What Does it Feel Like?

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.


2 thoughts on “What Does it Feel Like?

  1. Love your blog and really appreciate you sharing so much. My daughter (7) has a form of Limb Girdle MD (haven’t done the genetic tests yet) and there are days we wonder what she thinks. She rarely complains about it, seems to accept it as normal, and is more than willing to share and tell others whats going on. She was at a playground with lots of kids she didn’t know that were playing tag. One other girl was chatting with her and helping her if needed. As soon as my daughter explained the problem the other girl told the other kids and they changed the rules to walk only. No running. How sweet!!!!

    The point you made about being lucky that this is all you have to deal with is soooo true. We say that all the time considering what other things could be wrong. She’s weak, but there are lots of ways to accommodate that in life. Other serious medical and mental conditions are out there that make her situation look simple.

    Keep up the great writing! You’re strong willed, show it in your writing, and have the right attitude about life.


    1. Thank you so much Rob! It means so much to know that I might be helping even one person just a little bit. I look forward to hearing more about your daughter as she grows up too!

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