CMT and Me

CMT and me, living with Charcot Marie Tooth disease is not easy. I’m 57 years old and was diagnosed with CMT1A through genetic testing when I was 55. Of course I knew I had CMT way before then…

2 thoughts on “CMT and Me

  1. Christie Grigsby

    CMT… I know the acronyms well. I grew up hearing those letters through gritted teeth and it taught me how to resent the disease. I learned that blame and making excuses was acceptable because we were less fortunate. It was a learned family response through years of traumatizing experiences. I am 39 years old and still trying to break the generational curses. I am learning how to embrace new coping skills and how to adapt as I go because I know I won’t make it if I don’t. The disease is way to swift and progressive. I choose me over it.
    It has been 21 months since my life changed in ways I could have never imagined. I survived a total reconstruction of my right foot and ankle. I say survived because nothing else fits quite like it. The whole experience has been very surreal and surviving became my main goal. I decided to reinvent myself. I set some ground rules for myself such as making sure I was functional and practical. It was not easy learning how to walk again. The emotional toll it takes and the grief of the loss was almost unbearable for me. I went through several months of what I call a foggy depression before I decided my self pity would not get me anywhere. And I could go on and on about wheelchairs and screws but there is no need. The emotional scars are deep and very permanent.
    I watched through my husband’s eyes how awful things were. It broke my heart because there was no escaping the truth. I seen it plain as day. I knew my life was not ever going to be the same.
    I have learned living with CMT requires lots of patience and self-care. Two things I have not always been the greatest at but needed the most. I still have daily struggles that comes with having CMT because it is perpetual. My hands have been deteriorating over the last few years which was very devastating because I am a crafter. This disease challenged me to be the best me possible because it has devoured everything I loved to do.

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    1. Diane Gracely

      Christie, I’m glad you are coming to realize the effects CMT has on our lives because it only progresses and gets worse as we age. We fight a long hard battle our whole life. We can let life pass us by or we can take a stand and fight back. I had both of my feet totally reconstructed over a 3 year period and it was the best thing I could have done. It’s been 20 years and I’m still walking!! Had I not had the surgeries… I’d still be in a wheelchair. I’m thankful each and every day.

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