Speaker 1: Pushkin. Hey everyone, this is part two of my conversation
Speaker 1: with writer Suleka Jawad. If you haven't listened to part one,
Speaker 1: I recommend going to the Slight Change of Plans feed
Speaker 1: and starting there.
Speaker 2: There's this expectation placed on I think cancer survivors, specifically
Speaker 2: of gratitude for being alive. But I realized that for me,
Speaker 2: it wasn't enough to just be alive. It was to
Speaker 2: live a good life, a meaningful life, and I needed
Speaker 2: to figure out how to do that.
Speaker 1: When Suleka Jawad successfully completed cancer treatment in her mid twenties,
Speaker 1: she was surprised by how difficult it was to readjust
Speaker 1: to life outside the hospital. She found comfort in connecting
Speaker 1: with people who were also navigating challenging transitions.
Speaker 2: If I could turn back the clock. Of course, I
Speaker 2: wish I hadn't gotten sick, But it was also true
Speaker 2: that I had met some of the most extraordinary human
Speaker 2: beings through this unfortunate experience, that I had learned so
Speaker 2: many things through it, that I had grown, that I
Speaker 2: had uncovered new parts of myself. I hadn't even known
Speaker 2: what's error. And I think, you know, part of the
Speaker 2: work for me has been stepping outside of my own
Speaker 2: story of suffering.
Speaker 1: On today's episode, how connecting with others can teach us
Speaker 1: how to live again. I'm Maya Shunker, and this is
Speaker 1: a slight change of plan, a show about who we
Speaker 1: are and who we become in the face of a
Speaker 1: big change. In the first part of my conversation with Suleka,
Speaker 1: she told me how she turned to writing when she
Speaker 1: was diagnosed with an aggressive form of leukemia. In her
Speaker 1: New York Times column, Life Interrupted, she shared stories about
Speaker 1: the darker less talked about parts of having cancer. These
Speaker 1: stories really struck a chord with people. Total strangers from
Speaker 1: all over the world wrote her letters, thanking her and
Speaker 1: sharing their own experiences. These letters were a lifeline for Suleka,
Speaker 1: and she returned to them years later when she was
Speaker 1: adjusting to life in remission.
Speaker 2: So, you know, in that first year when I finished treatment,
Speaker 2: I was afraid. I was afraid of everything. I was
Speaker 2: afraid of relapsing, I was afraid of the outside world.
Speaker 2: I was afraid of taking risks, and I felt like
Speaker 2: I was living in a cage of my own making.
Speaker 2: And so I decided to start confronting some of those fears,
Speaker 2: and I began to think about rites of passage, these
Speaker 2: rituals that we create to mark a transition, to mark
Speaker 2: that distance between no longer and not yet. We have
Speaker 2: funerals and wakes, we have weddings and baby showers, but
Speaker 2: when it comes to something like surviving a life threatening illness,
Speaker 2: there isn't really a ritual or a rite of passage.
Speaker 2: And I was going to have to create one for myself.
Speaker 2: In the early years when I was writing the column,
Speaker 2: I've gotten into the habit of printing out different letters
Speaker 2: that meant a lot to me so that I could
Speaker 2: reread them and revisit them. And I had this old
Speaker 2: wooden trunk filled with life, and I began, in reading
Speaker 2: these letters to think about maybe reaching out and going
Speaker 2: to visit some of them. And so what began as
Speaker 2: this hair brained idea turned, you know, three months later,
Speaker 2: into me leaving home and my friends borrowed car, I
Speaker 2: sublet my apartment, and embarking and what ended up being
Speaker 2: a fifteen thousand mile, three month cross country road trip
Speaker 2: to meet some of the strangers who had written me letters,
Speaker 2: and I met all kinds of people. I met a
Speaker 2: teenage girl who, like me, was emerging from years of treatment.
Speaker 2: I met a family of survivalist ranchers whom I stayed
Speaker 2: with in Montana. I met a mother who was grieving
Speaker 2: the loss of her son, and the experience of sitting
Speaker 2: across a table and telling the unvarnished truth of how
Speaker 2: you're really doing, and hearing from people who'd been where
Speaker 2: I'd been, even if the circumstances were really different, and
Speaker 2: learning from them, and taking that time to be alone
Speaker 2: in a car with my thoughts, which, after having been
Speaker 2: experimented upon for many years, felt like my own bizarre
Speaker 2: clinical trial and exposure therapy.
