Suleika Jaouad: How Do You Move Forward After Cancer?

Jun 21, 2019

Part 3 of the TED Radio Hour episode Moving Forward.

About Suleika Jaouad's TED Talk

At 26, Suleika Jaouad left the hospital after four years of cancer treatment. But instead of joy, she felt exhausted and broken. She says moving forward sometimes means reckoning with your past.

About Suleika Jaouad

At age 22, Suleika Jaouad was diagnosed with leukemia. She began writing the New York Times column and video series "Life, Interrupted" from the front lines of her hospital bed.

She has since become an advocate for those living with illness and other forms of adversity. She is also the author of the forthcoming book, Between Two Kingdoms.

She holds a degree from Princeton University and plays the upright bass.

Copyright 2019 NPR. To see more, visit https://www.npr.org.

GUY RAZ, HOST:

It's the TED Radio Hour from NPR. I'm Guy Raz.

Hi. Is it Suleika?

SULEIKA JAOUAD: Suleika.

RAZ: And on the show today - stories and ideas on Moving Forward...

JAOUAD: Oh, no. You're not the only one.

RAZ: ...Because, as we've heard, it's not that easy to just move on.

JAOUAD: That resonates so deeply. When we talk about moving on in the context of illness, we often use the word healing, and I think what we mean by healing, often, is this expectation that there's going to be an erasure of the illness or the injury and that you're going to kind of move forward through that process. And for me, healing has not been about moving on but kind of integrating, you know, the imprints of my illness into my life, which is a really different kind of thing.

RAZ: Yeah. Oh, before I forget, can you please introduce yourself and tell me what you do?

JAOUAD: Yeah. My name is Suleika Jaouad, and I am a writer.

RAZ: And I guess your intention in life was to do something slightly different, right?

JAOUAD: Yeah. I wanted to be a reporter. More specifically, I wanted to be a war correspondent. And I had just moved to Paris a few months after college and just landed what I hoped might be my first kind of small break into the world of journalism, which was an opportunity to work as a stringer, but I never got to do that.

RAZ: Suleika Jaouad picks up the story from the TED stage.

(SOUNDBITE OF TED TALK)

JAOUAD: At 22 years old, I was diagnosed with leukemia. The doctors told me and my parents point blank that I had about a 35% chance of long-term survival. I couldn't wrap my head around what that prognosis meant, but I understood that the reality and the life I'd imagined for myself had shattered. Overnight, I lost my job, my apartment, my independence, and I became patient number 5624.

Over the next four years of chemo, a clinical trial and a bone marrow transplant, the hospital became my home, my bed, the place I lived 24/7. Since it was unlikely that I'd ever get better, I had to accept my new reality, and I adapted. I became fluent in medicalese, made friends with a group of other young cancer patients, built a vast collection of neon wigs and learned to use my rolling IV pole as a skateboard.

I even achieved my dream of becoming a war correspondent, although not in the way I'd expected. It started with a blog reporting from the front lines of my hospital bed, and it morphed into a column I wrote for The New York Times called Life, Interrupted.

RAZ: I want to ask you about how you started to write about what you were going through. How did that happen?

JAOUAD: So when I got my diagnosis, my world changed pretty drastically. I essentially moved into a hospital room, although I didn't realize that that's what was happening at the time where I spent those first two months of treatment in isolation. And my cancer wasn't responding to treatments. And during that first summer, I not only felt obviously, you know, scared and just kind of horrified by what was happening in my body and to my family but also incredibly frustrated because age 22 is an age, I think, for so many people where you're kind of putting yourself out into the world and figuring out who you are and what it is that you want to do and where it is that you want to be.

And so I desperately wanted to figure out a way to still participate in the world from my hospital bed. You know, even though I couldn't be a reporter, I was just simply going to write in my journal every single day. And so I started not only to kind of find my voice but to uncover a different kind of writing to anything I'd done in the past.

I think there's this way in which, you know, illness turns your gaze inward. As a patient, you're constantly being asked to report on yourself and on your body and on your symptoms, and so for the first time, I really began to explore this, like, more essayistic, first-person kind of writing. And the material from those journals would end up being the material for the column I would later write.

