted to figure out how to put into words what it to exist in that messy middle, where you’re neither well or unwell or happy or sad. But you’re existing in that chorus border.
Debbie Millman:
One of the things that I find so remarkable about your book is that you don’t have to have experienced a bout of cancer, to appreciate the will that you have to survive. And that survival could be against any type of injustice that’s endured by the body. And there’s so many ways that we are confronted by that now. And so, it is a book of hope for anyone that’s experienced any type of injustice to their body.
Suleika Jaouad:
Yeah.
Debbie Millman:
While you were writing your book, COVID descended upon us, and you quarantined at your parents’ house. Jon joined you for this, because you had had now, a blossoming romance. He joined you with your family, and that’s when you first started on an online project you titled The Isolation Journals, wherein you invited some of the most inspiring authors, musicians, community leaders, unsung heroes you knew, to write a short essay and a journaling prompt. And on April 1st, 2020, you began sending it out as a free newsletter. And within a month, 100,000 people had joined you from all over the world.
So here in another instance of creating a whole community, and with beauty out of tragedy and longing, sort of the world tragedy, that effort is ongoing. Talk about what the Isolation Journals mean to you now, and the kind of work you’re doing with it.
Suleika Jaouad:
So my friend Liz says that whenever you’re deep in a project, inevitably another idea for a project appears, and she calls these other ideas her mistresses, and they’re doing the dance of the seven veils-
Debbie Millman:
I love that.
Suleika Jaouad:
… and trying to beckon you over. So the Isolation Journals was that for me, I was in the final throes of finishing my book. I had no business doing anything other than that task, but I couldn’t help but feel that so much of the pandemic, especially those early days of quarantine, felt familiar to me. The isolation, the face masks, the sense of hypervigilance, the kind of creative workarounds that were needed in order for us to continue existing within these new constraints. And so I wanted to share this creative practice, and really it’s a spiritual practice for me, of journaling, that has helped me through all of my most difficult passages.
But I knew that I wanted there to be a connective piece, to try to mirror the experience that I had 10 years earlier in that hospital room when I launched the column, and opened my inbox to all of these messages. And so I invited this community, we called them the Isolation Journalers to, if they wanted, and there was no pressure whatsoever, to share some of the writing that they were doing. And it was extraordinary. It’s, I think the work I’m most proud of, because to share your most vulnerable self, I think is one of the most terrifying things that we can do. But so often, when we dare to be vulnerable, it creates a reverberation, where vulnerability begets vulnerability, begets vulnerability. And of course, we learn that we’re more alike than we are different.
And so to watch that happening in real time, to watch people sharing their stories of love and struggle and sickness and grief, at a moment in time where the entire world was between two kingdoms, was just breathtaking. And that project continues strong today, I never know what to call it, because newsletter doesn’t quite do it justice, even though that’s the form it’s delivered in.
Debbie Millman:
Your book Between Two Kingdoms came out on February 9th, 2021. Was an immediate bestseller. November of 2021, two things happened. Your husband Jon earned 11 Grammy nominations, the most of any artist that year. And you also learned that your cancer had returned. How were you able to manage this dichotomy?
Suleika Jaouad:
It was such a surreal gut punch. It was the thing I’d always feared. It was my biggest fear, for a decade. And the thing is that when the ceiling caves in on you, you no longer assume structural stability. And so, for so many years, I’d been afraid of rebuilding my life, afraid of falling in love again, only to have everything collapse. But I’d done that. I had built a career for myself, a life for myself, a love for myself that I was so proud of, and I’d finally regained this sense of safety in my body. And to have a relapse of leukemia, a decade out from transplant, is so rare. There’s less than a 1% chance of it happening. And once again, overnight, our world changed. We packed up our house, we had to re-home our dogs, which I think was harder than even the news of the recurrence itself, and we basically moved back into the hospital ecosystem.
But again, great misfortune, great fortune. I felt like I was lucky to have been through this once before, because I thought a lot about how I’d want to do it differently. So with regards to Jon, that’s the kind of thing that could lead two people to split apart. When one person is on a meteoric ascent, and the other person is suddenly confined to a hospital bed. And one of the very first things I said to him was that I didn’t want him to press pause on his life and on his work. I have watched him work so hard and for so long, that I wouldn’t have felt good about him missing out on this huge moment. But also, I learned to be a caregiver can be as challenging as it is to be a patient, sometimes more so. And I wanted to protect our relationship.
And I had spent the last decade building a beautiful community of family, and chosen family. And I wanted to not just lean on Jon, but to do the hardest thing, I think for most of us, which is to ask for help and for support. And so I was really fortunate this time around to have my parents with me, to have my very closest friends, and to have Jon there. And we navigated it in our own strange way. We got married on the eve of my bone marrow transplant, which as Jon put, was a kind of act of defiance. A way of saying we had a plan, and while it may look very different, we’re going to keep moving forward with that plan. But also, I think for both of us, having our own creative practices was the thing that both kept us individually grounded, and allowed us to come together.
Debbie Millman:
The dichotomy, both the sublime and the sad, is documented in the stunning documentary American Symphony, which was released last year. And the film follows you both, as you’re going through your bone marrow transplant, and Jon is creating his first composition to be played at Carnegie Hall. Going to the Grammys for his 11 nominations, as you watch, while you’re in recovery. Once again, you’re skating between the sort of beauty, and despair. How did you get to such a level of trust with the director, Matt Heineman?
