As a person living with muscular dystrophy, one of the questions I get the most is “what does it feel like?” It’s a question I never mind answering. In fact, I really don’t mind answering most questions about my disability (just as long as people don’t say things like “wow, you’re gimpy today”).
I was watching Push Girls again the other night and one of the girls (who is only 18 and hasn’t been in a wheelchair for very long) said there are so many moments where she just wants to get out of her wheelchair, stand up and dance again. Her brain feels like she should be able to but her body doesn’t follow. I think that’s the perfect way to describe my disability too. Take going up stairs for example, my brain feels like I should be able to just fly up them for all intensive purposes. Unfortunately, my legs just don’t follow suit. The same applies for getting off the couch, or out of a low car, or chair. Sometimes it can certainly be extremely frustrating. My brain thinks I’m completely physically able at times and my body just can’t follow. I definitely have those moments where I wish I could just go right up the stairs or hop off the couch. I’d love to be sitting on the floor and be able to just pop right back up onto my feet too.
But despite those moments, I never lose site of the fact that I am extremely lucky if that’s the only thing I really have to deal with. A lot of people ask me if it hurts too and for the most part it really doesn’t. I get sore a little more easily than the average person I think and of course I fall a lot more often also which can lead to some pain. But overall, I’m pretty darn ok. There are a lot of other kinds of muscular dystrophy that cause extreme pain among other terrible things, so if all I have to deal with is not being able to exercise mind over matter, then I should count my blessings every single day.