I just finished reading a post on a blog called Fuck MS (you should check it out, by the way). When I saw the title I smiled and laughed, because that has been my attitude from day one. And when your are dealing with an illness or disability, attitude is everything.
When my body began to go haywire ten years ago, I knew something was wrong, but everybody I went to couldn’t give it a name, which was frustrating. As the process to figure out what this was continued, my imagination ran wild, and not in a good way. When my MRI came back and I learned it was MS, the verdict actually came as a relief. That sounds silly now, but when you think it might be something like ALS, Multiple Sclerosis isn’t bad by comparison.
Then shit started happening, and the slow erosion of my mobility commenced. Through it all, my reaction to each hurdle that presented itself was annoyance and defiance, not sadness or despair. I certainly wasn’t happy that my leg started feeling like an overcooked strand of spaghetti, but pissing and moaning about it wasn’t going to change anything.
I’ve always been good at compartmentalizing things going on in my life, and I’ve placed my disability in the attic, tucked away with all the other junk that I don’t have any use for. I hate the word disability or handicap, even though it applies, because I don’t want that to define who I am. I also don’t want people thinking of me that way. I’m still the same guy I was twenty years ago, it’s just that I walk funny now, have no balance whatsoever, and can’t do a lot of things I used to. Many of the things I can’t do, like yard work, I don’t miss at all.
I didn’t always have this attitude. I use to bitch and moan about a lot of petty things, and it took becoming afflicted with MS to realize how good I had it. Family, friends, and having love in my life was something I no longer took for granted. So now, I try not to sweat the small stuff, other than the Red Sox.
Granted, I still have full use of my arms, hands and the other leg hasn’t been touched. I still work full time, still drive a car, and still maintain the standard of living we had prior to the diagnosis. None of that has changed. I can still go for walks, although I’m slower than molasses and need a cane, a brace that lifts my foot, and a knee brace.
I know statistically that there is an excellent chance I will wind up in a wheelchair some day, and I also know I won’t be happy should that day come. In some ways I am trying to prepare for it, particularly in terms of housing and career, which is the primary reason I have started to write.
Is that denial? Perhaps. Maybe my tune would change if I was in constant pain, or if more of my body was affected. But still, every day above the dirt is a good day. Having your glass half full rather than half empty is really important to not letting something like MS swallow you whole and take over your life.
As they say, ignorance is bliss, so I’ll continue living in this self-constructed cocoon as long as I can until something punctures it. Until that day comes, and I hope it never does, I’ll remember that blog title, and wear it like a shield of armor and honor: Fuck MS!