In 2010, Suleika Jaouad graduated from Princeton and moved to Paris with dreams of becoming a war correspondent. Soon after, she was diagnosed with acute myeloid leukemia and found herself in a very different battle zone from the one she’d imagined. “The brilliant Susan Sontag said we all have dual citizenship, in the kingdom of the sick and the kingdom of the well, and it’s only a matter of time until we use our passport to that other place,” Jaouad says. In her new memoir, Between Two Kingdoms, she tells the story of her four-year fight for survival and the 15,000-mile road trip around America she embarked on with her dog, Oscar, after she was cured.
In 2013, Jaouad won an Emmy for Life, Interrupted, a New York Times video series chronicling her illness. Her 2019 TED talk, “What almost dying taught me about living,” has garnered over four million views. During the pandemic, she founded The Isolation Journals, a global initiative with over 100,000 participants that offers community writing sessions, book club discussions, and studio visits with well-known authors and artists.
“I needed to believe that when your life has become a cage, you can loosen the bars and reclaim your freedom,” Jaouad writes in her memoir. She spoke with me over Zoom from her rural New Jersey home about how she’s succeeded in doing this, and we explored the connection between Buddhist principles and her harrowing journey back to the kingdom of the well.
You often say that you’re “exploring the in-between places.” How does this relate to your illness and recovery? When I emerged from cancer treatment, I expected I would quickly and organically find my place among the living again. Survival had been the goal for the better half of my twenties, and I expected to feel grateful and excited and to have a sense of closure. Instead, I felt incredibly lost. I found myself in a liminal place: I couldn’t return to the life I’d had, but the way forward was unclear. That in-between place felt like a wilderness of survivorship. What made it particularly challenging is that we project the hero’s journey narrative arc onto survivors—especially cancer patients. After surviving the unimaginable, you’re expected to go forward better and braver and wiser. A strange code of silence is created around the hardships of navigating the aftermath of an experience like this.
In Tibetan Buddhism, bardo is an “in-between state.” The journey from death to rebirth is a bardo, and from birth to death is another; other bardos include times when we’re ill or have an accident. Some years ago I was hospitalized with a life-threatening disease and, staring at the white ceiling of my room, I recalled a story about my Tibetan great-grandfather. One morning in Tibet, he was buried in an avalanche. Praying to Guru Rinpoche—the Indian spiritual master who wrote The Tibetan Book of the Dead, a guide to traveling through bardo—he thrust his hand up through the snow, and the men aboveground pulled him out. The central lesson of his story, and of The Tibetan Book of the Dead, is to accept reality but not give up. Does this resonate? It resonates so deeply. I have my reading and research cut out for the weekend! I’m intrigued and excited to learn more about bardo.
In that first year out of treatment, I was fixated on moving on. Within a couple of months, I arrived at the conclusion that moving on is a myth. It’s exactly what you were just describing: an attempt to compartmentalize the most painful passages of your past, to leave them behind and skip over the work of grieving and healing and reckoning. I needed to figure out how to integrate what had happened into my present. To accept that reentry wasn’t what I’d imagined, and let go of the shame I felt around how difficult it was. Of the ten young cancer comrades I befriended while I was ill, only three of us survived. I felt survivor’s guilt, that I should be grateful to be experiencing the challenges of reentry. I couldn’t talk about it with my family because I’d already put them through so much. I couldn’t talk about it with my medical team, because they were focused on curing cancer. I couldn’t talk about it with my crew of friends because I didn’t want to sound insensitive, especially to the ones who were still in treatment or might never be cured. Once I was able to accept that, I began to look to the language of ritual, to rites of passage like funerals and weddings and bar mitzvahs, the ceremonies that allow us to shoulder complicated feelings and move forward.
Do you still feel some of the difficulty of making that transition? I’m still in that between-place. I struggle with the long-term side effects of my treatment. I spend a lot of my day horizontal, working in bursts because of fatigue. But in other ways, the struggle does feel behind me. I don’t think about illness every day, which was unimaginable even just a few years ago.
You say in Between Two Kingdoms that writing saved you. In what way? I do two kinds of writing. One is the writing I do in the privacy of my journal. The journal is an expansive, liberating space where you get to show up as your most unedited, unrevised self and do some untangling; where the stakes are low. You’re not writing for a public, you’re writing for yourself. That practice of writing without the anxiety of accomplishment or needing to write beautiful sentences saved me. It provided the space to give ink to the isolation and the frustration, the anger and heartbreak. It offered a measure of narrative control at a time in my life when I had to cede so much control to my illness.
What was writing your book like for you? The first part was hard because of recounting my illness and the losses that came with it, yet it was also a great joy to write. I knew what the scenes were, what I wanted to say, and beyond that, I got to live in this world with these people, many of whom are no longer alive. I looked forward to waking up in the morning and bringing those memories to life. The most challenging part came in the second part of the book when I struggled to figure out how to write about recovery and reentry. There was no neat narrative arc or resolution. I was trying to write in the past tense, as in the first part, and it felt like I was forcing a measure of distance I didn’t have. When I realized I could switch to the present tense midway through the book, that broke open the writing because I was still living recovery and reentry.
You say in your book, “To learn to swim in the ocean of not-knowing—this is my constant work.” This relates to the Buddhist concept of beginner’s mind, of being awake to the present and embracing uncertainty. How do you deal with not-knowing? In moments of upheaval and uncertainty, there’s clarity and knowledge and perspective to be gained, but we have to live into those possibilities. That’s how I wade through the uncertainty without it becoming anxiety. I try to pay attention to it and to where it’s leading me and what questions are rising to the surface. I get very quiet and still when I’m in a state of high uncertainty. I take the time to be with myself, with my thoughts, and see what can be learned even though not-knowing often feels uncomfortable and painful. It’s a muscle that I’m always exercising and building as I figure out how to moor myself.