Speaker 1: So one of the people you visited was a man
Speaker 1: named Quentin Jones, who was convicted of murder at age
Speaker 1: twenty one and had been in prison for half his life.
Speaker 1: He'd written you a letter about the extreme isolation of
Speaker 1: being on death row and sent it to you while
Speaker 1: you were in the hospital. What was it like to
Speaker 1: finally meet him?
Speaker 2: So I had never been to a prison, he hadn't
Speaker 2: had a visit or years and years, and we couldn't
Speaker 2: have been more different. We grew up in wildly different worlds,
Speaker 2: and I remember feeling nervous as I walked in and
Speaker 2: walked through various metal detectors, and sitting in that room
Speaker 2: there was a piece of plexiglass between us and picking
Speaker 2: up the phone, and one of the very first questions
Speaker 2: he asked me was what did you do during all
Speaker 2: that time you spent in isolation in the hospital. And
Speaker 2: I said to him that I'd gotten really, really good
Speaker 2: at scrabble, and to my surprise, he said me too,
Speaker 2: and explained that he and his neighboring prisoners would make
Speaker 2: board games out of paper and call out their plays
Speaker 2: through the bars. And it was, you know, this moment
Speaker 2: of connection, this moment of like reaching through the plexiglass,
Speaker 2: and I think, you know, for me a reminder again
Speaker 2: of that idea of survival being its own kind of
Speaker 2: creative act, but also how profoundly, you know, resilient and
Speaker 2: tenacious the human spirit can be, because here was this
Speaker 2: man who is never going to get out of prison,
Speaker 2: who is never going to get to go on a
Speaker 2: road trip, and yet he was finding his own ways
Speaker 2: of reimagining that confinement into something connective and beautiful and playful.
Speaker 1: So after one hundred days on the road, you returned home,
Speaker 1: and in the decade that followed you wrote a memoir
Speaker 1: might I say my favorite memoir Suleka called Between Two Kingdoms,
Speaker 1: And in the book you talked about a number of
Speaker 1: the people you met on the road, including Quentin. When
Speaker 1: it was finally published in twenty twenty one, Quentin shout
Speaker 1: with some news.
Speaker 2: Yeah. So my very first week of book tour, I
Speaker 2: got a letter from Quentin, who I'd stayed in touch
Speaker 2: with all those years. We'd become pen pals, which is
Speaker 2: this very favorite thing in the world to write letters
Speaker 2: to people, saying that he'd gotten a date, meaning an
Speaker 2: execution date. And my heart sank when I read those words.
Speaker 2: Of course, he knew, I knew, we all knew that
Speaker 2: it was a possibility, but at that point he'd been
Speaker 2: on death row for over twenty years, and I knew
Speaker 2: immediately in that moment that the idea of a book
Speaker 2: tour suddenly felt meaningless unless it was to try to
Speaker 2: amplify his story. And so I spent those first couple
Speaker 2: events talking about my book, yes, but also talking about Quentin,
Speaker 2: because to me, he is one of the most powerful
Speaker 2: examples that I've personally encountered of our capacity for change.
Speaker 2: He had spent those twenty plus years on death row,
Speaker 2: reckoning with what he'd done, seeking forgiveness from the people
Speaker 2: he'd hurt, And while you know, he believed that he
Speaker 2: deserved to spend the rest of his life behind bars,
Speaker 2: I felt so strongly that he didn't serve to die
Speaker 2: because the man he'd entered prison as was no longer
Speaker 2: the same man that I had gotten to know over
Speaker 2: the course of those ten years, you know, as someone
Speaker 2: who had fought so hard to be alive and ultimately
Speaker 2: knew that my survival was left to chance. It felt
Speaker 2: unacceptable to me that someone die when there was a
Speaker 2: choice to be made about whether or not he could live.
