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.

    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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