On Standing

I’m surprised this isn’t a facet of my muscular dystrophy that I’ve covered before: how my legs feel when I’m standing. I thought about it the other night when I was with my friend, watching a band we like play. They were asking the crowd to jump up and down and bounce a lot…two things I most certainly can’t do.  I didn’t feel embarrassed or saddened by the fact I couldn’t join in on the jumping (now there’s a sign of personal progress). Perhaps it’s the meditation, but in that moment, I was just keenly aware of what my legs felt like as I was standing on them.

They felt like two very heavy objects, perhaps pipes filled with metal or something along those lines. I just don’t have those “bounce” reflexes in my body so even if I try, I just can’t get my legs off the ground…only my toes a little bit.

After standing for a while, my legs also start to feel like they get heavier and heavier and more and more stiff. I often have to keep shifting my weight from one leg to the other. When I’m not doing water aerobics, I also get pretty bad lower back pain. It’s a very odd sensation though…the heaviness. My brain is telling my legs to just jump up and down or bounce. Even in my head, I can picture myself doing it, but my legs always have other plans. It feels like I’m in an area that has a different sphere of gravity than everyone else. It can literally feel like the ground is one part of the magnet, and my legs are the other.

This is another one of those examples with MD where you brain says one thing, but your body does another. Even though I’ve never known anything but my MD and my extremely low levels of strength, my brain still doesn’t get the memo sometimes. It thinks I can go up that set of stairs and it’ll be fine. Or that if I just try, I can bounce up and down. Sometimes that can be super frustrating as I wish my body would catch up with my brain or my brain would try harder to be in sync with my body. My MD is a neurological disorder after all.

In the meantime, I will continue to dance from above the waist as much as I can…


2 thoughts on “On Standing

  1. Have you ever seen a film called “inside I’m dancing”? This post made me think of it. It’s about a guy with muscular dystrophy and his friend has cerebral palsy. It’s a good film.

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