A few months back I explained why I run for a reason; to raise awareness for hereditary neuropathies and Charcot-Marie-Tooth disorder. As the months went by, this purpose expanded into something more. I run to inspire.
Growing up, I was tall, gangly, and awkward. More often than my sister I would stub my toe or bump into the corner of the coffee table, and although I never understood why I thought it was general clumsiness. But when I was in 6th grade I had a growth spurt, and did something strange. I sort of shrunk back into my previous height. It turned out that the muscles supporting my back had collapsed, causing two curves in my spine. I was twelve years old when I developed scoliosis. Normally this might not be a big deal, since the curves were fairly minor and scoliosis isn’t very uncommon. But with my family history it was quickly recognized as an indicator of CMT.
Charcot-Marie-Tooth (CMT) is genetic. My great-grandmother had it, my grandmother and father have it, and now I have it. In my grandmother’s childhood, she was advised to avoid physical activity because it was thought to make the disease worse. But I don’t agree. I cannot possibly believe that caring for my body would be bad for me.
Thankfully, in recent years medical science has realized exercise is beneficial, which is why I started running. I want to inspire people to push their limits. My condition is not a disability, it’s an opportunity to spread awareness. I want my own daughter to see me as active, and I want her to run because she can, and because she loves it. Then if she also ends up with this disease, she is already living an active life. Fitness shouldn’t be a punishment for hating our bodies. Our bodies should be a reward for loving ourselves.
When I was a kid, I did not play sports because I sucked. Literally, I was the worst at every sport I tried in gym class. I didn’t enjoy physical activity because of my clumsiness and the fatigue I felt afterwards. I couldn’t understand why I would be so sore and tired after 30 minutes of dodgeball.
Shortly after my growth spurt and scoliosis diagnosis, I visited an orthopedic doctor near by hometown in Albany, New York. He was very familiar with CMT, and took X-Rays, tested my reflexes, measured my foot arches, and then suggested I treat this disease with exercise. That’s all we can do.
I was stubborn though, and I really didn’t do anything until I was 20. I can’t say my gym class memories haunted me, but rather I found enjoyment in other things like art and music. I didn’t start working out until I began competing in pageants and was scored in a Lifestyle and Fitness category. Suddenly I felt strength where I never had before, and it felt good.
I describe Charcot-Marie-Tooth disease to people like this: Look at a radio. The electric socket is the brain, the cord is the nervous system, and the radio itself is the body. If you peel off the plastic coating of the wires (which represents the mylene sheaf around the nerves), what happens to the signal? The brain/wall is fine but the signal goes weak.
It’s the same with my body. My brain is fine, but by the time the signals get to my hands and feet it’s gone. This causes muscular degeneration in the extremities, weakness of tendons in the hands and feet, and numbness and tingling associated with a neuropathy. CMT isn’t life limiting, but it is progressive and gets worse over time. Everyone has different symptoms based on their progression.
There are tests to determine which strand of CMT someone has, but we don’t feel that is necessary. There is no treatment or cure for this disease, and at this point identifying my specific DNA mutation wouldn’t impact me. Some people believe stem cell research could lead to a cure, and I’m optimistic it could happen in my lifetime, but I’m not holding my breath. I’m a firm believer that we should live life in the present.
Now as an adult, my philosophy changed a lot from my youth.
I think it’s important for ‘not runners’ to know that anyone can be a runner, or any kind of athlete. Bill Bowerman of Nike once said, “If you have a body, you are an athlete.” And that hit me.
Running is personal. Even in races, I’m not really competing with anyone but myself. I ran my first 5k in nearly an hour. A year later I cut that time in half. This year I even won two Age Group awards. If I could tell my pre-teen self one thing it would be that. I wouldn’t believe me. Every race is a competition against the clock, and a clock ticking down the days until I’m potentially in a wheelchair. I don’t quit because now my running is more than just for myself. Maybe someone will see ‘that awkward girl with the muscle disease’ running and be inspired. I wish I had had someone when I was a girl to be the role model that showed me by example that I didn’t have to give up sports. I want my efforts to inspire a little kid with the muscle disease to be more active.
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