1:56pm May 21, 2012

I’ve been watching Sabine on Netflix.

I am finding it really difficult.

It’s a documentary type thing so it’s all real as far as I know.

Part of it is the comparisons. They intersperse footage of her from when she was younger and passed at least somewhat better, and from now. She lost some abilities and gained a lot of weight. And I keep thinking how much I hate when people hold me up against who they think I used to be and find me wanting. It is a really maddening feeling.

Also there is the group home and that part is the hardest in many ways.

She’s exhausted all the time and she wants to rest and they just prod her to do more and more. I remember being on a toxic dose of Clozaril and being expected to function. If I went in my room and laid down it was psychotic withdrawal. Sometimes they’d force me to sit on the couch in the living room. I couldn’t stay awake there either. I sat down at noon and in an instant the sun was down and there was drool all over me. She sometimes looks that tired and people don’t get how hard it is to force your body to move around and do things.

And like I know in the early stages of my movement disorder. If you keep a person moving within a routine all day, you can sometimes stop it progressing any further. But once the movement disorder is entrenched enough, the benefit to doing that drops off. There’s also a huge difference between agreeing to do something like that and doing it without agreement. And the kind of meds she seems to be on really zonk you out.

But I can’t put my finger on what really bothers me about the group home. Other than. I know from recent experience what has to die inside a person to live in that situation. And I can see it in people in the movie. And my stomach flips over. It doesn’t matter if it’s the only solution they have, which it seems to be. It still requires killing that part of you. Of course after five years on a psych ward that part of her is probably heavily suppressed.

And I’ve just, all the time, I end up in situations like the DD rec program from hell last summer.

And I’m a very passive person compared to average.

But I feel like these days I have this piece inside me. Like a rod.

And it’s somewhat flexible. So you push on it and it bends.

But then it snaps back at you.

That’s the piece of me that would have to break or disappear to live in a place like that. That all the good clients at the rec program, they don’t have it. And I do. I got it from freedom. I don’t want to lose it. And watching this movie terrifies that little piece of me. Because it knows what happens.

And I don’t think they know about this in the movie.

And the thing where all the siblings leave home and she’s still there and things go into chaos. And how the world now today makes this inevitable.

And between that and the group home. And understanding things the filmmakers will probably never understand.

It doesn’t have to be like this. It doesn’t.

And it just hurts. In ways that family members and staff don’t ever know.

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