Speaker 1: Pushkin.
Speaker 2: That was really the moment that I realized whatever future
Speaker 2: I'd imagine for myself not only wasn't going to happen
Speaker 2: in the way that I'd planned, but that I might
Speaker 2: not get to exist in the future at all.
Speaker 1: Suleka Jawad was diagnosed with an aggressive form of leukemia
Speaker 1: when she was twenty two years old. As she faced
Speaker 1: her mortality, she felt clarity about how exactly she wanted
Speaker 1: to spend her time.
Speaker 2: I felt a real sense of liberation to do the
Speaker 2: things I wanted to do simply because they nourished me,
Speaker 2: because they felt life giving, and not because they were
Speaker 2: the things I thought I should be doing. And so
Speaker 2: for the first time in my life, I began creating
Speaker 2: entirely for myself.
Speaker 1: On today's episode, why Survival is its own kind of
Speaker 1: creative act, I'm Maya Shunker and this is a slight
Speaker 1: change of plans, a show about who we are and
Speaker 1: who we become in the face of a big change. Okay,
Speaker 1: so full confession. I'm obsessed with Suleka Jawad. Her mind
Speaker 1: and heart speak to me in a way few people do.
Speaker 1: I followed her writing from Afar over the years, and
Speaker 1: I found her honesty so startling at times, it's taken
Speaker 1: my breath away. Suleka is unafraid to tackle some of
Speaker 1: the hardest questions we fine as humans. When she first
Speaker 1: started working on her memoir, a friend told her about
Speaker 1: a saying they'd heard. If you want to write a
Speaker 1: good memoir, share what you don't want other people to
Speaker 1: know about you. If you want to write a great memoir,
Speaker 1: share what you don't want to know about yourself. Suleka
Speaker 1: wrote a great memoir. The title of her book, Between
Speaker 1: Two Kingdoms, a Memoir of a Life Interrupted, is a
Speaker 1: nod to the writer Susan Sontagg. Sontag wrote that everyone
Speaker 1: who is born holds dual citizenship in the Kingdom of
Speaker 1: the well and in the Kingdom of the sick. Suleka
Speaker 1: writes about her experience in both these kingdoms and the
Speaker 1: difficulty of navigating the space that lies between them. Her
Speaker 1: story begins in twenty ten. She just graduated from Princeton
Speaker 1: University and had big dreams for the road ahead.
Speaker 2: So much of my sense of self worth, like most
Speaker 2: Type A strivers, was wrapped up in my plans for
Speaker 2: the future, and I had all kinds of one year
Speaker 2: and five year and ten year plans, and I had
Speaker 2: a dream of becoming a war correspondent. I wanted to
Speaker 2: report from North Africa, where I'm originally from, where my
Speaker 2: entire family currently lives. But also, like a lot of
Speaker 2: twenty two year olds, I had no idea what the
Speaker 2: future actually had in store for me. I had lots
Speaker 2: of daydreams and plans that I didn't really know who
Speaker 2: I buys met. And so what I decided to do
Speaker 2: was to take a job as a parent legal and
Speaker 2: a law firm in Paris, and to take the time
Speaker 2: I needed to find my way. And you know, there
Speaker 2: was this sense of endless time, as there often is
Speaker 2: when you're young. Time to figure out what you want,
Speaker 2: time to figure out who who you want to become,
Speaker 2: and how to plot the distance between you and that person.
Speaker 2: And so I was brimming with joy, bringing with a
Speaker 2: little bit of anxiety about finding my way forward, but
Speaker 2: it was really this sense of being on the edge
Speaker 2: of something exciting. Yeah.
Speaker 1: So you had had worrying health symptoms for some time,
Speaker 1: and when you were in Paris things got worse. Can
Speaker 1: you tell me about how your health was starting to fail?
Speaker 2: It began with an itch, this relentless, maddening itch on
Speaker 2: my skin that popped up during my senior year of college,
Speaker 2: and followed by that was fatigue and frequent infections and viruses.
