February 26th, 2013

asleep at mal 9/09

Thoughts on being broken

So this morning jaylake posted about starting to accept that sick Jay is his new normal. And it saddens me for him, but it also made me think about the last few years and how much I've struggled to accept that the broken is permanent. No matter what drugs, replacements for hormones/etc my body doesn't make, or treatments I try the fact is that there is no cure for any of my problems, and it is taking me a long time to get that through my thick skull.

Don't get me wrong - there are still days when I'm angry that at 46 I'm losing my memory, I am no longer independent, and I'm never going to have a job again. And I spent three years fighting actively against the problems - pushing through the pain to do things even though that made me hurt worse, refusing to accept that I'd never remember what my friends and family look like without pictures, trying to do things that were once normal and being really pissed off when I couldn't.

I think I've said before that I'd become less angry and more resigned about all the changes, and that was better for me stress-wise. But I know that wasn't really true; the resignation was just a surface layer and underneath it all I was still a seething pot of rage.

But T and I have been having a rough time of it lately (anger from me and my curling in on myself to spare him that is part of it), and that plus a visit from my mom and the useless me aftermath has had me working on figuring out how to cope better. I suck at being broken, and I've been hiding that from myself as I fight to retain some of the things I feel are a part of me. So I think this time I may be finding a better balance (at least I fucking hope so)...

I'm getting better at saying no to myself (when I want to do something but my body doesn't) and to others, and I'm trying to work out how to enjoy what's left. I don't think my broken and I will ever have a peaceful co-existence, but I'll take more acceptance and less aggro as a good thing.

I have made some progress in re-learning how to read a book which helps - I seem to now be able to retain a short to mid-sized novel if I put everything else aside and just focus on reading for a day or two. And short stories are great for me - I can read them in a few hours, so I've been doing lots of that - online, anthologies, collections... I won't remember much of what I've read for long, but it's a huge victory if I can finish something without forgetting what I was reading while I am reading it.

I'm also finding that my desire to make things is returning, albeit slowly and with bonus 'why the hell can't I remember how to do something so simple'. But I'm taking pleasure in the things I can figure out, and I'm getting better at the mechanics of sewing and to some extent following a pattern. I'll take it.

Translating the desire for new things into food has been good too - this winter we've been picking things we've never cooked before out at the farmer's market and then learning what to do with them. Sometimes they're a failure, but T remembers what didn't work and if it's because the underlying texture/flavor of the ingredient is the problem we won't try it again.

Lastly, I've been re-working my weeks to try to make my absolute need to go dancing less of a problem. I'm scheduling Saturdays and Sundays as quiet, not much planned other than the club days, and it's helping; I'm not as wrecked afterwards if I nap or stream TV during the day before dancing rather than doing housework or errands or whatever. I doubt I'll ever get over my need for dance to center myself and spend a few hours feeling like the old me; if I lose that I'll be worried that I'm forgetting who I am.

None of this is easy, and I'll still be angry and pissed off when I can't do something I think I should or want to do. And I'll probably retreat into hiding when I need to (I am still terminally shy some days) but I'm working on making it a choice rather than an undesirable outcome.

That's where I am today; tomorrow I'll probably forget I've said half of this, but such is my life. I'm doing the best I can with what I have and I hope eventually that will be enough.