Truth And Disablity!

HAVING AN INCURABLE DISEASE IS VERY DEPRESSING, AND I DON’T FEEL SORRY FOR MYSELF

I have always had an hereditary disease that in the beginning very little was known about it and it was classified as the only non-fatal form of Muscular Dystrophy and it is called Charcot Marie Tooth Disease, I have the most common form which is early onset (means by the time I could start to walk the muscular degeneration had already started as opposed to those who don’t have this happen until they are ten to thirty years later than me) which means I have never lived life knowing any other than living with my disease. One thing I just figured out for sure, I have suspected it for most of my life but nothing you read about my disease really states it truthfully. They try to give you hope that you can get better, not cured but that you can make your body better, and that is absolutely not true and I don’t know if it is crueler to tell the truth that you absolutely cannot build up your muscles like normal people can by exercising. The best you can hope for, which is certainly better than nothing just not any more than you already have, is to balance the right amount of exercise while not doing any more than that because you can’t build up muscles like normal people can. I have never been able to climb stairs very well no matter whether I climb the same staircase once a day or once a month, I found this so mystifying and frustrating as a child as I would go up and down the stairs several times a day thinking I would get stronger like everyone else I knew did and be able to walk up the stairs normally. I never got stronger and now 50 years later I realize that has never changed. I CAN eat right and keep my weight down which I am certain is a good thing but my muscles have never gotten stronger for my whole life, the best I can obtain is better lung stamina for walking farther on flat ground. While this certainly beats being totally crippled I wish that the doctors who know I am right would quit trying to tell people that they will ever have any kind of muscle strength with this disease. It doesn’t mean you can’t function it just would save us wasting our time trying to do things that our bodies can never do. The truth can set you free, free of unreasonable expectations and allow you to have real and obtainable ones which are infinitely better!

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3 thoughts on “Truth And Disablity!

  1. So sorry to hear about your desease. You are such a strong and amazing person. Your story made me appreciate more everything I’ve got – including my physicial body. Thanks for sharing it. 🙂

    • My hope is to enlighten those who have my same disability as their is a lot of misinformation out there about it and many are younger than I and I would like to help them in the ways that I had to learn for myself. And yes you should appreciate your “physical” body for many reasons. My best friend for the last 31 years, before he died 61 last January, was paralyzed from the waist down in a motorcycle accident five years before I met him. He told me he went to every witch doctor, faith healer, whatever to try and get his legs back right after the accident. Once he found out he had to deal with having no legs he built a new and amazing life – because he finally knew the reality was that he was paralyzed from the waist down forever. He lived more, and we had much fun together, than I think most “able” bodied people have. We went sailing, snowmobiling, dune buggy riding together because those were things people with no leg strength can do. That is where knowing the truth about your disability can set you free to a point.

      • I’m amazed how much you have accomplished together with your friend. You are totally right – knowing the truth helps a lot. I think this post will be very helpful for all people, not just for people with disabilities. I used to work with disabled children as a special needs teacher. These children taught me a lot in life.

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