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