My entire life, I've lived with diseases. As a toddler, the prominence of my diseases was barely notable, but starting when I was about four years old, the symptoms began to show. I have several conditions that affect my life in large ways, and many more that I barely notice anymore. The most disruptive disease that plagues me is Charcot-Marie-Tooth disease, which is a form of muscular dystrophy. CMT is mainly characterized by peripheral neuropathy and muscle atrophy, and although I don't have as severe symptoms as other kids who have the disease, it still deeply alters how I live my life. As a teenage girl, looking good is important to me. I want to fit in, and I definitely do not want to stand out for some weird deformities (which I happen to have a lot of). But because of CMT, scoliosis, and other neuromuscular, adrenal, and a thousand more reasons, I am not allowed to fit in. I'm not allowed to have a cute pair of converse or some stunning pumps, because my feet are so deformed that they do not even fit into regular shoes. I wear what my family lovingly calls my "old orthopedic, diabetic man shoes", because that's the only pair of shoes that my freakily high arch, severe hammertoes, and turned-in ankles would comply with. So, I get one clunky, out dated pair of super-wide tennis shoes and one pair of winter boots every two years. My legs are deformed, as well, with my left calf being significantly smaller than my right, and an invertied champagne bottle-look that extends from my wide upper thighs to my tiny ankles that I can wrap my thumb and pinky around. Scoliosis also plays a large role in my life. My spine is completely normal up until about a third of the way down my back, where it juts to the far left, causing my ribcage, sides, and stomach to be completely uneven. According to my parents, you can't even tell by looking at me. But I have a very strong feeling that you can. I am extrememly self-conscious about my body. From my lack of muscle that is a direct result of muscular dystrophy to the scars I have from surgeries to how bony and practically translucent my hands are, I think about how others view my body every minute of every day. I always feel too odd-shapen, too fat, too bony, too ugly to talk to. I feel as though I could never be good enough or cool enough to enjoy life like I see others doing. When I was in junior high, one of the "popular" girls in my class called me a cripple when I wanted to join in a lunch time volleyball game. That left me extremely hurt and wondering, Is that what everybody is thinking, and she was just the only one rude enough to tell me? When I watch how others deal with insecurities, I am in awe. I am severely introverted - if I never had to talk, I wouldn't. I am always astounded at how some girls, and guys too, can slap on a happy face and go galivanting around, swapping jokes and gossip and laughs with such apparent ease I almost cringe. But then, I remember that if I were just like them, where would the fun be? If I could do everything just like everyone I see and look exactly like every other girl, what would be the point? A strong arguement then ensues between the angel on my right shoulder and the devil on my left - "But," says the devil, "all teenage girls really want is to fit in and be exact facsimiles of their friends. Don't try to be different - you'll just end up looking stupid." That is a lie that's very easy to believe, trust me. But, I like to let the angel win most times. "Don't fall into that stereotype trap, Beautiful. Nothing and nobody can tell you that you are worth less than you really are. If you were supposed to look and think and talk just like everyone else, than you would have been doing that all along. But you were meant to have a special perspective and a level of understanding and sympathy that's different from the status quo - don't lose that gift, ever." There, doesn't that feel better? That voice keeps me smiling on the days when I just want to cry because I feel that I look so weird and ugly, or when I try to tell myself that I really don't need to eat today, because who wants to be fat, right? But accepting who you are and how to keep your head held high even on the toughest days is all part of maturing and growing into a successfull adult - for me, that means becoming the surgeon and medical scientist that I've dreamed of, and finding a cure for the tooth that bites the hardest: CMT.
The Tooth That Bites the Hardest
May 6, 2011