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asleep at mal 9/09
alumiere
Thoughts on being broken 
2/26/13 12:22
asleep at mal 9/09
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.
Comments 
2/26/13 21:03 (UTC)
We are still here, the both of us. That counts, too.
2/27/13 0:04 (UTC)
It does, a lot. I'm thankful for the good days, and trying to learn to resent the bad ones less. Even though we have hugely different problems, your writings often unlock keys to my own fail which helps a great deal.
2/26/13 23:40 (UTC)
Read, not liked, glad you wrote it, but I lack any helpful input.
2/27/13 0:02 (UTC)
That's just fine; I wouldn't wish this on my worst enemy, and there are no answers. We muddle through and remain thankful for the good days.
2/27/13 0:01 (UTC)
i'm glad you're finding strategies for dealing with these issues. i've noticed that when i figure out a plan to tackle even part of what's bothering me (very different stuff, of course), it helps decrease the stress levels; even when the problems don't disappear...
2/27/13 0:05 (UTC)
I'll keep trying (and often failing), but I'm hoping to get less bad at this at some point.
(Deleted comment)
2/27/13 18:16 (UTC)
Journals, twitter feeds to my maibox, notes, voice to text... but since I often forget I said or did something with all those I don't know to look for it. Vicious circle FTW.
2/27/13 5:21 (UTC)
I don't have anything useful to say except that I'm here and I'm listening.
2/27/13 18:20 (UTC)
Thank you.
(Deleted comment)
2/27/13 18:21 (UTC)
Thank you, and that goes for me to you as well. I'll even figure out skype or something if you want voice/video.
2/27/13 20:48 (UTC)
knowing when to retreat and take time for yourself is nothing to feel bad about, in my opinion it's kind of a skill. really glad that you are finding ways to make dancing happen for yourself.
i hope that you keep dancing and reading and tasting new stuffs. *hugs and tail wags from the monster dogs*
3/2/13 4:53 (UTC)
**gentle hugs**

Oddly, the physical Broken has been easier for me (not easy, but easier) than the mental Broken -- I don't know why I have acquired brain damage and neither does anyone else (probably a part of my brain getting rewired because of the constant misfiring signals of the trigeminal neuralgia), but to have that alteration of my Self on top of the alteration of my body has been pretty fucking hellish.

So, trust me, you have my love and sympathy there -- and still learning and growing, still trying new things, still holding onto dance as your grounding and centering points, are all really healthy and excellent things to do, even if you stumble along the way sometimes.

<3<3<3
3/9/13 20:24 (UTC)
The physical broken is tough, but I agree with you on the brain fail being the big problem. It infuriates me a lot, and I hate losing time; Transient Global Amnesia on top of the 'fibro fog' is often too much. Sadly, there's nothing that indicates when I may blank, but the physical stuff I can work on handling better.
3/5/13 3:21 (UTC)
*hugs* I wish there was more I could do to help. :'(
3/9/13 9:18 (UTC) - checking in
Hi, alumiere.

I've read this about 10 times, & have been struggling for a response that won't come off wrong, somehow. Sometimes when I'm trying to empathize I think I sound..IDK, pushy? Overbearing? I'm not quite sure what the word I'm looking for is; some combination of trying too hard & talkin' out my ass..

I understand how you feel, but only in a very small way. The back fuckup means everything is different.

I'm grateful for you making the effort to keep connecting; to keep telling those who love you what's up, & I admire your strength in trying to redefine what normal is. That shit is HARD. How excellent that even if it's basic, some sewing is going to be possible for you. That's been such a huge creative outlet that I was sorry to see it seem impossible. Reading too: taking yourself somewhere different for awhile, such a comfort. & I'm glad you dance when you can, & more glad that you are budgeting time better to make it happen for you; perhaps as you get that sorted better, you can maybe be content some days when that's not possible. Dancing is so much a part of you; but it is not all of you.

For all that you have the "broken", you still have a full life compared to many I can think of. I offer you support & my love from afar, as always, although I'm feeling seriously limited by the keyboard.

<3.
3/9/13 20:21 (UTC) - Re: checking in
Thanks.