At just 22 years old, writer Suleika Jaouad was given a one in three chance to live after a deadly cancer diagnosis. Today, she's celebrating seven years cancer-free.
In a raw and revealing conversation with Hoda Kotb for her "Making Space" podcast, Jaoud, an Emmy-winning writer and author of "Between Two Kingdoms," shared what it is like to stare down death, and why she feels fighting for your life isn't the hardest part of the journey … it’s what happens after the fight is over.
Plus, her partner and Academy Award-winning musician Jon Batiste, music director of "The Late Late Show with Stephen Colbert," joins the interview.
So you're going about your business, and you get a feeling of a little itchiness, which I think your average Joe would think. Oh, well, I don't know what that is. Eczema, give me some cream. But that was not the case at all. What happened?
it was only when I got to a point where I was so weak, it was a struggle to walk up and down the stairs that I found myself in an emergency room.
So, at the time I was living in Paris, I was just a couple of months out of college ... It started with an itch and it just blossomed into all kinds of mysterious symptoms. I was getting colds all the time, and coming down with bouts of bronchitis. But the biggest symptom I had was fatigue. ... I went to see a number of doctors, all of whom, you know, treated that specific symptom and sent me home. And toward the end of my time in Paris, I started to get the feeling that my doctors that I was seeing were taking me seriously. But I think the truth is I wasn't entirely taking myself seriously. Youth and health are supposed to go hand in hand. And it was only when I got to a point where I was so weak, it was a struggle to walk up and down the stairs that I found myself in an emergency room. And within 24 hours I was on a plane back home to upstate New York, and I got the bone marrow biopsy that led to my actual diagnosis.
To hear the words that you were diagnosed with a specific type of leukemia at 22 is scary enough, but when they said the chances of survival were one in three, what goes through a 22-year old's head?
I think there was this immediate sense of fracture. There was my life before and everything that came after. And, you know, I never returned to Paris, to my apartment, to my job. Friends packed up my things and and sent them to my house. And I had this sense, even though I couldn't quite wrap my head around what it meant to have a cancer diagnosis at 22, that the person I'd been before was buried, there was no returning to that pre diagnosis itself.
That was the most challenging, I think, to know how to kind of anchor yourself when you're swimming in a sea of uncertainty.
I didn't know, you know, on day one, that I was going to be in treatment for three and a half years. And they say you can survive anything as long as you can see the end date in sight. And there came a point in my treatment where I couldn't see that end in sight. And that was the most challenging, I think, to know how to kind of anchor yourself when you're swimming in a sea of uncertainty.
There are life lessons that come in your worst times ... all of a sudden you realize, my life has a beginning and an end and I'm not wasting time like that. Did you have that sensation?
Yeah. I think like a lot of people in their early 20s, I had this feeling of time. I had time to figure out who I was, time to figure out what I wanted to do. And that diagnosis brought into immediate, urgent focus the fact that we're all here for a finite period of time. And I felt a strange sense of urgency around time. And I had the same experience. It felt like all the artifice just kind of fell away.
I got clear not only about who my friends were, but maybe more importantly, who I wanted to be friends with and what kind of relationships I wanted to cultivate, and I had such limited energy that I was well enough to maybe do three things every day, small things like write an email, watch a movie, see a friend. And what that meant for me was that I had to get very clear about my priorities.
So to have a doctor say to you, I don't know if you used the term cancer free or you are in remission, but to hear those words, what did what did that moment feel like?
I mean, I had been hoping to hear those words for almost three and a half years. ... But it didn't feel anything like what I imagined. I was physically, you know, wrecked from going through those treatments. I was grieving. My loss of identity, my sense of self, I was grieving my fellow cancer buddies that I had made, my best friend Melissa had died earlier that month and I was grieving a relationship that hadn't survived the stresses of illness. And so I felt this weird dissonance between what should be and what was. ...
I think often when we talk about things like cancer, the kind of final act at the end of the story comes with a cure. But we don't talk a lot about what happens after.
I think often when we talk about things like cancer, the kind of final act at the end of the story comes with a cure. But we don't talk a lot about what happens after. And it took me a while to even acknowledge to myself how much I was struggling. There were so many unanswered questions that I didn't know what to do with, like, you know, how do I find a job when I need to nap for four hours in the day? Or my immune system is still sending me to the emergency room on a regular basis? How do I date when I have a quarter inch of hair and a port still in my chest? How do I talk about, you know, the side effects of chemo like infertility or early menopause? All of it felt so overwhelming and in a weird way, I found myself almost wishing that I was still sick, not because I wanted to have leukemia, of course, but I understood the hospital ecosystem. That was the world that I lived in for four years. I felt comfortable there. I looked like the other patients. It was the outside world that felt scary and foreign and daunting to me.
