“Freedom,” she writes, “was going solo to chemo. It was the realization that I was in this alone.”
Jaouad’s book, an affecting story of one spirited (and gifted, and astoundingly generous) young woman’s coming of age, is especially timely — sad, scary, frank, funny, profound — in the wake of current events that have isolated us all, thereby challenging our ideas about the responsibilities of freedom as they inform our relationships with family, friends, lovers, community, and especially ourselves.
Earlier in the book, her future uncertain, Jaouad tells us, “I decided to reimagine my survival as a creative act.” And that’s what she did, beginning a decade ago as one of the youngest columnists ever to be featured in The New York Times. So, of course, I had to ask about that.
DINAH LENNEY: You’ve shaped this story, subtitled “A Memoir of a Life Interrupted,” almost from the beginning — in real time and pretty much without interruption — will you say more about that, please?
SULEIKA JAOUAD: My natural inclination is to examine and observe. I’ve kept a journal from the time that I was old enough to hold a pen, recording snippets of conversations, details, memories, and ideas.
Then, at 22, I was diagnosed with leukemia. For the first half of my 20s illness was omnipresent, and it became my subject matter.
For The New York Times, no less. But did you, back then, imagine a book? Was it this book?
I fantasized about writing books; of course, it’s one thing to dream, another to do, and I never imagined myself as a memoirist. I was far more interested in reading and writing fiction, and I thought of journalism as something that might make for a good day job, which — given that I graduated not long after the Great Recession — was wildly naïve.
While I was writing the Times column, “Life, Interrupted,” I toyed with the idea of compiling those vignettes into an essay collection. But intuitively, I felt a resistance to that prospect. I had found the answers I needed through that particular form.
But when I emerged from treatment, I got the opportunity to interview Cheryl Strayed. One thing in particular stayed with me long after our conversation ended. I told her I wanted to write a book, but not about cancer — in fact, I was desperate to write about anything else. And she gave me some pretty great advice: That I should write the story that I needed to write, and I had no business trying to avoid it.
In the meantime, you acquired some celebrity. Did you anticipate that happening?
I’ve never been interested in writing about my life for the sake of writing about my own life. I think of myself as a private person, and I don’t share things impulsively (or compulsively). I’m a listener and a question-asker, and I generally find other people’s lives far more interesting than my own. But by telling the unvarnished truth of that experience from the trenches — like finding out that chemo would leave me infertile via a Google search — I became an unwitting advocate. That’s the power of writing difficult truths.
In theory, I understood that the column and the accompanying video series would give me a level of exposure I had never experienced. But because I was isolated in a bubble in my hospital room, so removed from the world outside my window, it didn’t fully feel real. I drafted the first 13 columns in advance of my transplant, which I had a 35 percent chance of surviving. I didn’t know if I would live to see the columns published; I only knew that I needed to write them. I was focused on the work, I was focused on surviving, and I couldn’t think that far ahead. In fact, the future was actually quite a scary place.
And how did this advocacy — and your public persona — affect your family? How did they feel about all the attention?
This was complicated for them. They were dealing with their private fears and profound worry about my health and what was going to happen, while also being thrust into a strange and understandably unwanted limelight. I never wrote anything that implicated them without checking first, and we definitely had difficult conversations. They were supportive, but they also felt protective. They didn’t want a news platform to package our lives into a pat story arc where the life-or-death stakes became narrative suspense for an audience of strangers. But quickly, they saw the impact of the column, not just in terms of offering some spark of recognition and solace to those affected by illness, but as a way to build awareness for everyone from health-care workers to the pharmaceutical companies that made my clinical trial drugs. It was igniting a very real, very necessary conversation about how we provide care and how we can do it better.
But to be having that conversation in the middle of treatment. And without a clear sense of the future. Did it ever feel like too much?
When the first column went live, and I woke up to an inbox with hundreds of emails from strangers, I was overwhelmed, yes. But I read every single one of them. It was a portal to the world and also into all these people’s lives. For the first time in a long time, I felt a sense of connection. I heard from a man who was in the hospital room next door. Because of our nonexistent immune systems, we were confined to our rooms, but one day I had to get a brain MRI, and when they wheeled me past his door, I knocked on the window and waved.
I love that. But to think of you getting all this done in the hospital — producing the column and the video series while you were sick. It’s difficult to fathom. What about downtime? What books (art, films, music) kept you going?
Ah! So many! I read and reread Lucy Grealy’s Autobiography of a Face. It was my sick girl Bible and still is. Same with The Diary of Frida Kahlo, Audre Lorde’s The Cancer Journals, and Sarah Manguso’s The Two Kinds of Decay. I will also cop to escaping into Fifty Shades of Grey while recovering from my transplant and setting the world record for number of Grey’s Anatomy episodes watched consecutively.
(I’m laughing.) And what about your ongoing relationship with music?
I’m a classically trained double bassist, and though I didn’t choose that as a career path, music is a kind of vital nutrient for me. I listened to a lot of Mahler symphonies and a lot of James Brown, and my now-partner Jon Batiste — then just an old friend — brought his band to the hospital and performed some old gospel and blues tunes right there in my room.
