9:30pm April 21, 2013

That thing where you don’t want to be alone

youneedacat mentioned this, I forget where. But there is something about being injured (for those not reading my main thing: I had a woodworking accident last night that ended with a sliced hand, an ER trip, and 15 stitches) to this level that is making me really compelled to scrounge around for ways to communicate with people I know.

Not in an “attention seeking” sense (though the whole matter of “wanting attention” being inherently bad is problematic in and of itself, at least in some contexts). But in the sense of “I’m hurt and scared and being disconnected makes me feel even more hurt and scared”.

Obviously this doesn’t mean I want to be harangued and inundated with contacts and emails and questions. And it doesn’t mean it becomes okay for people to interact with me in overloady ways I normally don’t allow or like. But. What it does mean is that I am definitely coming to a conscious appreciation for what it is to be a “social animal”. Being autistic does not mean “not social”, and it is awful to think (know?) that there are likely people who are actually desperate to reach out and prevented from fully doing so for fear of violating stereotypes, etc.

Yeah I’ve come to know this way too well from being sick and injured way too often. It’s like I suddenly become desperate for social contact in a way I rarely am in any other circumstance at all.

It sort of reminds me of how my problems with eye contact disappear in romantic contexts, weirdly enough.

I really really hate that there are parents who have figured out their autistic kids are more social when they have fevers, and have come up with all these bullshit explanations, and even in some contexts tried to induce fevers to keep their kids artificially more social. Which strikes me as torture, but then so much of what they put us through is torture done for really selfish reasons.

Because the reason many of us ucrave interaction when we are sick is because we have deep and intense instincts telling us that to be alone when sick is to be vulnerable and to be vulnerable when sick is to be dead. Some of us also become less social when sick, wanting to crawl off and hide like an injured cat. I seem to experience both depending on what kind of sick and a lot of other factors. But the drive to be social when sick is really striking to me because it is rare that I truly crave interaction in such a desperate and intense way.

When I was in the hospital, webmuskie got a nasty sinus infection and couldn’t come up for awhile. And I became almost unhinged because of the lack of interaction. I didn’t notice until she finally was able to come up and I instantly burst into tears and wouldn’t let go of her hand. She’s sort of a second mom to me (or a third, counting my cat) and she’s the only person I know well locally, and so not having her around was torture.

I also remember after I got my breast reduction, and my real mom came to help me, I was so grateful to her for staying a whole month to help me out and just to be there day and night for anything.

That’s one reason I think the entire concept of visiting hours, in most contexts where it’s not crucial to keep interaction to a minimum, is utterly cruel. It forces sick and injured people to be isolated for most of the day, except from professionals who are paid to be around us which is not the same thing. It’s one reason I’ve been so grateful for hospital chaplains from faiths I don’t even believe in, because they gave me social interaction and spiritual guidance at times when I needed both. I’m glad that at least that is built into most hospitals. The hospital also had a system I never used, of volunteers who would come and spend time with you and talk about anything you wanted.

But I think what would be even more powerful is for hospitals to give patients access to each other, except in situations where that’s unwanted or dangerous. Because patients know what each other are going through, we know that kind of desperate loneliness that can occur when ill, and we could really help each other out. Especially those of us who have nobody on the outside to visit us, and who find volunteers too artificial.

I will never ever forget the woman I heard in the room next to mine, and I was able to pick up from her words and vocalizations as well as those around her, that she was disoriented, hallucinating, desperately lonely and terrified, dying, and utterly alone. I would have gone in there and held her hand and talked to her if I could have. So would have probably at least half the patients in the entire hospital. Especially those of us who have been delirious while our lives were in danger. But there is no system in place to allow that and probably several systems in place to prevent that.

I remember her because she was such an extreme example of why it’s necessary for people to be able to spend time with each other when they are sick or dying. So many people fear dying alone in the hospital like she did, for good reason. But how different would it be, if hospitals were not emotionally sterile places of isolation, but places where patients and other people could connect with each other? Would we fear dying there so much if they didn’t do so much to push people apart?

I’m glad you have Matt. If I were there, I would be at your place as long as you wanted me there. And since I’m not there, it’s perfectly fine to reach out to me mentally, because I will be thinking of you too. And that’s not the same as being there, but it’s as close as I can get.

Also never underestimate how much a weirdly peripheral pain can take over your mind. I once sprained my pinky, permanently lodging it into a bent position, and it was just this one tiny finger but I couldn’t believe how much it took over my brain. An entire hand is even worse. And there’s always more pain than you’re aware of. And there’s always things going on besides pain. Things that have no easy name. Where your body goes into repair mode and takes all its resources from everywhere else. And that will wear you down and make you incapable of a lot of things you are normally capable of both physically and mentally. That’s why rest is so important, and why mental rest is just as important as physical. Your brain is the most energy expensive area of your body, and if your body is taking resources away from that, you’re going to feel it in unexpected ways.

Anyway I know that was a lot to write, but a lot of people forget about all these things. And I know you forget some of them.

So hang on. And rest. And I’ll be thinking about you a lot if that helps at all with forming a connection even when I’m not writing or anything. It’s like being there without being there. Can’t explain better because my own head is a bit muddled from the recent surgery.

Which is also why all this information is so fresh in my head. I was so overwhelmed with happiness when another friend, who lives in New Hampshire, heard I was sick and just drove all the way out to see me. She and webmuskie both were allowed to wait for me right outside the Interventional Radiology door where they did the procedure. It meant a lot that there were at least two people who lived near enough to me to be able to get here. And all the people who weren’t here who helped in other ways, including you. Seeing you on Skype video chat was great because it was like not only seeing you but connecting to a place that wasn’t the hospital, that I had so many good feelings about. And of course the cats.

People talk about how petting cats is good for your health but they talk about them like they’re some kind of machine. Really cats are friends too. And being able to be around Fey. I can’t even describe what it felt like to come home to her. It was like she came up uto me and so much love flowed back and forth in a way that rarely happens between me and my human friends.

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