Jan29

From Amanda’s friend– Amanda is in the hospital

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This is Laura Tisoncik, also known as “muskie” online.

Amanda is in the hospital and has been there since this weekend. It’s nothing terribly serious (I’ll let her explain when she’s out), and she’s getting better by the day. She should be back home, and with plenty more fuel for blog posts, in a few days.

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About Mel Baggs

Hufflepuff. Came from the redwoods, which tell me who I am and where I belong in the world. I relate to objects as if they are alive, but as things with identities and properties all of their own, not as something human-like. Culturally I'm from a California Okie background. Crochet or otherwise create constantly, write poetry and paint when I can. Proud member of the developmental disability self-advocacy movement. I care a lot more about being a human being than I care about what categories I fit into.

16 responses »

  9. Perhaps this would be a good time and place for me to send a thank you. I do have a problem because I’m not sure how to thank someone for being themselves. I will try.

    Amanda, I was attempting sleep with the TV on as white noise and had it on CNN. As sometimes happens my white noise suddenly grabbed my attention, it was you. I came into the interview part way through and as I recall some different forms of autism were mentioned at the end. I was left thinking why couldn’t there be something a bit less/more? then what was mentioned. Upon waking I mentioned what I had heard and my question, my wife said Asperger’s. Upon looking into it, it fit, my life suddenly made sense, a huge gulp of fresh air. In my case a couple of co-morbids along for the ride but still what an AHA!! moment. 50 plus years of not knowing, the trials and tribulations I am sure you know well. So how do I thank you for being brave, for being a strong voice, being who you are? I don’t think I can, but I just tried. Thank you for being you.

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  16. Yeah, it’s serious, but by the time she’d written this, it was already being treated, I’d been catheterized and given enemas and laxatives and all that other crap (pun semi-intended), and was getting anti-convulsants and other meds through IV since I couldn’t eat (so I wouldn’t experience much trouble with rapid discontinuation of two anti-convulsants, which was already starting to cause problems before they caught it). I was no longer in any huge immediate danger of anything, and I was coming out of the weird delirium I was in when I got there. I was extremely uncomfortable, but I was already getting better.

    The paper you cite reminds me of what happened to me on Clozaril, though. When I was taken to the emergency room for vomiting, they gave me Ativan and crackers and sent me home, even though my belly looked pregnant by then. It was a nightmare getting it addressed as anything other than psychiatric, because once you’re considered crazy, then somehow you cease to have a body, everything’s in your mind, even if your body’s clearly way out of whack. I don’t even want to know how many people have died of neglect that way. I’ve “just” come close to death a few times and ended up with severe untreated pain for long periods because of crap like that, I can easily see real deaths coming of that kind of thing. I remember there was a paper about people with intellectual disabilities developing impacted bowels with “no symptoms”, the research was carried out through group homes, and I was thinking from my own experiences that it probably wasn’t “no symptoms”, it’s that in the DD and psych worlds there’s often a degree of medical neglect that’s stunning in its breadth and depth.

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