Photographed by Atisha Paulson.
"Inspirational" doesn't really cut it when you're talking about Suleika Jaouad. Her New York Times column and video series, "Life, Interrupted," documents her struggle with stage-four leukemia. Now cancer-free, Jaouad speaks with us about how she managed to defeat her disease with bravery and grace — and found a new sense of self in the process.
In the introduction to your first video for the Times, you said, “I wasn’t going to get my old life back.” What was that old life?
In fall of 2010, I had just graduated with highest honors from Princeton and was working as a paralegal in Paris. I was excited for the future and to figure out who I was and what I wanted to do with my life. My dream was to be a war correspondent, and in early 2011, I got my “big break” — a gig covering the revolution in Tunisia for a major newspaper. It was a dream come true.
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About a week after, I started to get really strange symptoms out of nowhere. I had never been sick, I had never even broken a bone. I started suffering from extreme exhaustion, nausea, dizziness. I got really, really pale.
In March 2011, I was hospitalized for about a week. The doctors ran every conceivable test other than a bone-marrow biopsy. They diagnosed me with something called “burnout syndrome” and sent me home.
Four days later, I woke up, and I could barely get out of bed. I felt like I had been hit by a bus. Luckily, my boyfriend was there, and he got me to the ER. They took some tests and told me that my blood-cell count had gotten very, very low. They told me that I should fly home to New York. Soon I was at Charles de Gaulle airport in a wheelchair. It was so surreal — I had gotten there months earlier in high heels, excited to start my new life. Overnight, my life had changed entirely.
My parents picked me up at the airport and took me home with them. About a month later, I got a bone-marrow biopsy. I was diagnosed with aggressive stage-four leukemia. It was a huge shock — no matter who you are, you never expect to hear those three words: “You have cancer.” I was 22.
Photographed by Atisha Paulson. How did your relationship with your boyfriend change when you were diagnosed? How did it progress over the course of your illness?
Seamus had moved to Paris to be with me a few months before I got sick, even though we had only been dating a few months. It was pretty clear to both of us early on that we had something special. But, when I got sick, I didn’t expect him to stick around. The last thing I wanted was for him to stay with me out of pity.
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Within 24 hours of my diagnosis, he had gotten on a plane to visit me at my parents’ house in upstate New York. At the time, I just felt like a 22-year-old girl in love. I was giddy that my boyfriend was spending time with my family and me.
People like to talk about how things like cancer brings people closer together. I think that’s a gross oversimplification — it’s really hard, especially when you’re in a young relationship. All the normal things you do when you start dating someone at 22, like going on dates, went out the window. But, Seamus was a huge pillar of strength from day one. Over the many months I spent in the hospital, I didn’t spend one night alone — he was always there, every night, sleeping on a cot or in a chair in my room.
One of the most shocking things as a woman going through cancer is losing your hair. For me, it was a confirmation of what I knew, but couldn’t see, and didn’t want to accept yet. But, Seamus encouraged me to embrace my bald head, not cover it up. He made me feel beautiful, even when I had no hair or eyebrows or eyelashes.
How did your friends react?
College prepares you for all sorts of things: living on your own, finding a job, working in the real world. But, I’ve found that it doesn’t prepare you for larger life or death questions. Some of my friends just didn’t know what to say, so they didn’t say anything. That silence was hurtful and confusing. I found that it was up to me to set the tone of the conversation and to let them know it was okay to ask questions. I told them that if you don’t know what to say, you should start by saying that — it’s a great way to start a dialogue.
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My best friends, though, were always trying to make me laugh. That’s what made me feel human, normal. I’ve always felt like a young woman first and a cancer patient second. They understood that.
Photographed by Atisha Paulson. Many cancer patients have said they take comfort in the community they build with others who are going through similar experiences. Was this your experience?
The thing about having cancer in your 20s is that you’re too old for pediatrics, but you're often decades younger than the other patients in the cancer ward. That can be so isolating. I wasn’t married, I didn’t have kids. I hadn’t had the chance to even start a career. I couldn’t relate to the issues that the patients on my floor were dealing with.
Since the column came out, I’ve received hundreds of emails — from perfectly healthy young people, from parents, from long-lost friends. But, the ones that really resonated with me were from other young people who were dealing with life-threatening illnesses. I still remember a young man who was also getting a bone-marrow transplant at the same hospital who wrote to me. We were both in isolation and couldn’t visit each other, but just knowing that there was someone else on the same floor as me who got it, who was going through the same thing, was so comforting.
In your series, you talk about how the physical pain of the illness and the treatment was shocking to you. What was the most difficult part of the treatment you received?
For me, the hardest part was the isolation of being in a hospital bed for months. Seeing the same four walls, being in the same tiny little white bed. I couldn’t be a war correspondent; I couldn’t go to a 9-to-5 job like my friends; I couldn’t go to parties. I couldn’t do any of the things that make you feel normal when you’re in your 20s, and I really struggled to hold onto a sense of myself, especially when I could barely recognize the person looking back at me in the mirror.
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Putting pen to paper, expressing these experiences and trying to advocate and raise awareness on cancer, but more specifically on young people with cancer, I began to find my voice — and that was something that I didn’t necessarily expect. With each video and each column, I started to feel braver and bolder, during a time in my life when I simultaneously felt incredibly vulnerable. Pursuing my dream of being a journalist — despite the limitations that my cancer imposed on me — was kind of my “fuck you” to the disease and to everything I was going through.
Photographed by Atisha Paulson. How has the way that you express yourself changed? How has your personality changed?
Growing up, I had a certain idea of who I was and what I wanted to look like, but all of that changed when my entire wardrobe dwindled to a hospital gown, and I watched my hair fall out in clumps. Everything from the shoes that I wore to the way that I carried myself changed. I wanted a uniform that made me feel tougher and braver. And suddenly, I found myself wearing leather jackets and shoes with spikes in them and experimenting with all of these different looks and styles that I would never have dared to wear before all of this. Finding creative ways to own how I looked and what I was going through was my way of owning the disease and not letting it own me.
In some ways, cancer has made me completely fearless. I stopped thinking about who I “should” be or what I “should” do. I basically removed the word “should” from my vocabulary and decided to do what I wanted to do, when I wanted to do it. And, that was empowering.
If you could say one thing to the person you were before your diagnosis, when you were just graduating college, what would it be?
One thing I’ve learned is that no matter what we think our life will look like in the future, we all have “life, interrupted” moments. But, what’s important to realize is that these interruptions come and go. What matters is figuring out how to turn it on its head, to cope with it, and to grow beyond it. I think what’s empowering is that I know this is not going to be the last challenge that I face in my life. But, learning how to turn these negatives into positives gives you muscle memory for other problems, other unexpected challenges that you’re going to have to deal with later on in life. And, I feel like facing those challenges with dignity and bravery and kindness is the best kind of schooling that you can give yourself.