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My friend: Ironman athlete’s journey with Charcot-Marie-Tooth disease

Image: Courtesy of Joy Von Werder and Oviedo-Winter Springs Life magazine.

I wrote the following article about my friend Joy because I’m awed by her athleticism and courage, and because she wants to use her story to help raise awareness for Charcot-Marie-Tooth disease.  CMT is the most commonly inherited neuromuscular disorder in the world.

Joy is a premier athlete, a jogger-swimmer-biker who competes in the most intense triathlons (she’s also a personal fitness and tri trainer). These are the people who not only enter Ironman races but finish on two feet, without throwing up and consider doing it again. (Iron man definition: 2.4 mile swim, 112 mile bike, 26.2 mile run).

A certain measured degree of  endorsed “crazy” has to come with these choices.

Premier athletes seem to have built-in bulletproof mind-body discipline. They find others like them in neighborhoods, chat groups or gyms and form inner circle support camaraderie.  I find the dynamics fascinating. It’s a world I don’t want per se, nothing I’m pining away for, but I can’t help but admire and voyeur the intensity and accomplishment that hurts like hell before the finish line. (I work out 6 days a week but you won’t catch me running tri’s or marathons.)

Despite having to grapple with deteriorating muscle strength and changing balance from CMT, Joy finished the grueling  Aqua Bike event this past year.

Here’s her story….

The Great Floridian Triathlon (GFT) is a grueling iron-distance race − a 2.4-mile swim, 112-mile bike ride, and 26.2-mile run that has been known to bring even elite athletes to their knees.

So in 2007 when Winter Springs resident and triathlon coach Joy Von Werder challenged herself to complete the GFT, she did so with some trepidation. But with the encouragement of her family, who cheered her from the sidelines throughout the day, she not only persevered, she exceeded her expectations. The good news: The 44-year-old finished the GFT much more quickly than she had anticipated. The bad news: Not expecting Joy to complete the triathlon so expeditiously, her family was having dinner when she made her dramatic finish!

Fast-forward six years: Joy once again takes on the Great Floridian Triathlon. This time, however, she entered in a physical limitations para-triathlon category, the Aqua Bike (swim-bike).  Read more…Sorry, but I have to link to the magazine who published the piece.

Laura G Owens

Writer. Blogger. Essayist. My focus is wellness, social commentary and personal essays that explore the messiness of being human. Our ambivalence. Our uncomfortable feelings that when revealed, shed shame and reveal our authentic selves.

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Site last updated March 14, 2024 @ 3:00 pm; This content last updated January 7, 2014 @ 1:24 pm

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