2:47pm December 31, 2012

Thank you. I still exist.

To the people who insist to me I’m still a person. I know it about other people, but I’m hardest on myself. And I couldn’t stop crying this latest time I heard a reply telling me that.

I don’t totally understand my reactions to things right now. Sometimes it seems like the world is falling apart. But the world hasn’t changed. I have.

My whole life there have been huge blank spots in my mind, in places where other people generally have filled in information about the world around them. It’s played a huge part in how my variant of autism works.

But ever since the hospital there are times those blank spots expand and fill the whole world. And I’m left alone in this vast blankness.

It’s getting better. But sometimes things still hit me like that. It happened right before the seizure. And it happens now sometimes afterwards.

Sometimes I beg my friend for work to do so I can take my mind off it. But then I find that babysitting her printer while it does long jobs is actually cognitively strenuous. Not reading the papers. Just watching for the ink to run out so she can come in and change the cartridge.

I think I really do have PTSD from the hospital. I have horrific nightmares, the worst in my life, blindingly realistic. And I sometimes feel like I’m back there. And I do more crying and general terror than is normal for me. I’ve spent three doctor’s visits just getting my GP to set up more and more safeguards against the things that happened in there. I told him I have nightmares just about the pain. He said he’s not surprised.

Everyone I know says I’ve been working really hard to make my brain work more how it’s used to working, less delirium. But when I get thrown back into bits of delirium I forget.

It’s not all bad though. The night I was semi-delirious before my seizure, my friend was badly sleep deprived. And she found a statistics manual instead of a cookbook. We somehow agreed that statistics soup would have a pointy texture and taste like pencils, which is when I started really questioning the state of our brains.

I’m used to having a mind that is sporadically functional in certain ways. But this delirium has made it sporadically functional in entirely new ways. Weird ways. Ways that sometimes bring me far out of touch with reality.

My DPA told me when I was just getting over the pneumonia I suddenly became delusional. And I kept arguing with her that my hallucinations were real. I’ve never experienced a true delusion before that. And she is just glad I finally trusted her enough to believe her. But it took a week of arguing with me. I can’t imagine what the nurses thought – my doctor says they’re used to delirious people becoming paranoid, so they probably ignored it. But it was really weird and the experience shook me up.

And all this prolonged recovery from the delirium – and not all in a straight line towards better – has shaken me up too. Every time I think I’m used to it my brain pulls the rug out from under me. I’ve been delirious before but never this bad or this long. Even at my most lucid there’s stuff missing that used to be there. People say overall I’m getting better but every time I get worse I freak out.

It’s not that I can’t live with it. I can. But sometimes I fear other people’s reactions. And I fear dealing with it on my own, it can be scary when the world blips out in an unfamiliar way and I’m alone. I know I can handle it with others, it just makes me much more aware of depending on them. Sometimes I feel like I’ve turned into a wide-eyed shaking blob.

It’s hard to be objective. That part of my brain just refuses to kick into gear. I’ve always been highly subjective. Too much so. This pulls me more that way and I fight it by remembering certain things. Like dreams aren’t real and the correct phrase isn’t “everything’s gone” but “I’m confused”.

I worry people will think I’m not trying. Even though my friends say they see me trying harder than anything to stay lucid. I always knew delirium was brain damage. That’s how I understood why, after my first experience of it, I would re-experience it if I got sick or tired enough. But I feel like it’s happened so often in recent years that by this point the effect on me in my everyday life is so blatant it’s probably measurable.

I know I was born with certain cognitive impairments. I think I’ve acquired others through long-term use of neuroleptics, and bashing my head on things frequently for years. And seizures always give me temporary ones. And now I have really obvious brain damage from delirium, although it’s getting better.

Some of it seems to be learned habits, too. It’s like my brain has learned how to be delirious – whether the hard-core mind-shattering stuff or “just” fading to a blank and coasting along. It’s got into a rut where those take less energy than functioning normally. Normally for me I mean. And so it takes a concentrated effort to get it to do things that used to be automatic background stuff.

So I’ve been basically doing rehab (for lack of a less medical term) on myself, with no help from anyone medical. I imagine they wouldn’t do very well either, but I wish someone somewhere could at least guide me through this. It gets confusing and lonely making it all up as I go along.

But what I’m doing works. I force myself to read, watch Netflix, or write. Not constantly but as much as possible. I try to find things that are simple enough for me to understand, but hard enough to pose a challenge. Mostly stuff intended for children, the reading level varying day to day since my cognition seems to vary from day to day too.

Yesterday though… yesterday I could read but I felt like I was dreaming. Then I felt like I woke up with no real memory of anything I read than if it had been all a dream. I don’t know how to respond to that. Well I did respond to it. I curled up in a ball and cried. Mostly out of terror. Then I made myself work on my friend’s printer, which was easier than reading but really hard at the time.

Right now I’m writing. And that’s partly to keep doing something. I feel so tired I could… yeah. I just experimentally stopped writing and my body went limp and my mind started drifting away. Not just in a sleepy way either. Into the same nothing I keep dreading.

But I can’t convey how grateful I am to the people who’ve responded. Publicly, privately, even just hitting ‘like’. I understand that some people can’t or don’t want to and that’s okay too.

But the people who have responded to my probably quite repetitive posts about events in my brain of late… it means a lot. It means I still matter to other people even if I stay like this. Even if I can’t do “real” writing about Important Topics ™. Right now that kind of writing makes my brain feel like it’s traveling through cheesewire. Both to write and often to read.

And I just read something by someone who said they knew I still mattered and it made me cry again. I’ve long feared that people only cared about me if I was strong and competent and doing Important Things ™, even though all the Important Things ™ I’ve ever involved myself in have been about the value of every person regardless of accomplishments.

I’m still working on Important Things actually, just it’s behind the scenes “easy” stuff like babysitting printers, because I can’t do the writing and stuff right now. But I’m so far not doing that in public and it’s not the usual stuff. It’s doing as much as I can, no more.

But I’ve been in this position – whether I liked it or chose it or not – of being competent, strong, doing really hard work. (Writing for me is incredibly energy intensive. I mean especially writing Important Stuff, not casual stuff. It feels like two different parts of my brain. What I am writing now is a conversation not an article and there’s a huge difference.) And I’ve always feared how people would react when I couldn’t be, or appear to be, those things. I guess that’s at the back of the mind of every workaholic.

And now. I feel very weak, and scared, and incompetent, and confused. And I know I’m working hard at relearning how to use my mind. But that’s not something you can see unless you know me well. I’m on a lot of medications that are keeping me alive but impairing my thinking, judgement, and emotional stability. I cry really easily and I can’t hide it very well. And even though I’m strong in some ways I feel kind of fragile and strange.

But I’m still me. Everything that makes me who I am at the deepest level is still here. And Peter Singer is a fucking asshole because I was still here even when I was so discombobulated I couldn’t have opinions or anything. But I knew he was an asshole anyway.

I can’t concentrate anymore. My mind is all scattery. I just want to say. Feeling weak and not very competent and confused and scared. It doesn’t make me any less. I know I’m a mess right now. But I’m doing the best I can. At life in general. And that’s all anyone can do, I think. Whether this ever fully goes away or not. Whether it gets a lot worse. Either way. Still here. Still matter. Still grateful for people who say that outright.