Speaker 2: So a couple days later, after talking about him and
Speaker 2: what was happening now, I received an email from someone
Speaker 2: who had been at one of those virtual book tour events,
Speaker 2: who was a partner of a very large, very fancy
Speaker 2: law firm, offering to represent him pro bo now. And
Speaker 2: for the next couple of months we mounted a big
Speaker 2: grassroots advocacy effort to try to get his death sentence
Speaker 2: converted to a life sentence, and, to our great heartbreak,
Speaker 2: the day before his execution date, we learned that he
Speaker 2: hadn't been granted clemency, and when you're preparing to to
Speaker 2: the execution chamber, you get a four hour phone call
Speaker 2: or however many hours on the phone until you have
Speaker 2: to go in. And Quinn called me and we spent
Speaker 2: that entire afternoon talking and I was devastated. I felt
Speaker 2: like I had let him down, and I worse than that,
Speaker 2: you know, felt like maybe I had given him false hope,
Speaker 2: which maybe is worse than confronting death with your eyes
Speaker 2: wide open. And his response really stunned me. And he
Speaker 2: said that, you know, even though it wasn't the outcome
Speaker 2: that we'd expected, it was the best thing that had
Speaker 2: happened to him, because in those months leading up to
Speaker 2: that execution date, I had started a letter writing campaign
Speaker 2: and inviting people to send him letters, which were his
Speaker 2: very favorite thing. And he said that for the first
Speaker 2: time in his life he felt loved, that he had
Speaker 2: never experienced love before, and that to leave knowing that
Speaker 2: he had been loved, knowing that his story had been known,
Speaker 2: was the greatest gift of all. And we talked right
Speaker 2: up until that last minute when he was escorted into
Speaker 2: the execution chamber, and the very last words he said
Speaker 2: to me were keep doing the good work, Keep throwing
Speaker 2: a pebble into the lake and allowing the pebble to
Speaker 2: ripple out.
Speaker 1: Wow, how did you process the after math of Quentin's death.
Speaker 2: I felt this deep sense of exhaustion in the weeks
Speaker 2: to come, and at first I attributed it to the
Speaker 2: many sleepless nights we'd spent on the phone with lawmakers
Speaker 2: and activists and lawyers, and then I attributed it to grief.
Speaker 2: But within a couple of months, as I was writing
Speaker 2: about that fatigue in my journal, I realized I was
Speaker 2: using euerily similar language to the language I'd used a
Speaker 2: decade before and the months leading up to my diagnosis,
Speaker 2: and I had had lowering blood counts throughout the pandemic,
Speaker 2: and at first those low blood counts had been attributed
Speaker 2: to COVID, then they were attributed to lyme disease, And
Speaker 2: as they continued to drop and drop and drop, I
Speaker 2: felt this awful sense of knowing. And I remember saying
Speaker 2: to one of my oncology nurses, I think my leukemia
Speaker 2: is back, and she said that can't be true. The
Speaker 2: statistical odds of it coming back this far out are
Speaker 2: less than five percent. But I pushed for that biopsy
Speaker 2: because then not knowing was worse than the knowing, and
Speaker 2: I learned that, against the odds, it was in fact back.
Speaker 1: We'll be back in a moment with a slight change
Speaker 1: of plans.
Speaker 2: What was it like.
Speaker 1: To receive this news the second time around?
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 worse fear for
Speaker 2: it to come to pass was devastating and weirdly easier
Speaker 2: because now the thing i'd heard, most of, the thing
Speaker 2: I thought I couldn't possibly go through again, had happened,
Speaker 2: and I knew I was going to do everything in
Speaker 2: my power to get through it anyway. I had this
Speaker 2: sense of deja vous, and I think, even though my
Speaker 2: prognosis is a lot worse, I had the privilege of
Speaker 2: having been through this before, and having written a book
Speaker 2: pursing through this experience, and having spent a lot of
Speaker 2: time reflecting on how I'd want to do it differently,
Speaker 2: And so that's what I did.
Speaker 1: And how did you approach it differently?
Speaker 2: I went into the hospital without expectation, without that suitcase
Speaker 2: full of books. I went into it open to everything,
Speaker 2: wanting to be open to everything, wanting not to have
Speaker 2: tough skin, but to have tender skin. I wanted to
Speaker 2: feel at all. I wanted to feel the terror and
Speaker 2: the clarity and the moments of heightened beauty that come
Speaker 2: when you wrote the end might be near, and so
Speaker 2: you know, I entered into that hospital certainly afraid of
Speaker 2: what was to come, but more than that, full of love,
Speaker 2: full of a sense of openness.
Speaker 1: You've been dealt such a rough hand in life, and
Speaker 1: I wonder how you avoid feeling consumed by resentment, or
Speaker 1: how it is that you try to justify all the suffering,
Speaker 1: the needless suffering that you've endured, And if you have
Speaker 1: anything to share on that front. Yeah, I just don't
Speaker 1: feel like the suffering serves any higher purpose, and so
Speaker 1: I often feel at a loss when I have to
Speaker 1: witness people suffering like that.
