I have partnered with the HNF this year as I prepare, train and race in the Leadville Trail 100 MTB race this August in Leadville, CO, widely considered one of the toughest mountain biking races in the country. Through my training and racing,  I want to help show everyone that having CMT does not mean you can’t achieve things you and others once thought were impossible. CMT may limit what my body can do, but it will not and cannot limit my goals, my will and my determination to bring a finishers belt buckle back home!

watkins In the Beginning…

What made me do this?            

First I think I need to tell you a little about myself; my name is Michael Watkins, I’m 48 years old I live in Braselton, GA I have an incredible wife, two great kids, I’m an avid cyclist (mostly recreational, my racing days are behind me) and this year I was chosen by lottery to race in the Leadville Trail 100 MTB Race August 15, 2015. The last part of that sentence is still a little bit scary for me to say considering that the race takes place high in the Colorado Rockies, is 103.3 miles long, take place at elevations ranging from 9,300′ above sea level at it’s lowest point to 12,550′ at its highest point and makes its riders climb a total elevation gain of 12,612′ all in under 12 hours. That is what my cycling buddies and I refer to jokingly as “a very busy day”, it will surely be an epic ride for all 1,400 riders, but for me it will probably be a little bit tougher. I have CMT or Charcot-Marie-Tooth Disease, a hereditary sensory neuropathy that affects the nerves in my lower legs. For those unfamiliar with CMT, the nerves in my legs are not able to transmit signals like they are supposed to and overtime this has lead to loss of feeling in parts of my legs and feet, bouts of extreme pain in my lower legs, pretty severe muscle atrophy in my calves (no nerve signals telling the muscles to move leads to the atrophy over time) and foot drop when I walk ( I wear braces or AFOs on both my legs to support my feet).

I’ve seen the LT100 in person two times to support my younger brother, a Leadville CO resident who has finished the race 5 times and also to support some friends who were chosen to race in 2013. Each time I left there I was amazed by what I saw (Wounded Warriors, amputees, a severely diabetic woman checking her blood sugar at a feeding station, a blind man riding on a tandem bike for 2) and how those people pushed their bodies way beyond their limits on that race course. And each time I thought “that’s to much for me, to long, to steep, to hard, twice as far as I ever ridden a mountain bike, etc., etc.” But like clockwork every year for the last 5 years my brother would say to me, “you gotta do it, you gotta try, it’s the hardest thing you will ever do in your life and you will love it”  And every year I wanted to try but didn’t think I had it in me..until this year.

The bike ride that changed it all

My 14 year old son Riley has CMT also, he’s had very painful corrective surgery on each of his feet over the past 2 years to help alleviate the pain he has from extremely high arches and claw toes, but through it all he played football, first for the local rec team, then his Middle School team and then last year for the 9th grade High School team. He would come home from the long summer practices and football camps and his first words were “my feet are killing me!’ but he kept playing, and started all but one game last year despite his problems. During the off season this year he told me and his Mom, “I don’t want to play anymore, it hurts to bad and I’m too slow, I just can’t do it”. Hearing this broke my heart, but I knew exactly what he was going through and there was nothing I could do about it or anything I could say to him that could “fix” it. Several weeks after his decision I was on a bike ride like I had done a thousand times on a road near my home I had ridden a thousand times and I was feeling good. Sometimes when you ride it just isn’t happening, you don’t feel it, you just want it to be over, but sometimes you feel like you could ride for days. This was one of those great days, I was thinking “I could do this all day” and it hit me, why don’t I see if I really can do this all day? Then a little doubt started to creep into my head, “it’s to long, to steep, you don’t have the legs for it, etc., etc…” But I decided then and there I was going to do this, I was going to do this to show myself I could do it,I was going to show everyone else that has CMT that if I can do this you can do this, I was going to show everyone that has ever stared at me when I’m in a pair of shorts that I could do this (sorry if it sounds like I’m angry in saying that but I can see your stares people, you need to learn to be more discreet!) and I wanted to show my son that he can do this, or things like this, sometimes we just have to work a little harder than most to get what we want and the harder you work at something the greater the feeling you have when it’s over.

Telling people my “secret”

Part of the application process for the race is sharing a story about yourself that makes you a little different than the rest, or what makes you stand out from the countless thousands that have also applied. When I saw that I thought “do I mention the CMT, do I want someone within the race organization committee to key in on this and make a big deal out of it?” because up until that point I’ve not been very vocal about my CMT at all only my closest friends, riding buddies and family knew about it. I have never mentioned it to anyone at work my entire adult life, casual acquaintances, neighbors, or the like knew nothing about it but I’m sure they thought “why is he wearing pants to a pool party, it is 97* out here ?!” I just shiver at the thought of how uncomfortable it would make us both feel, “oh, hey by the way have you ever heard of CMT? No, well I have it”, no thanks! But I figured if I’m going to do this, do it all the way, so I decided to share my CMT story on my race application. I even decided that I was going to somehow use this as a platform to both raise awareness about CMT, and to also show others with CMT that even though we may have the deck stacked against us in many facets of our lives and what others may take for granted, we have to really struggle for, but I believe we all have it in us to go beyond our limits.  Whether it is something as crazy as what I’m trying to do or taking a water aerobics or yoga class or just opening a jar of peanut butter!

My training started last month and is going well!  I will keep this blog updated with training notes, how my body is changing for the better or worse as my training progresses, as well as any CMT related issues that may or may not flare up in the next 5 months.

I will let you know how those awkward CMT conversations go with the neighbors and the mailman!

 

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