(SOUNDBITE OF TED TALK)

JAOUAD: But above all else, my focus was on surviving, and - spoiler alert - I did survive. Yeah.

(APPLAUSE)

JAOUAD: Thanks to an army of supportive humans, I'm not just still here. I am cured of my cancer. So when you go through a traumatic experience like this, people treat you differently. They start telling you how much of an inspiration you are. They say you're a warrior. They call you a hero, someone who's lived the mythical hero's journey, who's endured impossible trials and, against the odds, lived to tell the tale - returning better and braver for what you've been through. The truth is that, for me, the hardest part of my cancer experience began once the cancer was gone.

(SOUNDBITE OF MUSIC)

RAZ: I think there's this natural tendency for humans to think of experiences in terms of a story arc. Right? So like, in the case of going through illness and being cured, that's when the story ends. Right? You're cured, the story ends, and then you magically sail off into the sunset. But that actually is not what happens. Right?

JAOUAD: Yeah. I mean, one of the oldest story arcs that we know is the story of the hero's journey. And I think, you know, next to that or maybe enmeshed in that is the survivor's journey. And in our telling of these stories, the end of that journey is the day that you're declared cancer-free or the day you finish your last day of chemotherapy. But for me, you know, if anything, it felt like the beginning because, up until that point, I'd just done what I needed to do to stay alive. And the agency came into play once I was kind of out of that medical machine and tasked with figuring out how to not just survive, but actually live and figure out how to be a person back in the world.

RAZ: Yeah. You know, years ago, I covered the Iraq War and Afghanistan and spent a lot of time with troops. And oftentimes, when they would come home from deployments in Iraq or Afghanistan, the reentry was so difficult because in war, experiencing that trauma, there was a single purpose and mission. And essentially, it was to survive and to protect the people around you. And when they returned home, that sense of purpose was gone. And it sort of sounds like that is sort of what happened with you.

JAOUAD: Totally, yeah. And it's not just your own trauma. Right? It's the trauma that you witness of the patients around you. Out of the 10 young cancer patients that I befriended during my time in treatment, only three of us are still alive. And so for me, when I came out of this, I had PTSD, but I didn't have the language to call it that. But I think the reason that I had that sort of cognitive dissonance is because on the day that I finished chemo, I received, you know, two dozen texts congratulating me on being done with treatment and people saying, like, this is the best day. And you're going to get to go live your life, and it's going to be amazing, and we're so proud of you.

And of course, my experience of that was really different. I felt totally physically wrecked with exhaustion just from the cumulative effect of those four years of cancer treatment. I was grieving the death of one of my best friends, Melissa, who had died a month earlier. And I was really struggling with some of the psychological imprints of this experience. And on top of that, I think I felt this certain pressure to feel like this should be the best, you know, moment of this whole experience when, in fact, it was the very opposite.

(SOUNDBITE OF TED TALK)

JAOUAD: Now, don't get me wrong. I'm incredibly grateful to be alive, and I'm painfully aware that this struggle is a privilege that many don't get to experience. But being cured is not where the work of healing ends. It's where it begins. Because no one had warned me of the challenges of reentry, I thought something must be wrong with me. On most days, I woke up feeling so sad and lost I could barely breathe. Sometimes, I even fantasized about getting sick again. And let me tell you, there are so many better things to fantasize about when you're in your 20s and recently single.

(LAUGHTER)

JAOUAD: But I missed the hospital's ecosystem. Like me, everyone in there was broken. But out here, among the living, I felt like an imposter, overwhelmed and unable to function. I also missed the sense of clarity I'd felt that my sickest. Staring your mortality straight in the eye has a way of simplifying things, of rerouting your focus to what really matters. And when I was sick, I vowed that if I survived, it had to be for something. It had to be to live a good life, an adventurous life, a meaningful one. But the question once I was cured became - how?

I was 27 years old with no job, no partner, no structure. And this time, I didn't have treatment protocols or discharge instructions to help guide my way forward. But what I did have was an inbox full of Internet messages from strangers. Over the years, people from all over the world had read my column, and they'd responded with letters, comments and emails.

RAZ: So that column, I guess, just inspired hundreds, thousands of people to write to you for a variety of reasons, either they had a similar experience or they were just moved by what you wrote or they wanted to write weird things. And I guess when you had a chance to really read those, it was like this sort of amazing archive of just different emotions and stories.

