Despite this, I am a triathlete and long-distance runner. I am a Milwaukee resident and a member of the Badgerland Striders running club. Recently, I lined up with 1,500 other runners for the Community First Fox Cities Half Marathon. I wore a special pink singlet because I was chosen as one of 20 “Inspiring Women of the Race” because I was running to raise funds and awareness for the Charcot-Marie-Tooth Association.
Once the race was under way, I had worries like no other runner because I have Charcot-Marie-Tooth disorder.
CMT is the most common inherited neurological disorder, affecting approximately 150,000 Americans and 2 million people worldwide. It is slowly progressive, causing deterioration of the peripheral nerves that control sensory information and muscle function of the foot and lower leg, hand and forearm. It causes foot drop, foot bone abnormalities, high arches, hammer toes, loss of flexibility and loss of reflexes. Many functions regulated by the nervous system can be affected by this disorder. For instance, I have constantly cold hands and feet. Many people with this disorder have trouble with simple tasks like walking, opening jars and fastening buttons.
When I was diagnosed with CMT earlier this year, it actually came as a relief to have a name for the symptoms I have had my entire life. I was always a horrible runner as a child, ridiculed for being slow. Gym class was a nightmare because I couldn’t do things that other kids could do easily. When I was in college I began to run and enter races. I loved the challenge and the competition. I finished four marathons. For the first time in my life I felt like an athlete.
While I am so blessed to be able to run, CMT does cause complications. I have extremely high arches and almost no flexibility in my legs. I have been told I don’t have enough flexibility to walk properly, much less run long distances. With every stride I land on the ball of my foot and this can be very painful. The blisters I got during my first marathon were so bad I bled through my shoes.
I must concentrate on every step to avoid tripping. Sometimes I am so profoundly tired at the end of the day I want to go to sleep, not go out and train.
A friend recently asked me why I run. I run to preserve the athlete inside of me. For all the challenges that come with running, it brings me great joy. Running is a lot like life. Sometimes it’s painful, but you can’t sit on the sidelines. I run to raise money and awareness for CMT. I run to inspire others to do whatever their CMT permits. I run to find a cure because my 20-year-old niece wears braces because of CMT. No young man or women should have to wear braces.
My current half marathon time is 20 minutes slower than what I could run one only a few years ago because I am losing muscle strength due to CMT. Sometimes I am sad because of what I am losing, but I have to remember how blessed I am to be able to run when so many with CMT struggle with everyday tasks. I am inspired by them to keep going.
My next goal is to run the 2012 Boston Marathon to bring awareness of CMT to a wider audience. I have run four marathons and hope to qualify for Boston next fall at another marathon.
My running and other fitness activities have kept me strong. I will need this strength as I strive for my goal to qualify and run the Boston Marathon for those with CMT that can’t.
Chris Wodke lives in Milwaukee where she works as a training supervisor for We Energies. She is a triathlete, long distance runner and a member of the Crystal Ridge Ski Patrol. To help her raise funds for CMT research, go to secure.charcot-marie-tooth.org/Chris.php/.
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