 |
| Team CMT at Bike NY, raising awarness for CMT |
" Happiness does not depend on who you are or what you have, it depends solely on what you think." - Dale Carnegie
When a Navajo artist weaves a rug, they deliberately place an imperfection into the rug. They believe that is where the Spirit moves in and out of the rug.
Weavers of oriental rugs also weave a mistake into their rugs. In these culturs there is a strong belief in the inferiority of man and the superiority of Allah. The imperfection becomes a tribute to man's reletionship to God.
In the Bible, the Apostle Paul prays for delivery from a physical weakness. He says in 2 Corinthians 12:9 when God denies his request:
"My grace is sufficient for you, for my strength is made perfect in weakness." Paul goes on to say; " Therefore I will boast about my weakness so that Christ's power may rest on me."
Why is the topic of imperfections addressed by so many different religions? Because the experience or imperfections or weakness is so universal. Almost eveyone has some burden, physical, mental or emotional that they carry.
I did not choose to be born with CMT, but I had a choice about what to do once I found out I had CMT. I never want my CMT to be an excuse for not living my life or doing the work God put me on earth to do.
Even as my physical body continues to fail, I can keep a positive attitude. I think it makes a difference in how I feel physically and how my CMT progresses.
I read often in on-line forums how many in the community hide their CMT. I want to tell them we have nothing to be ashamed of. I hope we will all embrace the fact we have CMT or any other imperfection. Our imperfections make us the strong, interesting and beautiful people that we are.
I have seen a change in the community in the last four years. I see many more starting to be open about having CMT. We need everyone to be brave and be open. I often hear you cannot solve a problem you don't acknowledge. I think we can not find treatments or cures for a disease we keep hidden.
I understand the reluctance to disclose. You take a risk when you tell friends and family about a chronic condition. I know first hand that while some will embrace you others will drop out of your life.
It puzzled me when some friends dropped out of my life when I told them about my CMT. I was the same person before I told them, Like many I was born with CMT and it has always been part of my experience with them.
It takes really work to lay the ground work for treatments and a cure. I often hear the comment from those in the CMT community they wish they had come up with the ice bucket challenge that was so successful for ALS last year.
That campaign was so successful because almost everyone either knows someone with ALS or has heard of ALS. No one will work for a cure or give money to some unknown cause. They give because they have a friend or family member with acondition.
So my challenge to the community is for everyone of us to talk about our CMT or the CMT or our family members. Do not be sad about having CMT and I know it is tough. Be open about how CMT affects your life. I have found when I am upbeat people are really interested in listening.
Be proud of how strong we all are and how well we have managed this condition. Do not rest until everyone has heard of CMT!
************************************
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. She has qualified to represent TeamUSA
at the Aquathon ITU World Championship in Chicago
in 2015.
In 2014 she was the PC Open Champion at the Duathlon National Championship. She has qualified to represent Team
In 2014 she represented the U.S.
as a paratriathlete at the Pan-American Triathlon Championship in Dallas , Texas
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.
Team CMT
is a group of athletes and supporters working to raise awareness and to find a cure
for CMT. We have 165 members in 32 states. We also have members in Australia , Scotland ,
Canada , Vietnam , Turkey ,
Finland , England 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
Keywords: Running, Running and
CMT, triathlon, triathlon and CMT, athlete and CMT, cycling and CMT,
paratriathlon, challenged athlete, Team CMT, Running for My Life-Winning for
CMT. Hereditary Neuropathy, Charcot-Marie-Tooth.
CMT and running, CMT and
triathlon, CMT and athlete, Charcot-Marie-Tooth and running,
Charcot-Marie-Tooth and triathlon, Team USA and Team CMT, Running for my
life-Winning for CMT, CMT athlete, athlete and CMT, triathlete and CMT, Boston
Marathon Bombing
No comments:
Post a Comment