So I love I love your New York Times column. I thought it was so beautiful and riveting and moving. But what I loved so much more was when people reached out to you because they connected with you. What did you do with those letters that you got?
That year after I finished treatment, I was in the most lost place I've ever been. I knew I wasn't a cancer patient anymore. I knew I couldn't return to the person I had been pre diagnosis, but I had no idea who I was. And so I started thinking about these different rites of passages that we have in our culture, these kind of ritualized ceremonies that help us move through transitions like baby showers and weddings and funerals. And I realized that there wasn't a kind of ritual or rite of passage when you emerge from a long illness. And I needed that. ... And I ended up embarking on a 15,000-mile road trip across the country to meet some of the strangers who'd written me letters about their own major life interruptions and their own stories of transition.
So what was it like when when you actually went up and met these people?
My experience has been that when we dare to share our most vulnerable moments and stories, there's a kind of reverberation that happens and a call and response, and vulnerability begets vulnerability, begets vulnerability.
It was extraordinary. I mean, I you know, after being sick for so long, my relationship to fear changed dramatically. I was always prepared for the other shoe to drop, prepared for something to go wrong. And what I found instead and these encounters and on that road trip was that the world really welcomed me at every turn. I ended up staying on someone's foldout couch. You know, I stayed with the on a ranch in Wyoming with a family of survivalist ranchers. I visited a high school teacher in California who was grieving the death of her son. I went to a maximum-security prison in Texas to visit a death row convict. And each of those conversations helped me gain a sense of perspective on my own predicament. ...
My experience has been that when we dare to share our most vulnerable moments and stories, there's a kind of reverberation that happens and a call and response, and vulnerability begets vulnerability, begets vulnerability.
Music has always been a big part of your life, which explains your very handsome and awesome boyfriend Jon Batiste, who we're going to talk to now. I'm sitting smack dab in the middle of a love story. OK, so you're at band camp at 13 years old. Was there a crush or were you all just friends?
Jon Batiste: No. no crush. I was very much a late bloomer. So I was into music and video games and martial arts and chess, things like that.
Suleika Jaouad: All the nerdy.
Jon Batiste: Yeah, I was about to say all the introspective kind of introvert activities.
Suleika Jaouad: I remember thinking he was a little strange because I think I tried to initiate a conversation and conversation was not happening, not into it.
Jon Batiste: She's always been a great communicator, always magnetic, always able to communicate the emotions that other people are feeling. I noticed that about her immediately. But there was no crush. We linked later in college and that's when we started to really become more friends.
So let's fast forward to how did you learn that Suleika was not well?
Jon Batiste: We were playing in the subway one day. And (a friend) told me and I gathered the rest of my band because at this time it was just a few of us. I got the rest of them and we went to the hospital and, you know, I hadn't heard that she was that ill until that moment. It was it was a real moment of clarity that I had to do something. And what I do was music. I just felt I needed to bring that to the situation to help in any way that I could. So that's what I did.
Suleika, what was it like to watch him?
Suleika Jaouad: What Jon didn't know was that the day before, I learned that the chemotherapy I'd been doing wasn't working. I'd entered the hospital with 30 percent leukemic blasts and by the end of this really harrowing treatment I had 70 percent. And so at that point my only option was an experimental clinical trial. And my family, I mean, I remember not even being able to look my parents in the eyes because I knew that if I saw how devastated they looked, I just wouldn't be able to hold it together. And Jon showed up in the middle of that, with his entire band and put on this impromptu concert and the extraordinary thing about music is that especially maybe when you're in a lowdown place it has this kind of musical antidepressant effect, and it wasn't just for me and my family, it was the whole cancer ward. And patients and nurses and doctors started to trickle out into the hallways and people began to dance and sing and clap their hands. ...
But it's also a testament to Jon, because Jon is someone who who shows up in the difficult moments and who keeps on showing up not just for me, but for everybody. And he's always been that way.
Jon Batiste: Well, you got to show them. You got to show people you love them.
This conversation has been edited; for the full conversation, listen to "Making Space with Hoda Kotb" wherever you find your podcasts.
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