Speaker 2: But every single time I went to a doctor, they
Speaker 2: would look at whatever specific ailment I was coming in,
Speaker 2: treat that, and then send me home. And so it
Speaker 2: took about a year and a half until I was
Speaker 2: about six months into my time in Paris, and I
Speaker 2: had grown so pale that my skin looked almost translucent,
Speaker 2: and I was so exhausted that I was drinking, you know,
Speaker 2: up to eight espressos every day to get through my
Speaker 2: job at the law firm, and spending my lunch hour
Speaker 2: napping in the office closet. That it began to occur
Speaker 2: to me that something was deeply wrong. But as is
Speaker 2: often the case, especially for young people, especially for women,
Speaker 2: the challenge of getting an actual diagnosis proved to be
Speaker 2: so much harder than I possibly could have imagined. You know,
Speaker 2: we have so many examples throughout history where a woman's
Speaker 2: physical affliction is attributed to their mind, to a sense
Speaker 2: of hysteria, and that's very much how I felt. I
Speaker 2: kept saying, I think something is wrong. I've never been
Speaker 2: sick in my life. I've never even broken a bone,
Speaker 2: and I can barely function. I so often would find
Speaker 2: myself on an exam table, feeling like I wasn't being
Speaker 2: taken seriously, feeling like I wasn't being believed. A doctor
Speaker 2: I saw prescribed anti anxiety medications to me. Another that
Speaker 2: hospitalized me for a week and ran every test they
Speaker 2: could think of release me with a discharge of burnout syndrome.
Speaker 2: And I felt this sense of intimidation that I think
Speaker 2: many of us have felt when we're in a doctor's office,
Speaker 2: the sense that they had the medical degrees, not me.
Speaker 2: Who was I to question their judgment? And so at
Speaker 2: the end of this confusing year and a half, ultimately
Speaker 2: I found my self in an emergency room in Paris
Speaker 2: with blood counts so low that I had to immediately
Speaker 2: get on a plane back home to Upstate New York
Speaker 2: because if they dropped any lower, I wasn't going to
Speaker 2: be able to fly at all. And it was shortly
Speaker 2: thereafter that I learned I had been diagnosed with an
Speaker 2: aggressive form of leukemia. And it was one of those
Speaker 2: bifurcating moments in a life where even though at twenty
Speaker 2: two I couldn't really wrap my head around what this
Speaker 2: illness meant for me. I didn't have friends who had
Speaker 2: suffered from cancer, and I didn't really have anything to
Speaker 2: sort of give me an indication of what it was
Speaker 2: going to be like. But I knew immediately that whatever
Speaker 2: sense of innocence I've had had been buried and everything
Speaker 2: was going to be different from there on out.
Speaker 1: What were you told about your prognosis at the time,
Speaker 1: and what was it like to leave behind all of
Speaker 1: those dreams and hopes that you had been carrying, just
Speaker 1: you know, weeks prior about what your future was going
Speaker 1: to look like.
Speaker 2: So initially I did all the googling that they tell
Speaker 2: you not to do, and I knew from the very
Speaker 2: start that my prognosis was not good, that the cards
Speaker 2: were stacked against me. They told me I had about
Speaker 2: a thirty five percent chance of long term survival. But
Speaker 2: when I entered the hospital, I still had a kind
Speaker 2: of naivete about what this whole experience is going to
Speaker 2: be like. I packed a suitcase full of books like
Speaker 2: War and Peace, and I cheerfully announced my parents that
Speaker 2: I was going to use this summer in the hospital
Speaker 2: to read through the rest of the Western canon. I
Speaker 2: thought I was going to write a book. I thought
Speaker 2: it was going to do all these things, and of
Speaker 2: course I didn't end up doing any of those things.
Speaker 2: And it was a slow crushing realization that to hold
Speaker 2: on to the person I'd been, and all of the
Speaker 2: dreams and plans that that person had, was only going
Speaker 2: to be a recipe for defeat and discouragement. And by
Speaker 2: the end of that summer, I had lost about forty pounds.
Speaker 2: I had lost on my hair and my eyelashes, my eyebrows.
Speaker 2: But worse than that, I had learned that the standard
Speaker 2: chemotherapy I'd been doing all summer not only hadn't worked,
Speaker 2: but that my leukemia was even more aggressive, and that
Speaker 2: my only option was going to be a clinical trial.
Speaker 1: You went from assuming that you were going to have
Speaker 1: this relatively short stay, I mean not just so like
Speaker 1: in your case, but like highly productive reading war and
Speaker 1: peace stay, which by the way, will never ever be
Speaker 1: in the cards for me ever, no matter what illnesses
Speaker 1: I face. I'm more in the mindy Kaling, you know,
Speaker 1: memoirs face. And then and then you find out this
Speaker 1: devastating news, which is okay, you're going to have to
Speaker 1: enter this clinical trial. What was it like to have
Speaker 1: the goalpost change like that.
