The Beast of CMT

Charcot-Marie-Tooth syndrome. Sounds kind of like a fish or something doesn't it? Something with teeth...

A few years ago I was officially diagnosed with it, even though I knew for years that I had it. I really got officially diagnosed so I could have a baseline created, because I knew that my body would continue to deteriorate.

It's interesting the things that some people have said to me about this. One of the most hurtful is that I should just think through it. Do you tell someone with down-syndrome to just think through it? If they just try hard enough they won't have down-sydrome?

Well, like down-syndrome, CMT is a mutation of a chromosome strand on my DNA. It can get mistaken for Multiple Sclerosis (MS) but it's not the same. MS affects the muscles directly, CMT affects the nerve endings that send signals to the muscles. It makes walking on heels impossible, an absence or greatly reduced presence of reflexes (like when they hit your knee with the rubber hammer? On me it's only a slight movement on a good day.) As I've gotten older it's gotten more progressive, which is normal, which means my feet are mostly numb, and my calves are mostly numb. I still have some feeling. I describe it as feeling like my feet have gone asleep like when you sit on them for too long. It's a disease that gives the appearance of being normal in most people except for a few things...

I slap my feet when I walk, I have tight achilles tendons that I have to stretch, I get knots in my arms and legs on a daily basis, I have high arches and a difficult time finding shoes that have the right support that I need, (I'm especially grateful to KEEN and Merrill's because they make shoes that I can wear even if they are expensive), and, because I'm extra special it also has started to affect my hands. I knew this was a possibility but it by and far is one of the most difficult things I have to deal with. Watching my hand dexterity deteriorate and lessen my ability to do the things that I love to do, like play the piano and cello, crafts, writing, drawing, coloring, quilting, crocheting, handiwork. I try not to think about this very often, because, to be honest it makes me really sad. Eventually it will make it so it will be dangerous for me to bake and cook, which is also something that I really enjoy.

I don't know if it's because of the cold weather, but my hands have been especially bad the past few days. I play in a local community symphony, and to be honest, I don't know how much longer that will even be possible. So, today has been a downer day. A day where I give in, and cry, and go, WHY. WHY ME. Why do I have to deal with this? And it's hard. It's hard to see the silver lining. It's hard to turn it over to the Lord and know that this is just the way it is right now.

I know other people have it much worse than me, but it doesn't make it any less sad to me. I will keep plugging along though. I know that having a good attitude is helpful, and even though the music I create with my hands will eventually be impossible, I keep reminding myself that at least I can still sing. And that gives me hope.