I'm seeing my reactions to disability differing from moment to moment; sometimes hugely.
It has been at least a decade since playing the organ ... departed, shall we say. That was too huge and I couldn't process it, but I think I have finally just let it go. Every once and a while, I come against "Opportunity to play unbelievable instrument! Can't play it! Oh well." No cries, no struggles.
Some things, though, still make me gasp, even to cry out. If my legs get knotted up as I'm trying to do something which always used to be simple and trivial, I wig out. Like trying to put my feet under the bedclothes.
It's interesting that the organ, which was near and dear to my heart since I was aware of its existence, being a "can't" doesn't make me howl, but moving my legs, which I've been doing for only a couple more years, makes me howl when it drops into the "can't" zone.
An interesting gift, this MS experience shares... the consciousness of what is really, really, precious... because you don't howl over the loss of something that isn't precious. You may weep, but you may not howl.
A most interesting gift, it is...
To howl.
The journey with MS is often seen as a struggle with an enemy; and yet, I find that annoying as it is, it is a disease with many gifts. Some notes as I travel the Neurological Highway.
About Me
- Robert Parker
- Composer; conductor; theatrical designer; magician; your typical Yalie overachiever.
2 comments:
Sometimes it's the 'smaller' things that set us off -- the proverbial straw and camel's back, etc. What I'm trying -- experimenting with -- is that each time I find something else that I can no longer do, I think up ways to fix it. The feet in the bedclothes issue? There are devices that can be inserted under the sheets to hold them away from your feet. My latest? Forcing my totally useless right hand into doing things. Even though the fine motor control has long since vanished, there's no reason that this lazy appendage can't do other things. Anyway, howling gives you a sore throat!
I am continually amazed at the "help the differently abled" resources that are out there. And besides, we're the products of what, 4.5-ish billion years of evolution, a ***hand*** is gonna stop us? Really?
Piss us off, sure, but STOP us? And that's how we thank those billions of ancestors?
Another challenge...!
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