Speaker 2: I was devastated. I remember it so clearly. It was
Speaker 2: the morning of my twenty third birthday, and I had
Speaker 2: packed up everything in my room because I wanted so
Speaker 2: badly to be discharged. I had taken down the posters
Speaker 2: and the getball cards. And the hope from the very
Speaker 2: beginning was that I would get into remission. But theallenge
Speaker 2: was that I not only couldn't get into remission, but
Speaker 2: my leukemia was running rampant throughout my entire body. I
Speaker 2: felt when I received that news, the scaffolding inside of
Speaker 2: me crumble. It felt like a breach of contract with
Speaker 2: the natural order of things, because youth and health are
Speaker 2: supposed to go hand in hand. And that began a
Speaker 2: very different chapter where I really retreated into myself. I
Speaker 2: had this window overlooking Central Park from my hospital room,
Speaker 2: which was a great privilege to have landed in this
Speaker 2: room by chance. And I remember closing the blinds because
Speaker 2: what had once brought me comfort to be able, you know,
Speaker 2: to see the world continuing to move, suddenly felt like
Speaker 2: a reminder that whatever future I'd imagine for myself, not
Speaker 2: only wasn't going to happen in the way that I'd planned,
Speaker 2: but that I might not get to exist in the
Speaker 2: future at all. And so for the next couple of months,
Speaker 2: I sank into a pretty deep well of depression. I
Speaker 2: no longer wanted to have visits from friends, I stopped reading,
Speaker 2: stopped making plans. I instead filled my days by trying
Speaker 2: to set the world record for the number of Gray's
Speaker 2: Anatomy episodes watched consecutively. And I was angry. I remember,
Speaker 2: you know, being told stories of cancer survivors who had
Speaker 2: gone on to do extraordinary things, and feeling such rage
Speaker 2: at the idea that anything about what I was living
Speaker 2: could be useful, could be turned into anything other than
Speaker 2: what it was, which was a deep sense of isolation
Speaker 2: and a deep sense of fear about what was to come.
Speaker 1: Yeah, when I told you you'd have to enroll in
Speaker 1: this clinical trial, what was the chance of a successful outcome?
Speaker 2: I had no idea, And that's what made it especially challenging.
Speaker 2: The clinical trial that I enrolled in was a phase
Speaker 2: two clinical trial, meaning they not only didn't know if
Speaker 2: it was safe, but they had no idea if it
Speaker 2: was going to be effective. Okay, and It really required
Speaker 2: what I can only describe as a leap of faith
Speaker 2: to submit my body, to submit my family to what
Speaker 2: ended up being a harrowing and grueling experience.
Speaker 1: Yeah, I do wonder whether it was ever a question
Speaker 1: of whether you were going to go through with the treatment.
Speaker 1: I could easily imagine myself saying, like, please, everyone I love,
Speaker 1: spare me this pain and suffering, Like I'd rather just go.
Speaker 2: We had so many difficult conversations as a family, especially
Speaker 2: because the side effects of the clinical trial were so
Speaker 2: brutal that they became nearly lethal on a number of vacations,
Speaker 2: and I ended up spending about four out of the
Speaker 2: next eight months and isolation in the hospital, warding off
Speaker 2: everything from septic shock to life threatening infections and fevers.
Speaker 2: And that was the impossible Sophie's choice. Is this going
Speaker 2: to kill me? Is this going to save me? But
Speaker 2: I would say things to my parents sometimes when I
Speaker 2: felt I was really in a low down place, that
Speaker 2: you know, maybe I was better off stopping the clinical trial,
Speaker 2: doing some kind of make a wish bucketless trip to
Speaker 2: some tropical island and smoking pot and doing whatever else
Speaker 2: it was that I wanted to do, And more than
Speaker 2: anything to really savor whatever time I had left with them,
Speaker 2: with my friends, with my loved ones, rather than torturing
Speaker 2: myself with these treatments. But I had this amazing oncologist,
Speaker 2: the late doctor James Holland, who, when I was at
Speaker 2: my most defeated place, began during his lunch hour coming
Speaker 2: to my hospital room with his paper bag of sandwiches
Speaker 2: and sitting by my bed and talking to me, not
Speaker 2: about my latest biopsy results or blood counts, but he
Speaker 2: would ask me what I majored in in college, what
Speaker 2: my most daring dreams were, what I wanted to do
Speaker 2: after all of this was over. And it always confused
Speaker 2: me because I felt like, he's this busy man, you know,
Speaker 2: why is he doing this? And I realized now that
Speaker 2: he was reminding me of who I was outside of
Speaker 2: these hospital rooms and trying to keep that sense of
Speaker 2: hope alive for me.
Speaker 1: Yeah, it sounds like you were forced to stare death
Speaker 1: in the face, and I'm wondering whether it shifted your
Speaker 1: perspective on anything or taught you something about yourself.
