After being an MSer for almost 40 years I can categorically say that it’s not only fatigue, bladder, or bowel issues that annoy me. Nor is it slurred speech, poor vision, muddled memory, or just plain falling over. The symptoms are all bad enough but by no means is that Pandora’s box of miseries the end of what I face with MS.
Because I’m not in a wheelchair and I don’t always use a walking stick, people unleash a plethora of annoying sympathetic words, sounds, and tropes when they learn I have multiple sclerosis. “Oh dear!” “I never would have guessed!” “But you look so healthy!” “Well done you!” It gets old, especially the last one. Those words make me bristle like I’ve heard nails scratching against a chalkboard.>
I don’t want to be admired for looking as though I’ve just dodged a bullet or an oncoming wheelchair. Admire me, please, for the work I do helping others with MS remember their true potential and not because I’m still standing. It makes no sense to admire me for walking. All it does is spread worry about needing to use a wheelchair.
My late mother used to remind me how lucky I was because there were others worse off than me. At the time as a 20-something I raged at her. I had multiple sclerosis - who on earth could be worse off than me? But of course, there are many with MS who ARE indeed worse off. Many people with MS have more exaggerated symptoms than me. They must deal with a greater intensity of bladder or bowel problems, or a far more pronounced and advanced degeneration of speech, vision, memory, and a whole lot more. Perhaps my mother was right all along.
What having MS truly means is that I am fortunate to be the person I am. This is why I love to help and influence other MSers. I want people with MS to remember who they once were before the worst thing that could ever happen to them, happened. To remind them that it’s just as easy to be full of shine as it is to be gloomy.
What does MS mean to me? It’s that fine line between living life or living MS. After nearly four decades I think I know where the living is and it’s not with multiple sclerosis.
This article was written by MyMSTeam member Martin as part of the Member Spotlight Series. Martin has secondary progressive multiple sclerosis and is a writer who often blogs about his experience with MS. Read Part 2 & Part 3 to Martin's story.
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