Speaker 2: Yeah, I also don't think suffering in and of itself
Speaker 2: serves a higher purpose. But I do think that suffering
Speaker 2: brings you down to your most primal self. It heightens
Speaker 2: all of the worst things and all of the most
Speaker 2: important things. And I think that's useful information. And I think,
Speaker 2: you know, part of the work for me has been
Speaker 2: stepping outside of my own story of suffering. And when
Speaker 2: I do that, when I can, you know, step beyond
Speaker 2: myself and listen to someone else's story, really listen to it,
Speaker 2: I feel and learn again and again that we're more
Speaker 2: alike than we are different.
Speaker 1: How did this latest round of treatment go? What's your
Speaker 1: health like today?
Speaker 2: So I made it through my transplant, obviously, yeah, I'm
Speaker 2: here talking to you, but unlike the first time around,
Speaker 2: there's no you know, cure insight for me. I will
Speaker 2: be in treatment, some form of treatment for the rest
Speaker 2: of my life, however long or short that may be.
Speaker 2: And so I've you know, had to make it by work.
Speaker 2: It's sort of my endless work to swim in that
Speaker 2: ocean of uncertainty. And I'm you know, and a more
Speaker 2: heightened in between place than maybe ever before. And I remember,
Speaker 2: you know, my oncologist, when you first gave me this
Speaker 2: news that I was going to be in treatment, and
Speaker 2: definitely saying to me, you have to live every day
Speaker 2: as if it's your last, which is the kind of
Speaker 2: thing that we say in situations like these, and we
Speaker 2: mean well that every time you would say I felt
Speaker 2: this sense of doom fall over me, this anxiety that
Speaker 2: I had to you know, race against time and you know,
Speaker 2: seize every day and all the other things that come
Speaker 2: with having mortality hang in the balance and so dead now,
Speaker 2: I've had to shift to a different headspace. And the
Speaker 2: way that I've found my seat legs within that uncertainty
Speaker 2: is not in the grand gestures. It's not in you know,
Speaker 2: ringing as much as I can out of life. It's
Speaker 2: trying to live every day as if it's my first
Speaker 2: to wake up with the sense of wonder and playfulness
Speaker 2: and curiosity that a newborn baby might. And so every
Speaker 2: day I wake up afraid. But I have to find
Speaker 2: that tiny little thing that makes me curious, that tiny
Speaker 2: little joy that makes me smile. And when I do that,
Speaker 2: it's like exercising a muscle. And so that's what I'm doing,
Speaker 2: and that's more than enough.
Speaker 1: Hey, thanks so much for listening to hear more from Suleka.
Speaker 1: I highly recommend checking out her memoir Between Two Kingdoms.
Speaker 1: I also recommend watching the Netflix documentary American Symphony, which
Speaker 1: captures her love story with her husband, musician Jhon fatiste,
Speaker 1: and next week, join me for my conversation with vulnerability
Speaker 1: researcher Brenee Brown talk about the identities that are most
Speaker 1: central to her, for being a recovering perfectionist to being
Speaker 1: a big sister, and how those identities have evolved over time.
Speaker 1: And as always, we'd be so grateful if you can
Speaker 1: follow this show wherever you listen to podcasts, whether it's
Speaker 1: leaving a review or sharing an episode with a friend,
Speaker 1: it helps us keep making this show for you, Thanks
Speaker 1: so much. A Slight Change of Plans is created, written,
Speaker 1: and executive produced by me Maya Schunker. The Slight Change
Speaker 1: family includes our showrunner Tyler Green, our senior editor Kate
Speaker 1: Parkinson Morgan, our senior producer Trisha Bbida, and our engineer
Speaker 1: Eric o'huang. Luis Scara wrote our delightful theme song and
Speaker 1: Ginger Smith helped arrange the vocals. A Slight Change of
Speaker 1: Plans is a production of Pushkin Industries, so a big
Speaker 1: thanks to everyone there, and of course a very special
Speaker 1: thanks to Jimmy Lee. You can follow A Slight Change
Speaker 1: of Plans on Instagram at doctor Maya Schunker. See you
Speaker 1: next week,