Speaker 2: Yeah, you know, I think the experience of confronting death
Speaker 2: strangely can have a clarifying effect, all the artifice got
Speaker 2: stripped away, and for me, I've felt my self rerouting
Speaker 2: my priorities. What had felt important even just a few
Speaker 2: months before no longer mattered. It didn't matter that I'd
Speaker 2: strived and strived and strived. It didn't matter that I
Speaker 2: had all of these ambitions, or that I had been
Speaker 2: a hard worker. What mattered to me was simple. I
Speaker 2: wanted to spend as much time with my loved ones
Speaker 2: as I could, and I think what it did for
Speaker 2: me was that it released me from any sense of
Speaker 2: self imposed or external expectation. For the first time in
Speaker 2: my life, I was free of expectation for the first
Speaker 2: time in my life. My parents were overjoyed and would
Speaker 2: pat me on the back if I managed to walk
Speaker 2: half a block to come home. That's how low the
Speaker 2: bar was set for me. And what surprised me is
Speaker 2: that I felt a real sense of liberation to do
Speaker 2: the things I wanted to do simply because they nourished me,
Speaker 2: because they felt life giving, and not because they were
Speaker 2: the things I thought I should be doing. And so,
Speaker 2: for the first time in my life, I began creating
Speaker 2: entirely for myself. I began keeping a journal that I
Speaker 2: used as a sort of reporter's notebook, where I would
Speaker 2: you write about the different patients I was befriending, you know,
Speaker 2: the guy down the hall who was trying to encourage
Speaker 2: everyone to mount a hunger strike because our meal trace
Speaker 2: kept arriving with the food still frozen. I wrote about
Speaker 2: the nurses and the gossip that i'd overhear by their station.
Speaker 1: The real life Anatomy flat life, exactly exactly.
Speaker 2: I once asked a young resident if her life resembled
Speaker 2: the cast of Grace Anatomy in any way, and she
Speaker 2: told me that everyone slept around just as much, but
Speaker 2: that everyone was also far less attractive, which was fun
Speaker 2: for me because I got to sort of project all
Speaker 2: sorts of steamy plot twists to everyone coming into my room.
Speaker 2: But I was doing things for the first time in
Speaker 2: my life without any sense of it leading to something,
Speaker 2: without worrying about productivity or output.
Speaker 3: Wow.
Speaker 1: That is so powerful, and it just strikes me as
Speaker 1: I look at my own life. I don't think I've
Speaker 1: ever experienced a period of my life in which I
Speaker 1: did not feel almost an obsessive need to be productive
Speaker 1: and meet expectations.
Speaker 2: I think most of us feel that way. That was
Speaker 2: something I also hadn't experienced, probably from the time that
Speaker 2: I was like four or five years old, when I
Speaker 2: can make a big, glorious mess with finger paints and
Speaker 2: revel in the mass and not worry about if it
Speaker 2: was any good. And I think, you know, shedding that
Speaker 2: pressure to do something well allowed me to play and
Speaker 2: to experiment with different forms in a way that I
Speaker 2: wouldn't have allowed myself. I wouldn't have allowed myself the
Speaker 2: time to just try things for the health trying them. Yeah,
Speaker 2: to read things because they piqued my interests and I
Speaker 2: didn't know why. And I had never had that luxury
Speaker 2: of time, which is an irony, because of course, you know,
Speaker 2: time felt more precious and fleeting than ever before. And
Speaker 2: in writing in that way, I wasn't concerned with writing
Speaker 2: well or beautifully or even gramatically. I was really interested
Speaker 2: in pushing myself to dig for the truth beneath the truth,
Speaker 2: beneath the truth. I wasn't trying to impress anyone. I
Speaker 2: wasn't trying to sound smarter than I was to imitate anyone.
Speaker 2: I was just following the threat of curiosity wherever it
Speaker 2: led me. And so because I was so mired an uncertainty.
Speaker 2: I had no idea what the next couple of hours
Speaker 2: were going to bring, let alone the next day or
Speaker 2: the next week. And because initially that writing was just
Speaker 2: for myself, for the first time in my life, I
Speaker 2: felt like I had finally found my voice.
Speaker 1: We'll be back in a moment. With a slight change
Speaker 1: of plans against the odds, and after months of grueling
Speaker 1: chemotherapy and extreme isolation, Suleka's clinical trial was deemed a success.
Speaker 1: The next step in her treatment would be a bone
Speaker 1: marrow transplant, a high risk, complex procedure and her only
Speaker 1: chance at survival. As her transplant approached, she began reflecting
Speaker 1: on what exactly she wanted to say about her experience
Speaker 1: with cancer.
