KosAbility is a community diary series posted at 5 PM ET every Sunday and Wednesday by volunteer diarists. This is a gathering place for people who are living with disabilities, who love someone with a disability, or who want to know more about the issues surrounding this topic. There are two parts to each diary. First, a volunteer diarist will offer their specific knowledge and insight about a topic they know intimately. Then, readers are invited to comment on what they've read and/or ask general questions about disabilities, share something they've learned, tell bad jokes, post photos, or rage about the unfairness of their situation. Our only rule is to be kind; trolls will be spayed or neutered.
At first, I didn't know that there was anything wrong. I was a kid. I ran around and played, I went to school, I came home. No big deal. I got a few sprains and strains. I rode my bike. All completely normal. But school, particularly competitive physical education in school, taught me differently.
When they gave out brains, you thought they said trains and hopped on it.
I don't remember which of my elementary school physical education teachers told me that, when I was ten years old or younger, but one of them did. It hurt. He did it in front of my entire class.
I was a smart kid, too. It hurt that I couldn't get how to do things right when I had to do them physically. I was the slowest kid in class, the one picked last for everything, and rightly so. I couldn't keep up. And I did try.
There were even times I got very angry at myself. I didn't understand how other kids, especially really, really dull kids, could outperform me at basic tasks like running and jumping. I wasn't out of shape. I was one of those kids with pipestem legs and arms, very active, with a great metabolism. My family always kept active, too, with long bike rides and walks.
Then my junior high school social worker suggested to my parents that I see a neurologist. We went to see one when I was thirteen and just entering high school. And he showed me that I wasn't just stupid, or not trying. I had an inherited neurological disorder, one of the most common inherited neurological disorders worldwide, named after its three co-discoverers, Charcot-Marie-Tooth disease, also known as a muscular neuropathy.
The disease basically starts a degenerative process, usually only in the extremities, where the motor nerves especially start to deteriorate and "demyelinate." They don't stimulate muscles, so the muscles they would normally stimulate degenerate as well. This leads to an effect where the lower legs often look like inverted old-fashioned Coke bottles, with most of the muscle at the top and very little at the bottom.
Now, the form running through my family is mild. There is a form where people have less than 65% functional nerves, and those people usually end up in wheelchairs, have heart problems, and so on. My family form retains about 80-85% functioning muscles and nerves. We mainly get effects in our wrists and ankles. For example, I type very well and fast, but make a few more mistakes than I would with normal nerves. My mom and I have always taken a few more minutes for our eyes to adjust coming out of dark movie theaters, and the doctor told us that it's possible our irises are a little affected by our CMT, too.
But the most important part of all this, the part I remember the most, was the relief I felt when I got this diagnosis. None of this was my fault. I literally had no way to keep up with the other kids in gym class. I didn't have to blame myself any more. After all, there really was something wrong with me. I wasn't stupid. My body just would not, could not do what others' could.
I think of it now as an invisible disability, not just because physically no one can tell anything's wrong, but because it doesn't obviously affect me day to day now that I don't have gym classes to go to. I wear orthotics in my shoes to help me keep my balance. I walk and lift weights (recommended as treatment, by the way, to build up what muscles we have). Heck, when I was first invited to contribute here, I didn't even think about the fact that I've known I have CMT much longer than my problems with allergies.
Oh, it's still there. I still try to be careful when walking over uneven ground, as I have less muscle keeping my ankles straight and I don't want another bad sprain. But it's unconscious. It's easy to deal with. And it's not anything I have to worry about. I've always had it, and I live just fine every day not even thinking about the fact that I have this condition.
Thanks for your attention! I'll be here to take your questions for a couple of hours, then my husband and I will go out to the grocery store and library. With no problem at all.