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Thursday, February 27, 2014

Where Do I Belong?



"Every successful person in life began by pursuing a passion, usually against all odds."- Robert Kiosaki

Starts of races are always stressful for me, especially triathlons.  I stand at the edge of the water or tread water if I am lucky enough to have an in water start. Usually I am wondering how I will get through the swim.  The buoys always look so far away and I am always so tired. I wonder where I will get the energy to finish the race.

That was how it was this June at the start of the Pleasant Prairie Triathlon in Kenosha Wisconsin.  I was sitting in the water with all the other paratriathletes waiting for the gun to start the race. I had a lot to think about. I was just a few weeks out from Paratriathlon Nationals where I was denied classification. That meant no chance at the US team.

I had tried to do this race the year before, but I bailed out in the swim. I tried several times to make myself swim the course, but I was just not mentally strong enough. I gave up that day and gave in to my fears.

So I was looking at the course as I was waiting for the start and thinking all the things I usually think about. My thoughts and pre-race mental prep were interrupted when the woman next to me turned to me and said "This area is just for paratriatletes."....meaning you do not belong and you are not one of us.

I know I look normal, but I was not the only athlete in the race without a visible disability. I had met this athlete at a clinic in Chicago the March before the race.  I told her " Yes I know" meaning I know the area was for para-triathletes. Not to be put off she pressed me.  "Are you a handler?" No I told her as the gun went off. " I was in Austin last month." Meaning I was at the para-triathlon National Championship.

Not a good start to the race. Especially since I was fighting demons from failing to complete the race the year before and not classifying at the National Championship. I had to compete in the Physically Challenged Open Division. A division I won the first year and placed 2nd in this year.

But that is not good enough for me. I want respect for myself as a CMT affected athlete and for anyone else with CMT wanting to compete at the highest level. We deserve a fair and accurate assessment. I was treated like a scammer during  both assessments. I was not taken seriously. It left me frustrated and angry. Not just for myself but for every athlete affected with CMT. Several of us had the same experience in Austin.

The Paratriathlon Manager thought I should be satisfied with being in the Open Division and being able to compete. That is not enough for me. Triathlon is a way of life for me. I have a goal to compete in Rio in 2016. I have the focus, talent and dedication to make the U.S. Team. I want to compete among the very best.  The discipline and success I have had in sports carries into all parts of my personal and professional life. When I race I raise awareness for those affected by CMT. So it is not just about winning, it is about recognition for everyone that struggles with this condition day after day.

I want this for myself and for the wider CMT community. I want CMT to be recognized as a legitimate impairment. I know as an athlete how it has affected me. I know how important it is for the CMT community to have positive role models. Exercise can be life changing for someone with CMT. I know it has improved my symptoms.

The experts in the community have long advised against exercise. I have seen that start to change with my success and those of my Team CMT teammates.

I want the community to have pride in who they are. At one time those with cognitive impairments were shunned by society and existed in the shadows. When Ethel Kennedy started the Olympics she could not have know the profound effect it was have not only on this disabled community but also on how they were perceived by the public. It changed not only how the athletes felt about themselves but they became more respected and accepted members of society.

So while chasing after medals and competing may seem self centered and selfish. It is not just about fun or winning a medal. I have a purpose. I want to bring CMT out of the shadows and to make the invisible visible. I want those with CMT to be proud of who they are and not hide their condition. Sports has the power to make those kinds of changes.

Will I make my goal? Well the ITU has released the new categories and I have a shot. It will all depend on how we are assessed and what evidence they will accept. My expert Dr. Chetlin submitted a paper on CMT and assessment.  Will the ITU consider my impairment enough? The last assessor told me I was clearly impaired, just that the standard would not accept me. Those with MS were getting in and they have a right to be there, but will those of us with CMT with similar level of impairment now get in?

 I have shown I am a good enough athlete to compete with the very best.  I will find out this May where I belong. Will I be a classified athlete or will I once again be consigned to the Open Division?  Time will tell. I am still hopeful. It is all in God's hands.If I do not get in, then it just means he has something else in mind for me.  When I cross that finish line whether in Autin or Rio, it is a victory for all of us affected by CMT.

***************************
Chris Wodke
Founder & Manager Team CMT
www.run4cmt.com

Chris is a triathlete and long distance runner. She is a two time participant of the Boston Marathon.  She was the 2012 National Champion Paratriathlon Open Division. In 2013 she qualified as a member of the Team USA Duathlon Team. She will compete in 2014 at the Age Group World Duathlon Sprint Championship in Pontevedre Spain.

She is the author of the book, “Running for My Life” that details her experience as a CMT affected athlete.
Team CMT is a group of athletes and supporters working to raise awareness and to find a cure for CMT. We have 143 members in 28 states. We also have members in Australia, Canada, Vietnam, Turkey, Finland and Iran. 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/




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