WEBVTT - Part 2: Life, Interrupted with Suleika Jaouad

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<v Speaker 1>Pushkin. Hey everyone, this is part two of my conversation

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

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<v Speaker 1>I recommend going to the Slight Change of Plans feed

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<v Speaker 1>and starting there.

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<v Speaker 2>There's this expectation placed on I think cancer survivors, specifically

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<v Speaker 2>of gratitude for being alive. But I realized that for me,

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<v Speaker 2>it wasn't enough to just be alive. It was to

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<v Speaker 2>live a good life, a meaningful life, and I needed

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<v Speaker 2>to figure out how to do that.

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<v Speaker 1>When Suleka Jawad successfully completed cancer treatment in her mid twenties,

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<v Speaker 1>she was surprised by how difficult it was to readjust

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<v Speaker 1>to life outside the hospital. She found comfort in connecting

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<v Speaker 1>with people who were also navigating challenging transitions.

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<v Speaker 2>If I could turn back the clock. Of course, I

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<v Speaker 2>wish I hadn't gotten sick, But it was also true

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<v Speaker 2>that I had met some of the most extraordinary human

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<v Speaker 2>beings through this unfortunate experience, that I had learned so

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<v Speaker 2>many things through it, that I had grown, that I

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<v Speaker 2>had uncovered new parts of myself. I hadn't even known

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

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<v Speaker 2>work for me has been stepping outside of my own

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<v Speaker 2>story of suffering.

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<v Speaker 1>On today's episode, how connecting with others can teach us

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

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<v Speaker 1>a slight change of plan, a show about who we

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<v Speaker 1>are and who we become in the face of a

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<v Speaker 1>big change. In the first part of my conversation with Suleka,

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<v Speaker 1>she told me how she turned to writing when she

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<v Speaker 1>was diagnosed with an aggressive form of leukemia. In her

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<v Speaker 1>New York Times column, Life Interrupted, she shared stories about

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<v Speaker 1>the darker less talked about parts of having cancer. These

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<v Speaker 1>stories really struck a chord with people. Total strangers from

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<v Speaker 1>all over the world wrote her letters, thanking her and

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<v Speaker 1>sharing their own experiences. These letters were a lifeline for Suleka,

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<v Speaker 1>and she returned to them years later when she was

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<v Speaker 1>adjusting to life in remission.

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<v Speaker 2>So, you know, in that first year when I finished treatment,

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<v Speaker 2>I was afraid. I was afraid of everything. I was

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<v Speaker 2>afraid of relapsing, I was afraid of the outside world.

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<v Speaker 2>I was afraid of taking risks, and I felt like

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<v Speaker 2>I was living in a cage of my own making.

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<v Speaker 2>And so I decided to start confronting some of those fears,

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<v Speaker 2>and I began to think about rites of passage, these

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<v Speaker 2>rituals that we create to mark a transition, to mark

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<v Speaker 2>that distance between no longer and not yet. We have

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<v Speaker 2>funerals and wakes, we have weddings and baby showers, but

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<v Speaker 2>when it comes to something like surviving a life threatening illness,

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<v Speaker 2>there isn't really a ritual or a rite of passage.

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<v Speaker 2>And I was going to have to create one for myself.

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<v Speaker 2>In the early years when I was writing the column,

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<v Speaker 2>I've gotten into the habit of printing out different letters

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<v Speaker 2>that meant a lot to me so that I could

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<v Speaker 2>reread them and revisit them. And I had this old

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<v Speaker 2>wooden trunk filled with life, and I began, in reading

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<v Speaker 2>these letters to think about maybe reaching out and going

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<v Speaker 2>to visit some of them. And so what began as

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<v Speaker 2>this hair brained idea turned, you know, three months later,

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<v Speaker 2>into me leaving home and my friends borrowed car, I

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<v Speaker 2>sublet my apartment, and embarking and what ended up being

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<v Speaker 2>a fifteen thousand mile, three month cross country road trip

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<v Speaker 2>to meet some of the strangers who had written me letters,

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<v Speaker 2>and I met all kinds of people. I met a

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<v Speaker 2>teenage girl who, like me, was emerging from years of treatment.

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<v Speaker 2>I met a family of survivalist ranchers whom I stayed

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<v Speaker 2>with in Montana. I met a mother who was grieving

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<v Speaker 2>the loss of her son, and the experience of sitting

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<v Speaker 2>across a table and telling the unvarnished truth of how

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

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<v Speaker 2>I'd been, even if the circumstances were really different, and

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<v Speaker 2>learning from them, and taking that time to be alone

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<v Speaker 2>in a car with my thoughts, which, after having been

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<v Speaker 2>experimented upon for many years, felt like my own bizarre

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<v Speaker 2>clinical trial and exposure therapy.