Speaker 2: I began to read every illness narrative that I could
Speaker 2: get my hands on, but so many of them, the
Speaker 2: beautifully written and wrenching and profound, didn't speak to me,
Speaker 2: because more often than not, they were written from the
Speaker 2: perspective of someone who had survived. And I started to
Speaker 2: notice that there was this kind of hero's journey arc
Speaker 2: to illness narratives, where you return from the thing that
Speaker 2: nearly killed you better and braver and stronger for what
Speaker 2: you've been through, and that couldn't have applied less to me.
Speaker 2: I was terrified, I was struggling, I was isolated, and
Speaker 2: I wanted to put all of that into ink. And
Speaker 2: so what I began to do was to write about
Speaker 2: the very things that felt impossible to talk about. I
Speaker 2: wrote about the infertility caused by my cancer treatments. I
Speaker 2: wrote about the experience of falling in love while falling sick.
Speaker 2: I wrote about the in betweenness of young adulthood. I
Speaker 2: wrote about navigating our healthcare system and all of its complexities.
Speaker 2: I wrote about the sense of guilt and the feeling
Speaker 2: of being a burden that so often comes when you're
Speaker 2: acutely sick. I wrote about all of it. Tony Morrison said,
Speaker 2: if you want to read a book and it doesn't exist,
Speaker 2: then you must write it. And so I think, in
Speaker 2: my own small way, that was my version of doing that.
Speaker 2: And so I decided, because I was pretty limited within
Speaker 2: my options, to start a blog, a really simple blog,
Speaker 2: and it felt so good to have a job that
Speaker 2: I could do other than merely being a patient. And
Speaker 2: to my great surprise, the blog was passed around and
Speaker 2: the journalism professor of mine sent it along to an
Speaker 2: editor at the New York Times, and she called me
Speaker 2: up and asked if I might want to publish an essay.
Speaker 2: And because I was facing the possibility of imminent death,
Speaker 2: I shot my shot and I said, I don't want
Speaker 2: to write an essay. What I'd like to write is
Speaker 2: a weekly column written from the trenches of that uncertainty
Speaker 2: where you don't know how the story is going to end.
Speaker 2: And I went on and on and on, and at
Speaker 2: the end of it, to my great surprise and then
Speaker 2: terror her, she said, okay, we will try it for
Speaker 2: a couple of installments and see how it goes. And
Speaker 2: I had never been published before, I never had a byline,
Speaker 2: and certainly not in a place like the New York Times.
Speaker 2: And what began as elation immediately turned to a sense of,
Speaker 2: Oh shit, how am I.
Speaker 3: Going to pull this off?
Speaker 1: What did it feel like to put these essays this
Speaker 1: call them out into the world while you were so
Speaker 1: unbelievably sick and going through the bone marrow transplant.
Speaker 2: It was extraordinarily challenging, in large part because I had
Speaker 2: new limitations. I was exhausted, I was physically ill in
Speaker 2: ways that were unpredictable, and so I would work in
Speaker 2: these short ten minute installments throughout the day and take
Speaker 2: naps in between. And it was slow and plotting and frustrating,
Speaker 2: and of course through many moments where I felt, you know,
Speaker 2: this deep sense of anger at how different my body was,
Speaker 2: and I felt the sense of my ambition, you know,
Speaker 2: bumping up against my limitations. But it was also an
Speaker 2: exercise for me, a first lesson really in not only
Speaker 2: accepting those limitations, but trying to find creative workarounds. And
Speaker 2: it occurred to me as I started to look to
Speaker 2: examples throughout history of artists and writers who found themselves
Speaker 2: in similar situations, that the limitations could actually be creatively
Speaker 2: generative themselves. So I was obsessed with Free to Callo,
Speaker 2: who had a similar age, had, of course, found herself
Speaker 2: in bed and began making these beautiful, heartbreaking self portraits
Speaker 2: that led to her becoming one of the most well
Speaker 2: known artists throughout time. I read Sarah Manguso, I read
Speaker 2: Lucy Grayley, and I began to get curious about how
Speaker 2: my limitations will challenging were actually twisting my mind out
Speaker 2: of its usual rut. And I began to realize that, really,
Speaker 2: you know, survival is its own kind of creative act.
Speaker 2: When you have chemo sores in your mouth and throat
Speaker 2: that make it impossible to speak, you have to find
Speaker 2: new ways to communicate. When you're confined to a bed,
Speaker 2: you have to use your imagination to travel when you
Speaker 2: can't move, you have to find new ways of entertaining yourself.
Speaker 2: And so I began to get curious about that and
Speaker 2: open to whatever it was that emerged.
