Creative! Queer!! Autistic!!! on Nostr: I’m home now. It was better than I feared, and I’m glad I went! I wish it had ...
I’m home now.
It was better than I feared, and I’m glad I went!
I wish it had been set up as a circle discussion group, but instead it was “game night”. I just can’t relax enough to play board games - all I can think about is what needs to be done and what needs to be paid - so I just sat back and observed. Everyone seemed to be having a good time! I guess I had never thought of “support” as a bunch of people with the same problem gathering to pretend no one has a problem.
That sounds harsher than I intended. They were having a good time, and I shouldn’t begrudge them, because I KNOW everyone in that room has had a HARD time.
I just really wanted to hear people TALK about #epilepsy !
I DID get to talk to a few people individually. One was a guy who was diagnosed at 13; he woke up in the hospital, broken arm, concussion, didn't remember anything.
Another was an older lady who has seizures where she’s aware of everything, but she is unable to speak or move. I was worried for her. She had speech issues, but even while I was talking to her, I could see the left side of her face crumpling up.
I get a weird feeling on the left side of my face, too, but I don’t think it’s that extreme. But will it be, as I age?
I need to remember to bring that up w my neurologist Friday, that, and I lose my balance turning corners. I’m noticing more memory issues as well, which gave me a lot of anxiety tonight. Like, maybe I can’t be trusted to go out alone?
ALSO: I notice I am losing myself in patterns. Like, I’ll be looking at a wallpaper design, and I’ll be thinking about how the designer set up the repeat, and what would I change about it, and next thing I know, 30 minutes has passed. And no one knows I am THINKING ABOUT SOMETHING; they just see a person staring at a wall for half an hour. (This was not something that happened tonight, but that’s because I’ve been aware of it happening the last few days, ao I caught myself when I began to “go there”.)
But I am glad I went and I’ll certainly be at the next one! Everyone was SUPER NICE! We’re gonna decorate cookies at the next one and that’s something I’ll feel more comfortable participating in.
It was better than I feared, and I’m glad I went!
I wish it had been set up as a circle discussion group, but instead it was “game night”. I just can’t relax enough to play board games - all I can think about is what needs to be done and what needs to be paid - so I just sat back and observed. Everyone seemed to be having a good time! I guess I had never thought of “support” as a bunch of people with the same problem gathering to pretend no one has a problem.
That sounds harsher than I intended. They were having a good time, and I shouldn’t begrudge them, because I KNOW everyone in that room has had a HARD time.
I just really wanted to hear people TALK about #epilepsy !
I DID get to talk to a few people individually. One was a guy who was diagnosed at 13; he woke up in the hospital, broken arm, concussion, didn't remember anything.
Another was an older lady who has seizures where she’s aware of everything, but she is unable to speak or move. I was worried for her. She had speech issues, but even while I was talking to her, I could see the left side of her face crumpling up.
I get a weird feeling on the left side of my face, too, but I don’t think it’s that extreme. But will it be, as I age?
I need to remember to bring that up w my neurologist Friday, that, and I lose my balance turning corners. I’m noticing more memory issues as well, which gave me a lot of anxiety tonight. Like, maybe I can’t be trusted to go out alone?
ALSO: I notice I am losing myself in patterns. Like, I’ll be looking at a wallpaper design, and I’ll be thinking about how the designer set up the repeat, and what would I change about it, and next thing I know, 30 minutes has passed. And no one knows I am THINKING ABOUT SOMETHING; they just see a person staring at a wall for half an hour. (This was not something that happened tonight, but that’s because I’ve been aware of it happening the last few days, ao I caught myself when I began to “go there”.)
But I am glad I went and I’ll certainly be at the next one! Everyone was SUPER NICE! We’re gonna decorate cookies at the next one and that’s something I’ll feel more comfortable participating in.