Interrupted, Again: Suleika Jaouad on Cancer and Healing the Second Time Around

Interrupted, Again: Suleika Jaouad on Cancer and Healing the Second Time Around

Tara
Author
Tara
Author

Tara Parker-Pope

Today at 1:07 AM

The popular writer of The New York Time's “Life, Interrupted” column shares an update on her health and discusses how creativity and connection help her cope with life’s challenges.

In 2012, I asked a young writer named Suleika Jaouad to write the weekly “Life, Interrupted” column for The Times, about living with cancer in her early 20s after being diagnosed with an aggressive form of leukemia. The column captivated readers for more than two years, and a video series by the same name was honored with an Emmy Award in 2013.

Suleika is now 33 and the best-selling author of “Between Two Kingdoms: A Memoir of a Life Interrupted,” which just came out in paperback. She lives with her longtime partner, the musician Jon Batiste, whom she first met when she was 13 at band camp in Saratoga Springs, N.Y. She’s also nearing the two-year anniversary of her newsletter, The Isolation Journals, which offers advice, essays and writing prompts to a community of more than 100,000 people.

In December, Suleika shared with those readers that the leukemia had returned. It was devastating news for Suleika and all of those who love her, but as usual she has continued to focus her energy on gratitude, connection and the healing powers of creativity. I’m grateful that Suleika agreed to chat with me this week, via email, a few days after leaving the hospital. Read an edited version of our conversation below.

T.P.P.: How are you? Can you give us an update on your health?

S.J.: “How are you?” The most commonly asked question and the hardest to answer honestly.

I just spent five weeks in the hospital, undergoing a second bone-marrow transplant, and if I’m honest it’s been harrowing. I was in the hospital longer, I had more complications (than the first time) and I experienced some of the worst physical pain of my life. But I also feel continuously amazed and grateful. Half of my family lives in Tunisia, where access to this kind of medical care doesn’t exist. That I have access to top-notch treatments, that I was able to have a transplant at all, that I get to be surrounded by the most caring, supportive doctors, nurses and hospital workers is an extraordinary gift.

I’m home, finally, but still have a long way to go. I’m very weak and am having trouble getting around. I just got my first walker at the ripe old age of 33. I’m currently trying to come up with a name for her, and I’ve borrowed a friend’s hot glue gun, secured a rhinestone hookup and have big plans to bedazzle her this weekend.

T.P.P.: How does this second experience with cancer compare with your first?

S.J.: I’ve been saying it like this: The good thing is, I knew a lot going into this. The bad thing is, I knew a lot going into this.

In a way, I was blissfully ignorant the first time. Now I know maybe too much about my disease — about the statistics associated with relapse, the complications and the treatment’s side effects, the prognosis. Also about the spiritual, psychological and emotional suffering a life-threatening illness can inflict, not just on the patient but on the entire family. So I think it’s safe to say I re-entered treatment with a lot of fear, both for the short term and the long term.

But it’s also true that so much has changed for the better in the decade since I was first diagnosed. This time, I’m on a new chemo regimen with a drug that didn’t exist even a few years ago. It got me into remission in one month, as opposed to last time, when it took almost a year.

I feel a sense of purpose I didn’t when I was 22 and totally adrift. I don’t feel the need to prove my independence. Instead of feeling frustrated or infantilized by my parents, who are back to being my full-time caregivers, I feel grateful to them. To have loved ones show up in your hour of greatest need — it’s the moment of accountability that all relationships arc toward, but it’s also a real privilege.

The other thing I know to be crucial is cultivating community in times like these. Because of Omicron, I was extremely limited in terms of visitors: For the most part, I saw only my parents, my brother and Jon. But, still, there's a vibrant community to be found within a hospital — it makes the long stay not just bearable but also fun and nourishing. It was bittersweet to leave behind Christina, the nurse who came to my room and played a superfast version of Scrabble with me on her breaks, or Chandra, who was on the cleaning crew and who by the end of my stay would take half an hour to clean the floors so we could share stories.

When I was finally discharged, they all gathered and gave me the most amazing send-off. I was wheeled from my room into a hallway full of people, all cheering and clapping — a kind of celebratory gauntlet for patients who’ve made it through a pretty harrowing ordeal. They had strung a green ribbon across the end of the hall, which they had me cut with some shiny gold scissors and drape around my neck. I’m not one for public displays of emotion, but I couldn’t help but weep openly. I felt so supported, so comforted, so loved.

T.P.P.: I was sad to read that your beloved dog, Oscar, died while you were in the hospital. What should we know about him?

