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Speaker 1: Pushkin. Hey everyone, this is part two of my conversation

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Speaker 1: with writer Suleka Jawad. If you haven't listened to part one,

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Speaker 1: I recommend going to the Slight Change of Plans feed

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Speaker 1: and starting there.

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Speaker 2: There's this expectation placed on I think cancer survivors, specifically

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Speaker 2: of gratitude for being alive. But I realized that for me,

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Speaker 2: it wasn't enough to just be alive. It was to

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Speaker 2: live a good life, a meaningful life, and I needed

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Speaker 2: to figure out how to do that.

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Speaker 1: When Suleka Jawad successfully completed cancer treatment in her mid twenties,

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Speaker 1: she was surprised by how difficult it was to readjust

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Speaker 1: to life outside the hospital. She found comfort in connecting

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Speaker 1: with people who were also navigating challenging transitions.

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Speaker 2: If I could turn back the clock. Of course, I

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Speaker 2: wish I hadn't gotten sick, But it was also true

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Speaker 2: that I had met some of the most extraordinary human

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Speaker 2: beings through this unfortunate experience, that I had learned so

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Speaker 2: many things through it, that I had grown, that I

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Speaker 2: had uncovered new parts of myself. I hadn't even known

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Speaker 2: what's error. And I think, you know, part of the

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Speaker 2: work for me has been stepping outside of my own

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Speaker 2: story of suffering.

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Speaker 1: On today's episode, how connecting with others can teach us

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Speaker 1: how to live again. I'm Maya Shunker, and this is

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Speaker 1: a slight change of plan, a show about who we

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Speaker 1: are and who we become in the face of a

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Speaker 1: big change. In the first part of my conversation with Suleka,

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Speaker 1: she told me how she turned to writing when she

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Speaker 1: was diagnosed with an aggressive form of leukemia. In her

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Speaker 1: New York Times column, Life Interrupted, she shared stories about

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Speaker 1: the darker less talked about parts of having cancer. These

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Speaker 1: stories really struck a chord with people. Total strangers from

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Speaker 1: all over the world wrote her letters, thanking her and

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Speaker 1: sharing their own experiences. These letters were a lifeline for Suleka,

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Speaker 1: and she returned to them years later when she was

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Speaker 1: adjusting to life in remission.

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Speaker 2: So, you know, in that first year when I finished treatment,

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Speaker 2: I was afraid. I was afraid of everything. I was

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Speaker 2: afraid of relapsing, I was afraid of the outside world.

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Speaker 2: I was afraid of taking risks, and I felt like

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Speaker 2: I was living in a cage of my own making.

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Speaker 2: And so I decided to start confronting some of those fears,

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Speaker 2: and I began to think about rites of passage, these

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Speaker 2: rituals that we create to mark a transition, to mark

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Speaker 2: that distance between no longer and not yet. We have

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Speaker 2: funerals and wakes, we have weddings and baby showers, but

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Speaker 2: when it comes to something like surviving a life threatening illness,

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Speaker 2: there isn't really a ritual or a rite of passage.

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Speaker 2: And I was going to have to create one for myself.

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Speaker 2: In the early years when I was writing the column,

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Speaker 2: I've gotten into the habit of printing out different letters

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Speaker 2: that meant a lot to me so that I could

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Speaker 2: reread them and revisit them. And I had this old

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Speaker 2: wooden trunk filled with life, and I began, in reading

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Speaker 2: these letters to think about maybe reaching out and going

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Speaker 2: to visit some of them. And so what began as

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Speaker 2: this hair brained idea turned, you know, three months later,

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Speaker 2: into me leaving home and my friends borrowed car, I

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Speaker 2: sublet my apartment, and embarking and what ended up being

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Speaker 2: a fifteen thousand mile, three month cross country road trip

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Speaker 2: to meet some of the strangers who had written me letters,

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Speaker 2: and I met all kinds of people. I met a

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Speaker 2: teenage girl who, like me, was emerging from years of treatment.

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Speaker 2: I met a family of survivalist ranchers whom I stayed

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Speaker 2: with in Montana. I met a mother who was grieving

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Speaker 2: the loss of her son, and the experience of sitting

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Speaker 2: across a table and telling the unvarnished truth of how

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Speaker 2: you're really doing, and hearing from people who'd been where

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Speaker 2: I'd been, even if the circumstances were really different, and

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Speaker 2: learning from them, and taking that time to be alone

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Speaker 2: in a car with my thoughts, which, after having been

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Speaker 2: experimented upon for many years, felt like my own bizarre

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Speaker 2: clinical trial and exposure therapy.