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<v Speaker 1>So one of the people you visited was a man

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<v Speaker 1>named Quentin Jones, who was convicted of murder at age

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<v Speaker 1>twenty one and had been in prison for half his life.

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<v Speaker 1>He'd written you a letter about the extreme isolation of

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<v Speaker 1>being on death row and sent it to you while

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<v Speaker 1>you were in the hospital. What was it like to

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<v Speaker 1>finally meet him?

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<v Speaker 2>So I had never been to a prison, he hadn't

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<v Speaker 2>had a visit or years and years, and we couldn't

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<v Speaker 2>have been more different. We grew up in wildly different worlds,

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<v Speaker 2>and I remember feeling nervous as I walked in and

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<v Speaker 2>walked through various metal detectors, and sitting in that room

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<v Speaker 2>there was a piece of plexiglass between us and picking

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<v Speaker 2>up the phone, and one of the very first questions

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<v Speaker 2>he asked me was what did you do during all

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<v Speaker 2>that time you spent in isolation in the hospital. And

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<v Speaker 2>I said to him that I'd gotten really, really good

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<v Speaker 2>at scrabble, and to my surprise, he said me too,

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<v Speaker 2>and explained that he and his neighboring prisoners would make

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<v Speaker 2>board games out of paper and call out their plays

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<v Speaker 2>through the bars. And it was, you know, this moment

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<v Speaker 2>of connection, this moment of like reaching through the plexiglass,

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<v Speaker 2>and I think, you know, for me a reminder again

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<v Speaker 2>of that idea of survival being its own kind of

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<v Speaker 2>creative act, but also how profoundly, you know, resilient and

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<v Speaker 2>tenacious the human spirit can be, because here was this

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<v Speaker 2>man who is never going to get out of prison,

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<v Speaker 2>who is never going to get to go on a

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<v Speaker 2>road trip, and yet he was finding his own ways

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<v Speaker 2>of reimagining that confinement into something connective and beautiful and playful.

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<v Speaker 1>So after one hundred days on the road, you returned home,

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<v Speaker 1>and in the decade that followed you wrote a memoir

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<v Speaker 1>might I say my favorite memoir Suleka called Between Two Kingdoms,

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<v Speaker 1>And in the book you talked about a number of

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<v Speaker 1>the people you met on the road, including Quentin. When

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<v Speaker 1>it was finally published in twenty twenty one, Quentin shout

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<v Speaker 1>with some news.

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<v Speaker 2>Yeah. So my very first week of book tour, I

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<v Speaker 2>got a letter from Quentin, who I'd stayed in touch

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

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<v Speaker 2>this very favorite thing in the world to write letters

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<v Speaker 2>to people, saying that he'd gotten a date, meaning an

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<v Speaker 2>execution date. And my heart sank when I read those words.

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<v Speaker 2>Of course, he knew, I knew, we all knew that

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<v Speaker 2>it was a possibility, but at that point he'd been

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<v Speaker 2>on death row for over twenty years, and I knew

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<v Speaker 2>immediately in that moment that the idea of a book

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<v Speaker 2>tour suddenly felt meaningless unless it was to try to

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<v Speaker 2>amplify his story. And so I spent those first couple

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<v Speaker 2>events talking about my book, yes, but also talking about Quentin,

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<v Speaker 2>because to me, he is one of the most powerful

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<v Speaker 2>examples that I've personally encountered of our capacity for change.

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<v Speaker 2>He had spent those twenty plus years on death row,

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<v Speaker 2>reckoning with what he'd done, seeking forgiveness from the people

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<v Speaker 2>he'd hurt, And while you know, he believed that he

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<v Speaker 2>deserved to spend the rest of his life behind bars,

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<v Speaker 2>I felt so strongly that he didn't serve to die

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<v Speaker 2>because the man he'd entered prison as was no longer

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<v Speaker 2>the same man that I had gotten to know over

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<v Speaker 2>the course of those ten years, you know, as someone

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<v Speaker 2>who had fought so hard to be alive and ultimately

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<v Speaker 2>knew that my survival was left to chance. It felt

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<v Speaker 2>unacceptable to me that someone die when there was a

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<v Speaker 2>choice to be made about whether or not he could live.

