I have Muscular Dystrophy. Well, a form of it anyway. I suffer from Charcot Marie Tooth. According to cmtausa.org, Charcot Marie Tooth, or CMT, is “a group of inherited disorders that affect the peripheral nerves, which are the nerves outside the brain and spinal cord.” There are 90 kinds of CMT and each is caused by a different kind of mutation. What this basically means is I was born with nerve damage.
CMT causes foot deformities, foot drop, “slapping gait,” loss of muscle in the lower legs, numbness in the feet and difficulty with balance. Later in life, one may see these symptoms appear in the arms and hands.
CMT is an inherited disease. I was fortunate enough to inherit mine from my dad, and if I ever decide to have kids and am blessed with a boy, he’ll get lucky and have CMT, too.
I never really let this disease define me. I don’t look like I have anything wrong with me, so I have just always acted like a normal person. (I’m not saying people with diseases aren’t normal.)
The thing that frustrated me the most about having CMT as a kid was I wasn’t able to do as much as the other kids. I have always loved to play sports, especially basketball, but when you have weaker ankles and leg muscles it’s hard to keep up with the rest of the team. I was always very self-conscious about my disease even though I tried to not let it affect me. Because I didn’t look like I had anything wrong with me, I didn’t want people to see me slowing down or not giving a hundred percent. I didn’t want to be the weak kid on the team and that caused me to push myself too far sometimes. I gave up playing sports once I got to high school. It was kind of pointless when I would go home with swollen ankles or knees every night.
When I was younger, I would see a Muscular Dystrophy doctor who always told me I was too fat and that I needed to lose weight. He would tell me that I needed to wear ankle braces to fix the way I walk. He was a very rude man and because of him I haven’t been to see another specialist.
When I got to college, the topic of me having CMT never came up so a lot of my college friends don’t know I have any type of disease.
I like to pretend that I don’t have anything wrong with me. I like to pretend that I can do any form of physical exercise and be ok. I like to pretend that I will have healthy children who won’t have to suffer from this disease. I like to pretend that muscle aches don’t keep me up at night. I like to pretend that I won’t lose the feeling in my feet. I like to pretend that I don’t have a disease that is eating away at my muscles.
The thing about pretend, though, is it’s not real. I can’t go for a long run, even though I wish I were able to. If I have a son, he is going to inherit this disease. I hate knowing that I am going to have a kid who will have to sit out from sports because of something no one else can see. Many people ask me why I don’t want to have kids and this is honestly one of the main reasons. That and I just don’t care for them that much.
I spend many sleepless nights trying to find the right position in bed just so the discomfort will go away. I have to make sure I do yoga stretches every night before bed if I want to get any amount of sleep. One day I am going to lose the feeling in my feet.
I used to be angry that I had a disease that didn’t allow me to do all the things that I wanted to, but I’m not angry anymore.
Because of this disease, I was able to attend MDA Rainbow Camp for over ten years. Those weeks spent at Camp Bethany were some of the best times of my life. Because of this disease, I was able to work closely with KLFY Channel 10 in Lafayette to put on the MDA Telethon each Labor Day weekend. Because of this disease, I have met so many amazing people who I am thankful for.
So, I’m not angry anymore. I still have my bitter moments because I want to be superhuman, but I know I can’t.
I am older now and I know my limitations. I am learning how to embrace everything that makes me unique, and that means embracing the fact that I have a disease called Charcot Marie Tooth.
I haven’t been involved with the Muscular Dystrophy Association in quite some time, but I want to get back involved.
There are so many different kinds of muscular dystrophy that affect so many people in different ways. If you would like more information on the different diseases, or if you would like to get involved, check out mda.org. Find your local MDA office and ask how you can get involved. There is currently no cure so donations are always welcome.
Every summer at camp, we would have a friendship circle on the second to last day. We would talk about the different things we loved about camp and the different people who have impacted our lives. We would always end with saying that the greatest day is going to be the day we can all gather to have one big bonfire to burn all the wheelchairs, walkers and braces.
I am still waiting for that day.