Wednesday, February 10, 2010

Temporarily Abled

I'd like to start out by saying that I do feel kinda silly writing this. I worry that I always sound like I'm complaining or whining, that my life and what I am able to do does not look the same from the outside, which means I shouldn't vent this stuff, that I don't have permission from... society? to express this. But lately I've been reading more and more about people living with disability, especially hidden disabilities, from the people themselves, most notably on Feministe and Three Rivers Fog. Not only has it raised my consciousness in dealing with and looking at those who do and do not fit our stereotypes of atypical ability and atypical neurological states, but it has also allowed me to contemplate the ways that I might not currently be as abled as I might be expected to be. I hope that makes sense. I'd don't know all the right terms, but I think it makes sense.

For a while now, I've recognized that I spend large chunks of my life planning for when my life will really begin. While I've been thinking lately about one small segment of my life in particular, that of working a paying job, I seem to be bumping into some of the same issues. First, I had to get my meds straightened out. Then, it was just hard to find a job. Next, Gram passed and I stayed in Slightly Larger Midwest City to help my uncle who was undergoing a treatment there. Now, as my uncle gets chemo in his hometown, I'm commuting the four-hour roundtrip to help him when he gets chemo and playing homemaker when I'm home. Though I might have heard it before and just tuned out, I was told last week that my uncle will likely be on chemo either for the rest of his life or until his body can't handle it anymore, so I'm not thinking that this commute will end anytime soon.

But when I honestly reflect on my last ten years of employment history, ok so all of my employment history, I haven't really been able to commit to anything for a long period of time. The best I've been able to eek out were two one-year stints at part-time jobs. There are various reasons behind this, though a great many of the times I quit jobs had to do with symptoms of my issues with depression and/or bipolar disorder. The biggest of those symptoms was disordered sleep. That hasn't gotten any better and is the biggest issue that I see in any job-seeking future.

For awhile, I thought the root of the problem was getting to sleep. And it is a part of the problem. But when I take an honest look at it, I have times when I sleep 24, or even 48, hours, straight through. At the very least, when I don't force myself to get up, I sleep about twelve hours. Now, for as much as I know a great many people who'd love to be able to sleep that long, ever, it really isn't normal and it definately isn't condusive to working an outside the home paying job. I have, to a certain extent, been able to get when I go to sleep under control, when I want to, when I take the time and thought to really plan taking certain meds at certain times and then making a point of relaxing after that. Oh, yeah, unless my legs start acting up and then I'm screwed. But getting up on time is.... well, I'm barely able to do it. With the exception of my uncle's chemo days and then I'm on it.

Which leads people to tell me to just FORCE myself to get up on time, to pull myself up by my bootstraps and be like a normal person. I mean, if I can do it for my uncle's chemo day, why can't I do it for other days? For a regular job? Or an irregular job? Well, mostly because that takes alot out of me. Friday I slept all day, until about 9pm. I was only up until about 3am until I went back to sleep and didn't get up again until I was dragged out of bed at 8:40pm. I also slept for over 12 hours on Sunday. I was up all day Monday, only to sleep 25 hours on Tuesday. So being up to make sure my uncle is on time and has company meant that I slept through the next five days. I don't mean for that to sound like I'm complaining. I'm not and it's totally worth it to be there for my uncle. BUT that's the reality of my situation.

So I'm starting to wonder if, after all this is done, all I have to look forward to is a string of mind-numbing part-time jobs, which barely pay for my meds anyway, that I keep for a maximum of a year. This really isn't alot to look forward to. When the doctor at the pulmonologist suggested I go on disability, honestly, I was kinda appalled. I guess my main thought was that I wasn't really that bad, I wasn't dis-abled enough by my condition that I was unable to work. There's also another part of me that suspects that, if I got disability, it would take it away from another person who had less resources than I. But now I'm worried that, even when the economy gets better and all this is done, I won't be able to find and maintain a paying job, even a part-time one.

Not sure what I'm looking for here guys. Guess partly just to vent and share my own experience. Maybe to find some advice or experience that I haven't heard before, though I'm not sure that exists. Fuck. Whatever.


TyRoy Washington said...

I better understand where you are coming from. But the big thing for me is, I can't help actually make your situation better. I feel bad, which is bad in and of itself. But there is more here than I can figure out. That is not your problem at all. It is mine. And I wish I knew a way that would help. Like pixie dust or something. Sounds silly but to me that is almost plausible as I can come up with. It is the Superman in me. I want to save but there is nothing I can do here but be here. And try and be a friend. Not sure if I have anything more or better to say. LYAL.

Ava said...

Thanks. I guess I'm mostly worried that there is nothing that I can do, much less anyone else, to change this situation. I also think that my biggest reasons for posting are that I wanted to see if there were any perspectives I hadn't thought of and to explain to people around me what's up.