March 14, 2011

What MS means to me

The National MS Society in the US has created this blogging thing where you can write in what MS means to you. Sometimes I think they just have their heads up their respective arses, if you'll pardon my language. I THINK they were looking for positives.  It seems to be a current theme on some of these websites that you should be thinking "I have MS, MS doesn't have me" and talking about all the good stuff that comes into your life because of MS, blah blah blah.
Well, I'm as Pollyanna-ish as the next person, possibly more, and I try to see benefits in whatever life throws at me, but by GODS it is offensive when people who do not have MS come up with these campaigns. "MS means rallying around the ones you love" is an example.
Erm, don't mean to be snarky, but has anyone looked at how many of us live ALONE with MS? Hmm? And that we may not have people available to "rally around" us?  I have some lovely friends and family, don't get me wrong, but I would wear them out if I told them all that was going on with me.  They'd drop me quicker than a hot iron.  And why not?  They are all busy with their own concerns - sick parents, health crises, kid issues, rocky marriages, life. As Rick says in Casablanca, "Our problems don't amount to a hill of beans..."
But enough of that. The thing that stinks is that no matter how much you say to yourself that "MS doesn't have me", you are lying to yourself.  It has its cold fingers round your throat, right enough.  It lurks, waiting to screw up your life.  You can take care of yourself, you can eat right and smile and read positive things and breathe pure air and yet, it's there, waiting.
So hey, my approach is to just laugh it off.  Life is short. So what if I can't feel my fingers while I type this? They still type almost as well as they ever did  - today. And walking? I always preferred the sitting and having coffee afterwards anyway - it's just that now I have to plan to do it sooner. Biking? Well, unless I get a better helmet, it's over for me - balance issues - but hey, I've always wanted an adult trike.
Reframing loss is one thing, but laughing at it is even better.
Sometimes, though, it isn't so easy.  Sometimes Pollyanna leaves the building. Sometimes getting mad is the only solution, since self-pity is SO unattractive.  Which is part of the reason I tell myself I have Mad Sow - craziness notwithstanding.


Peace Be With You said...

"Sometimes Pollyanna leaves the building."

Said differently in my poem of the day which addresses when I am in an up moment (as opposed to yesterday's when I talked about the low moments), I end my poem with:

A lot gets produced
just because I think I can.
Until I cannot.


Mary K. Mennenga said...

Sorry I am one of those people yes I have m.s. however it doesn't have me. This is why I believe it's true. I'm not in control of what m.s. takes or does to me, anything I can't control I must deal with. It doesn't change who I am or what I believe. It's something I have that complicates my life that's all. I'm the same person I was before I learned I had m.s. the only thing that changed is I know it's name. All of my life I've had to make adjustments to changes in my life knowing full well that life isn't fair. It is what it is until it isn't what it once was. So I do the best I can with what I've got. To be who I've always been and will be me!

Travelogue for the Universe said...

This post hits home with me. My article, Wheelchair Repellant was rejected by the MS society even when I shortened it it was still not quite right. Even though my symptoms are relatively mild in the big picture, it sucks and knowing where it may be going sucks, and I find solace in reading others' frank accounts of losses mixed with their rants. The MonSter has me but I try to keep him at bay. Nice job.