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<v Speaker 2>So a couple days later, after talking about him and

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<v Speaker 2>what was happening now, I received an email from someone

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<v Speaker 2>who had been at one of those virtual book tour events,

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<v Speaker 2>who was a partner of a very large, very fancy

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<v Speaker 2>law firm, offering to represent him pro bo now. And

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<v Speaker 2>for the next couple of months we mounted a big

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<v Speaker 2>grassroots advocacy effort to try to get his death sentence

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<v Speaker 2>converted to a life sentence, and, to our great heartbreak,

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<v Speaker 2>the day before his execution date, we learned that he

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<v Speaker 2>hadn't been granted clemency, and when you're preparing to to

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<v Speaker 2>the execution chamber, you get a four hour phone call

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<v Speaker 2>or however many hours on the phone until you have

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<v Speaker 2>to go in. And Quinn called me and we spent

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<v Speaker 2>that entire afternoon talking and I was devastated. I felt

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<v Speaker 2>like I had let him down, and I worse than that,

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<v Speaker 2>you know, felt like maybe I had given him false hope,

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<v Speaker 2>which maybe is worse than confronting death with your eyes

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<v Speaker 2>wide open. And his response really stunned me. And he

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<v Speaker 2>said that, you know, even though it wasn't the outcome

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<v Speaker 2>that we'd expected, it was the best thing that had

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<v Speaker 2>happened to him, because in those months leading up to

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<v Speaker 2>that execution date, I had started a letter writing campaign

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<v Speaker 2>and inviting people to send him letters, which were his

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<v Speaker 2>very favorite thing. And he said that for the first

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<v Speaker 2>time in his life he felt loved, that he had

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<v Speaker 2>never experienced love before, and that to leave knowing that

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<v Speaker 2>he had been loved, knowing that his story had been known,

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<v Speaker 2>was the greatest gift of all. And we talked right

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<v Speaker 2>up until that last minute when he was escorted into

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<v Speaker 2>the execution chamber, and the very last words he said

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<v Speaker 2>to me were keep doing the good work, Keep throwing

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<v Speaker 2>a pebble into the lake and allowing the pebble to

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<v Speaker 2>ripple out.

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

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<v Speaker 2>I felt this deep sense of exhaustion in the weeks

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<v Speaker 2>to come, and at first I attributed it to the

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<v Speaker 2>many sleepless nights we'd spent on the phone with lawmakers

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<v Speaker 2>and activists and lawyers, and then I attributed it to grief.

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<v Speaker 2>But within a couple of months, as I was writing

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<v Speaker 2>about that fatigue in my journal, I realized I was

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<v Speaker 2>using euerily similar language to the language I'd used a

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<v Speaker 2>decade before and the months leading up to my diagnosis,

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<v Speaker 2>and I had had lowering blood counts throughout the pandemic,

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<v Speaker 2>and at first those low blood counts had been attributed

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<v Speaker 2>to COVID, then they were attributed to lyme disease, And

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<v Speaker 2>as they continued to drop and drop and drop, I

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<v Speaker 2>felt this awful sense of knowing. And I remember saying

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<v Speaker 2>to one of my oncology nurses, I think my leukemia

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

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<v Speaker 2>statistical odds of it coming back this far out are

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<v Speaker 2>less than five percent. But I pushed for that biopsy

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<v Speaker 2>because then not knowing was worse than the knowing, and

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<v Speaker 2>I learned that, against the odds, it was in fact back.

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<v Speaker 1>We'll be back in a moment with a slight change

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<v Speaker 1>of plans.

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<v Speaker 2>What was it like.

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<v Speaker 1>To receive this news the second time around?

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<v Speaker 2>Relapse was my biggest fear. It was this fear that

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<v Speaker 2>I had nursed in the early years and that had slowly,

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<v Speaker 2>little by little shrunk, but it was always a specter,

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<v Speaker 2>and so to be confronted with that worse fear for

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<v Speaker 2>it to come to pass was devastating and weirdly easier

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<v Speaker 2>because now the thing i'd heard, most of, the thing

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<v Speaker 2>I thought I couldn't possibly go through again, had happened,

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<v Speaker 2>and I knew I was going to do everything in

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<v Speaker 2>my power to get through it anyway. I had this

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<v Speaker 2>sense of deja vous, and I think, even though my

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<v Speaker 2>prognosis is a lot worse, I had the privilege of

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<v Speaker 2>having been through this before, and having written a book

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<v Speaker 2>pursing through this experience, and having spent a lot of

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<v Speaker 2>time reflecting on how I'd want to do it differently,

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<v Speaker 2>And so that's what I did.

