Suleika Jaouad
Writer
1988-07-05
Quotes by Suleika Jaouad
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With a Catholic mother and a Muslim father, I've always had a great interest in religion, but I've never practiced one myself. After I received a diagnosis of an aggressive form of leukemia at the age of 22, I put my faith in medicine.
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I can always tell when my mother, an artist who grew up in Switzerland, starts to feel nostalgic for home. It is the smell of the crispy apple tarts, the ginger cookies, and the creamy muesli full of nuts and fresh berries. The scent alone delivers a rush of childhood memories for me.
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Soon enough I would learn the specific diagnosis: myelodysplastic syndrome, a disorder of the bone marrow. In my case, the disease growing inside me had morphed into acute myeloid leukemia. I would need intensive chemotherapy and a bone marrow transplant to save my life.
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Dozens of chemotherapy treatments and one bone marrow transplant later, I wish I could say that I've mastered the art of not working. But there are still days when I wake up feeling simultaneously restless and bored.
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Just a few years ago, at the age of 22, I learned I had an aggressive form of leukemia. I needed intensive chemotherapy and a bone marrow transplant to save my life. Back then, my doctors told me that I had a 35 percent chance of surviving my transplant.
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My column launched while I was in the bone marrow transplant unit. And I remember waking up the next morning and opening my inbox and seeing hundreds of emails from strangers all around the world.
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The bone marrow transplant procedure itself can be dangerous, but it is swift, which makes it feel strangely anti-climactic.
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Traveling gave me the opportunity to reinvent myself. You can imagine my excitement when, one year after my bone marrow transplant and two years after my cancer diagnosis, my doctors gave me permission to take my first big trip since cancer. Freedom, finally!
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It felt like 10 years, but I was actually in treatment for three-and-a-half years. I finally finished in April. Two years ago, I had a bone marrow transplant from my brother, which saved my life, so I feel really grateful.
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I've been fortunate to be treated by excellent doctors at world-class hospitals. In the last year alone, my insurance has covered over a million dollars in medical expenses, including a bone marrow transplant and 10 hospitalizations amounting to a combined five months of inpatient care.
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The thought of going through a bone marrow transplant, which in my case called for a life-threatening dose of chemotherapy followed by a total replacement of my body's bone marrow, was scary enough. But then I learned that finding a donor can be the scariest part of all.
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Today, my brother and I share almost identical DNA, the result of a successful bone marrow transplant I had last April using his healthy stem cells. But Adam and I couldn't be more different.
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Every single one of us will have our life interrupted, whether it's by the ripcord of a diagnosis or some other kind of heartbreak or trauma that brings us to the floor. We need to find a way to live in the in-between place, managing whatever body and mind we currently have.
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Having cancer changed the way I ate and thought about food. My symptoms dictated my eating habits. The sores in my mouth and the bouts of nausea, for instance, stole the pleasure of eating and made it an ordeal. At some points in my treatment, eating wasn't even an option.
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For many of us, the holiday season triggers memories of food and family. That's certainly the case for me.
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I'm a triple citizen of the United States, in Switzerland and Tunisia. And actually beyond just my immediate family, all of my family is abroad.
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I was born in New York but grew up between Switzerland, where my mom is from, and Tunisia, where my dad is from. Now I live in the East Village in New York, in the same building where my parents lived when I was born, so I've come full circle in my life.
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So, you know, when I think of survival as a creative act, it's not trying to plaster over the isolation or to, you know, rewrite your predicament into something positive with a happy ending or some kind of neat resolution. It's writing into the unknown.
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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.
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There's a photograph of me in the transplant unit where I have a vomit bucket under one arm, I have my laptop on my knees, and I'm crying, not because, you know, I'm about to have a bone marrow transplant, but because I've missed a deadline!
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