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'Running Breathless': The Film I Made to Represent My Life With Chronic Illness

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I’ve watched a lot of movies in the hospital. In elementary school, I had every dog movie on rotation while spending weeks at Children’s trying to figure out what was wrong. By middle school, my mom and I built a healthy diet of romantic comedies and sitcoms for our monthly trips to the infusion center. In high school, I was solving “Grey’s Anatomy”-level mysteries during my extended stays for viruses, infections and flares. I watched a lot of movies. But, what I never saw in movies, was a story that even remotely resembled my life as a young girl who was chronically ill.

When I was about 12 years old, I created and posted my first video about my life with Crohn’s disease. YouTube was a relatively new platform at the time, and I was growing to love creating and editing videos. For weeks, I poured over old photos, scanned them into my family’s computer and strung everything together in Windows Movie Maker until my eyes went fuzzy.

I was on a mission. In sharing my story, I hoped to help other kids living with chronic illness finally see something on a screen that resembled their life.

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I was diagnosed with Crohn’s disease when I was 9 years old. The diagnosis came after months of test, doctor visits, surgeries, stomachaches, fevers, body pain and malnutrition that knocked me out of your typical third-grade life. But, I was lucky: not only did I live in a metropolitan area where many other kids were chronically ill, but also both of my parents were medical professionals. In our house, healthcare was accessible, normalized and a regular topic of conversation. From the comments I began to receive on my videos, I started to understand that most people did not have access to the support network or resources I had to conceptualize and talk about my illness.

When illness is represented in the media, it’s often shown two ways: acute or fatal. Rarely do we see characters who live their whole lives sick. “Running Breathless” represents my life, as I remember it, living in a body that doesn’t always work like it should. Having taken up distance running over the last few years, I often reflect on how able-bodied I feel right now. Yet, even in times of relative health, my life is mapped by how, when and why I was sick. My hospital stays, medications and special diets are benchmarks in my memory, and access to healthcare, insurance and maintaining remission write my future. “Running Breathless” is meant to highlight the chronic nature of living life with an autoimmune disorder. A chronically ill life comes with health challenges that are neither acute nor fatal and it is a life that deserves a place on screen.

I made “Running Breathless” in an effort to re-imagine media representation of chronically ill young women. My goal with this film is not only to share my story, but also to carve out space for a broader conversation about how we as a society discuss, validate and understand women and adolescents’ physical and emotional pain. Particularly, considering I am in a moment of great health, I feel it is important to acknowledge that illness is still part of my story and my identity. It is not something I will “overcome,” nor do I need to. My health (including my sickness) is part of a lens through which I see the world – acknowledging that lens is valid is the first step to not only starting a conversation, but also to increasing access to care for women and adolescents.

Over the last year, I have had the great honor of sharing this work the old-fashioned way: in theaters, with real tickets and a bucket of popcorn. I first screened in my hometown of Minneapolis, Minnesota at the Twin Cities Film Festival and then I brought the film to New York City, where the film won the Founders’ Award ReelAbilities NYC. At festivals, I was often asked how and when more people could see it, particularly understanding that chronically ill individuals may not always have the physical ability to make it to theaters during our limited screening times. Well, the time is now. It is a tremendous honor to share this story – my story – with the world.

Originally published: August 22, 2018
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