Sunday, July 13, 2014

Getting Caught by the Inevitable

I have a neuropathy called Charcot Marie Tooth, or CMT.

I have lived with it for about ten years, as paralysis overtook my feet and lower legs. I had to learn to wear braces called AFO's which allowed me to walk on feet that had become useless. Over time, as it progressed, I first used canes to augment the braces and then graduated to a rolling walker. I usually didn't make a big deal out of it, although I often put off getting what I needed until the absolutely last moment...or probably should have had it for a while.

Unfortunately, the disease is now progressing in a way that is going to present challenges of several types as time moves forward. It has been in my hands for a while, and just like my feet, I adapted as they weakened. My wife became the jar opener of the house, and I've even had to ask my kids to help me with sticky doorknobs.

Yet, now the weakness in my hands is starting to progress into partial numbness and paralysis. The saving grace up till now has been that it takes very little strength to push the keys on a keyboard, but now my fingers are starting to completely lose their ability to move in certain directions. My index fingers will no longer move toward my thumb, making the G,H,T, and Y keys real adventures. My little fingers are losing lateral motion as well.

Needless to say, this development is going to present serious challenges to my writing career. I' probably should have looked into this sooner, but I guess it's time to start exploring options involving changing my typing style, or even looking into voice recognition software since mouseclicking is getting more difficult too. Sadly, hands are not like feet nd braces will not help them.

Right now, I hate this disease with an intensity that goes beyond words. I just remind myself that if it hadn't been for CMT, I would have never been forced to sit down and write in the first place. It offers some consolation. But now it threatens to take that career away. and if I'm going to continue I'll have to figure some things out.

I'm hoping to find a workable solution. I still have some stories to tell.


  1. Please do find a way to carry on. I just read Shades & I really loved it! I am not a writer of novels, but I write for myself, journals & story attempts. I am also disabled with neuropathy, among other issues. It's important to have something to live for, or the depression drags me down to the deep dark depths. I read a great deal & this was the first book of yours I have read. Please keep writing- it is hard for me to find books that aren't the same as all the others. Yours stood out to me. Thank you for the entertainment!
    (Brandy- on Goodreads-just wrote a review for Shades)

  2. Thank you, for the kind words AND the encouragement. I do intend to keep putting stories out there, and with a little luck this should only slow me down a little. The nice thing about living in the 21st century is it makes a lot of things possible :)

  3. Yes please keep writing! For more than just the fact that I love your stories and novels. Please know that it's important for you to find a way for you personally. It is also beneficial to maintain a good distance between you and your sanity. Can't let it get too close lest you lose those brilliant and terrifying ideas. That being said, you opened up a whole new world for me in books. I downloaded Dead Stop from amazon because it was on the new ebooks list for free, so back in March of 2013. Blew. My. Mind. I had never read a zombie story before, so thank you for being my first, and I could not sleep without reading something else to distract me. Technically that's two new worlds in books for me. 1.) Zombies and 2.) Reading two books at once. I know it sounds lame, but as a stay at home mom I've never had the patience or the time for two at once. I had never set a book goal for myself before Dead Stop either, so that's 3 new book worlds. Apparently I'm bad at math. Now I have read all of your published work, e-published of course, and can't wait for more. No pressure though. All in all the best thing that an author can be is inspiring and I hope you can see that you are. Thank you for inspiring my new found love of reading, opening doors to multiple literary worlds(I lost count), and...for being the reason I sleep with a nightlight at the age of 30.

  4. Wow! Thank you very much! I will definitely try to get more stories out there. In the end, it's just a matter of adaptation...and that's one of the things life is about anyway :)