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Speaker 1: So one of the people you visited was a man

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Speaker 1: named Quentin Jones, who was convicted of murder at age

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Speaker 1: twenty one and had been in prison for half his life.

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Speaker 1: He'd written you a letter about the extreme isolation of

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Speaker 1: being on death row and sent it to you while

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Speaker 1: you were in the hospital. What was it like to

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Speaker 1: finally meet him?

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Speaker 2: So I had never been to a prison, he hadn't

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Speaker 2: had a visit or years and years, and we couldn't

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Speaker 2: have been more different. We grew up in wildly different worlds,

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Speaker 2: and I remember feeling nervous as I walked in and

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Speaker 2: walked through various metal detectors, and sitting in that room

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Speaker 2: there was a piece of plexiglass between us and picking

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Speaker 2: up the phone, and one of the very first questions

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Speaker 2: he asked me was what did you do during all

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Speaker 2: that time you spent in isolation in the hospital. And

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Speaker 2: I said to him that I'd gotten really, really good

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Speaker 2: at scrabble, and to my surprise, he said me too,

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Speaker 2: and explained that he and his neighboring prisoners would make

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Speaker 2: board games out of paper and call out their plays

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Speaker 2: through the bars. And it was, you know, this moment

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Speaker 2: of connection, this moment of like reaching through the plexiglass,

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Speaker 2: and I think, you know, for me a reminder again

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Speaker 2: of that idea of survival being its own kind of

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Speaker 2: creative act, but also how profoundly, you know, resilient and

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Speaker 2: tenacious the human spirit can be, because here was this

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Speaker 2: man who is never going to get out of prison,

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Speaker 2: who is never going to get to go on a

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Speaker 2: road trip, and yet he was finding his own ways

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Speaker 2: of reimagining that confinement into something connective and beautiful and playful.

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Speaker 1: So after one hundred days on the road, you returned home,

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Speaker 1: and in the decade that followed you wrote a memoir

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Speaker 1: might I say my favorite memoir Suleka called Between Two Kingdoms,

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Speaker 1: And in the book you talked about a number of

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Speaker 1: the people you met on the road, including Quentin. When

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Speaker 1: it was finally published in twenty twenty one, Quentin shout

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Speaker 1: with some news.

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Speaker 2: Yeah. So my very first week of book tour, I

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Speaker 2: got a letter from Quentin, who I'd stayed in touch

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Speaker 2: with all those years. We'd become pen pals, which is

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Speaker 2: this very favorite thing in the world to write letters

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Speaker 2: to people, saying that he'd gotten a date, meaning an

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Speaker 2: execution date. And my heart sank when I read those words.

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Speaker 2: Of course, he knew, I knew, we all knew that

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Speaker 2: it was a possibility, but at that point he'd been

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Speaker 2: on death row for over twenty years, and I knew

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Speaker 2: immediately in that moment that the idea of a book

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Speaker 2: tour suddenly felt meaningless unless it was to try to

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Speaker 2: amplify his story. And so I spent those first couple

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Speaker 2: events talking about my book, yes, but also talking about Quentin,

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Speaker 2: because to me, he is one of the most powerful

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Speaker 2: examples that I've personally encountered of our capacity for change.

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Speaker 2: He had spent those twenty plus years on death row,

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Speaker 2: reckoning with what he'd done, seeking forgiveness from the people

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Speaker 2: he'd hurt, And while you know, he believed that he

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Speaker 2: deserved to spend the rest of his life behind bars,

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Speaker 2: I felt so strongly that he didn't serve to die

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Speaker 2: because the man he'd entered prison as was no longer

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Speaker 2: the same man that I had gotten to know over

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Speaker 2: the course of those ten years, you know, as someone

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Speaker 2: who had fought so hard to be alive and ultimately

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Speaker 2: knew that my survival was left to chance. It felt

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Speaker 2: unacceptable to me that someone die when there was a

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Speaker 2: choice to be made about whether or not he could live.

