The Visible Man
One of the hardest things to deal with when first diagnosed with MS is the fact that, in most cases, you're handed a life-changing diagnosis which isn't really all that noticeable to the untrained eye.
Living with an invisible disability for years
The old 'Invisible Disability' thing. And it's unwanted sibling, "But you don't look ill".
If you’re lucky you’ll be able to muddle along like this for a few years, barring the occasional relapse. This is what has happened to me, more or less.
And obviously, having an invisible disability, I have occasionally received a funny look when parking in an accessible bay before walking away with nothing more than a barely noticeable limp and dragging foot.
Becoming recognized as a disabled person
Unfortunately this is not the case any longer. I’m now instantly recognizable as a disabled person. When I walk anywhere it is with the support of two canes. And if I don’t walk, I’ll be in my wheelchair.
I’ve always been pretty comfortable being late-defined as a Disabled Person. In a lot of ways it has made me more empathetic - it’s amazing how much notice you take of issues of access, even if they only apply to you in a sideways fashion.
The importance of accessibility
When I was working in my previous job in an Arts Centre, my old boss would awkwardly ask me for my opinion about anything to do with increasing access - whether it was to do with signage or physical access for outdoor events. Whenever this happened I would always respond with, “Well, speaking on behalf of my people...”
But these issues are more and more explicitly becoming my concerns. And I’m in a new stage of my life where I can’t really hide it anymore.
There ARE positives, however. I don’t often have to ask for a seat when I need one. And if I do, I don’t feel guilty.
More than anything, when I’m in an MS clinic or attending surgery or just walking down the street, there’s always somebody who is dealing with more stuff than me.
Realizing that the world hasn't collapsed around me
And when I’m feeling rational I think about the things I’ve “gathered“ along the way - walking sticks, wheelchairs, catheters - and I realize that the world hasn’t collapsed around me. If I think back to the start of my relationship with MS these all would’ve terrified of me!
Maybe I just got punch drunk and battle-weary after almost 13 years. Or so worn down with the indignities that I’ve just rolled over.
Or maybe - and this is my preferred option - I’m just getting more belligerent in my old age. And more determined than ever to keep on keeping on.
Do you ever experience MS bloat?