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Friday, January 24, 2014

On Being a Fraud



Paratriathlon National Championship Austin 2013

"Don't let the noise of other's opinion's drown out your inner voice."- Steve Jobs

I knew it would happen sooner or later.  I knew it was just a matter of time before someone questioned whether or not I have CMT.

Sometimes it's subtle, I catch doubt on the edge of a remark. Someone will say I can't believe you can run or your legs look so strong.

Right after Christmas I was following and contributing to a Facebook discussion.  A mom had posted she was trying to decide if she and her son who both had CMT should try ice skating.

Opinions came in from all sides. People shared their opinions and experiences. Someone posted that since the skate was laced tightly to your leg having CMT did not matter.  I shared how muscle weakness, weak ankles and balance issues caused from CMT lead to challenges for most of us affected by CMT when we try ice skating.

I posted that my niece who has CMT was a really good skater as a child but wears braces now. I also shared that as a kid my ankles were so weak I could not stand on skates, but that running had made my ankles stronger and I can now skate. Yoga has also helped with balance.

That is when the accusation came from Josh

"I'm going to go on the record that every time someone says "I have CMT, but my ankles got stronger by running" that person is probably misdiagnosed or has a very minor neuropathy. Running is something very rave for someone with CMT and getting stronger is a myth. We have a degenerative disease people."

He said it indirectly, but he was calling me a fraud or un-informed.

Last year when my neurologist asked to have me genetically tested I readily agreed because I knew this day would come.  She thinks there is something special in my genetic make-up because I am so strong despite having an obvious case of CMT. I know my life long activity has kept me strong. So I don't think there is anything special about me genetically. Just a strong will and a long history of involvement in sports like running.
So yes genetic tests confirm I have CMT. Two very painful nerve conduction tests confirm I have CMT. In fact I have almost no nerve conduction in my arms. That means significant nerve damage.

Josh is seriously un-informed. The work of Dr. Chetlin has shown those affected by CMT can get stronger from exercise.

I also shared some of the things I experience with CMT and that on Team CMT we have 37 CMT affected athletes, many that run and run long distance. Two of us will run the Boston Marathon this year. Four others have completed the Iron Man Triathlon. Many of our members run long distance races.

I shared that my own dad is in a wheelchair due to his CMT and that I run to stay strong and avoid the same fate. I have chosen not to wait for my CMT to get worse.


Not one to stop while ahead Josh followed up his comment with another post.

"Oh....so I'm sitting around just hoping, eh?  So you know me?  I''ll take it to the next level and say you may be genetically diagnosed, but you have very little understanding/empathy for those who are actually debilitated by the disease. It may not be nice, but screw you and your elitist view. You enjoy your running around while you can and I sincerely hope you don't encounter someone like me who will quickly take away that entitle smirk off of your face."

The comments surprised me. They hurt and made me angry. I have seen this attitude a few times in the CMT community. Some think there is some kind of disability scale. Because you are more affected you can be as rude and angry as you like. Someact like this gives them the right to lash out in anger.  Apparently Josh's anger extends to threatening me.

I expect ignorance and rudeness from those that do not have CMT, I never expected to find it within the CMT community.  The really disturbing thing was that someone else had liked his comment.

I remember a women  made some beautiful awareness bracelets she had up for sale on eBay. She had posted a link in one of the CMT Facebook groups. Someone attacked her because it was not going to help them directly. So here was someone using her talent to try and make a difference and she too was verbally attacked.

When the Bernadette movie came out I remember a facebook discussion saying negative things about her efforts.

We all need support. Everyone that has CMT is affected in ways that profoundly affect their life. We are not graded on a curve. You do not get to be verbally abusive and rude because your CMT is worse than mine.

As we continue to raise awareness more people with mild cases of CMT will be diagnosed and being active will be more common. Will they be allowed to be part of the CMT community? Or will they not be disabled enought for some?  CMT is such an individual disease with a wide range of symptoms. I hope there is room for everyone in this community whether mildly or severly affected.

I made a choice early on to stay positive. I believe my ability to run and be active is a gift. My Team CMT members and I run for those that can't to raise awareness of CMT and money for research.

So Josh maybe you  and others like you need to take a long look in the mirror. Maybe a more positive outlook on life and treating others as you would want to be treated would make your life happier. Maybe you need to stop and remember for a minute that CMT steals a bit of my life every day just like you. Your anger and negativity can suck the life right out of someone trying to make a differnce. If you cannot do anything to help, then at least endure your CMT with grace and dignity, rather than tearing down the efforts of those working for a cure.

Even though Josh's words hurt and made me angry I will continue to be a positive role model and provide encouragement for everyone affected by CMT. I will chalk up his comments for what they are. Ignorant remarks from someone who is angry and un-informed.

******************************
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 142 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.






2 comments:

  1. how very sad that you were questioned as to your degree of CMT. It is wonderful that you can and do run even with CMT. Most of us can not. I was a ride a day bicycle rider - it was my joy. Oh how I wish I could still ride. But just cant.
    Enjoy your running for as long as you can. Hopefuly CMT wont take that away from you. I think that the young man who was so upset with you was very resentful that he could not run or do other things that bring him joy. And lashing out somehow makes him feel better. So sad. I am sorry that you had to get the brunt of his anger.
    You just go on running and give encouragment to lots of us who also have CMT.
    Thank you

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  2. I carry the burden of having a disease that is often not visible to others. I look normal. I recently ran a marathon. But I don't walk normal and am often made fun of for my loud walk. My co-workers can hear me coming a mile away they say, but it's my floppy feet a result of the degeneration of my disease. I constantly drop things. It is frustrating. Do you know how many times I drop my keys on the way to my car in the morning? At least three times. I may look normal but behind that mask is a girl that is internally paralyzed with fear that she will trip while walking or embarrass herself by dropping important items in front of people. I love when I'm standing and talking to someone and just lose my balance. That is laughable...sometimes. I love sitting at my desk and suddenly overtaken with restless legs. That's always fun jumping to my feet and moving my legs around to get the painful jolts of what feels like electricity to stop shooting through them. I run, because I can. I look normal albeit extremely loud because of my floppy feet. I've had two doctor's now tell me to stop running. The second doctor and I had a wonderful heart to heart. He didn't actually tell me to stop but he gave a new and different perspective. He encouraged me to keep exercising but to consider the true benefits that running had for me. He pointed out that the risks almost didn't outweigh the benefit and he asked me to consider the possibility that the wear and tear of running might actually be contributing to a more rapid progression of my CMT. He never said stop running but felt there were other more beneficial exercises because let's face it, running is brutal on the joints and body. It's pounding. I may look normal, but I'm not. I tire easily, I trip, I have balance issues, I harbor fear of falling when I am walking, and I drop things. I've broken many things and it's especially hurtful when it's something of value or special meaning. Josh obviously has a harder reality than I do, but it's my journey, my struggle and as normal as I look I struggle everyday and I know that my future reality will be one of continued struggle and challenges. I'm still happy though for all that I'm able to do. I know it's all part of a bigger plan so I run and will keep running until it doesn't look normal...

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