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Speaker 2: So a couple days later, after talking about him and

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Speaker 2: what was happening now, I received an email from someone

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Speaker 2: who had been at one of those virtual book tour events,

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Speaker 2: who was a partner of a very large, very fancy

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Speaker 2: law firm, offering to represent him pro bo now. And

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Speaker 2: for the next couple of months we mounted a big

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Speaker 2: grassroots advocacy effort to try to get his death sentence

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Speaker 2: converted to a life sentence, and, to our great heartbreak,

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Speaker 2: the day before his execution date, we learned that he

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Speaker 2: hadn't been granted clemency, and when you're preparing to to

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Speaker 2: the execution chamber, you get a four hour phone call

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Speaker 2: or however many hours on the phone until you have

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Speaker 2: to go in. And Quinn called me and we spent

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Speaker 2: that entire afternoon talking and I was devastated. I felt

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Speaker 2: like I had let him down, and I worse than that,

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Speaker 2: you know, felt like maybe I had given him false hope,

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Speaker 2: which maybe is worse than confronting death with your eyes

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Speaker 2: wide open. And his response really stunned me. And he

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Speaker 2: said that, you know, even though it wasn't the outcome

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Speaker 2: that we'd expected, it was the best thing that had

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Speaker 2: happened to him, because in those months leading up to

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Speaker 2: that execution date, I had started a letter writing campaign

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Speaker 2: and inviting people to send him letters, which were his

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Speaker 2: very favorite thing. And he said that for the first

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Speaker 2: time in his life he felt loved, that he had

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Speaker 2: never experienced love before, and that to leave knowing that

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Speaker 2: he had been loved, knowing that his story had been known,

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Speaker 2: was the greatest gift of all. And we talked right

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Speaker 2: up until that last minute when he was escorted into

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Speaker 2: the execution chamber, and the very last words he said

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Speaker 2: to me were keep doing the good work, Keep throwing

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Speaker 2: a pebble into the lake and allowing the pebble to

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Speaker 2: ripple out.

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Speaker 1: Wow, how did you process the after math of Quentin's death.

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Speaker 2: I felt this deep sense of exhaustion in the weeks

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Speaker 2: to come, and at first I attributed it to the

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Speaker 2: many sleepless nights we'd spent on the phone with lawmakers

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Speaker 2: and activists and lawyers, and then I attributed it to grief.

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Speaker 2: But within a couple of months, as I was writing

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Speaker 2: about that fatigue in my journal, I realized I was

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Speaker 2: using euerily similar language to the language I'd used a

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Speaker 2: decade before and the months leading up to my diagnosis,

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Speaker 2: and I had had lowering blood counts throughout the pandemic,

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Speaker 2: and at first those low blood counts had been attributed

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Speaker 2: to COVID, then they were attributed to lyme disease, And

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Speaker 2: as they continued to drop and drop and drop, I

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Speaker 2: felt this awful sense of knowing. And I remember saying

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Speaker 2: to one of my oncology nurses, I think my leukemia

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Speaker 2: is back, and she said that can't be true. The

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Speaker 2: statistical odds of it coming back this far out are

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Speaker 2: less than five percent. But I pushed for that biopsy

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Speaker 2: because then not knowing was worse than the knowing, and

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Speaker 2: I learned that, against the odds, it was in fact back.

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Speaker 1: We'll be back in a moment with a slight change

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Speaker 1: of plans.

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Speaker 2: What was it like.

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Speaker 1: To receive this news the second time around?

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Speaker 2: Relapse was my biggest fear. It was this fear that

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Speaker 2: I had nursed in the early years and that had slowly,

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Speaker 2: little by little shrunk, but it was always a specter,

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Speaker 2: and so to be confronted with that worse fear for

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Speaker 2: it to come to pass was devastating and weirdly easier

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Speaker 2: because now the thing i'd heard, most of, the thing

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Speaker 2: I thought I couldn't possibly go through again, had happened,

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Speaker 2: and I knew I was going to do everything in

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Speaker 2: my power to get through it anyway. I had this

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Speaker 2: sense of deja vous, and I think, even though my

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Speaker 2: prognosis is a lot worse, I had the privilege of

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Speaker 2: having been through this before, and having written a book

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Speaker 2: pursing through this experience, and having spent a lot of

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Speaker 2: time reflecting on how I'd want to do it differently,

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Speaker 2: And so that's what I did.

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Speaker 1: And how did you approach it differently?

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Speaker 2: I went into the hospital without expectation, without that suitcase

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Speaker 2: full of books. I went into it open to everything,

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Speaker 2: wanting to be open to everything, wanting not to have

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Speaker 2: tough skin, but to have tender skin. I wanted to

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Speaker 2: feel at all. I wanted to feel the terror and

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Speaker 2: the clarity and the moments of heightened beauty that come

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Speaker 2: when you wrote the end might be near, and so

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Speaker 2: you know, I entered into that hospital certainly afraid of

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Speaker 2: what was to come, but more than that, full of love,

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Speaker 2: full of a sense of openness.

