Living With – Not Suffering From – Multiple Sclerosis
In the lead up to World MS Day 2017, MS & Me blogger, Trevis L Gleason gets behind this year’s theme Life with MS
It could be said that I often quip about my multiple sclerosis as a coping mechanism. “Sure,” I’m oft heard saying when someone bemoans my disease more than I do, “We’ve all got something and there ain’t none of us getting out of here alive!” Is a favorite, as well as, “Better bad breath than no breath.”
I’ve learned to take the things that MS (and life) hands me in the stride of existence. This isn’t always easy, particularly when my ‘stride’ is an MS gait which looks like I’m the monster from a bad Frankenstein remake or a hobbled gunslinger from the KO’d corral.
Perhaps I can keep up this pithy attitude for the sake of appearances, or more likely, I must in defense of my own sanity. Forsooth, “If I didn’t laugh, I’d cry… and I’ve cried enough about MS” has got to be the truest of my ironies.
My life with MS – as much as I can possibly make it – is about the living party. I get sad, have had bouts with MS-related depression and am sometimes even angry about what I can no longer do, just like anyone else who has heard the words, “You have multiple sclerosis”. But until they hang a tag on my toes, I’m going to drag them in the sand, dip them in the tide and dirty them in the garden.
Which brings me to a raspberry seed that’s been stuck in my wisdom tooth since I first moved to Ireland nearly 5 years ago. I am not a ‘sufferer’!
In press articles and reports, in biographical paragraphs and introductions, in speeches and interviews, I hear us being referred to as ‘MS sufferers’. I find that term archaic at best, arcane in all likelihood and offensive for certain.
While I will not deny that I experience and am subject to symptoms of my disease and I am affected by, and become worse (all part of definition #1 of suffer from the Oxford English Dictionary), I am not a sufferer.
I also struggle to surmount the definition of contend with MS but no one thinks to call me an MS contender. I deal effectively, cope, but the media doesn’t think to call me a coper. We remain, we are faced with and experience my symptoms but you won’t see enduror, undergoer or encounteror in print. Why then am I a sufferer??
Absurd, of course, are these awful monikers for someone who lives with a disease. And don’t get me wrong, I’m not expecting to be called a liver either! I’d simply like to be a person, like you, like your family, like the rest of our community and the world. I am a person….
Yes, I’m a person who lives with MS, but I’m a person first, last and foremost. Why doesn’t the media stop using ‘sufferer’? Because we’ve let them get away with it.
This year’s World MS Day is titled ‘Life with MS’. LIFE with MS. A successful Life with MS is all about the living part.
I call on all of us living with MS to stop people when they call us sufferers. From here on, when I see it in a paper, hear it on a radio program or see it on television, I will call, write or e-mail the offending media outlet and correct them. It is time we are seen for more than our disease. We are contributors to society, we make the world a better place for ourselves and our community, we get up in the morning and do the best we can with what we have for as long as we can.
We LIVE our lives with MS and we are people first.
Happy World MS Day 2017. May we all LIVE our Life with MS. #LifewithMS
Wishing you and your family the best of health.
Trevis’ Award-Winning book, Chef Interrupted, is in the shops now. Follow him via Life With MS Facebook page, on Twitter and don’t forget to check out TrevisLGleason.com