The handicapable saga of my masquerade as a healthy person.
Monday, July 15, 2013
"For someone with a chronic illness(es), you're busier than I am!"
hear this a lot, along with "Must be nice to sit around all day!" and
"You have so much time on your hands - surely there's *something* you
can do for work?"
Please understand. I would LOVE to be working. I have multiple
health curveballs trying their very daily best to battle it out and I
am tired-to-exhausted. All. Of. The. Time. Trying to keep busy is just
who I am, regardless. Boredom is a fate worse than death. Being
out of work has definitely taken a toll on my self-worth. I've been sick
most of my life and I've had lots of time to figure out how to carve
out some quality in my lack of quantity. I never know when my body is
going to trainwreck (which it does spectacularly at semi-regular
intervals), so I try to commit myself only to projects I know will be
able to take that into consideration. No one is actually
hiring for that level of unreliability, as it turns out - not for money,
not even part time. The projects I choose are all for the love and give
me that sense of purpose that we're all striving for. It's true I can
do a lot of things, just not for very long. Forget for a moment the rest
of my issues - I can't retain most of what I read or use my hands very
well. (This blog entry has taken days to write). That pretty much seals
my fate as "unemployable" in this economy.
"I just saw you singing onstage/dancing around with a marching
band!" you might say. You probably did! What you didn't see is me
sitting quietly and conserving my energy for days/weeks ahead of that
gig or being stuck in bed for days/weeks afterward. You didn't see me
duck off into the shadows to reclaim a bit of my breath and my strength
in the middle of that show only to be rendered unable to return to the
stage. You didn't see the load of work other people took on just so I
could actually take the stage with reasonably good energy. You don't
know about my plans A, B, and C for whatever level of energy I actually
end up with the day of the show. Performances are a hell of a lot of
extra work for me for something that isn't a job. (Please don't say
"It's like that for everyone" or I'll know you haven't been paying
attention.) I perform because I have to. I can't not. I've showed
up with a cane and in a wheelchair and mostly when no one knew anything
was wrong at all. It's all absolutely worth every tear and bruise and
gnashed tooth and disappointing failure to appear because it helps keep
me from perishing in my own void.