S.J.: Oh, Oscar. He was my badly behaved, rescue-mutt ride-or-die for 10 years. I got him when I was recovering from my first bone marrow transplant, and, in a way, we grew up together.

Oscar got me through so much — through heartbreak and through the unexpectedly difficult period after I finished treatment. During my recovery, I embarked on a 15,000-mile solo road trip with him as my co-pilot, and he was truly one of a kind. He was incorrigible. When I adopted him, I was told he’d already been returned to the animal shelter twice.

In a strange twist of fate, around the time I relapsed, Oscar was diagnosed with a rare, aggressive form of cancer, and there was no treatment for it. One of my friends, the incredible author Elizabeth Gilbert, took over his care when I became sick and wrote a really beautiful tribute to him in my Isolation Journals newsletter.Oscar died while I was in the bone marrow transplant unit. As gutting as the timing was, he was my companion and protector until the end.

T.P.P.: Can you tell me more about why you started The Isolation Journals two years ago?

S.J.: When Covid hit, I was quarantining at my parents’ house in upstate New York with Jon, my brother Adam and my dear friend Carmen, and I was struck by the similarities of what the world was going through and my own experience of medical isolation.

On top of a new, hyper awareness of germs, mask-wearing and hand-sanitizing, there was the fact that people were not able to go out or see friends or go to work, and there was so much fear and uncertainty. As I was watching all this unfold, I thought about what had gotten me through my own long period of isolation. For me, that was journaling and a 100-day project, in which my family and friends and I all did one creative act a day.

I decided to reprise both, and I invited some of the most inspiring authors, musicians, community leaders and unsung heroes I know to write a short essay and a journaling prompt. On April 1, 2020, I began sending it out as a free newsletter.Within a month, 100,000 people had joined us from all over the world. Our youngest participant that we know of is 6, our oldest 95.

I named it The Isolation Journals because that’s what we were living through — this great interruption of our communities, our connections, our ability to live and work and be together. Isolation is a condition that predated the pandemic and one that will continue long after it. People of all ages and backgrounds were writing that they had felt isolated for years, and that the newsletter was a true lifeline of connection.

The Isolation Journals is still going strong, and it’s our mission to help people transform life’s interruptions and isolation into creative grist. (You can choose a paid or unpaid subscription to The Isolation Journals here.)

T.P.P.: Congratulations on the paperback release of your book. What do you hope people will take away from your story?

S.J.: “Between Two Kingdoms” is the story of my illness and my trek through the wilderness of survivorship. However, I don’t see it as a cancer book, even though that’s the particular lens of experience through which I wrote it. It’s really about what it means to heal — what it actually takes to move forward when your life has been upended by some kind of rupture. I believe it’s impossible to arrive at adulthood without facing some sort of interruption, be it an existential crisis or something as big and blinding as a life-threatening illness.

But when you’re in that in-between place — when you don’t really know who you are or what’s ahead — it feels terrifying and lonely. But there’s also great richness to be excavated; in fact, those transitional moments have ultimately been the most powerful and pivotal of my life. So I hope my story invites people to reflect on the in-between moments in their own life. To think differently about them. To sit with them. To interrogate them.

At different points in my recovery — and when I say recovery, I mean both physical and emotional — I kept thinking, “I can’t believe this is taking so long.” I wanted to get to the other end — to get over it, to move on. But the in-between moments, though difficult, are sacred. They are rites of passage, and, rather than dreaded or rushed through, they should be honored. That’s what I hope people take from my book.


4 comments

Last activity by Kirsten Lewis

Kirsten
Kirsten Lewis

Wow, I've just started reading her articles last week. She's a strong woman and she will get through this. I wish her all the best!

Elizabeth
Elizabeth Cleveland

This is such a beautiful meditation on so many important aspects of being fully engaged and present in the world, in all its unpredictability, disappointments, and challenges. You are so fortunate that you have so many people who are there with you along this journey. I especially loved "So I hope my story invites people to reflect on the in-between moments in their own life. To think differently about them. To sit with them. To interrogate them." Such wise words.

H
Heather Cunningham

I followed her original articles back in 2012, and have thought of her frequently since then, and even last year googled her and was happy to see her doing well. Thank you for keeping us readers updated, I know that anyone who read her pieces back then still keeps a place in their hearts for her. Good luck, Suleika, we're all rooting for you!

Anne
Anne Young

Your writing has stayed with me since 2012. I am so saddened for you that the cancer has come back and wish you the very best.

Anonymous

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