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Speaker 1: You've been dealt such a rough hand in life, and

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Speaker 1: I wonder how you avoid feeling consumed by resentment, or

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Speaker 1: how it is that you try to justify all the suffering,

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Speaker 1: the needless suffering that you've endured, And if you have

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Speaker 1: anything to share on that front. Yeah, I just don't

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Speaker 1: feel like the suffering serves any higher purpose, and so

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Speaker 1: I often feel at a loss when I have to

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Speaker 1: witness people suffering like that.

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Speaker 2: Yeah, I also don't think suffering in and of itself

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Speaker 2: serves a higher purpose. But I do think that suffering

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Speaker 2: brings you down to your most primal self. It heightens

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Speaker 2: all of the worst things and all of the most

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Speaker 2: important things. And I think that's useful information. And I think,

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Speaker 2: you know, part of the work for me has been

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Speaker 2: stepping outside of my own story of suffering. And when

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Speaker 2: I do that, when I can, you know, step beyond

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Speaker 2: myself and listen to someone else's story, really listen to it,

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Speaker 2: I feel and learn again and again that we're more

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Speaker 2: alike than we are different.

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Speaker 1: How did this latest round of treatment go? What's your

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Speaker 1: health like today?

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Speaker 2: So I made it through my transplant, obviously, yeah, I'm

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Speaker 2: here talking to you, but unlike the first time around,

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Speaker 2: there's no you know, cure insight for me. I will

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Speaker 2: be in treatment, some form of treatment for the rest

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Speaker 2: of my life, however long or short that may be.

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Speaker 2: And so I've you know, had to make it by work.

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Speaker 2: It's sort of my endless work to swim in that

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Speaker 2: ocean of uncertainty. And I'm you know, and a more

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Speaker 2: heightened in between place than maybe ever before. And I remember,

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Speaker 2: you know, my oncologist, when you first gave me this

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Speaker 2: news that I was going to be in treatment, and

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Speaker 2: definitely saying to me, you have to live every day

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Speaker 2: as if it's your last, which is the kind of

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Speaker 2: thing that we say in situations like these, and we

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Speaker 2: mean well that every time you would say I felt

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Speaker 2: this sense of doom fall over me, this anxiety that

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Speaker 2: I had to you know, race against time and you know,

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Speaker 2: seize every day and all the other things that come

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Speaker 2: with having mortality hang in the balance and so dead now,

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Speaker 2: I've had to shift to a different headspace. And the

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Speaker 2: way that I've found my seat legs within that uncertainty

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Speaker 2: is not in the grand gestures. It's not in you know,

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Speaker 2: ringing as much as I can out of life. It's

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Speaker 2: trying to live every day as if it's my first

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Speaker 2: to wake up with the sense of wonder and playfulness

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Speaker 2: and curiosity that a newborn baby might. And so every

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Speaker 2: day I wake up afraid. But I have to find

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Speaker 2: that tiny little thing that makes me curious, that tiny

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Speaker 2: little joy that makes me smile. And when I do that,

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Speaker 2: it's like exercising a muscle. And so that's what I'm doing,

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Speaker 2: and that's more than enough.

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Speaker 1: Hey, thanks so much for listening to hear more from Suleka.

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Speaker 1: I highly recommend checking out her memoir Between Two Kingdoms.

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Speaker 1: I also recommend watching the Netflix documentary American Symphony, which

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Speaker 1: captures her love story with her husband, musician Jhon fatiste,

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Speaker 1: and next week, join me for my conversation with vulnerability

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Speaker 1: researcher Brenee Brown talk about the identities that are most

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Speaker 1: central to her, for being a recovering perfectionist to being

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Speaker 1: a big sister, and how those identities have evolved over time.

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Speaker 1: And as always, we'd be so grateful if you can

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Speaker 1: follow this show wherever you listen to podcasts, whether it's

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Speaker 1: leaving a review or sharing an episode with a friend,

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Speaker 1: it helps us keep making this show for you, Thanks

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Speaker 1: so much. A Slight Change of Plans is created, written,

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Speaker 1: and executive produced by me Maya Schunker. The Slight Change

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Speaker 1: family includes our showrunner Tyler Green, our senior editor Kate

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Speaker 1: Parkinson Morgan, our senior producer Trisha Bbida, and our engineer

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Speaker 1: Eric o'huang. Luis Scara wrote our delightful theme song and

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Speaker 1: Ginger Smith helped arrange the vocals. A Slight Change of

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Speaker 1: Plans is a production of Pushkin Industries, so a big

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Speaker 1: thanks to everyone there, and of course a very special

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Speaker 1: thanks to Jimmy Lee. You can follow A Slight Change

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Speaker 1: of Plans on Instagram at doctor Maya Schunker. See you

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Speaker 1: next week,