When I was younger, I couldn’t imagine losing my ability to get up from the ground, run, or play soccer. Now I can’t imagine losing my ability to walk.
At 23, I’m still able to walk despite having Duchenne muscular dystrophy, and I’m incredibly thankful for that opportunity. But at the same time, I don’t know when I’ll lose that ability and how I’ll react to the sudden loss of freedom. Whatever happens in the future, I’ll be content because losing that ability doesn’t mean I’ll lose any of my other gifts. Others have achieved more in worse circumstances.
I’ve been the outlier maintaining my ambulation for this long. Most people with Duchenne are confined to a wheelchair by their teenage years. Part of me hopes that never happens, but I need to be realistic. Some things are getting nearly impossible for me, and that might be the case for my ability to walk in the future.
Sometimes I wish I knew when it would happen. Sometimes I wonder if I would be better off getting it over with and having a chance to get used to it. Either way, I hope that writing this column might prepare me and help others who are going through that transition right now.
I feel as though walking is the only way for me to maintain my independence. Without the ability to move from my bed to my power chair, I would need care 24/7. I would miss the ability to take standing breaks and walk a few paces around the apartment.
I often remind myself to focus on what I can do and not on what I can’t. It’s my mantra, and you’ll hear it plenty more times here. Lamenting what I can’t do anymore doesn’t solve anything. And if I look at my own life closely, losing my ability to walk doesn’t take away from any of the things I already do: writing, editing, and streaming. If you think about it, people are mostly off their feet throughout the day anyway, whether it’s driving, sitting in an office chair, or lounging on the couch.
I should have learned another piece of my own advice by now: Independence does not mean doing everything on your own. It means taking ownership of your life. Just like with the other functions I’ve lost, ceding my ability to someone else shouldn’t take away my autonomy. As I, and others with Duchenne, contemplate what life looks like without walking, we should realize that losing ambulation doesn’t mean losing everything.
I think about walking a lot, so I’m inspired and humbled when I see people who can’t walk reaching incredible milestones. At The Washington Post, I wrote about a quadriplegic, Rocky Stoutenburgh, who streams himself playing video games using only his mouth. I’ve watched him rack up kills in Call of Duty: Warzone like no one’s business. I think, “Look at what this guy is doing without even using his hands!”
There are others. Some of my readers might be familiar with the YouTube channel Squirmy and Grubs. Shane Burcaw, who has spinal muscular atrophy, and his fiancée, Hannah Aylward, show what interabled romance looks like. He can’t walk, yet Burcaw has written three books and posts videos that reach millions of people. Clearly, losing my ability to walk won’t impede any future successes.
I’ll always be frightened of losing my ability to walk. But when it happens, hopefully I’ll come back here and remember what’s possible even in the most difficult circumstances.
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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