One of the most powerful aspects of the bardo concept is that we create our experience as we travel in “the between.” We’re artists of our lives, fashioning our experience through our choices and actions, just like my great-grandfather did when he was buried in the snow. I’m reminded of a line from Viktor Frankl, who was a psychoanalyst and survived the Holocaust camps. He talks about how between stimulus and response there’s a space, and that space is our power to choose our response. In our response lies our growth and our freedom. Just because life breaks us at moments doesn’t mean we automatically get stronger. There are many choices made between the break and what we make of the break.
“In moments of upheaval and uncertainty, there’s clarity, knowledge, and perspective to be gained, but we have to live into those possibilities.”
When I was sick, I spent a lot of time researching artists and writers who were bedridden for a large part of their lives. I looked to Frida Kahlo, who had a streetcar accident when she was young and suffered injuries that left her bedridden. In that space of confinement, she began painting the self-portraits that made her one of the most famous artists of all time. I was inspired by the way she interrogated that experience of physical, spiritual, and psychic pain. There are so many other examples—Matisse, Proust, Virginia Woolf, Roald Dahl—of artists who’ve written about how being in bardo, as you say, invites you to convert your isolation into a creative exploration and a creative solitude. One of the biggest lessons I learned during my season of illness is that survival becomes a creative act.
In your TED talk, where you share the lessons that nearly dying taught you about living, you discuss impermanence. You say, “Every single one of us will have our life interrupted, whether it’s by the rip cord of a diagnosis or some other kind of heartbreak or trauma that brings us to the floor.” Even though impermanence is an inescapable fact of life, we tend to be in denial about it. How has your relationship to impermanence changed? Like a lot of young people, I felt I had time. Time to figure out who I was, time to find what I wanted to do with my life and take the steps to get there. But when I received my diagnosis, my doctors told me I had about a 35 percent chance of long-term survival. That first summer in the hospital, after a grueling six weeks in a small white room with fluorescent overheads that I wasn’t allowed to leave, I learned that the standard chemotherapy treatments had not worked and that my leukemia had become much, much more aggressive. I was going to need to enroll in a clinical trial and eventually have a bone marrow transplant, which is its own very risky procedure. So impermanence came clearly into view for me. I began to focus on what felt meaningful now that everything had been stripped away. I was focused on a gentler approach, following my curiosity and intuition, without worrying about the outcome. At a school like Princeton, there’s this anxiety of accomplishment, of milestones and having a career trajectory. A sense that you need to have your five-year plan and your ten-year plan and your fifteen-year plan. Staring my mortality straight in the eye removed any illusion of being able to plan, which was strangely liberating.
How does the future look to you now? A life-threatening illness pins you to the present. Being sick made me feel like a second-class citizen in the land of time. Time came to a halt and felt like a waiting room: waiting for biopsy results, waiting in the doctor’s office. Waiting for better days. I couldn’t dwell on the past because it reminded me of all the things I could no longer do, the plans and dreams that had vanished. And thinking about the future was frightening because I didn’t know if I would exist in that future. So I began to think in week-long increments, month-long increments, eventually hundred-day increments. That was as far ahead as I felt comfortable making plans. I knew that, as Joan Didion writes, life can change in the ordinary instant, and I had a high chance of relapse. Any bruise, any day where I felt exceptionally fatigued, immediately brought that possibility back to the surface. I still have a difficult time imagining myself in old age. I think of my future in terms of whatever project is on my desk—whether that’s building a garden at my new home or this next book project. For committing to projects, I’ve graduated from thinking in hundred-day increments to thinking in six-month increments, which feels like progress.
In the hospital, you dreamed of white sandy beaches. What do you dream of these days? Carving out space and time to just be home. If you were to interview my friends and family, they’d tell you I work too much, and that’s true. But what I dream, and what I hope for myself, is that I can create a sense of home and self-value that’s not rooted in work. That allows for more ease, a less structured way of living and being, and anchoring myself. Simple joys like walking my dogs in the woods by my house or gardening.
Lately I’ve been thinking about what a challenge it is to slow down. I’ll plan to go to a coffee shop with a book, or take my dog to the park, but then I get caught up in work. Have you developed strategies to shift toward a more easeful way of living? It’s a constant work in progress. I am a work in progress! But during the pandemic I formed a small quarantine pod with a fellow author, Elizabeth Gilbert, who lives nearby. We began a daily ritual of meeting in my backyard and doing a breathing meditation for about 35 minutes, then cold-plunging in the swimming hole by my house. It was already difficult, and in October it became even harder. By January, our swimming hole was more like an ice-skating rink. But forming those rituals and holding to them has been my first step toward attaining balance.
“A to-feel list speaks not to what I want to accomplish that day or that week but to what I want to feel.”
Is it hard to tear yourself away from work to meditate and jump in the swimming hole? It’s hard and I look forward to it. Another thing I’ve been doing, in my journaling practice, is before I write my to-do list, I write a to-feel list.
What’s a to-feel list? A list that speaks not to what I want to accomplish that day or that week but to what I want to feel. It helps me reorganize my priorities and do what I need to do to feel the feelings on my list.
I like the idea of putting “to-feel” before “to-do.” Otherwise you can feel disembodied, like you’re just plowing through tasks. When I fill my days with a never-ending list of to-do’s, I’m not living into the possibilities of prioritizing how I feel. I end the day feeling spent and like a shell of a human being. During the clinical trial, which was especially physically harrowing, I thought, “If I survive this, it has to be for something. It has to be to live a good life, a meaningful life, a happy one.” I think about that all the time.