I can’t find anything related to this on search, and may have just missed it, while it’s been tricky to not only figure out where I should post, but from what perspective, which is really just another way of saying “not sure how much I’m okay with saying”. So I’m going with my own stuff, partly for context, and that should explain why anyone else’s problems are a different kettle of fish than they would be otherwise.
To start, it might have been more clear to use the word “disabilities” in the subject line, but I decided I just don’t like that word enough to put it there. Since there’s not quite another one that works though, this is about very different kinds of disability, and interacting in that context.
I'm seriously physically disabled, and probably terminal; please don't trip over the terminal part, it's far from news and truly okay. The disability, without money, any living family, and in this country, is the big deal.
I was always one of those very active, ridiculously healthy people, until. Some of you may have noticed I've mentioned multiple sclerosis (there's a story for why I avoid the acronym, but I'll use it here for brevity), or not; in any case, it's super important to say that nothing varies more wildly, and my case doesn't represent a damn thing besides my case. I know people here may have the same thing, and know others who do, and most are really going to do fine. Sure, it’s terrifying, but more often manageable and can be dealt with reasonably well. I just had to get, it seemed like suddenly, a spectacularly bad case, and it doesn't do remissions or slow down.
This means that all the little things everyone does in a quiet, easy day, while being glad of the day off, when you're healthy, are now across a spectrum from absurdly hard to I need help with that or it won't happen. This is where dependency without a net comes in, and just takes over.
Needing help is the real reason I started renting rooms out, with reduced rent for helping, although it’s since become an absolute economic necessity. I've had a few wonderful people to help, but they're gone now, for various normal they have lives reasons, with mostly going or returning to places that aren’t near geographically. Staying in touch with people who can’t just go places and have fun is also a factor, the point being I won a major lottery with things that are isolating.
About 50 times more genuinely frightening and dangerous types, users and low level con artists always show up, if you let on that you need any help, so never (make that infinite never) do that. And good people are understandably hesitant; I like that, and the wonderful people come from that pool, even though I’m upfront once I meet with someone. It does create a helluva highwire gig, and while the dangerous side is a vast but largely unrecognized concern, it’s a different direction than what this is about now. I’ve gotten very good at it anyway; my fav next door neighbor who has AIDS and I’m not sure how many kidney transplants by now, has had an eerily similar course, anyway I know now that things that may be shocking are also just par.
I don’t need actual nursing type stuff, my standard explanation is just that I can’t stand up long or walk far, and need the gimp cart at stores. Being an aggressive case means it’s getting worse too fast, and I think I’m very lucky to have cancer; good doctors aren’t trying to argue with my refusal of cancer treatment, should help paint the picture.
Now to try explaining the thread title; until around a year ago, I knew about as much about autism and Asperger’s as anyone else who’d never run into or dealt with it. The wonderful friend I posted about in that thread has moved out; while she may have a lightweight or borderline case of those things, she also has uncontrolled diabetes, and left to contend with assuring support for her own health. I’m still hoping she may come back, but she’s got enough going on to make that seem like a remote question.
Now I have two brothers sharing a room, and they both have “something”. It’s been super confusing, in all kinds of ways, starting with why I’d wind up feeling like a parent, and also jerk, because guys in their early 30s can’t keep track of ordinary shared household stuff, like say garbage day, without constant reminding, which also only seems to work haphazardly. Then the same guys are awesome and wonderful, eerily smart, and great at some things, while giving the appearance of being assholes.
I recently had a long talk with one of them – they’re very different, I’m just trying to minimize things so this post isn’t too unwieldy - and was so relieved to find out they know they’re different (seriously, I hadn’t been able to pin that down), and are familiar with people reacting the same way I have (edit: I’m just going to call them “K” and “G” for absolutely no reason besides convenience). They both are very amicable and okay with what feels to me horribly like nagging, so it was good to hear that what I think is nagging is actually helpful, less encouraging to me that it’s the preferred option. Something about remembering things being an actual effort to keep that thing in focus, and also that routine and habit will kick in, just a lot more slowly than usual, to paraphrase.
G is hysterical, and K deadly serious, with K taking on the role of supporting me and homesharing stuff more. He also built an amazing custom carrier for my cats (it works, they’re thrilled), has taken on all of some theoretically shared (I have two rooms available for rent) stuff, along with important repairs and improvements that are for real and make a difference, and just voluntarily finding extra ways to help out that are also for real. All while a slight overlap with my friend who moved out has both her and the functioning/controlled alcoholic (never mind) in the other room complaining about what an outrageous asshole he is.
The “different” thing came up for them when ADD was a huge deal, treated with ritalin, so they avoided that and haven’t pursued it medically since. During the same conversation, it came up that being part of a big family, they basically expect to wind up living with a sister I’ve never met who has a similar mystery thing. I had to give up driving, and was getting dangerous by the time I finally did, so driving is obviously key, and only K knew anything about how. That started out as iffy enough that I made mental comparisons to how much it’s safer than my driving, while he’s stuck with it and improved a lot, but has self-described focus issues that require me being a decent co-pilot. With practice and actual driving instruction (I usta be good), the improvement is impressive, but I’ll always have to keep an eye on things too, including just watching for distractedness.
After going through the autism/Asperger’s thread, I’d expected to find some correlation, but without dragging in more detail, am spooked by how much it seems to fit. It also sounds like they’d already figured the same, without formal confirmation. Both are Marines, and G pays the rent by working in the Reserves, while K is thinking of doing the same; looking for medical intervention and diagnosis now, if anything was found, would cost them a job that’s working out great. From what I can figure out, the only treatment might be therapy anyway, and there’s no coverage for that. I don’t have a reason to think either of them are depressed or anything about it, and they seem to have done a terrific job with adjusting.
I kind of, but not really, feel bad about when I tried “getting tough”, which for me is just the natural next step from “I’ve said this 50 times” to making whatever more emphatic. It was mindblowing to find that K, and apparently both of them, aren’t upset because of having figured me out better than most could, even with more time. Still, not understanding emotional and social relatability keeps me thrown off, but talking about it seems to have helped, and I may figure this out yet.
It’s probably easy to see why this has all been terrifying for me, any time between having people around who I know and am comfortable with is, and really that’s why I’m posting about it. I also have what I call a "situational" panic/anxiety disorder and ptsd, but since that's all been trumped, I usually forget about it. There’s not better answers or something like that, I’m proud of how well things are going, given the circumstances. If this was a phone call, it would’ve started “I need to talk”.
That said, any insights that may help with relating and understanding, in spite of not having diagnosis, are very welcome. I love this site and it’s full of wonderful people, so am just grateful as hell to have a safe place to talk. Oddly, these things are much easier for me IRL, but please be assured, as much as I hate the ms I can deal, and I’m very okay with death and dying, it’s just the practical stuff in the way that can be hell. Obviously, I'm learning a lot about interdependence, which is wildly better word with the "inter" part.