Remembering the Early Days: Muscular Dystrophy and the Misunderstandings

I still remember those early days when I was first diagnosed with muscular dystrophy. Back then, I was still able to walk, though every step was a struggle. Stairs were the worst—whether I was at a house party, a club, or just out at a restaurant, I’d always find myself gripping onto something or someone for balance. I’d hold on to a railing or grab a friend’s arm, trying to keep myself steady, hoping that my legs wouldn’t give out.

But they often did.

I can’t even count the number of times I lost my balance and fell. And every time, without fail, people around me would just assume I was drunk. It’s funny, in a way—people never asked if I was okay. Instead, they would whisper things like, “She can’t handle her liquor,” or “What a sloppy drinker.”

But here’s the thing: I wasn’t drunk. I wasn’t sloppy. I wasn’t any of those things. I had muscular dystrophy, a condition that was affecting my muscles and making it harder for me to walk. I didn’t always have the words to explain what was happening with my body, and frankly, I was tired of having to explain myself all the time. People didn’t get it, and back then, I didn’t know how to make them understand.

It’s strange to think back on it now—how many times I fell, how many times people misjudged me. At the time, it was hard to deal with. I wasn’t just struggling physically; I was also dealing with the weight of people’s assumptions. They thought they knew me, thought they had me all figured out, when in reality, they had no idea what I was going through.

Looking back, I realize how much I’ve grown from those experiences. Falling wasn’t fun, but I learned to pick myself back up, both literally and figuratively. I also learned the importance of sharing my story and helping people understand what muscular dystrophy really is. It’s not something you can see right away—it’s not as obvious as being drunk or clumsy. But it’s real, and it affects me every day.

These days, I’m much more open about my journey. I talk about muscular dystrophy, I share my experiences, and I try to educate people as much as I can. Because at the end of the day, I want others to understand that I’m not defined by my falls or by their assumptions. I’m just me, living my life, finding my balance—both in the literal and metaphorical sense.