Okay, I admit it. I'm cranky as hell.
It all started with that "medical professional" to which I referred earlier this month – y’know, the one that wrecked me by not respecting my boundaries. And although I am much better than I was, the emotional fallout has been somewhat significant.
It's funny… well, not funny ha-ha and not quite funny peculiar, but I've been thinking about anger, more specifically about the angry stage of grief. I have gone from bad to worse enough times that I am intimately familiar with the grieving that has to be done when you lose yet another ability. But this one was different. In this one, I went from ridiculously well to totally screwed up and I remember thinking more than once that it helped me better understand the feelings experienced by someone who goes from being healthy to getting a diagnosis of chronic illness. It's a different kind of anger, not more or less - whether you go from healthy to not or from messed up to more messed up, quantifying emotion tends to be unhealthy. And maybe it was that I had someone to blame that distilled and focused the rage, because rage it was. An incandescent desperation tinged with fury and helplessness because although I can complain about the person, it won't give me back what they took from me. It won't give me back that ridiculously pain-free state I experienced for about two months and whereas it is possible I will get it back, right now it doesn't feel like it. Right now it feels as if someone had waved a magic wand, given me the gift of a life so outside my frame of reference that I couldn't find words to describe it and just as I'd started to believe this could be my life, the rug was yanked out from under me. Grief smacks you sideways when you least expect it.
And then there's another thing. Because just as I’d progressed somewhat, there was another thing. This one is less than a week old and involves a certain agency - which shall also remain nameless, because I'd like to believe I have a little bit of class - that has decided to randomly, instantly and what feels like capriciously take over my life. This is an agency that is mandated to help me, but which currently has engaged in a process that threatens my ability to live my life the way I currently do. So my days have been sucked into meetings, e-mailing and spending all my energy on protecting my life. And that incandescent desperation tinged with fury and helplessness is back.
As is the part of me that's a political animal, because yet again I experience that wonderful event known to so many people with disabilities, the one where the people who are supposed to help you - indeed get paid to help you - decide to screw with you. The one where they wade into your metaphorical living room - and sometimes your actual living room – and start chipping away at your existence. Nevermind that you have responsibilities, obligations, plans - you have no choice but to let them, because if you say no, the service gets removed and your ability to live your life depends on that service. This is one of the reasons having a disability is a full-time job.
I've been thinking of game theory for a while, initially thinking to describe it as my life being a Jenga game where you take away one small thing and it all falls to crap, but I think it's more than that. I think it's actual game theory. Of course, I'm not a mathematician - in fact, I sort of think I may be math dyslexic - but I looked it up. Without spending hours researching it (because I need those hours to deal with aforementioned agency), Wikipedia tells me that something-something-something-math- stuff (see? Math dyslexic) is about how "an individual’s success in making choices depends on the choices of others."
And sure, game theory can be applied to as all, but when you look at the lives of people with disabilities, it has an extra twist. Because my ability to live my life the way I do - everything from having a pee to being able to work - depends entirely on the choices of others. And when those others decide that their goals supersede mine, the incandescent desperate rage makes me wonder if my head isn't splintering into tiny pieces. It's not that I don't understand that certain things need dealing with, it is the sheer arrogance and certainty with which these others wade in and take over that makes you realize that any rights you may have been told you have aren’t rights at all, but rather privileges bestowed upon you by someone who in some way owns you. Because if they were my rights, these people wouldn’t be able to take over my metaphorical livingroom and my actual life.