Speaker 1: And what was the response like to the column.
Speaker 2: The column, which was called Life Interrupted, launched during that
Speaker 2: first week in the Bone Mirror transplant unit, and it
Speaker 2: was such a bizarre moment of contrast because I was
Speaker 2: sicker than I'd ever been. And the morning after the
Speaker 2: column went live, I opened my inbox and found hundreds
Speaker 2: and hundreds of letters and notes from people all across
Speaker 2: the world. And after being so profoundly isolated for a year,
Speaker 2: it was like this portal had opened onto the rest
Speaker 2: of the world, and I felt a sense of connection
Speaker 2: that I hadn't felt before. I heard from a young
Speaker 2: man down the hallway from me in the transplant unit
Speaker 2: who was going through the same thing I was going through,
Speaker 2: And I never met anybody my age with my same illness.
Speaker 2: And I'll never forget one day when I was being
Speaker 2: wheeled down the hall to get a CT scan, I
Speaker 2: paused at this door and we couldn't meet because the
Speaker 2: germ risk was too high. But I knocked on the
Speaker 2: window and he waved and I waved, and just that
Speaker 2: tiny little moment, that sense of being seen and known
Speaker 2: and that you're not alone, and that particular kind of suffering,
Speaker 2: gave me a sense of hope that fueled me in
Speaker 2: those coming weeks. What surprised me most though, was I
Speaker 2: wasn't just hearing from young people with cancer. I was
Speaker 2: hearing from all kinds of people dealing with all kinds
Speaker 2: of life interruptions. And one of the very first letters
Speaker 2: I received was from a man by the name of
Speaker 2: Quinn Jones who was on death row in Texas, and
Speaker 2: he had read a column where I'd written about that
Speaker 2: sense of being in solitary confinement as I was, that
Speaker 2: sense of waiting for a verdict that is going to
Speaker 2: determine your future. For me, of course, you know that
Speaker 2: verdict meant biopsy results and all kinds of other tests.
Speaker 2: And he wrote me this beautiful letter in long hand cursive,
Speaker 2: and he explained that he had been on death row
Speaker 2: for more than half his life, from the age of eighteen,
Speaker 2: and that even though, of course our circumstances were different,
Speaker 2: he understood how it felt to be confronting your mortality
Speaker 2: and waiting to find out where the gavel landed. And
Speaker 2: it was just one of the most humbling, dizzying experiences
Speaker 2: I've got had. But more than that, you know, I
Speaker 2: think there's a way in which, when you're in pain,
Speaker 2: that pain can turn you selfish, and in a way
Speaker 2: it's necessary. You have to be preoccupied with what's happening
Speaker 2: with your body and accounting how you're feeling, and you know,
Speaker 2: making sure that you're keeping yourself alive. But in the
Speaker 2: act of writing, in the act of daring to be vulnerable,
Speaker 2: which had felt frightening and uncomfortable, I realized that deep,
Speaker 2: unvarnished vulnerability creates a reverberation where vulnerability begets vulnerability begets vulnerability.
Speaker 2: And so in writing my story, I was getting the
Speaker 2: privilege of hearing so many stories from so many different people,
Speaker 2: from so many different walks of life, and it was
Speaker 2: I think a much needed reminder for me that we
Speaker 2: all have these life interrupted moments, these things that happen
Speaker 2: that bring you to the floor. And there was a
Speaker 2: kind of equalizing sense to that, a sense that I
Speaker 2: wasn't alone, and that I wasn't special, and that I
Speaker 2: was part of, you know, the human experience.
Speaker 1: Yeah, I'm getting emotional in this moment because one of
Speaker 1: those messages was for me.
Speaker 2: I remember I.
Speaker 1: Read I think I reached out to you on Facebook,
Speaker 1: but I was I think we're around the same age
Speaker 1: I was in my early twenties. I remember when your
Speaker 1: first column came out. I remember experiencing I mean again nothing, Well,
Speaker 1: we're not supposed to compare suffering, so I'm not going
Speaker 1: to do that for your sake, for your Olympics. I know,
Speaker 1: no suffering lipings, but I had been experiencing just one
Speaker 1: of the most acute, crippling bouts of anxiety that I
Speaker 1: had ever experienced, and You're your column was so transformative
Speaker 1: for me. So like, thank you, I guess in hindsight
Speaker 1: for the way that you made me feel in that
Speaker 1: moment and for what you did for young like twenty
Speaker 1: something my I mean, I can't imagine the number of
Speaker 1: lives that you be touched through the column, but just
Speaker 1: a personal thank you from me for that.
