My Tough Yet Rewarding Life With Charcot-Marie-Tooth Disease

It’s not what life throws at you that determines a rewarding life, but what you decide to do with what life throws at you that brings you the most reward.

I don’t say these words lightly. It has been a very tough, but at the same time a very rewarding life. As a little boy in South Georgia, my mother called me “a little stuntman.” We lived in the country and I was always outdoors, climbing every tree and exploring all the woods and of course an occasional skinny dip with my friends in our pond. I was like a fish to water. But I started tripping a lot and having a bunch of fatigue for a boy of 9 years old. It took a couple of years of doctors and hospitals trying to figure out what was happening with me, until I found a good neurologist and was diagnosed with having Charcot Marie Tooth disease. Although I had to start wearing braces and had a lot of weakness, it did not slow me down very much. Let’s just say I went through a pair of braces about every year.

The rough and devastating time of my life was when I was 12 years old and I lost my vision. I was diagnosed with Leber’s optic atrophy, yet another inherited neuropathy. I had to give up public school and start going to the Georgia Academy for the Blind, about an hour away from my home. I had fallen into a deep dark depression which would come and go for the rest of my life, and withdrew from everyone. I had to live on campus in the boys’ dorm and I cried every night from being homesick. I just did not want to have anything to do with anyone there. But this school was the best thing that could have happened to me. The staff were so supportive and comforting to me. The swim team coach tried her best to get me to join the swim team, and I finally gave in. My coach, Ms. Wright, pushed me to do my best and telling me, as my mother would tell me, to not let any disabilities get in the way of me living my life to the fullest, as best I could. I came out of my shell and for such a small school, I got to know and love all of my friends there and to this day still talk with a lot of them.

I think everyone has a time in their life, a moment they may call their miracle or revelation. My miracle happened in my senior year at GAB, when I began to regain my vision. By the time I graduated, although not 20/20, it was good enough that I was able to get my driver’s license and years later actually got my degree, in of all things, photography. I worked one job with an advertising agency, but found out that continuing a career in photography was not feasible because of my severe colorblindness. Still, I have kept it as a side job and a hobby ever since. I think I completed photography school not just because I loved taking pictures, but to prove to myself that I could do it.

My entire life I have struggled not only with CMT and vision loss, but severe depression on top of PTSD and OCD. My other disabilities have not come close to being as devastating as mental illness, I regret that I missed out on a lot of stuff because of it. But I did not allow it to completely control my life and I moved to Kansas from Georgia in 1995 and was lucky enough to meet my best friend in the entire world, Marilyn and I still love her to this day. She had moved from Los Angeles to Kansas to in some way “find herself,” which was the same reason I had, and we just clicked as if we’ve known each other all our lives. I have traveled the United States and Mexico, did some skydiving, worked in sales, met new and wonderful people every day and have taken every opportunity to do things I perhaps thought I could not do.

But I have to say, without hesitation, that the most rewarding thing that I have done in my life has been in just helping people in whatever way that I could. My big passion has been running my Facebook page where I have had the opportunity to post information having to do with living with CMT and research updates, and the incredible stories of little children with CMT just having fun and being kids. I try to represent the entire CMT community, but have mostly talked directly with parents of kids with CMT by answering their questions. The greatest feeling I get is to be able to put a parent’s mind somewhat at ease and let them know it will be OK. My story is my story, but there are so many stories I consider to be outstanding and so inspiring. It keeps me going every day and doing what I do for the CMTA. So that’s what I put most of my time into, along with volunteering in my own community helping people in need of any kind.

I do consider my life as being rough at times, but it has been a very rewarding life.

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