Wednesday, January 26, 2011

Game Theory

   
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.
   

8 comments:

kitten said...

I should know better than to read your "cranky as hell" posts when I'm already on my way there myself.
How can we help?

Bonnie said...

I'm sorry.  I can't think of a single helpful thing to say--just I'm sorry that you're being screwed with and I hope it gets better very soon.

WarmSocks said...

I'm so sorry that you're going through this, but it's stated so well that you might consider sending a copy to the agency responsible.  Maybe the local news, too.  Management can do amazing things given the right motivation.

AlisonH said...

And those individuals would never for a second put up with what's happening to you, because they have the physical ability to avoid it.

Jocelyn said...

Oh NO!  Your last paragraph about rights versus privileges really struck me - these things should, in fact, be rights.  WarmSocks has a point - maybe the agency you're dealing with needs to read this, and the policy makers who put that agency in charge of doing what they're doing.

Julia said...

The fact that I don't understand what you are talking about suggests what a sheltered life I must lead. Can you be a bit more explicit? And does the agency in question have an omsbudsman? Is it a public agency and if so, could you appeal to one of your elected officials?

I'm really sorry about this part " And that incandescent desperation tinged with fury and helplessness is back." In addition to all the other threats that you are under, these emotions cannot be helping your health.

liz@millerhousehold.com said...

I am sending hugs and love. I wish I could send an army of clue-stickers to the agency and the health professional.

Kali Woodbridge said...

What a frickin' mess. It reminds me of my migraines when you talk about going from being totally fracked to functional and (relatively) pain-free. And then  back to fracked because of NOT ME decisions and changes. The last paragraph in particular is something I live with and struggle with re-shaping every day. It is exhausting and demoralizing.

Keep up the good work on educating people.