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<v Speaker 1>And how did you approach it differently?

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<v Speaker 2>I went into the hospital without expectation, without that suitcase

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<v Speaker 2>full of books. I went into it open to everything,

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<v Speaker 2>wanting to be open to everything, wanting not to have

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<v Speaker 2>tough skin, but to have tender skin. I wanted to

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<v Speaker 2>feel at all. I wanted to feel the terror and

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<v Speaker 2>the clarity and the moments of heightened beauty that come

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<v Speaker 2>when you wrote the end might be near, and so

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<v Speaker 2>you know, I entered into that hospital certainly afraid of

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<v Speaker 2>what was to come, but more than that, full of love,

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<v Speaker 2>full of a sense of openness.

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<v Speaker 1>You've been dealt such a rough hand in life, and

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<v Speaker 1>I wonder how you avoid feeling consumed by resentment, or

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<v Speaker 1>how it is that you try to justify all the suffering,

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<v Speaker 1>the needless suffering that you've endured, And if you have

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

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<v Speaker 1>feel like the suffering serves any higher purpose, and so

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<v Speaker 1>I often feel at a loss when I have to

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<v Speaker 1>witness people suffering like that.

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<v Speaker 2>Yeah, I also don't think suffering in and of itself

0:17:51.076 --> 0:17:56.956
<v Speaker 2>serves a higher purpose. But I do think that suffering

0:17:57.636 --> 0:18:04.476
<v Speaker 2>brings you down to your most primal self. It heightens

0:18:04.516 --> 0:18:08.596
<v Speaker 2>all of the worst things and all of the most

0:18:08.636 --> 0:18:13.556
<v Speaker 2>important things. And I think that's useful information. And I think,

0:18:13.756 --> 0:18:17.356
<v Speaker 2>you know, part of the work for me has been

0:18:17.636 --> 0:18:22.596
<v Speaker 2>stepping outside of my own story of suffering. And when

0:18:22.636 --> 0:18:27.756
<v Speaker 2>I do that, when I can, you know, step beyond

0:18:27.796 --> 0:18:32.956
<v Speaker 2>myself and listen to someone else's story, really listen to it,

0:18:34.276 --> 0:18:38.996
<v Speaker 2>I feel and learn again and again that we're more

0:18:39.036 --> 0:18:40.276
<v Speaker 2>alike than we are different.

0:18:41.836 --> 0:18:45.076
<v Speaker 1>How did this latest round of treatment go? What's your

0:18:45.076 --> 0:18:45.836
<v Speaker 1>health like today?

0:18:47.396 --> 0:18:53.156
<v Speaker 2>So I made it through my transplant, obviously, yeah, I'm

0:18:53.156 --> 0:18:57.556
<v Speaker 2>here talking to you, but unlike the first time around,

0:18:57.676 --> 0:19:03.076
<v Speaker 2>there's no you know, cure insight for me. I will

0:19:03.076 --> 0:19:07.196
<v Speaker 2>be in treatment, some form of treatment for the rest

0:19:07.236 --> 0:19:11.516
<v Speaker 2>of my life, however long or short that may be.

0:19:12.396 --> 0:19:19.196
<v Speaker 2>And so I've you know, had to make it by work.

0:19:19.236 --> 0:19:23.116
<v Speaker 2>It's sort of my endless work to swim in that

0:19:23.196 --> 0:19:26.996
<v Speaker 2>ocean of uncertainty. And I'm you know, and a more

0:19:27.116 --> 0:19:33.196
<v Speaker 2>heightened in between place than maybe ever before. And I remember,

0:19:33.996 --> 0:19:36.316
<v Speaker 2>you know, my oncologist, when you first gave me this

0:19:36.396 --> 0:19:38.076
<v Speaker 2>news that I was going to be in treatment, and

0:19:38.116 --> 0:19:41.676
<v Speaker 2>definitely saying to me, you have to live every day

0:19:41.716 --> 0:19:43.716
<v Speaker 2>as if it's your last, which is the kind of

0:19:43.756 --> 0:19:47.116
<v Speaker 2>thing that we say in situations like these, and we

0:19:47.236 --> 0:19:50.436
<v Speaker 2>mean well that every time you would say I felt

0:19:50.476 --> 0:19:54.836
<v Speaker 2>this sense of doom fall over me, this anxiety that