Speaker 2: Now I'm crying. Luckily this is a podcast on the
Speaker 2: Drippy Masskcara.
Speaker 1: Yeah. But I think what's interesting looking back is when
Speaker 1: I sent you that note, like, I wasn't ready to
Speaker 1: be vulnerable about the anxiety that I was facing, but
Speaker 1: it was enough for me as a reader to see
Speaker 1: that you were like, that's part of the equation for
Speaker 1: progress is you just see it reflected in someone else,
Speaker 1: and you'll take your own time with whatever your own
Speaker 1: things are, but eventually you'll feel comfortable talking about them.
Speaker 2: I feel the same way, and I think you know
Speaker 2: more than a writer. I'm a reader first, and part
Speaker 2: of why I've always been a wrath and this reader,
Speaker 2: you know, from the time I was very little, was
Speaker 2: that moment that I'm sure you've had that maybe someone
Speaker 2: listening has had, where you're reading a novel or a
Speaker 2: memoir or a poem and you glimpse a sense of recognition,
Speaker 2: a sense of being known, or of thinking, oh, I
Speaker 2: didn't know. I was allowed to admit that I didn't know.
Speaker 2: I was allowed to feel that or to say that.
Speaker 2: And that is the moment that I'm always looking for
Speaker 2: when I'm reading, and it's the moment I'm always striving
Speaker 2: for when I'm creating and writing.
Speaker 1: Well, mission accomplished. So just to bring listeners up to
Speaker 1: speed on your situation. So, the bone marrow transplant ended
Speaker 1: up being a success, but even though you were now
Speaker 1: in remission, your treatment did not end there right. You
Speaker 1: would need to take maintenance chemotherapy for several years to
Speaker 1: help prevent the leukemia from coming back. I'm so curious
Speaker 1: to know what was that period of time like for you.
Speaker 2: It was a strange time in my life because you know,
Speaker 2: I felt this pressure to get back to it, to
Speaker 2: get back to the land of the living. But the
Speaker 2: reality was that my transplant and the treatment I had
Speaker 2: done had left these permanent imprints on my life, everything
Speaker 2: from really reckoning, say with the loss of my fertility
Speaker 2: and the idea of motherhood as I'd known it, to
Speaker 2: a deep sense of anxiety. I think that comes when
Speaker 2: the ceiling has caved in on you and you no
Speaker 2: longer assume structural stability. I didn't feel safe in my body.
Speaker 2: Every cough sparked a fear of relapse. Every voicemail from
Speaker 2: the doctor's office would send my pulse racing, and I think,
Speaker 2: you know, more than anything. When I was finally done,
Speaker 2: what that meaning schemo. When the port in my chest
Speaker 2: was removed, I expected to feel a deep sense of
Speaker 2: gratitude and relief, and more than that, I expected to
Speaker 2: quickly and organically fold back into the world of the living.
Speaker 2: But that didn't happen, at least not in the way
Speaker 2: that I'd hoped. I was really struggling. I had spent
Speaker 2: at that point four years in the kingdom of the
Speaker 2: sick that had been my whole world, and I had
Speaker 2: figured out, you know, how to build a home for
Speaker 2: myself there. I'd even curved out a career within its conscience.
Speaker 2: And to my surprise, it was the outside world that
Speaker 2: suddenly felt scary and overwhelming to me. I was no
Speaker 2: longer a patient and I couldn't go back to twenty
Speaker 2: two year old me. But I had no idea who
Speaker 2: I was and how to find my way forward, and
Speaker 2: I felt a deep sense of shame. Because I was alive.
Speaker 2: I was lucky to be alive. I knew that so well.
Speaker 2: Out of the ten young cancer comrades as we called
Speaker 2: each other that I befriended during my time and treatment,
Speaker 2: only three of us were still there, and I felt
Speaker 2: that I should move on with my life. And as
Speaker 2: it turned out, moving on begin to feel more like
Speaker 2: a mirage or a myth, because we don't get to
Speaker 2: compartmentalize the most painful parts of our past. We can't,
Speaker 2: you know, skip over the hard work of healing and graving,
Speaker 2: and so instead I began the long journey not of
Speaker 2: moving on, but of trying to find my way forward,
Speaker 2: to move forward with all that had happened.
Speaker 1: Yeah, and listening to you, I'm hearing what a unique
Speaker 1: kind of loneliness post remission life presents to a person
Speaker 1: because and it's so rarely spoken about, which is there's
Speaker 1: this idea, you know, you're one of the lucky ones, Uleka,
Speaker 1: just like, go take your success story and move on.
Speaker 1: And it's such a disservice to the transition and how hard.
