My Power Within
This week kicks off triathlon week. I started off the week today with a sprint aqua bike.
Here is my submission sharing how being a USA Triathlon member and triathlon have affected my life.
Making the Invisible Visible
If I could choose a superpower I always thought I would choose the ability to be invisible. For many that is not a hope but the reality of their lives with conditions that are not readily apparent. Many fight a private battle that no one suspects. That condition could be mental illness, diabetes, or like me a genetic neuromuscular condition called Charcot-Marie-Tooth or CMT. I have a gene that overproduces a protein causing the coating on my nerves to break down. People tell me I look perfectly normal. If you saw me at a race you might agree. But a house with termites looks fine too as the ants do their relentless damage. CMT also marches on doing its damage since there is no treatment and no cure.
What it means for me is foot drop that is like a break with every step of running. It is tight calves limiting my range of motion. It is muscle wasting leaving little muscle in my forearms. It also means constant fatigue and a host of other issues such as hearing loss. As a kid, I was slow, clumsy, and uncoordinated. Gym class was a nightmare. I remember being yelled at during a relay race for being slow. Despite my issues, I was always active. I even became a runner in college. It was always a challenge since it is harder for me to build up the muscle memory to learn any sport.
Although I was born with CMT I was not diagnosed until I was in my early 50s. I was shocked to learn I had a disease I had never heard of, even though as many Americans are affected by CMT as are by MS. I vowed to dedicate myself to raising awareness of CMT. I wanted to put a face and a name to this condition. So many patients were wrongly told to go home and sit quietly because any activity would accelerate their CMT. For many including members of my own family, there was shame attached to having CMT. Knowing whether you have CMT is also important because some drugs can cause a drastic acceleration in symptoms. A friend of mine did not know she had CMT. She was being treated for cancer and was given a drug. She went from training for the NY marathon to being unable to walk within a few hours. She now wears braces.
Triathlon and USA Triathlon (USAT) have been a big part of that mission. When I started running I soon discovered I could not run every day without getting injured. So I ran every other day. I swam and rode my bike on non-running days. I like a challenge and since I was already doing the necessary sports, it was time to give triathlon a try.
USAT makes it possible for me a physically challenged to compete. They are the only sport I am aware of that offers a division for physically challenged athletes at any sanctioned race. I can and I have asked for needed accommodations. I wish I could say that all race directors treated me well. When they didn’t USAT would work to educate those race directors. We still have a way to go to be fully inclusive but I know USAT will be with me as the sport continues to evolve and grow. USAT staff have been there with me almost from the beginning of my journey as a triathlete. They have given me a stage for my mission of raising awareness.
USAT has given me the ability to be a real athlete and conditions where I can grow and thrive. I have competed in multiple national championships. I am a four-time Team USA age group athlete. It still brings tears to my eyes to remember carrying the American flag given to me by the team manager as I crossed the finish line of each world championship.
I have chosen to make my CMT visible to the world when I wear my Team CMT kit in a race. When I compete I put a face and name to this invisible condition. I provide a path for others to follow. I show you can live a full life with CMT despite its limitation. I show others it is possible to be active to stay strong both physically and mentally.
When I learned of the USAT Ambassador program I quickly applied. I have been so happy to be an ambassador for the sport that has given so much to me. Any accomplishment I have had as an athlete has been on the foundation built by USAT for physically challenged athletes.
Recently I competed at Lean’s Triathlon in Hammond, Indiana. I was wearing my USAT Ambassador racing uniform and jacket. I was hanging out in transition trying to stay warm when I was approached by another woman. She said to me “I have a question and you look like you know stuff.” I had to smile because thanks to my journey as a triathlete over the last dozen years I guess I do know stuff. She was one of several athletes that day that had questions or asked advice. At the swim start, I gave a woman nervous about the swim some advice that helped me. I was happy to share the stuff I’ve learned on this journey.
I am grateful for the racing opportunities that have helped me build that knowledge and experience. Racing keeps me working out and working slows the progression of my CMT. It gives me a chance to make the invisible condition of CMT visible to the world. Thank you, USAT for the support and for giving me the chance to give back as an ambassador. Thank you, USAT for giving me a family of triathlon friends all across the country.
Founder & Manager Team CMT
a triathlete Nordic skier and long-distance runner. She is a three-time participant in the Boston Marathon. In
2012 she finished 2nd at
appeared three times at the Paratriathlon National Triathlon Sprint
Championship. She was the 2012 and 2014 National Champion Paratriathlon Open
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
In 2020 she was named a National Ski Patrol Subaru Ambassador and a USA Triathlon Foundation Ambassador.
She travels around the country raising awareness of CMT.
She is the author of the book, “Running for My Life” that detail her experience as a CMT-affected athlete, and the book “Soup Sundays, A Journey Toward Healthy Eating”.
visit her author page at:
Team CMT is a group of athletes and supporters working to raise awareness and find a cure for CMT currently has 247 athletes in 42 states. We also have members in Australia, Canada, England, Finland, Vietnam, Iran, Scotland, France, Turkey, Poland, Norway, Mexico, Wales, Ireland, and Sweden!. If you wish to join us visit our website; 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.
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