July 23, 2010

Every once and awhile, this disease scares me...

I know I've been lucky.  Since my diagnosis two years ago, my progress has been slow, almost benign, except for the weeks of fatigue, the more than infrequent difficulty walking, the numbness in my nethers, the confusion.
Last weekend I went to a lovely picnic put on by the local Chapter of the MS Society as part of their student summer program.  Almost everyone there was in wheelchairs or walking with tremendous difficulty.  Some used tubes in their mouths to push the remotes on their wheelchairs. Many needed help eating. It was sobering.
Today, I dragged my somewhat unenthusiastic legs over to the gym to try a workout - (I am going to beat this diabetes thing to death if it kills me!) (and I want to keep my muscles in as good shape as possible) they were dragging a bit and I was wondering if I could do it - when I passed a woman who noticed my MS walk T-shirt and said "good for you!" and explained she had MS.  She was in a power wheelchair with head support. When I told her I had MS, too, she said, "wow!  You're lucky you are still walking!". I agreed...
Coming back from my workout I joined a man in the elevator who was carrying a gym bag, so I asked him if he was just coming back from the gym, too (as I sweated profusely beside him).  He said, no, he was going later, and then he saw my T-shirt and jabbed me in the MS section of it, saying, "good for you!  I know so many people who have MS - you know Dan, downstairs?" I shook my head no.  He said "Well, he used to be okay, but he's in a wheelchair now..." I told him I had MS and he leaned forward, grabbed my sweaty head and planted a kiss on my cheek. "You poor thing," he said, "God bless you!"
I murmured something about "there are worse things..." and he said "No, this is bad enough.  My partner is so ill and she's younger than I am..."
It's like I'm getting a message from the world and the gods that yes, I should be more grateful that I am almost okay (and I am profoundly grateful), and yet, that I shouldn't count on it persisting.  Yikes.


zoomdoggies said...

You've got it, I think. Be grateful for what works, do what you can, and just take it one day at a time. One day at a time.

Che koala said...

As much a problem (IMHO) as the disease itself is the stigma associated with ms such that those doing well are all too aware (dis-ease) of how it is perceived in the broader community and often choose to hide it as much as possible as consequence.

I know many people doing very well but who keep it hidden from almost everyone they know - I can understand why but it also perpetuates a disproportionate image generally. The thing is it's much harder to avoid 'having' to 'fess up to it if your symptoms are visually apparent - yeah?