JAOUAD: Yeah. So the title of the column was "Life, Interrupted." And I think when I initially started writing it, I hoped that it might be, you know, resonant with other people with cancer or maybe other young adults with cancer. But I think people kind of read into that theme of interruption so broadly in ways that I really didn't expect, ranging from, like, a breakup to the death of a child and everything in between.

And so I found myself returning to these letters I'd received over the years and finding a great amount of comfort and solidarity in some of these letters, especially the ones that were written by people who had found themselves in similar aftermath situations of having to grapple with a new body or with a new reality or with a life after, you know, losing someone very close to them. And the more I began to think about these letters, the more I found myself wishing that I could actually meet some of these strangers and talk to them about their experiences, as I was trying to kind of process how to recover from my own. And so that's how I came up with this idea to go on a road trip.

RAZ: So you just started driving to go visit some of these people?

JAOUAD: Yeah. I spent the next three months visiting these people and really trying to take this time to reflect on what I'd been through. I stayed with a family of ranchers in rural Montana whose kids, you know, go to school in a two-room schoolhouse. I stayed with a teacher in the mountains of Ojai, Calif., who was grieving her son, who had committed suicide a few years earlier. I went to visit this inmate on death row in Texas.

And so the different places that these letters led me to were not places I ever would have discovered on my own. And in addition to being just this, like, really profound, you know, period of reckoning for my life, it was also this, like, wonderful period of discovery for me.

RAZ: It's so interesting because we were just hearing from Nora McInerny, and one of the parts of our conversation that we weren't able to include for time that she described was that, you know, after the death of her husband, Aaron, she took off.

JAOUAD: Yeah.

RAZ: She left Minneapolis with her son and just travelled, you know, for a while all over the country and visited friends and, similarly, just sort of explains how she just needed to physically kind of be away, you know, be moving, be in motion, and that somehow that helped.

JAOUAD: Yeah. I think trauma and grief can get stuck in your body. I think of it, like, this really strong, instinctual sense that I needed to not just be in motion in, like, this vague way, but actually, physically and geographically leave. I think I needed those kind of long stretches of time alone in the car or camping to actually reflect on this experience of illness and what that meant for me going forward.

RAZ: When you think about the idea of moving forward, what does that mean in the context of your life and your story?

JAOUAD: I think, for me, it's been a process of integrating who it is that I was before my diagnosis, what it is that happened during my diagnosis and who it is that I'm becoming now. You know, you don't get to put your illness in a box and leave it behind you; it's always a part of you. It's part of not just the way that my body feels and some of the struggles that I have, but also, it's part of, you know, how I navigate the world and how I think about certain things and even how I think about time, for example. So there's no way to kind of, like, excise this one thing that happened from your narrative, at least for me.

RAZ: That's Suleika Jaouad. She's the writer and author of the upcoming book, "Between Two Kingdoms." You can see her full talk at ted.com.

(SOUNDBITE OF SONG, "REBORN")

KID CUDI: (Singing) I'm so - I'm so reborn. I'm moving forward. Keep moving forward, keep moving forward. Ain't no stress on me, Lord. I'm moving forward. Keep moving forward, keep moving forward.

RAZ: OK, thanks for listening to our episode on Moving Forward this week. If you want to find out more about who was on it, go to ted.npr.org. To see hundreds more TED Talks, check out ted.com or the TED app. Our production staff here at NPR includes Jeff Rogers, Sanaz Meshkinpour, Neva Grant, Casey Herman, Rachel Faulkner, Diba Mohtasham, James Delahoussaye and J.C. Howard, with help from Daniel Shukin and Katie Monteleone. Our intern is Emmanuel Johnson.

Our partners at TED are Chris Anderson, Colin Helms, Anna Phelan and Janet Lee. I'm Guy Raz, and you've been listening to ideas worth spreading, right here on the TED Radio Hour from NPR.

(SOUNDBITE OF SONG, "REBORN")

KID CUDI: (Singing) I'm so - I'm so reborn. I'm moving forward. Keep moving forward. Transcript provided by NPR, Copyright NPR.