Sometimes, it’s a lot easier to hide things than to open up about them. Maybe you don’t want people to think of you differently, or maybe you just don’t want to accept it yourself. I’m not too sure that this is always the best way. Maybe it’s the cliché of college -- “new beginnings” -- talking, but I think I’m ready for a challenge.
Let me tell you about a disease called Charcot-Marie-Tooth, or CMT.
It’s basically invisible, unless you know what you’re looking for. No, it is not a dental disease, nor does it have anything to do with Country Music Television. It’s a neurological degenerative nerve disease. It primarily effects the extremities, causing muscle weakness, loss of muscle, poor coordination, loss of sensation, and balance issues. As it progresses, it makes it hard to walk. It’s genetic, and my mom happened to inherit it from her father. There is a 50/50 chance that you will pass it on to your kids. I have one sister, and guess who drew the short stick?
I was diagnosed about three years ago, although we always knew that I was the one who inherited the curse. I fell a lot when I was younger, which was a common symptom. But, hey, at least I can say that I have a clinical excuse for being a total klutz. I was the laughingstock among the second grade soccer moms because, apparently, I face-planted a lot.
I, honestly, have no recollection of this. I thought I was going to be the next Mia Hamm. Despite my lack of embarrassment, my mom wanted to protect me, so she took me out of sports. Luckily, she also passed her stubbornness on to me, so I didn’t give up that easily.
I joined tennis in high school, picked up running, and started going on hikes with my friends. My philosophy has always been somewhere along the lines of, “Well, if my muscles are slowly deteriorating, why not use them while I still can?” I’ve learned my limitations this way, or rather, that I didn’t have nearly as many limitations as a lot of people with my disease. Things weren’t easy, but they were possible. Most of the time.
My disease started to pick up in high school. It affects my balance and my depth perception. It’s hard for me to walk on uneven ground, especially in the dark. I have to hold onto people for support, sometimes. If I close my eyes while standing, I’ll probably fall. My feet have high arches and muscle loss, which makes them hurt a lot when I walk on them too much.
I’m at risk of hurting myself without noticing because I’m losing senses in my extremities. I often burn myself on the oven because the feeling is delayed, and once I sprained my ankle without even noticing. I get awful cramps in my legs. They’re more frequent when I’m stressed, and college tends to do that to you.
It’s hard to admit when I can’t do something. Maybe it’s just because I’m stubborn, or maybe everyone struggles with this. When I can’t do something, I usually make excuses rather than admitting it’s because I have a disease, since most people don’t know about it. I’ve had to say no to ice-skating with friends because it’s virtually impossible with my lack of balance and weak muscles in my feet and ankles.
I forced myself to quit tennis this year after my roommate saw me collapse on our floor after practice because of the most painful cramp I’ve ever had. I didn’t tell my coach, or most of my friends, the real reason I quit.
I don’t talk about my disease much. I don’t want people to pity me, or think that I’m any less capable of doing things. But, honestly, hiding something that is such a big part of your life is unhealthy. I think this applies to more than just some rare disease. I strongly believe that we should all learn to be a bit more accepting of who we are because when you allow yourself to be honest, you might just learn something from it. CMT has taught me humility, in accepting that I can’t do everything. It’s also taught me to appreciate the things that I can do. I don’t take moments for granted, like crossing the finish line of my first 5K, or looking down at the mountain I just climbed.
Maybe I’ve pushed myself too hard, sometimes, but that’s the only way you’ll find out just how far you can go. And trust me, it’s further than you think.
