The lemonade that came of that sour experience was that I became more proficient using voice recognition technology. Did that mean that possibly I could get back to doing some serious writing? Perhaps, although I know better than to get too enthusiastic as that seems to be an invitation for my disease to pick up the closest bucket of cold water and throw it on me.
I am cautiously working on some writing projects. One is a book that is fairly far along. You have to remember that, for me, something that is fairly far along must be measured differently. For instance if I’m fairly far along to the store, it means that I have been riding on my wheelchair for half an hour and am about halfway there. In writing terms, it means that I have finished the first draft of a nonfiction book. The topic is – – surprise! – – What it has been like to have a rare, untreatable, progressive muscle-wasting illness and the various ways I have found to cope with it. The book is made a little more complex since my wife also developed a muscle disease and I became a caregiver as well as a care receiver.
Once the book is finished, I plan to publish it as an e-book on Amazon Kindle and SmashWords, formats that will allow it to be downloaded and read on Kindles, iPads and other tablets and computers. I may also use CreateSpace to make it available as a paperback.
I am still deciding on a title so I won’t use it here, but here is the text I plan to use to sell the book:
Why you may need to read (This Book) right now.
Many years ago I would have loved to have found this book. I had been diagnosed with a rare form of muscular dystrophy called inclusion body myositis, and I had no idea what to expect. If could roll back time so I could have had this book then, my life would have turned out much differently. I would have done a much better job of preparing for what lay ahead, avoided being blindsided by changes I didn’t see coming, traveled more and worried about money less, hugged my wife and children more because I would have known there would come a day when I could not.
Going by the philosophy of better late than never, I have written (This Book) to give myself advice should they perfect time travel in the next few years. But if they don’t, maybe you or someone you know or especially someone you care for has been diagnosed with a disease that is going to impact the ability to function in life and this could be exactly the book you need right now.
I was diagnosed with my rare and untreatable form of muscular dystrophy in 1996, although I suffered from its effects for many years before. Just about the time I was learning to adapt, my wife went out and got her own rare and untreatable form of muscular dystrophy. Not the same as mine, she was far too original to do that. She had myotonic muscular dystrophy. But they were similar in the way they took away our ability to walk, to use our hands in a skillful manner (a serious issue since we were both artists) and they seemed to force us to rethink our living arrangements every other week. This book is about the things we learned, and that I am still learning by myself now that my wife has succumbed to her illness. I’ve shared some, but by no means all, of this information with the tens of thousands of people who have visited my Life Disabled blog. You will find links to parts of that blog sprinkled here and there, as it contains hundreds of pictures and illustrations and even videos that would be impractical to include.
I hope you find (This Book) to be interesting, sometimes entertaining, but always helpful.