Meet your Team CMT Manager
“You must always carry an unsolvable problem in your heart.”- Persian Poet Rumi
CMT is the unsolvable problem I carry in my heart. I didn’t even know how to pronounce it when I first heard of it. The first time I heard the words “Charcot-Marie-Tooth” was when my sister emailed me her daughters were diagnosed with the condition. When I went to the web and read the symptoms I knew I had it too. I share CMT with my dad, aunt, sister and two nieces. I think several of my five brothers have undiagnosed CMT.
I was diagnosed with CMT type 1a in August of 2010. I was relieved to put a name to symptoms I’ve had my whole life. I knew 12 years ago after a bike accident that I had some neurological condition. After being tested for ALS, MS and a host of other scary conditions I decided not to pursue it. I found out from my dad several years later that he and his sister had a genetic nerve disorder. When my nieces were diagnosed all the pieces came together.
I had all the typical CMT symptoms; falls, tripping, rolling ankles, awful hand writing, difficulty running, tiredness, pain. My knees were constantly scrapped as a kid from all the falls. Every time I go for a hike I fall at least once. Although clumsy I always lead an active life. Days were full of sports with my brothers playing football, baseball and riding our bikes. Still I never felt like an athlete since I was always the slowest kid in the class and it was difficult to do many of the things I was asked to do in gym class.
When I was in college I took up running to become a better skier, an activity I still enjoy as a member of the National Ski Patrol at Crystal Ridge in Franklin Wisconsin. I started entering races, but never won. Fast forward several years and I met John Herod local long distance runner and coach. He taught me how to do speed work and I started to get faster and would sometimes win my age group in local runs. I even was the first woman finisher once in a 2 mile race. For the first time in my life I felt like an athlete.
I know I’m very fortunate to be running. Running especially long distance running and CMT do not go together. Several physical therapists have told me I don’t have enough flexibility in my legs to walk properly much less run. Many therapists still think someone with CMT can’t run. Many with CMT have been told over the years not to exercise or not to work out too hard. Team CMT is here to change that.
I quit competition several years ago, frustrated by dramatically slowing times, burning feet and blisters. I stopped competing because I was no longer competitive. Even though I battled a number of running injuries over the years all CMT related, I never stopped running because despite its challenges I love it. I always ran so I could easily return to competition and long distance running.
With my diagnosis came a great opportunity. I knew I had to use my running to raise awareness and hopefully funds for CMT because virtually no one has ever heard of CMT. My own primary doctor had never heard of it when I asked for a referral. It is so frustrating to get a puzzled look when you tell someone you have CMT. I want to put names and faces to CMT. I want everyone to be aware of this disease and the challenges we face so we can step out of the shadows.
So Team CMT was born to help me raise awareness. Since our start in April of 2010 we have grown to 119 athletes in 25 states, Canada, Thailand and Iran. We also have 24 athletes on the team in their own very personal battle with this condition. It has been so gratifying to share their stories and find they are so similar to mine. They motivate me every day.
Sometimes I think about what I have lost or what type of athlete I might have been if I didn’t have CMT.
I wonder why a 53 year old slow white woman is carrying the banner for CMT. I have to trust it is the right thing to do.
I think this quote I found in a book by Lauie Beth Jones sums things up;
“This is the deepest prayer, when you wait for answers…..when you simply wait….
and as you wait the answer comes to you if you will.
Some how you are part of the answer.”
I am pleased to represent the Hereditary Neuropathy Foundation. I am so proud of Team CMT and especially my fellow athletes who battle this disease every day. Each of us is part of the answer.