And now: Jon is a musician and seems to bring home a new instrument to learn every day, so there’s always some tune bouncing around the walls of our house. I also love to drive to music, which I started doing on the road trip I write about in the book.
Do you also write to music? Or do you continue to make music yourself, and does that feed the writing?
I do work to music, though it has to be instrumental, gentle, and dreamy, like Bach’s cello sonatas or Erik Satie’s Gymnopédies.
But I stopped playing the double bass when I was sick. It’s a cumbersome instrument to say the least, and it requires a physicality that I didn't possess. Recently, though, I dusted off my bass, and Jon and I composed and performed the music for the audiobook of Between Two Kingdoms. I was more than a little rusty, so we had to record quite a few takes, but it was a beautifully sweet closing ritual to writing the book — this last creative element that brought me back to the very beginning.
I can’t wait to listen. And a closing ritual — what a good idea. (We should all have one of those.) Still, it can be hard to let go. I’m wondering if there’s anything you had to leave out of Between Two Kingdoms. And if so, does that trouble you?
At some point in the process, I started sending sections to my friend and mentor, the brilliant writer Melissa Febos. One was a 60-page chapter that I found excruciating to write because I was worried it might be hurtful to someone in my life. I told Melissa this, and she said, “If you’re going to include it, you have to have a conversation with them. But in the meantime, keep writing.” When I got to the end, just before the complete manuscript was due, Melissa asked me if I’d had that tough conversation. I told her I hadn’t been able to. Her response was straightforward. She said, “Then cut it.”
And so I did, and to my great astonishment, nobody noticed. Not my agent, not my editor, none of my early readers. That taught me an important lesson: that there are some stories that take up space, and to push them to the side, you have to write through them, whether they end up making it into the book or not.
Agreed. Also true that readers generally don’t miss what isn’t there, do they — do we? Speaking of which, what are you reading these days? What’s on your list?
So much of what I’ve been reading in the last few years has been nonfiction that lives in the blurred boundary between memoir and reportage, because that’s what I myself was working on. Now, after a long reading drought that I blame on the pandemic —
And the work of publishing and recording and promoting a first book; and starting up the Isolation Journals (which I’ll ask you about in a moment) —
Well, yes. But now I have a stack of delicious novels on my bedside table. I’ve also just joined a book club with a handful of writer pals, and the first title up is Ross Gay’s The Book of Delights.
Perfect. That book has a spot on my night table, too, into perpetuity. (I can’t wait to talk about it with you, especially Chapter 36, “Donny Hathaway on Pandora.”) But Suleika, a book club, on top of everything else. Going forward — can you keep up this pace? Do you want to? Does it leave you time for your own work?
All very excellent questions that I unpack with my therapist twice a week!
It’s hard for me to separate out my life and my work — it’s all so intertwined. I almost never start something with a plan. I pursue a project because it answers some question I’m grappling with in my own life, or because I recognize that it could meet some kind of greater need. There are times when it becomes all-consuming, because of course there’s more to be done than one human can do. But that’s the only way I know how to be. I’ll keep going, like a dog with a bone, gnawing at something as long as there seems to be more meat, more marrow. Then, once I feel like I’ve learned or contributed all that I can, it’s time to move on.
Well, okay then: say a bit about your current projects, please — starting with the Isolation Journals.
The Isolation Journals is a community creativity project conceived in the early days of COVID-19, which over 100,000 people from more than 100 countries joined. It began as a month-long initiative to get people writing and reading together, but with the ongoingness of the pandemic, and knowing that loneliness is increasingly a feature of modern life, we’re still doing whatever we can to help people transform isolation into creative solitude and connection.
As for my next book, I’m in the tentative early stages of working on something. The timing isn’t actually great, but when a story appears, it appears. And so, I’m diving in.
Good for you. Who’s to say when we’ll ever get our timing back — this whole stay-at-home year has been such a big blur. But you tell me: As acquainted as you already were with physical and emotional quarantine, how has the pandemic affected your day-to-day life?
Differently from most, I think. Whereas isolation and limitation were new to many, it was a familiar landscape for me. In fact, it even felt weirdly comfortable — like, “This I know how to do.” But of course, it’s scary. Because I’m immunocompromised, I feel a degree of hypervigilance, and I feel heartbroken to see so much grieving and suffering, to have people close to me get sick and even die.
In spite of which, you’ve continued to work to keep the rest of us going. So who and what keeps you going?
Well — I haven’t missed cocktail parties or getting on planes or even going out to dinner. I haven’t missed the unthinking flurry of activity. There’s a centering clarity when choice is removed and my days are stripped down to just the essentials. My quaranpod has sustained me, and also our community at the Isolation Journals. But most of all, I’ve been hanging out with my dogs, who are thrilled to have me at their 24/7 beck and call. Once the pandemic is, inshallah, over, I hope we can retain some of this simplicity, rather than reverting to the old, ever-present grind.
Dinah Lenney is the author of Coffee and an editor-at-large for LARB.