10:34am November 1, 2012

Social stuff in the hospital and after, particularly social desire.

I can normally go a fairly long time without social contact with people, and be fine. What made it especially awful in the hospital, though, was two things:

One, time stretched out there in ways where I couldn’t tell the difference between being there 5 weeks (actual time) and being there 5 months (subjective time) or longer. This seemed to be both an effect of delirium and environment (and of course as I’ve mentioned many times before, the environment contributes heavily to delirium, such that even people who aren’t sick enough to be delirious can still experience it in that environment, just as they can in solitary confinement).

Two, being sick turns on all of my social instincts in a way that nothing else does. Unfortunately, I’ve seen parents who recognize this who actually seek to find ways to make their autistic children sick all the time so they’ll be more socially interactive. And this is despite the fact that nausea makes me respond in the opposite way (I want everyone away from me, usually). But when I wasn’t nauseated enough to be actively throwing up or nearly so, I wanted people around, and specifically people I cared about and was familiar with. I know this is an instinct that’s common to most human beings, it probably just shows up looking a lot weirder in introverted (or introverted-looking) autistic people. And delirium seems to really bring out that instinct in me, which makes sense. If some part of me knows I’m out of it, then it wants other people watching my back, presumably. But there’s also something inherently isolating and lonely about delirium, on a scale that I’ve never experienced in any other situation. So it created a version of hell where I was separated from people even if they were in the room with me, desperately lonely, and time was going so slow that every day (in which I might see people one hour out of the day, more if I got lucky and someone visited that I could actually connect to) seemed like forever.

Sometimes, though, it got better. My friend from too far away to visit had carved me a box with an ancient Egyptian goddess who, among many other things (they didn’t so much have “gods of” things, as gods that did various things, like people do), was considered a healer. She was actually a very scary and intimidating goddess most of the time, but that was still one role She played. And one of Her symbolisms was a lioness. And I ended up spending all my time curled up with that box (my other friend brought it when she visited), and sometimes it felt like there was a huge lioness curled around me. Which is when I learned that as scary as She can be, sometimes it’s good to have someone big and scary who seems to actually be on your side. Because it felt like She was watching out for anyone or anything that could hurt me. I’m sure some people would consider that part of the delirium too, but it felt real at the time, and it comforted me in no small way, so I don’t really care what it was.

I really think that box kept me sane, or as sane as you can be when you’re delirious. In addition to its symbolism, it had specific physical properties that have always calmed me down. It’s wooden, and it therefore has hard edges that I can press myself up against. That’s always been more comforting to me than soft or fuzzy things (although I also accepted the stuffed turtle that my parents long-distance ordered me from the gift shop). Things like that feel dependable. So honestly the two most important things anyone brought for me were that box and a set of prayer beads. The box made me feel protected, and the prayer beads helped me pray in a very concrete manner – really important when your mind is too fuzzed out to do it mentally. All of which helped me deal with this stuff when there were no human beings around to help me deal with it in other ways. I know this sort of thing won’t appeal to the majority of atheists (you’d be surprised about some, though), but anyone of any religious or spiritual leaning will find such things important in circumstances like that where you’re being pushed to your limit to handle things. It also helped that one friend had made me the box, and another friend made me the prayer beads, so they were also a concrete connection to my friends who couldn’t be there.

I’ve talked to other people (religious, spiritual, or none of the above) who have had experiences during delirium where they reached out for help and found that something or someone seemed to be protecting them from the scariest aspects of it. So that’s not a horrible thing to do if you find yourself in that situation, even if it seems silly. The worst that can happen is it won’t work. And whether you consider that help to be outside you or inside you almost doesn’t matter, as long as it does help. (Although I’m reminded of Harry Potter and Dumbledore – loosely paraphrased, “Is this all in my head?” “Yes, but why does that mean it’s not real?”) And minus actual people around, this is the only help I got to cope with what was happening with me. Sometimes it was more effective than actual people. So don’t knock things like this even if they sound weird, you may one day be sick enough to need them.

And sometimes people can actually help. I have one staff person who is not a friend (I won’t ever cross that boundary with staff, because it’s too painful when the high turnover rate in this field takes effect) but is in that weird no-man’s-land between staff and friend that you get when you really relate well to a caregiver. And he would come in and hold my hand sometimes, and it would help. So did a woman I’m not as close to but is still really familiar and one of the sweetest people I’ve ever met. But there was this one time when my friend, who’d been studying delirium and how to handle it, came, and something really amazing happened.

This was towards the end of my stay, when delirium consisted mostly of everything going frightfully blank. No hallucinations, no delusions, none of that sense in the earliest delirium that my brain was cracking apart in all sorts of ways that made it too incompetent to, say, come up with a consistent delusion, when all the hallucinations were visual. It was just blankness. And more blankness. And feeling like I was trapped in this place where everything was white and there was no color and I couldn’t find my way out. And my friend saw me falling into it, and she took hold of my hand. And everything fell apart except that connection we had made physically (which she told me a long time ago is a gesture of connection and caring that any ape, humans included, will understand, and that it works very deeply in our brains when it does work). I could actually for a moment see her face watching my face and registering how blank things had gone for me. And she told me verbally too, in case I couldn’t catch it. But she kept me there anchored like that until things started to come back a little.

And after she left she made me turn on the television so that I’d get some sensory input to prevent me from drifting too far. But what she did for me there, I still cry thinking about it, because it was one of the only times that someone was around who even knew enough, or cared enough, to try to break up what was happening to my brain. When she couldn’t come (it was a really expensive cab ride) she’d try to keep me oriented through Skype. (Wireless Internet connections in hospitals are more than just a luxury. They’re a lifeline to the rest of the world in a place that can otherwise be full of sensory deprivation and overload at the same time.)

