" If you do good, people will accuse you of selfish ulterior motives, Do good anyways." -The Paradoxical Commandments Kent Keith.
A couple of months ago I shared with one of my co-workers I'd applied for the Mobility Impaired Division of the Boston Marathon. He told me I was a scammer. I was just like those people that park in handicap spaces that don't need to. I pointed him to the Team CMT web site, hoping he would get a better understanding of CMT and the challenges some face with living with CMT.
So this week I saw this co-worker and I asked him if he had checked out the web site. He said he did and yes he still considered me a scammer. He said I run marathons so there is nothing wrong with me.
Well a house with termites looks fine too. You would never guess there is a problem inside. The house looks perfectly fine, but it's hiding a problem deep inside. Well my nerves are being attacked just like the wood in a termite infested house. I feel a little frustrated for being so successful in working to over come my CMT.
My co-worker made an assumption because I look fine, I must be fine. If he would have asked some questions and been open to learning, he might have learned a bit about what it is like to live with CMT.
When I was first diagnosed a friend of mine who is an athlete asked me "What does it mean to have CMT?" He meant what did it mean to me personally. It is a really good question because symptoms can vary greatly in number and severity.
Having CMT means my body does not regulate temperature well. I am almost always cold. I keep my electric blanket on my bed all year round. My hands and feet are often like ice. I have to wear warmers on my hands and feet when I do my ski patrol shift and still get cold. I have to take a warm bath when I get home or I shiver for hours, even under an electric blanket and down quilt.
Having CMT means I am tired all the time. It is estimated it takes twice as much energy for a person with CMT to do daily tasks. This is due to the breakdown of the nerves. It takes the signal longer. Plus I have had trouble falling asleep my entire life. Sometimes I am awake all night. So imagine coming home to do a 9 mile run and you are so tired you just want to sleep. Imagine doing a marathon with little sleep and the energy that has to be expended to complete a race that takes 5 hours.
One of the symptoms of CMT is very very tight calf muscles. I have little flexibility in my ankles. This means my feet don't have the flexibility to run to walk correctly much less run. Plus the tight muscles set me up for injury. It is really tough to get in the training needed to be successful without getting injured.
I have a curve in my spine which is common in CMT. My hip is also rotated up and to one side. So sometimes it really feels like one leg is shorter when I run. I have a great chiropractor that is working on this and does his best to catch any injuries early.
The worst thing about the CMT is the progressive muscle weakness. Because the nerve signals slow the leg and arm muscles slowly die. Any lay off for injury or an accident can see an acceleration in weakness. I was in a bike accident some years back and saw my running time go from 7:30 to 10:00 almost overnight. So I know I am one bad accident away from not having an athletic career at all.
It may be just a matter of time, that I will be so slow it will not make sense to compete. It is tough to watch my skills go more quickly than others my age.
The muscle weakness causes foot drop. So my foot catches causing me to trip, especially when I am tired. So I have to pay attention every time I run and even more so after a race.
I really don't have a choice about working out. If I don't I have leg pain.
CMT affects my hands as well, I am losing some of the fine motor control to do things like type.
I 'm not complaining. I know I am so so lucky to be running, much less in a race like the Boston Marathon. So many with this disease wear braces and have problems doing simple things like opening a jar or buttoning buttons. My CMT is considered very mild and although I run marathons and look fine I have challenges.
I didn't expect anyone to throw a parade in my honor. I'm no superhero. I am just an ordinary person with goals and a lot of drive. I never expected to be accused of having selfish motive. We all have lots of work to do to educate people about living with CMT. I know I 've seen enormous benefits from exercise. Some of my symptoms have even gotten better.
I hope most people will be inspired by the athletes of Team CMT. There sixteen athletes on the team with CMT. They bike, do triathlons and like me run marathons. Like me they have drive and a love of being active. So call us scammers if you will , but take the time to find out what a person with CMT goes through each day before you judge.
Founder & Manager Team CMT