Monday, July 15, 2013

Energy Economy

"For someone with a chronic illness(es), you're busier than I am!"
I 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.