"Every one of my runners is disabled in some way. For them, the race is a double challenge that many of them never imagined they could meet. Whatever they discover along the way has been inside of them all along. What the marathon does is introduce them to themselves." Dick Traum, Amputee, Founder of Achilles Track Club
This is my second year as an ambassador for USA triathlon. I was so honored last year to be chosen to help support the sport I love. This week we were asked to post on our social media channels why we love triathlon. For me that meant some reflection and of course writing.
Just what is it that keeps me working out six days a week in three sports? What is it that gets me out of bed sometimes as early as 3 am to do a race? Why do I travel all over the country and even all over the world to compete in this sport?
When I had a coach, I remember her telling me when training got tough to remember my "why".
I love the stuff we all love as triathletes; the athletes I've met, the challenge, the thrill of crossing the finish line, or the pride of carrying a US flag as a member of Team USA.
I love the challenge of refining my skills. All of that is true, but it's not what keeps me training and racing. I have a deeper purpose in being an athlete, especially a triathlete.
The answer is actually really simple. I race to raise awareness of Charcot-Marie-Tooth or CMT and to be a role model for those in the CMT community.
CMT is a genetic neuro-muscular condition I inherited from my dad. It is very similar to MS. MS affects the spinal nerves, CMT affects the nerves in the arms and legs.
The coating on my nerves is breaking down causing muscle weakness and problems with balance and fine motor skills. Most that have this condition have difficulty walking and wear braces. They struggle to do everyday tasks like writing, opening a jar or getting dressed.
Fatigue and frequent falls are common. Advanced symptoms can include things as varied as hearing loss and breathing difficulties. I have hearing loss and breathing difficulties. Severe fatigue can make training a challenge.
There are about 160,000 Americans living with this condition. That is about the same as MS, but no one has ever heard of it. There is currently no treatment or cure. I share CMT with several members of my immediate and extended family.
When I was diagnosed in 2011, I was thrilled to have an answer to years of symptoms. I vowed to race the Boston Marathon to raise awareness and became a triathlete. I saw the fact that I was an athlete as a gift. I knew I had to use that gift to make a difference.
I founded Team CMT, a group of athletes working to raise awareness of CMT and funds for research. We've grown to over 200 members in seven countries and 34 states. We've raised $130,000 for research. I've connected to CMT affected athletes all over the world. We share the same passion and mission. It used to be rare for someone with CMT to be active, much less an athlete. That is changing as the community sees the example of Team CMT athletes.
It is so important to stay moving with this condition to retain function. My Team CMT teammates and I are role models for the CMT community. While we may have CMT, it does not have us. I want to show you can live a full and active life, even with CMT.
In 2012 I achieved a life long dream of crossing the finish line in Boston. I felt like I was carrying the expectations and hopes of many in the CMT community. The Boston run garnered lots of media interest in my hometown because I ran in the Mobility Impaired Division. It really was a great way to raise awareness. As a triathlete I often compete as a para-triathlete, it is a platform I continue to use to both educate and inspire.
Because so few know about this disease, it takes on average seven years to get a diagnosis. Now we are close to a cure for the most common type. A drug is expected to be available later this year, making it even more important for those with CMT to be diagnosed.
When I crossed the finish line in my first marathon, I felt I could do anything. I felt there was no challenge I could not meet. I feel the same way every time I cross a race in a triathlon. Every time I cross that finish line, I swim, bike and run for those that can't.. Every race is a victory, every race is a gift because some day I may not be able to run or ride a bike.
I hope that day is far in the future. I intend to savor every moment and every opportunity. Each race is a chance to educate and inspire. Each race is a chance to challenge myself to see just how far I can go and how good I can be.
We all have challenges and everyone of us is capable of meeting and defeating the obstacles thrown in our path. Triathlon has taught me I can handle any challenge. Not even CMT will defeat me. It was there all along, I just needed to race to bring it out in me.
*****************************
Chris
Wodke
Founder
& Manager Team CMT
www.run4cmt.com
Chris is
a triathlete and long distance runner. She is a three time participant of the
Boston Marathon. In 2012 she finished
2nd at Boston
in the Mobility Impaired Division. She was on the course in 2013 when the bombs
exploded.
She has
appeared three times at the Paratriathlon National Triathlon Sprint
Championship. She was the 2012 and 2014 National Champion Paratriathlon Open
Division Champion.
In 2014 she was the PC Open Champion at the Duathlon National Championship and at the Aqua bike National Championship in 2016. She represented TeamUSA at the Aquathon ITU World Championship in Chicago in 2015i, Cozumel
in 2016 and Denmark in 2018. In 2018 finishing 5th in the 60 to 64
age group.
In 2014 she was the PC Open Champion at the Duathlon National Championship and at the Aqua bike National Championship in 2016. She represented Team
In 2014 she represented the U.S. as a paratriathlete at the Pan-American
Triathlon Championship in Dallas ,
Texas USA
for the World Championship.
She
travels around the country raising awareness of CMT.
She is
the author of the book, “Running for My Life” that details her experience as a
CMT affected athlete and the book “Soup Sundays, A Journey Toward Healthy
Eating”.
Team CMT
is a group of athletes and supporters working to raise awareness and to find a
cure for CMT. We have 218 members in 39 states. We also have members in Australia , England ,
Scotland , Canada , Vietnam ,
Turkey , Finland , France, Ireland, Poland , Iran ,
Norway and Sweden . If you wish to join us
visit our web site; www.run4cmt.com or www.hnf-cure.org
CMT or
Charcot-Marie-Tooth is the most commonly inherited peripheral neuropathy. It
affects over 155,000 Americans (as many as MS). It is a disease of the
nerves that control the muscles. It is slowly progressive, causing loss of
normal function and or sensation in the lower legs/feet and arms/hands.
Symptoms
include; muscle wasting in the lower legs and feet leading to foot drop, poor
balance and gait problems Atrophy in the hands causes difficulty with manual
dexterity.
Structural
foot deformities such as high arches and hammer toes are common.
Poor
tolerance for cool or cold temperatures and many people have chronically cold
hands and feet.
Additional
symptoms may include fatigue, sleep apnea, breathing difficulties and hearing
loss.
Additional Link
Follow CMT affected Paratriathlete Timmy Dixon
http://cmtamputee.wordpress.com/
Follow CMT Author Chris Steinke
https://cmtandmesite.wordpress.com/2017/01/30/what-is-charcot-marie-tooth-disease/
http://cmtamputee.wordpress.com/
Follow CMT Author Chris Steinke
https://cmtandmesite.wordpress.com/2017/01/30/what-is-charcot-marie-tooth-disease/
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