0:19:54.916 --> 0:19:58.276
<v Speaker 2>I had to you know, race against time and you know,

0:19:58.996 --> 0:20:03.516
<v Speaker 2>seize every day and all the other things that come

0:20:03.596 --> 0:20:09.876
<v Speaker 2>with having mortality hang in the balance and so dead now,

0:20:10.996 --> 0:20:16.996
<v Speaker 2>I've had to shift to a different headspace. And the

0:20:17.036 --> 0:20:22.356
<v Speaker 2>way that I've found my seat legs within that uncertainty

0:20:23.196 --> 0:20:27.836
<v Speaker 2>is not in the grand gestures. It's not in you know,

0:20:27.956 --> 0:20:31.156
<v Speaker 2>ringing as much as I can out of life. It's

0:20:31.636 --> 0:20:36.516
<v Speaker 2>trying to live every day as if it's my first

0:20:37.156 --> 0:20:43.556
<v Speaker 2>to wake up with the sense of wonder and playfulness

0:20:43.716 --> 0:20:48.036
<v Speaker 2>and curiosity that a newborn baby might. And so every

0:20:48.116 --> 0:20:52.156
<v Speaker 2>day I wake up afraid. But I have to find

0:20:52.196 --> 0:20:56.876
<v Speaker 2>that tiny little thing that makes me curious, that tiny

0:20:56.996 --> 0:21:02.236
<v Speaker 2>little joy that makes me smile. And when I do that,

0:21:02.316 --> 0:21:06.316
<v Speaker 2>it's like exercising a muscle. And so that's what I'm doing,

0:21:07.116 --> 0:21:08.316
<v Speaker 2>and that's more than enough.

0:21:47.116 --> 0:21:50.596
<v Speaker 1>Hey, thanks so much for listening to hear more from Suleka.

0:21:50.796 --> 0:21:54.236
<v Speaker 1>I highly recommend checking out her memoir Between Two Kingdoms.

0:21:54.916 --> 0:21:59.276
<v Speaker 1>I also recommend watching the Netflix documentary American Symphony, which

0:21:59.356 --> 0:22:03.276
<v Speaker 1>captures her love story with her husband, musician Jhon fatiste,

0:22:03.756 --> 0:22:06.836
<v Speaker 1>and next week, join me for my conversation with vulnerability

0:22:06.876 --> 0:22:10.796
<v Speaker 1>researcher Brenee Brown talk about the identities that are most

0:22:10.796 --> 0:22:14.076
<v Speaker 1>central to her, for being a recovering perfectionist to being

0:22:14.116 --> 0:22:17.676
<v Speaker 1>a big sister, and how those identities have evolved over time.

0:22:18.636 --> 0:22:21.076
<v Speaker 1>And as always, we'd be so grateful if you can

0:22:21.116 --> 0:22:24.436
<v Speaker 1>follow this show wherever you listen to podcasts, whether it's

0:22:24.516 --> 0:22:26.996
<v Speaker 1>leaving a review or sharing an episode with a friend,

0:22:27.436 --> 0:22:30.196
<v Speaker 1>it helps us keep making this show for you, Thanks

0:22:30.196 --> 0:22:43.076
<v Speaker 1>so much. A Slight Change of Plans is created, written,

0:22:43.156 --> 0:22:46.876
<v Speaker 1>and executive produced by me Maya Schunker. The Slight Change

0:22:46.916 --> 0:22:51.196
<v Speaker 1>family includes our showrunner Tyler Green, our senior editor Kate

0:22:51.236 --> 0:22:55.876
<v Speaker 1>Parkinson Morgan, our senior producer Trisha Bbida, and our engineer

0:22:55.996 --> 0:22:59.996
<v Speaker 1>Eric o'huang. Luis Scara wrote our delightful theme song and

0:23:00.076 --> 0:23:03.516
<v Speaker 1>Ginger Smith helped arrange the vocals. A Slight Change of

0:23:03.596 --> 0:23:06.636
<v Speaker 1>Plans is a production of Pushkin Industries, so a big

0:23:06.676 --> 0:23:10.236
<v Speaker 1>thanks to everyone there, and of course a very special

0:23:10.276 --> 0:23:13.276
<v Speaker 1>thanks to Jimmy Lee. You can follow A Slight Change

0:23:13.316 --> 0:23:16.876
<v Speaker 1>of Plans on Instagram at doctor Maya Schunker. See you

0:23:16.916 --> 0:23:17.356
<v Speaker 1>next week,