In 2001 I had a growth spurt. I grew 3 inches, then promptly lost it. As it turns out, I have scoliosis. But it wasn’t that simple.
I was diagnosed with Charcot-Marie-Tooth, a genetic neuromuscular disorder caused by the degeneration of the mylene sheaf lining the peripheral nerves. This causes muscular atrophy, joint pain, and tendon weakness. It isn’t life limiting, meaning it won’t kill me, but it certainly limits my life.
There was a time in my life when I struggled to walk. I didn’t quite have orthopedic braces or custom shoes yet, like many of my family members, but I did have a special shoe insert. Typical teen, I refused to wear it. I ignored my doctor’s orders, and my body suffered. And I struggled to get by. Finally, 10 years after my initial diagnosis, I saw a picture of myself in a swimsuit. I hated my body. I was skinny, but I looked crippled. My shoulders were slanted, my hips off centered. I felt uncomfortable in my own skin, and I decided to take control.
Finding Fitness
I joined a gym and started lifting weights. I focused on my back and my legs. My theory was that if I strengthened the largest muscles, I would be able to strengthen the smaller ones. I was going to combat my disease.
And it worked. I still have scoliosis, my shoulders and hips are still slanted, but I am stronger. My body is stronger.
Then I began to run.
My first real race was the Boilermaker in 2014. I made a shirt that said “Muscular disability and still ahead of you” (or something similar) on the back. I wanted everyone to know that I was not going to be fast, but I sure as heck was not going to be last.
Somehow, I ran a 5k in 30 minutes.
I am not running for me anymore. I am running for a purpose. As a person with a neuromuscular disease, I want to spread the message that #EveryMileMatters, and we can stand up to muscular degeneration. Every mile I run is a mile closer to finding a cure for this untreatable, incurable disease that makes so many people immobile. I’ve got legs, and I’m going to run. I’m running for a purpose.