Imagining a Life Without Duchenne Muscular Dystrophy

I sometimes like to imagine a life in which I don’t have Duchenne muscular dystrophy, a progressive muscle-weakening disease. No boundaries would hold me in. I could travel anywhere I want and write an unlimited number of stories.

This is an exercise in imagination, but understanding what’s possible without Duchenne can help me understand what I can do with it. It also helps me to understand the life I’ve gained from having a life-taking disease. 

It’s almost impossible to comprehend how life would be different. Even before Duchenne forced me into a wheelchair most of the time, I had great hand-eye coordination and could keep up with most kids on the soccer field, where I was a goalie.

I get tears in my eyes thinking about going back to that time of innocence, before the disease reared its ugly head. If I could have realized my full potential without my muscles falling apart, I guarantee I would have been a quarterback in high school football.

Even so, I did get close to that experience with the help of a new football coach my freshman year. He recognized my desire to be on the field somehow. And I was, in my role of sounding the air horn to corral players into the next drill, filming practice high above the field in an aerial lift, and calling out stats under the Friday night lights.

Sometimes, at the end of practice, the guys would huddle up around me for Hawk’s Motivational Corner™ to listen to a motivational quote I found online. I would have loved, more than anything, to suit up, but being part of the football team was just one of many workarounds that helped me do what I wouldn’t have thought possible.

What especially hurts to think about, though, is how my trajectory as a journalist would have changed if it weren’t for Duchenne. I’ve always loved photography, and I took a black-and-white photo darkroom class in high school.

In my teens, my black Canon EOS Rebel XTi was as much a part of my outfit as my Tony Hawk sweatshirt. As my upper body started to weaken, and the bulky DSLR camera became heavier and heavier, just using it, much less getting low-angle shots, wasn’t possible anymore. 

I can imagine backpacking with my camera around the world, through the plains of Kenya, the bustle of Istanbul, the crystal-clear waters of Thailand, and the mountains of Patagonia.

In this dream world, as I transitioned into journalism, I would take photos of global citizens in happiness, despair, and love, with the hope of convincing people to care about the world around them. Writing always would have been a part of me, I believe, and my stories would have accompanied my photos, hopefully to show readers not to take their lives for granted.    

The beautiful thing is that despite my disability, I’ve achieved some of my dreams without Duchenne. I’ve traveled the world and captured my surroundings in Vietnam, Argentina, and Costa Rica.

My phone is a trusty piece of camera equipment weighing no more than a reporter’s notebook. And while I wasn’t alone — I relied on my dad’s arms and legs for help — I was able to spend quality time with my parents. This was a different experience, but no less powerful.    

Now, from the comfort of my home in Southern California, I’m writing about the rare disease community, which demonstrates incredible resilience, compassion, and drive every day. I’m encouraging people to see themselves in others who have disabilities, and to count their blessings.

Through the foundation my parents started 17 years ago, CureDuchenne, I’m mentoring younger men with Duchenne and helping them see their worth in the world. 

I could have been a different person without Duchenne. I could have been louder instead of quiet and introspective. I could have been in more relationships that might have ended in heartbreak. I could have been so self-involved that I might have lost sight of my divine purpose as a human — to show compassion to others.

I hate having Duchenne, but I’m glad for the person it’s molded me into.

I know that life without Duchenne isn’t possible until God welcomes me into heaven. For now, I’m happy where I’ve been placed, and grateful for the gifts I’ve been given, despite my disability.

My purpose is clear, and life isn’t over. It’s just beginning. 

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