If you are familiar with the disease Duchenne muscular dystrophy, it’s easy to tell if someone has it. Enlarged calves, a waddling gait, the use of a wheelchair, and in some cases, a puffy face due to steroid use are all visual cues that point to the terrible disorder.
A lot of thought is given to the outward appearance of the disease, but less understood is how it feels when muscles do not work properly. Understanding this is equally important because it informs how caregivers, parents, family, and friends interact with us. It also helps to build greater empathy in society.
Having Duchenne is frustrating. All of my muscles are weaker because of a lack of the vital protein dystrophin, which provides structure to muscle cells. Imagine trying with all of your might to open a water bottle and nothing happens. In my head, I see people do it all the time without thinking twice, yet here I am using all of my energy without achieving any results.
Things that are supposed to be at an easy level are now at the expert level thanks to Duchenne. In the previous example, replace the water bottle with anything else, and the underlying frustration remains.
I’m blessed to still be able to walk at 24, but by no means does that mean it’s easy. If I step on a surface that is uneven at all, even from a crumb, I fear I might fall. The only thing holding me up are my tendons and the positioning of my body. If any of those things are thrown out of whack, I might go down, break a bone, and lose that ability forever. Most of the time, a change in my footing isn’t enough for a fall, but it is enough for me to feel like I’m unable to control my own life.
Some days I’m just exhausted, and I feel like I can’t even think. I want to be productive, but my body is screaming at me to stop. Meanwhile, my friends are functioning on six hours of sleep, taking a master’s course, and working two full-time jobs. I sometimes imagine what it would be like without Duchenne, and how many interviews I could do, articles I could write, and videos I could edit. The possibilities are endless, but then I’m brought back to reality.
By this point, you’ve realized I can’t do many day-to-day activities. That means I need someone else to do them for me. While I’ve gotten better at asking for help, every time I do it I’m reminded of my disease. I’m reminded that I’ll always be reliant on someone else. No matter how much I hate that “burden” word, I can’t help but feel that way to my friends and family sometimes.
As humans, we tend to compare ourselves to others. Usually, we tell ourselves things like “I’m not as pretty,” “I’m not as muscular,” or “I’m not as rich as they are.” But for me, every single thing in a physical sense is worse off. Add to that fear, frustration, and exhaustion, and you get a better picture of what living with Duchenne feels like. I’m not simply a kid in a wheelchair. Duchenne, and every other disability for that matter, goes beyond the physical aspect.
What I’ve written thus far sounds as negative as it could be coming from someone who typically has a positive outlook on life. The goal was to explain what Duchenne, a fatal, progressive illness feels like, so that you, the reader, understand it. One can understand the biological and genetic processes behind Duchenne while overlooking how it feels for it to be inside of you.
But there are so many joys in life that overcome the negative “feels.” I have loving parents, family, and friends, and not once have they treated me any differently because of the disease that I have. Duchenne hasn’t stopped me from loving them back.
I worship a God who takes me as I am and promises that in the end, “neither shall there be mourning, nor crying, nor pain anymore, for the former things have passed away.” I live under a democratic government with rights for people with disabilities. I enjoy the beauty of the world every day.
Try beating that, Duchenne.
Note: Muscular Dystrophy News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Muscular Dystrophy News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to muscular dystrophy.
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