Life, Interrupted: The 100 Day Project
For the better half of my early twenties, I was Bubble Girl. When I was diagnosed with leukemia at 22 my world suddenly dwindled to four white walls, a hospital bed, fluorescent lights and a thicket of tubes and wires connecting me to an IV pole. My immune system had been annihilated by chemotherapy. Sex, a common cold, fresh-cut flowers, a handshake, a paper cut — these were all things that could kill me if I wasn’t careful. Unable to have a job, go to parties, travel or achieve any of the rest of the big and small milestones of early adulthood, I started asking myself important questions, like, “What in the world did I want to do with my life? What could I do with my life from a hospital bed?”
Being sick and young is hard in all the ways you might imagine and more, but mostly it can be incredibly boring. “You need a project,” people kept telling me during my first few weeks in the hospital. “Something to keep you from going stir crazy.” Hospital volunteers offered a variety of one-on-one “how-to” classes to break up the day involving things like knitting, beading, making vision boards and dream catchers. But none of those activities felt very me. I was sick — not retired.
That’s around the time my friends and family suggested we start something called “The 100 Day Project.” I can’t remember who came up with it first, but the idea was that each of us would do something creative once a day, every day, for one hundred days.
My mother decided to paint a watercolor each morning by my hospital bed. My father, who rarely speaks about growing up in a family of seven children in rural Tunisia, wrote down one hundred childhood memories that he compiled into a book for me.
My boyfriend sent me daily iPhone video reports from the outside world on everything from the weather to the quality of the pizza in the hospital cafeteria. “I’m reporting from Central Park,” he’d say. “Today I’d like to introduce you to the hot dog vendor across the street from the hospital. Rafiki, say what up to Suleika!”
For my 100 Day Project, I chose writing. I promised myself that, no matter how sick or exhausted I felt, I would jot something down in my journal every single day. Some days that meant pouring my heart out onto a dozen pages, other days I wrote one word — generally beginning with the letter ‘F.’
The 100 Day project was meant to be a diversion from the steady hum of monitors, the chatter of medical students in the hallway, the wheezing of respirators, the alarm that went off whenever my condition abruptly worsened. With time, though, it became much more than that. It was a way of organizing my days around one small, simple act of happiness. It helped me to reconnect to myself when the person staring back at me in the mirror had become unrecognizable. Keeping that journal showed me how to write my way out of my private hell. It gave me a voice when I felt I had none and a job to do beyond simply trying to survive. To set a 100-day plan was to will myself into the future, no matter how uncertain it seemed.
A year after my diagnosis, the 100 days took on an added significance as I prepared to undergo a harrowing bone marrow transplant with my brother Adam as my donor. The transplant was dangerous — my doctors explained to me that I only had a 35 percent chance of long-term survival — but it was my only shot at a cure. Although the transplant carried many risks and unknowns, the procedure itself was swift and anticlimactic. On what doctors call “Day Zero,” Adam’s stem cells dripped into my veins from a hanging I.V. bag, and it was all over in minutes. The hardest part came in the days and weeks after as I waited for his cells to engraft in my bone marrow. The goal was to reach Day 100 or “Examination Day” as doctors call it, the first major benchmark for evaluating a patient’s recovery from the transplant.
I lived to celebrate Day 100, and then another hundred days after that, and many more. Against all odds, four years after my diagnosis, I am still here: battered, bruised, somewhat broken but in remission. It’s been just over a year since I finished my cancer treatment and left the kingdom of the sick. I am deeply grateful to be alive, but the task of finding my way back to the kingdom of the well has been more daunting than I could ever have predicted.
Survivorship comes with unspoken pressures, responsibilities and challenges. After all, what is the point of saving a life if the life isn’t a meaningful one? I find myself pulled in opposite directions as I attempt to process the trauma of these past few years while also taking steps to rebuild my life. I joke that I am stuck in the Michael Jackson phase of healing. I’m moonwalking: simultaneously gliding forward and backward but not really going anywhere.
As I find my way forward, I’ve hatched a new 100 Day Project. I am embarking on a 100 day road trip across the United States. With a second chance at life, I want to take some time off to seize my born-again freedom and to heal. I have never been on a road trip and after spending so many years relying entirely on caregivers, I’m fixated on the idea of getting in the driver’s seat of my life.
Along the way I will visit and thank some of the unexpected strangers who supported and inspired me when I was sick. There was a mother hooked on the pain medications she was prescribed during her cancer treatment, a man who lost his brother in the North Tower on 9/11, a fit and healthy twenty-something living in San Francisco who was searching for — everything. I heard from doctors who assigned my columns as reading to their medical students, and from students who were inspired by my writing to become doctors. I even heard from a convict on death row in Texas who wrote to me about the unexpected parallels between our lives. “The threat of death lurks in both of our shadows,” he wrote to me in careful cursive.
They don’t know it, but many of these individuals became lifelines — bright, shining lights during the darkest days. These strangers were more thoughtful, honest and vulnerable with me and each other than a lot of the people I know in the real world. Their empathy was an affirmation of humanity. Their stories of resilience gave me strength in my moments of weakness. They taught me about the kind of person I wanted to become. (First and foremost, one who reaches out in times of hardship.) Most importantly, they showed me that we all have interruptions at some point, whether it’s illness, the death of a loved one, unemployment or a bad break up.
But as much as these strangers affected my life, the truth is that I rarely responded to them. Most of the time, I was just too sick and worn down by my illness to have much of anything to give at the end of the day. Now, I’m taking the time to respond to some of the people who wrote to me when I was I was sick — not online or by snail mail, but in person. I want to know more about their stories. I want to know what happens when the fourth wall of the web is broken, when the shiny screen that protects us from actual human interaction is lifted. And more than anything, I want to say thank you. I suspect there is a lot I can learn from them as I try to pick up the pieces of my own life.
Over the last few months, I’ve taken driver’s ed, passed my road test, left my apartment and outfitted a car into a camper. On Monday, I hit the road with my badly behaved rescue mutt Oscar as co-pilot. I don’t have any dramatically life-altering expectations from these nomadic months ahead. As they say, you bring your problems and accomplishments with you, even if you change your zip code. But I believe in the power of travel and taking stock of what’s good in your life to break the chain of routine, to uncrinkle the mind and to grow the spirit.
I’m not big on numerology, but I like the idea of this road trip as an opportunity to hit reset and to start afresh on a different kind of Day Zero. It’s my way of reclaiming a number that, over the course of the past few years, has come to represent seizing the unexpected. The difference is that this time, the circumstances are of my choosing. It’s a journey into the wilderness of survivorship and America’s interstates.
I’m at a crossroads. To pretend that I’m not is to remain stuck, to proceed is to pick a direction. I have chosen the latter. Oscar and I might end up in a college dorm room in South Carolina, on a farm in the golden cornfields of Iowa, on a couch in Wyoming, visiting a prison in Texas, and a houseboat in Louisiana. We will go where the interruptions take us, and see what we find.
Suleika Jaouad will be documenting her 100 Days on the road through a photo journal on Instagram (@itssuleika). Follow along on her journey and if you feel inclined, start your own 100 Day Project and tell us about it in the comments section.
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