Speaker 3: That kind of re entry is.
Speaker 2: Yeah, you know.
Speaker 1: It's when you're in the throes of cancer and you
Speaker 1: tell people I have aggressive leukemia. There's an instant kind
Speaker 1: of compassion or simply that they can lend you. When
Speaker 1: you tell people I'm a recent cancer survivor, you don't
Speaker 1: what they say is congratulations, congratulations, right, I mean, that's
Speaker 1: that's the problem, congratulations, whereas the reaction maybe, I mean
Speaker 1: it should be maybe congratulations, but like maybe not and
Speaker 1: if it is congratulations and is congratulations, and let's have
Speaker 1: a discussion, you know.
Speaker 3: Yeah, so just tell me more more about that.
Speaker 2: Yeah. So, you know, while on treatment, I'd had this
Speaker 2: cavalry of doctors and friends and family surrounding me, and
Speaker 2: pretty instantly when I got that all clear done with chemo,
Speaker 2: I had this sense that everyone around me thought it
Speaker 2: was over, maybe because they wanted so badly to think
Speaker 2: it was over, but it wasn't over, you know, really
Speaker 2: grappling with what I later understood to be PTSD post
Speaker 2: traumatic stress disorder. Because I had been so focused on
Speaker 2: surviving for four years, it hadn't even occurred to me
Speaker 2: that there's a wide gap between surviving and living, and
Speaker 2: that while I was an expert at surviving, I didn't
Speaker 2: know how to live. And in a strange sense, it
Speaker 2: was the hardest, most isolating transition because I didn't have
Speaker 2: treatment protocols, I didn't have doctors telling me what to do.
Speaker 2: I was entirely on my own to figure out how
Speaker 2: to make this transition and so at first, I, almost
Speaker 2: like an anthropologist might, was like looking around at my
Speaker 2: friends and thinking to myself, what is a normal, healthy
Speaker 2: twenty six year old women do and trying to emulate that, which,
Speaker 2: of course, you know, wasn't working. I was still healing
Speaker 2: physically from this experience, but more than that, emotionally and spiritually,
Speaker 2: And it took me a while to understand and acknowledge
Speaker 2: to myself that the hardest part of this experience was
Speaker 2: going to be its aftermath, because that's where my own
Speaker 2: work was going to begin. And as much as we
Speaker 2: think of recovery as some sort of gentle self care
Speaker 2: spree involving you know, massage, therapy and you know whatever else,
Speaker 2: for me, at least it was truly this kind of terrifying,
Speaker 2: brute act of discovery.
Speaker 1: Hey, thanks so much for listening. There's so much more
Speaker 1: of Suleka's story I want to share with you, So
Speaker 1: we've released a part two of our conversation that you
Speaker 1: can listen to. Now, we talk about the creative and
Speaker 1: adventurous way Suleka navigated her transition back to the Kingdom
Speaker 1: of the Well. We also talk about her recent experience
Speaker 1: re entering the Kingdom of the sick.
Speaker 2: Relapse was my biggest fear. It was this fear that
Speaker 2: I had nursed in the early years and that had slowly,
Speaker 2: little by little shrunk, but it was always a specter,
Speaker 2: and so to be confronted with that worst sphere for
Speaker 2: it to come to pass was devastating.
Speaker 1: The second part of the story is available now in
Speaker 1: the feed for A Slight Change of Plans. If you
Speaker 1: enjoyed our conversation, we on the Slight Change team would
Speaker 1: really appreciate if you could share this episode with someone
Speaker 1: you know who's going through their own life interrupted moment
Speaker 1: and need some help navigating that uncertainty. We'd also be
Speaker 1: grateful if you took a moment to follow the show
Speaker 1: on your podcast app of choice and to write a review.
Speaker 1: It helps more people discover the show and helps us
Speaker 1: keep making more episodes for you.
Speaker 3: Thanks so much. A Slight Change of Plans.
Speaker 1: Is created, written, and executive produced by me Maya Schunker.
Speaker 1: The Slight Change family includes our showrunner Tyler Green, our
Speaker 1: senior editor Kate Parkinson Morgan, our senior producer Trishia Bobida,
Speaker 1: and our engineer Eric oh Wang. Louis Scara wrote our
Speaker 1: delightful theme song and Ginger Smith helped arrange the vocals.
Speaker 1: A Slight Change of Plans is a production of Pushkin Industries,
Speaker 1: so a big thanks to everyone there, and of course
Speaker 1: a very special thanks to Jimmy Lee. You can follow
Speaker 1: a Slight Change of Plans on Instagram at doctor Maya Schunker.
Speaker 3: See you next week.