Alan Hieber

The physically limiting nature of Duchenne muscular dystrophy (DMD) is something I compare, in a way, to being chained. My body is seemingly grounded to struggling with menial feats of strength, including sitting up on my own or reaching out for an object that appears to be in close range. But there was an experience I had when these chains were relinquished and I was free. That was when I discovered the sport of running.

The introduction I had to running was when my father would push me in a stroller, oversized for such a purpose. I was about 8 or 9 years old when this happened. I wasn’t expending energy, but the adrenaline I felt from the motion was a thrill, almost like my personal roller coaster.

In 2005, I entered a 5K race fundraiser for one of the leading nonprofits for DMD, Parent Project Muscular Dystrophy (PPMD). A unique aspect of the event was allowing participants with the disease to participate using their power wheelchairs, even getting a head start. This was the first time I remember racing in that manner. I was hooked after that.

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Following the 5K debut with my power wheelchair, I went on to participate in various running events for nearly the next 15 years, primarily in the summertime. Pushing a joystick and making a few turns that ultimately led to a consistent 30-minute finishing time might not sound like much, but the strength and skill it probably required took more than meets the eye.

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I needed to be vigilant in my line of sight moving forward, sideways, and even in the back of my head, you could say. It was sort of like being a spotter for a motorsports event, but I was doing it myself. Then there was uneven terrain, such as potholes and bumps in the road, which I had to be mindful of. Hitting these sorts of hazards would often jostle me in the seat a little, but I did have a seatbelt, of course. It also wasn’t a walk in the park to keep my right hand basically glued to the joystick, which would later lead to fatigue and numbness.

From this decade-plus period that I’ve raced, there are too many memories for me to count. In my middle school days, I can recall one of those PPMD 5Ks, when my sister and her high school running teammates were tailing behind me. I got a first place medal for first wheelchair finisher that day.

Also around this timeframe was when my father got me entered into the annual Peachtree Road Race 10K in Atlanta, Georgia, on the Fourth of July, when I technically shouldn’t have been allowed to do so. The number of participants numbered in the tens of thousands. I jumped in with my dad in one of the later waves of the race just ahead of the starting line. Even then it was like navigating a sea of fish, but I will always cherish that moment.

There used to be a 5K in May near my local minor league baseball team’s stadium. The race director was a very kind-hearted man named Ray, who has since passed. He awarded me a plaque on several occasions for a wheelchair division. In recent years, I competed in a 5K at the close of summer that traversed through my college’s campus and had thousands of participants. This event is held ahead of a marathon that concludes on an Air Force base the next morning. For finishing my race I received a medal with a red, white, and blue ribbon. This was like my version of an Olympic medal.

Maybe the best part is the iron-clad bonds I’ve formed with friends through running events. The somewhat meager 6 miles per hour pace I had in most races was just right for being able to converse with acquaintances who have run alongside me. I’ve extended some of these connections after the race. Last summer I attended one of their weddings.

So why am I sharing all this? It goes back to that freedom I mentioned earlier, which was most evident when I accelerated down a hill. The momentum of this provided me the opportunity to sit up in my seat and feel the wind gust up against my neck. Though brief, these seconds of what seemed like weightlessness were a reprieve from the tribulations of DMD. Despite having to retire this passion, for the most part, a disease cannot steal the happiness running has given me.