A Boy Named Quentin

My philosophy of life can be summed up in a single sentence: “I won’t let my disability define my abilities.” Growing up in South Georgia in the seventies, I had a vivid imagination and an adventurous spirit. I dreamed of flying like my hero Superman, but I was grounded by Charcot-Marie-Tooth disease at the age of 11. Soon after, I was fitted with my first pair of leg braces, which I hated.

At the age of 12, I lost my sight due to Leber’s hereditary optic atrophy, an inherited form of vision loss. I fell into a depression and began to withdraw. I started attending the Georgia Academy for the Blind in Macon, Georgia, where I lived in the boys’ dorm. Homesick, I withdrew even further. The school turned out to be the best thing that could have happened to me. The swim team coach encouraged me to join the team, a gigantic step for a boy who wouldn’t previously allow himself to be seen in a swimsuit. My coach, like my mother before her, hammered it into my head that I could do anything I put his mind to. From then on, I looked at any difficulty I came across as a challenge to be met and mastered.

During my senior year, my home church had a prayer vigil for me, and over the next few weeks, I miraculously regained my sight. I went on to get a degree in photography, after which I began working at an advertising agency. While colorblindness cut that career short, photography remained a great hobby and outlet. My dream of flying like Superman also came true a few years ago when I went skydiving. It was just like flying.

Although my path in life has been far from easy, I have always tried to do the best I could with what I was given, and I have always extended a hand to anyone who needed help, just as others have helped me. Raising awareness about Charcot-Marie-Tooth disease has been the greatest experience of my life, allowing me to meet and become good friends with many in the CMT community. I am a member of just about every CMT group on Facebook, but my pride and joy is my own Facebook page, Quentinscause2015 (quentinscauseforcmt), where I post anything and everything to do with CMT. Other CMTers’ stories inspire me to continue doing whatever I can to raise awareness about CMT, and perhaps my story will be just as inspiring. I’ve been called a CMT Superman … I just hope I’m doing enough to deserve it.

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