Update on my mom, and support
My mom went back into the hospital yesterday, this being her third stay so far. I was really worried after catching her on the phone while she was sitting in the doctor’s waiting room yesterday afternoon, because she sounded so frightened and upset. Indeed, she got admitted again, and at last check had been started on a morphine pump. Sid called to give me the room phone number, and I called back last night. Thank goodness, she had calmed down and sounded in less immediate danger; earlier, she had to fight off urges to ask me to fly home quickly if I wanted to see her. I’m still pretty scared, but am not as concerned that she’s going to die from this episode. After the phone call, my heart calmed down, and I managed to get to sleep.
They’re still not sure what’s going on. The last time she had to go into the ER, Sidney took her to Pulaski hospital, instead of Radford–a very good choice. She got treated so much better, like an actual human being with some dignity. Nobody even suggested that she was wasting their time, lying about her “obvious” drinking problem. (Yeah, thinking about that one still makes me livid, and I wasn’t even there.) That’s where she is now. Two of the experienced nurses–both also local/Tutelo, which unfortunately can make a big difference in the New River Valley–working the ER also reassured her that they’d seen what she was doing before, and one of them had suffered from similar attacks herself. I don’t think it was ever explained, in either case, but the people apparently didn’t die or anything, which was kinda reassuring. One of them also assured her that a further complication she had in the ER was probably from a mismatch with some of the other antigens in the donor blood, because she’d seen that more than once.
Dr. Y. is apparently looking into basically every rare disorder, including vaguely applicable genetic ones, he runs across, including the FMF that occurred to both Bryce and me as a possibility. There may have only been one German immigrant (in the 1730s) whose surname got passed down to Mamaw, but he’s expanded the search to genetic disorders found in people of German ancestry. After her breast cancer, they are apparently trying to rule out some form of bone cancer now–particularly scary, since Mamaw’s mother died from multiple myeloma. Mom maintains that she knows bone pain, and this isn’t actual bone pain, but a more intense version of the same soft tissue/muscular thing that got her the fibromyalgia diagnosis. She is wondering about some kind of immune thing from stress, and she has certainly been under enough of that for a long time now. I can’t help but think Mom’s in good hands, having dealt with Dr. Y. when I was visiting; he honestly cares, and is both very smart and very thorough.
I also can’t help but worry that she’ll die before they figure out what’s going on. The whole thing feels like a rather bad House episode. I keep feeling like there ought to be something I can do to help, though I know there isn’t really. And, even though I thought I’d worked through that when she had cancer, I’m being forcefully reminded that the lady isn’t immortal, after all.
Yesterday evening, I got very upset at the idea of some of the practical implications of her dying, on top of everything else. It’s very human, but I still felt selfish. She has run so much social interference for me, helped me in so many practical ways, and things will be quite a bit more difficult when she’s gone. I am concerned that I will fall out of touch with the rest of the family–besides probably Sidney–and lose that whole social support network, while they don’t understand why. My RL human social support these days pretty much consists of Ingvar, Mom, and Sid, and I’ve finally had to realize that it’s not “simply” a matter of Not Trying Hard Enough.
That theme inevitably reminded me of Nana’s cousin, Jack. (Thanks to a big family, he’s actually closer to my parents in age.) Jack is pretty obviously autistic, though he’s usually just considered eccentric and very bashful. At last check, he wasn’t married, and had enough trouble talking to other people that he’s unlikely to be. He lost most of his support when his mother died. He runs the family farm, but apparently has trouble remembering to eat, and self-medicates with alcohol. Nana provided a lot of social support after Jack was left on his own, but she’s also been gone for years now; I assume that some of the other relatives are filling in now, and I hope Jack is still getting help with his needs. While I don’t need as much assistance as Jack to look like I’m functioning well, I think I can understand what he’s been going through. Sometimes I feel bad about needing more support than most people seem to, but I shouldn’t blame myself any more than I would Jack.
This sort of thing is also why I get so disgusted at the way the idea of a Dread New Autism Epidemic gets pushed. AFAICT, there has never been a shortage of people on the Spectrum in my family; most of them are still just considered eccentric, and rarely in a bad way. I hardly even qualify as eccentric. I got the “Aspie Bounce” (and dyscalculia, and…) straight from Nana, and Jack is not the only obvious one among her family. Three of their uncles also never married, and I have my suspicions there. I would not be at all surprised if my grandparents’ getting together were another example of the familiar looking appealing in a comfortable way, since Granddaddy and a lot of his family have also been somewhere on the Spectrum. My aunt didn’t speak until after she started school. People’s whole neurological wiring and personalities have not been pathologized. They continue to be treated as valuable people. To my knowledge, I’m the only one in the bunch using the “autism” label at all.
Epidemic, my bony neurodivergent ass. Hmph.