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Suleika Jaouad On Moving Forward After A Cancer Diagnosis

LULU GARCIA-NAVARRO, HOST:

It began with an itch. In 2010, Suleika Jaouad was 22. She'd just graduated from college, moved to France and fallen in love. It was a time of hope and excitement until the itch got worse and turned into six-hour naps, mouth sores, weight loss and ultimately a diagnosis - leukemia with a 35% chance of survival. Suleika Jaouad spent the next few years being treated for cancer and documenting it in a series of blog posts and videos for a column in The New York Times and now in her memoir "Between Two Kingdoms." And she's here to talk about it.

Suleika Jaouad, welcome to the program.

SULEIKA JAOUAD: Thank you, Lulu. I'm so happy to be here.

GARCIA-NAVARRO: It's heartbreaking to read, but you write beautifully about how cancer split your life essentially into two parts, you know, before and after. I'd like to begin with you reading a paragraph from the first morning you entered the hospital in New York City on what you call a perfect spring morning.

JAOUAD: (Reading) When I woke up in the surgical recovery room, I looked down at my bloodied chest. Protruding from a wound below my collarbone, I saw a plastic tube with three dangling lumens, like the tentacles of some abhorrent sea creature. The sight of my altered body shocked me. Up until this moment, with the exception of the mouth sores, my illness had been largely invisible. On some level, I was starting to realize that the life I'd had before was shattered, the person I'd been buried. I would never be the same. As I was wheeled back to the oncology ward, I noticed that the sign outside my hospital room read S. Jaquad, with a Q where the O should be. I was crossing over into a new land, and with every step, I was feeling less like Suleika.

GARCIA-NAVARRO: You write about how after you graduated from college, you had dreamed of being a foreign correspondent. You wanted to be a war reporter. When that was no longer possible, you started to write about your cancer. Why?

JAOUAD: Well, writing for me had always been my first love and what I leaned on as a way to kind of endure difficult passages. But it seemed hard to know what I could possibly write about now when I couldn't travel anywhere, when I couldn't interview anyone, when I couldn't even leave my room. So it really began with something my friends and family called a hundred-day project. For my mom, that meant painting a ceramic tile every day for a hundred days that she later assembled into a shield and hung above my bed and told me it had protective powers. For my dad, he wrote a hundred childhood memories that he compiled into a little booklet and gave to me.

GARCIA-NAVARRO: It's making me cry. It's beautiful.

JAOUAD: For my 100-day project, I decided to keep a journal. It could be just one sentence. Often, it was just one word, occasionally the F-word. But it gave me a sense of structure. And in that journal, I wrote about everything. I recorded snippets of overheard conversations at the nurses' coffee station. I wrote about the kind of mysterious happenings in my body. I wrote about losing my sense of self. And as I kept writing, I started to realize that even though, you know, I wasn't going to be a foreign correspondent in the way that I'd imagined, I was reporting on a very different kind of conflict zone. I was writing from the front lines of my hospital bed.

GARCIA-NAVARRO: One thing I really admired about your memoir is that it's not always a flattering portrait. You know, in fiction, in movies, there can be this sort of romanticizing of the young, beautiful, brave cancer patient.

JAOUAD: The hero's journey is, you know, one of the oldest story arcs that we have. And it's one, I think, that's especially projected onto cancer patients. There's this idea that you have to be someone who suffers well. You have to be stoic. You have to be brave. And that often did not match up with how I felt and with the incredible difficulties and challenges that came with the experience of being sick. And it felt important to really, you know, give ink to the selfishness, to the cruelty, to the fear, to the anger that can emerge when you're enduring something that feels unsurvivable.

GARCIA-NAVARRO: A lot of the book, though, is about what comes after because more than three years after your diagnosis, you were finally done with cancer. As you write, quote, "I've spent the past 1,500 days working tirelessly towards a single goal - survival. But now that I've survived, I'm realizing that I don't know how to live." How did you figure out how to live again?

JAOUAD: Yeah. You know, there's so much emphasis on a cure, and I think for me and for a lot of people, it feels like that should be the end point. But what I very quickly realized is that I'd never felt more lost. And so I began to think about different rites of passage that we have in our culture. We have birthdays and bar mitzvahs and funerals and weddings. And these ceremonies and rituals, I believe, really help us transition from one point to another. But for me, you know, I didn't have any rituals. And so I decided I would go on a road trip 'cause I thought I had to do one very important thing before I could even begin to plan my road trip, which was to learn how to drive.

GARCIA-NAVARRO: (Laughter).

JAOUAD: Exactly.

GARCIA-NAVARRO: And you travel to meet some of the people you'd connected with during your treatment. Can you tell us about one or two of the people you met along the way, briefly, and what you learned from them?

JAOUAD: I ended up driving over 15,000 miles across 33 states, and I visited roughly 22 strangers. Many of them were people who had written to me during my time in the hospital. Some of them were people who had made an impact on me. But all of them were individuals who were living in their own kind of in-between place. I went to see a family of survivalist ranchers in Montana. I visited a man by the name of Lil GQ on death row in Texas who'd written me one of the first letters I'd ever received about our shared experience of isolation. But I wanted to visit these people because I didn't really have any sort of road map for my own process of healing and moving forward. And I thought that perhaps they could offer some guidance and some insight.

GARCIA-NAVARRO: You know, I wonder if there is a lesson in your road trip for all of us after this pandemic is over because I can imagine, you know, struggling with similar feelings to what you describe in your book. Many people are feeling grateful to have survived but unsure how to move forward in the wake of such profound loss. I mean, do you have any advice? How can we live in the after?

JAOUAD: When I found myself in my own after, I was intent on moving on. I wanted to leave illness behind me. I wanted to seize this new opportunity of living that I'd been granted. But I very quickly realized that you don't get to move on from your most difficult passages. You have to learn how to move forward with them.

GARCIA-NAVARRO: We should say here you are in good health now, right?

JAOUAD: I am six years cancer-free. At the end of that road trip, I realized that the truth was I might never fully feel well but that, you know, I wasn't acutely sick. For me, once I stopped trying to slot myself into that binary, I did actually start to feel well. I feel better than I ever have.

GARCIA-NAVARRO: Suleika Jaouad - her memoir is "Between Two Kingdoms."

Thank you very much.

JAOUAD: Thank you. Transcript provided by NPR, Copyright NPR.