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Free MS book — would you read this?

  • By Jade1956

    A few months ago my nerologist told me I have epilepsy. The conversation went on. He asked me if I’d heard him. I said I had but I hadn’t internalized it that way. It was just another bug to be stomped. He said bug? I said yeah, you get up at midnight and there are bugs on the kitchen floor and you stomp on several. Some run back under the fridge but that’s OK; they’ll be back and you can stomp more. That’s what MS and epilepsy and the rest of it are all about. He said, Jade, write a book!

    I started to and then I realized that my voice alone wasn’t enough. So a friend is co-authoring it with me. He doesn’t have MS. He had a different problem. He is a recovering alcoholic and drug addict. He can tell you to the minute how long he’s been clean.

    The reason I think it will work? The whole book pivots on the moment each of us found the warrior in ourselves and attacked back.

    We plan to publish it to the Kindle next summer. You don’t have to have a Kindle to read it. You can download it to your tablet or read it in the Amazon Cloud and I think there are other ways too.

    If you saw this book, Bug Stomping, The Journey of One Woman and One Man, MS and Addiction, and it was free, would you read it? We can’t afford to publish it in paper but we will provide it free to anyone who wants it. Would you?

    I’d appreciate any feedback on this so we don’t throw ourselves into writing a book that no one wants to read.

    Jade

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  • By Erin Rush Moderator

    Thank you for sharing with the MultipleSclerosis.net community, Jade1956! While I cannot speak for our members, I will say that your idea sounds very interesting and I think the general population can always benefit from learning more about conditions like MS. There are online writing communities and forums that may be able to offer more writing-oriented feedback for you and your friend. However, I think adding more information about MS to the world is a good idea! Thanks again for sharing and best of luck! Best, Erin, MultipleSclerosis.net Team Member.

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  • By Jade1956

    Thank you, Erin. Years into this disease, the hardest thing for me to contemplate is the number of newly diagnosed out there living in fear — no, terror — of what has befallen them. I want to say, look at me. I believe deeply that the best way to live the rest of your life is to cherish and savor what you have, snatch back what can be recovered, let the rest go gracefully, and above all else, find the warrior in yourself and validate yourself. Don’t call yourself an MS person; that gives MS control. Consider this a war and consider yourself tougher than any disease can be. Don’t count losses. Count victories. My most recent victory — the unmistakable pain of lactic acid build up in muscles we had all thought were done forever. A gifted PT gave me a simple exercise to do, and it woke up leg muscles that haven’t worked since 2008. But even small things are victories. We have to learn to congratulate ourselves, celebrate ourselves, and put MS in its place. I told a friend who is bipolar that I think when her depression hits, she should paint it pink, since she considers it male, tape long mop strings to its head and braid them sweetly, and take it outside and dance with it, preferably in the rain. She said she has never got far enough to dance with it because every time it comes creeping, she remembers that conversation and starts laughing. MS is no different. We can paint it our Waterloo or we can paint it an unwelcome intruder best painted pink and danced with in the rain.

    And this comes from a woman who cannot walk without KAFOs and crutches, who cannot walk with any speed, who cannot cook because her left arm drops to her side and that’s too dangerous, and who cannot shower or dress alone because she is too weak to do most of that.

    MS has taken a great deal. But it has not taken my ability to love, to laugh, and to treat every day like the best day I’ve ever had. I want the newly diagnosed and those plodding on through the years to know my secret. I’m tough, and so are they.

    Jade

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