Suleika Jaouad on vulnerability, isolation and writing about the “in-between places”

Suleika Jaouad was 22 when she was diagnosed with leukaemia. For the next five years, she battled not just cancer but soul-crushing isolation as her treatment in a New York City hospital wore on and she was given just 35 percent chance of survival.

The American writer, who was born to a Tunisian father and Swiss mother, began journaling every single day through words and photos about the life of a young adult battling a mortal illness. The journal eventually became an Emmy Award-winning column ‘Life, Interrupted’ in the New York Times, and reached millions of readers many of whom wrote to her of their own personal struggles.

Once ‘released’ from her medical prison at the age of 27, Suleika set out on a 100-day project, driving across America to meet some of the strangers who had written to her while she was in hospital. She also gave a TED talk in 2019, which has garnered over five million views. The culmination of it all was the book Between Two Kingdoms: What Almost Dying Taught Me About Living (Bantam Press, 2021), which is out in paperback this month.

Praised as “a work of breathtaking creativity and heart-stopping humanity” by the author of Eat, Pray, Love Elizabeth Gilbert, Suleika’s touching, beautiful memoir chronicles her thoughts, life events and inner growth through her diagnosis and treatments with candid self-reflection.

It includes memorable encounters, including those with Quintin Jones, a young Texan who was sentenced to death row for murdering his great-aunt, but who was remorseful later and wrote to Suleika about relating to her feelings about mortality and sense of imprisonment.  

The reader follows Suleika across America as she travels in a yellow van with her dog Oscar, and gets intimate glimpses into her first relationship with ‘Will’, which eventually falls apart under the weight of cancer. The book ends when she finds lasting love with musician Jon Batiste.

Now 33, the globally renowned motivational speaker and columnist is back in hospital for chemotherapy, one of many such painful and difficult journeys she’s had to make in the past decade. She runs the Isolation Journals, where she reports from the “in-between” places, as she puts it, “travelling to where the silence is”. It is a community creativity project that she founded during the Covid-19 pandemic to “help others convert isolation into artistic solitude” and now has over 1 lakh followers.

Suleika was kind enough to respond to my questions over email despite her medical constraints and professional commitments. In this interview, she talks about what writing the book changed for her, about her relationships, spiritual practice, and how vulnerability makes one a magnet for others who can relate.

How different was the response to your book Between Two Kingdoms compared with your NY Times column, and what has been the most heartening response to the book so far? How have things changed for you after the book came out?

To be read is a privilege, not one I take lightly. I’ve been lucky with both my column and my book to have gotten such tremendously warm and generous responses. I’m heartened and moved to see the outpouring of support, and also to get notes from readers about how Between Two Kingdoms has affected their lives and helped them make sense of their own life interruptions. 

If I had to pick one response as the most heartening, it would be an email I received in February last year, from a woman who was a fellow at the hospital where I received my treatment during that first summer after my leukaemia diagnosis. She remembered me and the room I was confined to, and the pictures I had put up to brighten the drab walls. She remembered visiting me on most days of that first terrible month, as test results came back and showed the chemo wasn’t working. “My heart ached for you and how your life changed so dramatically,” she wrote

A decade later, she still refuses to harden herself, to build barriers between her work and her patients. “As physicians we need to understand beyond how to review labs and select treatments,” she wrote. “I deeply mourn for the patients and families who I have lost. My hopes run high when I open the lab reports and PET scan reports for my patients, and the sadness cuts deep when treatments aren’t working.”

I don’t know that my life has changed dramatically since Between Two Kingdoms, but I think the biggest thing that publishing the book has made me realise is that I want to keep writing books, to keep travelling and teaching and telling stories. I always thought I jumped haphazardly between different interests, but the book has taught me that there’s a throughline in all of my work. I’ve realised that this is my beat: writing from the in-between place, the people and topics that elude easy categorisation.

It’s also had me reflecting on the term “thick skin,” and how we often think of it as a good thing. I’m a pretty sensitive person, and at times I wish I was more callous against the difficulties of the world. But staying open and allowing yourself to be vulnerable is a kind of magnet. It draws other people toward you, and they respond with the same honesty, the same vulnerability. It’s call and response, reverberation begetting reverberation. 

One of the top searches for Suleika Jaouad on Google (at least in my part of the world) is “Suleika Jaouad and Will”. What has life taught you about love and romance as compared with the popular notion of fairy-tale endings?

As much as we want either happy endings or a satisfying sense of closure in the aftermath of a relationship, that’s not real life. You can’t always reach a mutual resolution or hold some kumbaya, goodbye-and-godspeed peace summit. One of the most difficult but common aspects of the human experience is learning to live with the messiness and being okay with it and finding your own private sense of closure.

Do you follow any spiritual practice and can you share how it has affected you?

My father was raised Muslim and my mother Catholic, so I grew up with a great appreciation and respect for different religions, though I have never practised one myself. My spiritual practice takes place in nature and in the privacy of my journal – two places that have always called to me and that I try to spend as much time in as I can.

The first thing I do each morning is wake up and walk my dogs in the woods, then I write. It’s a way of centering myself that feels like a kind of prayer – reflective, meditative, grounding, peaceful. It brings me home to myself.

You’ve been so authentic and even compassionately self-critical at times in your recounting of your journey. How are you able to look back with such objectivity at yourself, and what are the lessons in that for others – regardless of their health status or age?

I’m a big believer that if you write memoir, you must save the sharpest knives for yourself. You have to accept that you are not a saint or a victim, and very rarely is there a true villain. Seeking out the dimensionality – of a person or a situation or a story – erases any sense of self-righteousness. It loosens the bonds of ego, allowing you to see and to tell the unvarnished truth.

What is on the top of your mind on most mornings when you wake up and at night before you sleep?

For a long time, I woke up preemptively anxious about all the things on my to-do list – and I would go to bed with low-grade stress about how I hadn’t completed them all. Recently I’ve adopted a new mantra: Honour your nervous system. (I even had a sweatshirt made with the acronym HYNS embroidered across it.) I’m doing my best to start and end my day with these words in mind, and it’s working wonders.

What books are you reading these days?

How Beautiful We Were by Imbolo Mbue and A Swim in the Pond by George Saunders

How has the fight for Quintin Jones changed you, and what has it taught you about justice, humanity, racism and the law?

Knowing Quin was one of the greatest honours of my life. Aside from the obvious issues of mass incarceration and systemic racism, and the way that infiltrates and affects the application of the law – issues that have been covered by far more knowledgeable voices than mine – the thing I keep coming back to is that we’re all deserving of mercy. No matter the past, we all contain the possibility of redemption, of altering the course of our becoming. 

During my last phone call with Quin, only minutes before he was executed, he told me he was sad but so grateful that his story had touched those who didn’t even know they needed to be touched. He hoped people would pick up the pebble and throw it into the next pond, and let it ripple out. His last words, to me, to all of us: “Keep doing the good work.”

How are the dogs doing?

Rescuing a dog was hands-down the best decision I made in my twenties. In addition to my road-dog and long-time companion Oscar, we recently rescued a second pup: a blind hound dog mix named Loulou. For a minute I was thinking about getting a third, but my partner Jon threatened divorce.

Update: Since this interview, Suleika’s first dog Oscar passed away due to cancer in late February while she herself was in chemo. The news was broken by Elizabeth Gilbert in the Isolation Journals. Subscribe here.

Syndicated to Money Control