Chaplains seem to try to fill some of these roles in the hospital, and some of them are absolutely wonderful people. (And I haven’t met one yet who cared what religion I was, except inasmuch as it might affect prayers.) But there just aren’t enough of them and they can’t stay very long, and they often only show up if you’re with it enough to request them, which isn’t always possible.

Anyway, it wasn’t long after that visit from my friend, that they decided to chuck me out of there – too soon, medically speaking, but my friend insisted that I not fight them on this one. What she’d seen, that visit and others, was delirium that wasn’t going away because I was in an environment that would actively foster it even in many healthy people. And she considered it worth taking the chance of my gastroparesis meds not working and having to return to the hospital, on the grounds that the sooner I got out the sooner the delirium would start clearing up.

I think she told me last night it was only about 2-3 weeks since I’ve been in there. I find it hard to believe. My mind still wants to insist it’s early to mid December and I’ve been out for months. But I really am finally starting to subjectively feel some of the delirium lifting. Although obviously it’s not gone yet, my mind is still kind of dull and it doesn’t quite think of things right.

We were talking about how a calendar is a really important thing to have in the room of anyone who’s delirious because it continually orients you towards time. And I was telling her how bad a clock is at that, because it’s cyclical, and it almost makes things worse. And then I was explaining how the second hand is the slowest hand on the clock, and the other hands have a habit of bouncing around unpredictably, whereas you look at a second hand and it’s always on this slow steady pace… and I think that rattled her a bit even though she’s used to my sense of time being weird even when I’m healthy. She said that my perception of both time and motion must be really strange. (Well yeah, that’s why moving cars sometimes disappear on me and I’m not safe crossing streets on my own let alone behind the wheel.) She said it’s sometimes hard to tell which of my time-oddness is delirium and which of it is just me.

She’s the same one who keeps making me soup now that I can’t eat food. I can eat maybe a teacup worth as long as it’s watered down enough to be less substantial than Ensure. (I’m learning for the first time in my life to eat really slowly to make food last.) The soup is purely for psychological benefit, as any soup I can keep down won’t have enough nutrients in it to live on. This isn’t a step towards eating “real food”, don’t treat it as such. But she said that being cut off from eating food also cuts me off from social experiences that our species takes really seriously, namely eating together. I told her I’ve never liked eating with people because of misophonia. And she said “That’s true, but you’ve always had the option to eat a meal with people if you wanted, and now you don’t, and that changes everything.” And she’s right. That one cup of soup a day is something I completely live for now. She said any flavor can be turned into soup, she just makes soup involving that food and makes sure it’s watered down enough and runs it through a blender if necessary. It amazes me that she’s going to all the trouble, just like I’m amazed the way she treated me in the hospital. But she says she likes soup and ought to be incorporating it into more of her meals anyway so it’s not hard to just throw some stuff in the crock pot and make soup out of it. But it’s amazing how much that tiny bit of the day where I eat soup with her has become so important, too. She was right that it’s different when you don’t have the option anymore, and it’s also different when this is your only way to taste anything other than the three flavors of Ensure Plus I can tolerate (butter pecan, vanilla, and strawberry, in order of preference). And it lets me taste umami flavors again, which I’ve been missing because Ensure is relentlessly sweet. (Umami is my favorite basic flavor.)

And you know… my experiences were nightmarish enough. But they would have been even more nightmarish without anyone I trusted or cared about being around ever. Even though this simulated that effect by stretching out time indefinitely, I still did undeniably have days when people would come and just sit there with me. One time even when I wasn’t feeling social, my friend still insisted on sitting in the room with me. I curled up in a ball and turned my back to her, but it still felt good that she was there, even though on another level I could barely tolerate her presence. It was weird. (And I don’t want to think what would have happened if there hadn’t been several people keeping an eye on the hospital people to make sure they didn’t kill me out of sheer stupidity. Because there were some people there – luckily not many – who really shouldn’t have had licenses. And even the good ones were too busy to do what sometimes needed to be done, there seemed to be shortages both of staff and of equipment. And don’t get me started on them having “lost” my DPA paperwork for the third time in a row.) And I’m not ashamed to say that when I get sick enough, I desperately want trusted people around. It’s a good survival instinct to have. I just wish that more people I trust lived close enough to have visited. And love – the really deep aspect of reality, expressed through people’s actions, and I don’t mean in a sexual way – makes all the difference in the world with this stuff.

And I think I’m still getting over the loneliness of delirium. I’ve talked about it in other posts in a lot of depth. But it’s such a horrible sense of disconnection, and actual human beings who care about you can make it a lot better if they know what they’re doing. (Sometimes even if they don’t, just being there and caring is enough.) But those long stretches where time stretches out without people around or any apparent end in sight… that stuff is the stuff that still makes me sob randomly throughout the day when the memory hits me just wrong. It’s terrible to want contact that much – to know in your bones that contact is potentially necessary for your survival – and to have nothing but endless sameness of the worst sort. I’ve never experienced anything quite like this, even with previous, much shorter experiences of delirium. I’m almost glad I have, though, because I now have the motivation to try and change something that badly needs changing. It took something this extreme (plus a friend/DPA willing to do a ton of research into delirium) to show me that this sort of thing isn’t just something you have to grit your teeth and deal with, it’s something that can and should be made better by the actions of other people.

5 notes