I am mad as hell. I have the most common inherited neuropathic disease there is and no one has ever heard of it and it is called Charcot Marie Tooth. Isn’t there something wrong with that? One in 2,500 american s have this disease and I bet you have never heard of it have you? Apparently no one famous has this disease or if they do they haven’t told anyone that they have it. Which is actually very common with people who have this disease, we can almost pass for normal (if you don’t go hiking or do something that requires physical dexterity) if someone isn’t real observant or doesn’t ask personal questions. The reason we don’t talk about our disease a lot goes to the horrible problem that we all have to deal with, that problem is that being different is not a good thing! We are taught this from the time we are children in grade school and we got made fun of because of our physical weakness. I was always the slowest person around the track, I couldn’t pull my weight up with my hands on the monkey bars but because when you looked at me I didn’t look that different no one understood what was going on and trust me, neither did I. The problem with this disease is that you are not just different, life if you are gay you are different but you are not disabled. The cruel truth of Charcot Marie Tooth is that you can look the same as everyone else but you are crippled physically and kids will make fun of you no matter what the reason is that you are “different”. I spent my whole childhood trying to do as many things as the rest of the kids could do physically. The only salvation I had was that I was smart so at least I could excel in that area and I became book worm because it was my world to escape to. I do believe that growing up different is bad for everyone who feels they are different, no matter how big or how small the difference is, it is apparent to me that if you feel different you are different but there is a reality that having a physical handicap by all rights should be a worse problem to deal with that thinking you look weird or different than someone else. I do believe from watching what happens with screwed up people that they seem to have as many problems as people who can barely walk but I have a lot of trouble understanding it. I would give anything to be able to walk up stairs without pulling myself up one stair at a time and then I read about someone who can’t deal with not being beautiful. I would give all of my looks for the ability to physically function. Maybe all disabilities are the same in that they are disabling but I would give every thing I have to be ugly and be able to walk. I have a lot of trouble understanding how someone can be so screwed up over some of things they are when the rest of us are just struggling to put one foot in front of the other one, literally! If I am missing something please enlighten me as I spend my whole day trying to physically get to the store and buy my own groceries so I can live. Since I have been disabled from the age of 3 to 56 I am getting tired of the struggle, but getting tired does not mean I will give up. But those of you who have a choice please appreciate what you have that so many of us would give anything to experience. Growing different is very painful no matter what the reason but if you are not disabled I think you should learn to appreciated the beauty of having a body that works and get over the things that made you different while you were growing up if you grow up to have an able body. I would give anything to have your able body and I don’t think you would give anything to have my crippled one! People need to learn to get over the small things that kids tease you about, because once you grow up you should be able to leave those kids behind, and parents should spend a lot more time teaching kids not to be cruel. A lot of children’s problems could be helped immensely if parents really addressed the issue of their children making fun of other children. Being different as a child should not be a life sentence!
Because of the disease I was born with that made me unable to run or climb things that needed hand strength which made me very miserable as a child because I was so terrible at PE class. It doesn’t seem like that big of a deal as an adult but as a child being different, in any way, is a curse as kids aren’t honest they are mean. I am not saying that they are necessarily mean on purpose but by saying whatever they think without the filters we learn to use when we are older that from the “mouths of babes” come very hurtful statements. I was lucky to have discovered riding horses at the very young age of six and when I was riding on a horse it gave me the sense of the power and strength that running and having normal muscle strength provides to those who are not handicapped. It gave me an entry into the “normal” world by allowing me to experience being as strong and fast as the next person when I was on my horse and allowed me to temporarily escape from being handicapped. As a child that was so important to my feelings of self-worth and I thank the beautiful and mighty horse for allowing me to experience the thrill of going fast and walking on rocky trails that I would never have been able to experience on my own legs. I think that horses can be very therapeutic to anyone who can’t experience walking on their own legs in the woods, or to climb a mountain, or anything that requires the ability to walk to truly experience the joy of doing things that require legs that work. If you have a handicapped child, or even a handicapped adult for that matter, in your life that hasn’t ever experienced the joy and power that riding a horse can give you please make the effort to let your loved ones have this experience. I have enjoyed the freedom that horses gave me from the age of six on into my adult life and have had many a wonderful trail ride that allowed me to experience the beauty of nature up close and personal from the back of a horse. Freedom is the wind in my hair on the back of a strong and beautiful horse.
Me & Mary Lou on our horses