I had no idea there were this many of you who stopped by “Cheese” for sad entertainment! And I have to say, the response to yesterday’s post about Breast Cancer Awareness Month and the lack of MS Awareness Month, etc., was great…shocking, but great!
My friend, HARKOO/Joyce in Maine, sent me an email with several wonderful insights (of course she’s currently on a round of Prednisone…don’t we ALL have profound insights when on that drug?!? Just kidding, Joyce!). On of the many things she mentioned was how the National MS Society depicts “The Face Of MS” in such a positive, uplifting tone…I had to think about this one for a moment.
It IS true…if you read the pamphlets and the literature out there about MS or visit many of the websites, we are bombarded with smiling and happy faces as well as stories about how “MS can’t keep me down”. And, on the one hand, they ARE inspiring…the stories give us that illusive “hope” MS ain’t so bad…we’re fighters…we can conquer all (with the right drugs, of course)…we’ve got spirit, yes we do. We’ve got spirit, how ‘bout you? Oops…I lapsed into an old football cheer from high school…
But I will admit at least for myself, sometimes when I visit these sites or read the literature, I feel guilty I am not necessarily LIKE THOSE PEOPLE…those Super Gimps with MS. I don’t always feel positive about my disease and I didn’t and couldn’t run a 26-mile marathon after being diagnosed so I could say, “MS won’t beat me down”. MS has, on some days and months, kicked my arse into submission.
I can’t claim I’m an “MS survivor” like the breast cancer survivors…I haven’t “licked” anything or “won” anything with my disease…it’s still here and it’s slowly (and more rapidly lately) been eating away at my brain. There’s no major victory or finish line to cross…the best I can say is, “I’m surviving WITH MS”, and that’s not the same as being able to say, “I won!” I’m just trying to hold my own as long as I can with as little disability as I can.
So, in certain light, I can see the NMSS focus clearly and it’s need to be a cheerleader of sorts for all the Msers out there…we DO need a certain amount of inspiration. But damn them for their subtle messages I pick up that somehow I’m “lacking”…that I’m not “hopeful” enough when I question my future…that MY face of MS isn’t one of a Super Gimp…that my disease is progressing and my life will NEVER be the same as it was a year ago or even 6 months ago. Damn them for leaving me with the sense of guilt that I am not doing enough or trying hard enough or taking the right drugs or…Damn them that MY face of MS isn’t PRETTY right now!
I have this idea for a charitable fundraiser event that might depict the “Face Of MS” in a more accurate light…or at least make ME feel better about MY MS. I’d like to see my MS Race For A Cure have some realistic obstacles for it’s participants…and pledges would go higher for the more difficult obstacles!
First, NO ONE would be allowed to simply run or walk in My Race For A Cure…choices would range from managing the 5K with a cane, walker, or manual wheelchair. Depending on the participant’s level of pledge, “extras” would be added on. There could be an eyepatch for only one-eyed vision or a blindfold just to make the idea of losing complete sight “interesting”. And if they REALLY wanted to pledge some big bucks, I’d throw on a 50 pound, lead weight belt around the waist, too.
For some people, even these items would not be enough for their money, so I might add a combo of the walker, lead belt, eye patch(s), and one roller skate. For the seriously adventuresome, every block could include spinning the participant around in rapid circles until they were stumbling, THEN send them on their way again. And how about some ankle boots that would keep the ankles from bending, making the walk more of a high stepping march event? And I shouldn’t forget hooking up the electrical TENS unit to zap voltages of electricity down legs every few steps, should I? Some participants might even want to be kept awake for 2-3 days prior to the event for simulated “fatigue factor”. Oh, gosh…and what about “forced” bathroom breaks every few blocks, but…drum roll please…NO TOILETS IN SIGHT???
Now THERE’S a true RACE FOR THE CURE FOR MS!!! Do you think I should be contacting the NMSS or thebig pharmaceutical companies and start looking for sponsors?? Naw…I didn’t think so either…