The founder of Isolation Journals and writer of Between Two Kingdoms shares her story
After college, Suleika Jaouad aspired to be a war correspondent. She took a new job in Paris, ready for seemingly infinite possibilities.
But just a few months later she was diagnosed with an aggressive form of leukemia and was given a 35% chance of survival. It took another four years before Jaouad was declared cancer-free. Jaouad says that’s when her healing process really began. “I had to learn how to find my footing among the living again,” she said.
“There’s such a big focus on finding a cure, or as a patient getting to that point where you’re cured,” she added. “But in my opinion, that’s not where the work of healing ends, it’s actually where it begins.”
Throughout her cancer battle, she kept a journal, which helped her with the myriad feelings she was experiencing and eventually inspired the creation of her New York Times column, “Life Interrupted,” and the Isolation Journals, a community journaling project for people during the pandemic. April 1 marks the community’s one-year anniversary.
Most recently, Jaouad released her memoir, documenting her experiences coping with her cancer diagnosis and recovery, called Between Two Kingdoms.
KCM sat down with Jaouad for a wide-ranging conversation about what sickness really means — and she gave some advice for anyone struggling to grapple with returning to “normalcy” after a year that’s changed us all.
KCM: What might surprise readers who are reading your story for the first time in the book? Could you describe what it was like to receive this awful diagnosis at such a formative period of your life?
Suleika Jaouad: I was 22. I had recently graduated from college and had gotten a job in Paris as a paralegal. Like a lot of recent graduates, I felt like the future just infinite with possibilities. It felt like I had so much time to explore and to figure out who I was and what I wanted to do in the world. Several short months after moving to Paris, I got very sick. My diagnosis was one of those moments in life where I felt a huge rupture. There was my life before and everything that came after. It was such a disorienting realization that in fact, I did not have infinite time, that none of us do. It really forced me to rethink my priorities and get very specific about what I wanted to do and who I wanted to spend time with.
My book is about my experience with cancer, but it’s really about the life interruptions that we all face, whether that be illness or some other kind of heartbreak, that brings us to the floor. It’s about learning to live again in the aftermath. I think that’s something that we’re all preparing to do now almost a year into the pandemic and reaching these tentative steps toward re-entry, but also realizing that our lives are very different and we’re very different because of it.
So you started the Isolation Journals project during the pandemic, but you’ve been writing for a long time. How did writing help you through your cancer battle and how can it help others?
Journaling is an ideal way to convert isolation into creative solitude. So pretty much from the time I was old enough to hold a pen, I’ve been journaling. A journal is this very rare space where we get to do writing that doesn’t count. It’s low stakes. It’s not for public consumption, and we get to show up as our most unedited selves. It’s really where I make sense of things, where I explore, where I play and figure things out. After I got sick, one of my biggest frustrations was figuring out what I could do within my limitations, within the confines and isolation of a hospital room. My life pre-diagnosis no longer really made sense in the context of this new reality.
I couldn’t become a foreign correspondent. I couldn’t see friends and go to parties and experience the other milestones of early adulthood. So I returned to journaling and it became a part of a 100-day project that I did with my friends and family. The concept was simple: We each did one creative act every day for 100 days. My dad wrote down a hundred childhood memories that he made into a little booklet. My mom painted a ceramic tile every day that she assembled into a shield and hung it above my bed. She told me it had protective powers. For my project, I decided I was going to journal every day. It didn’t matter if it was good. Sometimes it was just a few sentences or one word.
What were the main things you wrote about?
I was able to reflect on my illness in a new way. I almost used my journal as a reporter’s notebook. I’d record little snippets of overheard conversations from the nurses. I wrote about the physical changes in my body. I wrote about the imprints of illness on my family, on my relationships. Even though I wasn’t a foreign correspondent, in a way, I was writing from the front lines of a very different kind of conflict zone. By the end, I felt like I’d really found my voice for the first time. I realized I had a huge body of work and that journal became a source of material for my NYT column, “Life Interrupted.” Survival for me felt like a creative act. Journaling was this way to convert isolation into creative solitude.
How did journaling help you post-recovery? In your book, you write about a road trip you took after the cancer was gone, what did you learn along the way?
When you emerge from a traumatic experience like cancer, everyone congratulates you on being done and finally cured. There’s this expectation that you should feel excited and ready to fold back into the rhythms of life. But that wasn’t true for me. I finished cancer treatment and I honestly never felt more lost. I had no idea who I was. I was kind of carrying all the records of those years spent in treatment. I didn’t even really know what kind of job I could hold when I still needed to nap for four hours in the middle of the day. So I knew that I needed to carve out some time to reflect on what had happened and to figure out where I wanted to go next.
For me, the road trip was a right of passage. It was a sort of ritual to honor that space between no longer and not yet. I went on on this 15,000-mile trek around the U.S. and I ended up visiting some of the strangers who I corresponded with when I was sick, who were learning to live again in the aftermath of their own life interruptions. That combination of solitude, and the conversations with people who had lived some version of what I lived through in very different circumstances and contexts, really helped me understand that you can’t move forward from the past. You can only move forward with it.
Could you describe the analogy the “two kingdoms” from your book title?
The brilliant Susan Sontag wrote about how we all have dual citizenship in the kingdom of the sick and in the kingdom of the well. After I was done with treatment, you know, on paper, I was better. I no longer had cancer, but the truth was that I felt so far from being well and I found myself suspended in this kind of limbo. What I realized on that road trip was that I was striving for some perfect state of wellness, like trying to return to the healthy person I’d been. I had to kind of learn to live in that messy middle place because even though I didn’t have cancer anymore, I still carried the imprints of that in my body.
I still had a compromised immune system. I still struggled with fatigue. I still grieved my friends, my fellow cancer patients who I had befriended in treatment. I think the truth is most of us don’t fit neatly into that binary depending on the day or what we’re up against. Most of us kind of move between those two kingdoms, living much of our lives somewhere between the two.
What do you think is wrong with society’s definition of wellness?
We see this narrative all the time in books and movies where the kind of final act is survival. It’s being cured. But we’re missing a whole other part of the story, which is what happens after, the hard work of recovery and re-entry. I very quickly realized there’s a big difference between surviving and living. And after spending four years in cancer treatment, I learned all kinds of survival skills that were no longer appropriate.
I wonder why that narrative is just left out. Why were you just expected to just, “be OK,” and get back into the world of living after you’d gone through this?
I think illness is uncomfortable. We don’t like to be reminded of our mortality. Part of it is voluntary, right? When you’ve lived through something difficult, and you emerged from that, everyone wants it to be over. They want you to be better. But it’s a slower process than you think. The same is true with grief. You know, grief is not like a linear process, it’s something that comes in waves and it’s ongoing. I also think we just struggle with stories that don’t have neat resolutions or endings.
A lot of people have experienced major life interruptions this year and we’re just starting to see the end to the pandemic on the horizon. What advice would you give people as we enter this new period?
I think my biggest advice is that we need to accept that this is going to be a slow ongoing process. Instead of focusing on the ways in which this is not happening as quickly or as efficiently as we hoped, we need to focus on what we want to carry forward from this experience, what we’ve learned about ourselves and this year of isolation.
I also think when our lives are upended, we have an opportunity to reimagine the way our life looks like moving forward. Maybe a road trip isn’t a possibility. But I suggest that we all kind of carve out time to reconsider, not just who we are, but who we want to be and how we want to live going forward.
This interview was edited and condensed.
Reported and written by Amanda Svachula.