Suleika Jaouad:
It was an ongoing process. I mean, Matt was a friend of Jon’s, and a collaborator, so he was a known entity to us, which helped. But it was really challenging, and Matt was so willing to reimagine the contours of this story every day, every week. And we would have conversations all the time about where the boundaries were, and those would shift, depending on how I was feeling. But ultimately, we knew that we wanted to capture this, not because we had any idea of what the outcome would be. I didn’t know if I was going to survive long enough to see this film come together, but to document what it is to navigate those peaks and valleys in real time, not just individually, but especially as a unit, felt like a worthy exploration and project. And it really took a massive leap of faith for both of us, and for Matt included, because we did it without funding, without a distributor, or anything like that. And we wanted the freedom to figure out what this could be, without any sort of directives coming from the outside.
And so I think what helped was that it really was often just the three of us. And because my immune system was so compromised, it was just Matt holding the camera. It’s not like there was a giant film crew there. And so we really built a deep friendship, and went through so much together, in the course of that time. Although Jon jokes that he had to draw the line one day, because our safe space was the bathroom. We knew that if we went into the bathroom, the camera would not follow us. So we would take bathroom breaks, just to kind of get our heads together.
And one day Jon was taking a shower, and he saw the door crack open, and he saw the camera lens come through. And Jon went, “Hello?” And he said, “Don’t worry, I’m just filming you from the waist up.” And that’s when we were like, “Okay, we need to reassess where the lines are, here.”
Debbie Millman:
Suleika, you just celebrated the two year anniversary of your second bone marrow transplant, and joyfully you were able to join Jon at the recent Grammys, where he was once again nominated for a pile of awards. There’s something about this that feels incredibly full circle, and I read that lately, you’re forcing yourself to make more necessary optimism. And as a result, I understand that you’ve committed, in that necessary optimism, to write two more books. And I was wondering if you can tell us about those.
Suleika Jaouad:
Yeah. So unlike the first time, I don’t have, and I never will have, a clear end date in terms of my cancer treatment. I am in treatment indefinitely, for however long or short that may be. And so, in a way, it’s been wonderful because I am more present than I’ve ever been. And it makes that sort of big, bold daydreaming about the future, a scary exercise, because I don’t know if I’m going to get to exist in that future. But I know that I don’t want to be someone hemmed in by fear. And so I’ve had to force myself to make long-term plans, like a book, which as you know takes a very long time not only to ideate and write, but for it to come out into the world. And I’ve had to kind of find ways of planting a flag in the future, as an act of optimism, as a way of saying, “I will be here. I will see this through.”
Debbie Millman:
After the transplant. Your doctor advised you to live each day like it’s your last, but you embraced an alternative approach. And I’m wondering if you can share what that is.
Suleika Jaouad:
So it’s a thing people say a lot, that you need to live every day as if it’s your last, and of course they mean well. But it’s also a phrase that has always filled me with a sense of panic, the sense and the pressure of needing to make as much meaning out of every moment, which honestly is fine in the short term, but an exhausting way to live. And I’ve come to believe that if we were all to live every day as if it were our last, our planet would implode. We’d be emptying our bank accounts, and declaring bankruptcy, and we’d be cheating on our spouses and eating ice cream for every meal.
And so, rather than doing that, I needed to find a gentler way in. And so what I decided was that instead, I was going to try to live every day as if it were my first, to wake up with a sense of curiosity and playfulness and wonder, that a newborn baby might. And it’s shifted my whole mindset, when it comes to the idea of indefinite treatment. It’s removed the pressure, and rather than figuring out how I can get the most out of my life, it’s shifted me into a place of thinking about what I can give, what I can give to my beloveds around me. What I can give to my work, what I can give to my body, to nourish it in this moment. And it’s really helped me also feel the sense of permission to do absolutely nothing. To have unstructured time, to doodle, to nap, to take the pressure off of feeling like there needs to be a sizable output. I think it’s what’s really helping me, figuring out how to swim through this.
Debbie Millman:
I’m wondering if you would be willing to read a short excerpt from Between Two Kingdoms. It’s one of my favorite passages in the book, and I was wondering if you’d share that with our listeners?
Suleika Jaouad:
I would love to.
“I used to think healing meant ridding the body and the heart of anything that hurt. It meant putting your pain behind you, leaving it in the past. But I’m learning that’s not how it works. Healing is figuring out how to coexist with the pain that will always live inside of you, without pretending it isn’t there or allowing it to hijack your day. It is learning to confront ghosts, and to carry what lingers. It is learning to embrace the people I love now, instead of protecting against a future in which I am gutted by their loss. Catherine’s experience and her insights sit with me. She went through something she thought she could never survive, and yet here she is, surviving. ‘You have to shift from the gloom and doom and focus instead on what you love,’ she told me before bed. That’s all you can do in the face of these things. Love the people around you. Love the life you have. I can’t think of a more powerful response to life sorrows than loving.”
Debbie Millman:
Suleika Jaouad, thank you for making so much work that matters. And thank you for joining me today on Design Matters.
Suleika Jaouad:
Thank you, Debbie. This was a joy, and let me just go ahead and say it on the record, but my favorite interview ever. You are a wonder, and I’m so, so grateful to have gotten to have this conversation with you.
Debbie Millman:
Thank you. I’m going to cry.
Before we go, I do want to let people know that adding your name to the Bone Marrow Registry is quick and easy, and painless. You can sign up at jointhesymphony.org, and all it takes is a swab of Q-tip to get your DNA. For cancer patients around the world, it could mean a lifesaving cure.
Suleika Jaouad’s memoir is Between Two Kingdoms, and the Netflix documentary she’s featured in and executive produced is titled American Symphony. You can see lots more about Suleika on her website@suleikajaouad.com. That’s S-U-L-E-I-K-A-J-A-O-U-A-D.com. And that is also where you can sign up for receiving the Isolation Journals weekly newsletter.
This is the 19th year we’ve been podcasting Design Matters, and I’d like to thank you for listening. And remember, we can talk about making a difference, we can make a difference, or we can do both. I’m Debbie Millman, and I look forward to talking with you again soon.