Laura Hershey, a well-known disability rights activist, is dead. I don’t even know how to respond, it was so unexpected and I’d always looked up to her. I’d like to do a memorial post with lots of links to her writing and how it influenced me and all that, but for now all I can do is say that she died, I can’t think beyond that yet.
A memory:
When I was very little, I lived in this house. I still know the entire layout of the place like the back of my hand. The outside was made of old, weathered wood with the paint coming off. But the most interesting part about it was that on the upstairs floor, there was a part of the house that went over the road to a part of the house that we mostly used as a storage shed.
It’s more familiar to me than anywhere else. Just thinking about the house and its surroundings (it was pretty isolated) makes me feel an intensity and familiarity so strong I can barely stand it. If I ever become good at realistic drawing or painting, I badly want to make pictures of it.
And as far as I know, the house never existed. I dreamed about it a couple years ago during a severe illness I was hospitalized for because among other things I couldn’t keep down my seizure meds. My only guess is that it combined the intensity of a fever dream with the overbearing familiarity-sense of a temporal lobe seizure. But it’s etched itself into my brain so thoroughly that it feels more familiar than the two houses I lived in during the ages in question. It hurts that I can’t ever go back.
The house isn’t the only thing I “remember”. The surrounding hills were amazing. They had rich deeply dark-colored dirt with white specks. Only the dirt wasn’t brown. On some hills it was black and on others it was a very dark violet. There was also a wooded area a short ways away where the dirt was a more normal reddish-brown color, where my father used to walk with me (except he didn’t). All of this is saturated with a deep dark rich familiarity.
Why am I talking about this? Because there are other things, real things, that elicit the same sense of familiarity and “known it since forever” even if I haven’t. And the music of the Raventones (with an autistic singer/bassist/etc. at that!) is one of those things. I tried to trace it back to real music I heard back then, and got a partial match (not one most people can even hear, so it’s a very poor match), but not enough of one to justify the intensity of this feeling. The singer does live in a part of Oregon that my family has ties to, but I’ve never personally been there (that I know of) so it’s not that.
A warning before I continue: I’m not a music critic, not a connoisseur of any kind of music, not an expert, and I have never been able to keep straight the names for any of the particular styles, compare obscure bands, or anything like that. If you’re expecting that, go somewhere else. All I know is how different music makes me feel and that’s all I’m going to write about.
Anyway, listening to their music is like… there’s the intense familiarity telling me I’ve heard this since before I was born (even though I haven’t), and there’s the multilayered synesthesia wrapping around me in visual and tactile ways. And then there’s all kinds of, I’d almost call them emotional landscapes. And those fill the moving-through-space parts of my head with great depth and intensity.
And the experience is just more complete than ever happens to me when listening to music otherwise. There’s music that does some of these things to me, but never all at once in a way that’s actually harmonious between each other. And, a rarity even with music I enjoy, the sound frequencies are all ones that don’t ever make me want to cover my ears, not unless I’m reacting that way to all sound. If I had to pick one set of music for a soundtrack to my life or something, this is the music I’d pick. Not because of the lyrics or the fact that one of the musicians is autistic (I know lots of autistic musicians and no others affect me this way, although some do affect me deeply in other ways), just because the sound resonates perfectly on an emotional level.
I have no clue if it would have this effect on others of course. So many of these things are personal. It’s not a reaction to the lyrics, which I rarely bother to listen to much, and when I do I can’t make out all of them and they’re not online. It’s not the style, which I don’t normally react to any particular way. It’s just a sense, that resonance that I can’t get rid of.
Anyway, their album “odd birds” is available online a bunch of places, should anyone be curious about listening to them. The singer/bassist/etc. TR Kelley has music other places, but I haven’t been able to get it to download yet (they say they’re working on it). All of this is on the Raventones website.
I listen to them any time I want to be completely wrapped in familiarity and, if not exactly safety, at least some sort of sanctuary where things make sense, not because they’ve been puzzled out by my mind, but sense as in sensual, and as in the parts of me that just feel when something’s right. And with this, every inch of it feels right on every level.
If I don’t get the post out that I’m planning, this one could do for the next blog carnival. It’s not what I intend for it though. I’m just having trouble writing the other one, while this one wrote itself unbidden. (This keeps happening. And I have so many important things I’m trying to say. Not that this part of life isn’t important. But still, this keeps happening. And it keeps being “the writing quality that pops out is all you’re gonna get” too, since I can’t actually read it well enough.)
[Title inspired by the quote “Did I ever tell you that Mrs McCave had 23 sons and she called them all Dave?” -Dr. Seuss. The number 23 is irrelevant.]
This isn’t the post I wanted to write. I have several important ones I’m working on and then this one (on a topic I have covered already some time ago) goes and pops out. That seems like it’s always the way of things. Oh well. It’s on a topic that I recently attended a talk on (pain in people with developmental disabilities) that had a lot of important things to say. And this is one component that wasn’t in the talk but that has had a major effect on my life.
So I’ve lived with chronic severe pain of several kinds my whole life. One of the hardest things, and a barrier to pain treatment, has been learning the unifying concept of pain in the first place.
To me, every kind of pain is separate and unique. It would never occur to me to put them together if it weren’t for learning, often from other people, what they were. (This has had serious and sometimes life-threatening consequences. I’m sure anyone who has read much of this blog knows the stories.)
So I’ve gone through my life learning them one by one. Here’s a list of many things that all feel separate to me:
Summer thing (central). Trigeminal neuralgia (background). Trigeminal neuralgia (attack). Occipital neuralgia (background). Occipital neuralgia (attack). Hypermobility-related overall joint pain. Tendinitis. Muscle ache. Muscle spasm. Heartburn. Weird neck nerve stuff (can be felt anywhere in my body depending on neck position). Upper back/neck pain. Lower back pain. Migraine (both head and other body parts). Chronic daily headache. Seizure aura (dryness to the point of pain). Stomachache. Sore throat. Intestinal pain (especially from diarrhea or constipation). Postcholecystectomy syndrome (feels like gallbladder attacks despite lack of gallbladder). And the many things I doubtless don’t remember.
Now keep in mind that for many of the things listed above, even “one” of them might sometimes cause six or seven distinct sensations that I would never think to put together, and that one kind of pain can feel different to me just based on which body part feels it. And those are just kinds of pain that happen without an immediate injury, and kinds of pain that I happen to experience either regularly or constantly. And even excellent communication about one means nothing about another.
So today, I was recovering from the evil flashing/blaringness that is the building fire alarm. When I noticed that my ability to write and think was being greatly reduced by a sensation on my body. At first glance, it just felt like something lightly brushing against the skin of one side of my body. Not anything I would ever equate to pain.
But then I remembered a story I heard about the severe abdominal pain of an intestinal blockage and how it felt to an autistic person. He said that he, who is an incredibly happy person who is never depressed, suddenly felt suicidal and like he would do anything to get away from… some weird sensation or another that felt rather mild on a conscious level and that didn’t resemble any kind of pain he was used to. It was only after a nurse administered pain meds that, by the contrast, he could tell he had been in excruciating pain.
So he told me to remember this: Pain is any physical sensation experienced as uncomfortable. Especially if in connection to that sensation you are experiencing limitations in everyday functioning, out-of-character negative emotions, a desire to do anything to get rid of the sensation, or other things like that.
So I thought it through. I was being limited in my ability to concentrate in ways I would normally put at a 6 or 7 on the 1-10 pain scale (which has been painstakingly drilled into my head over a period of years until I almost understand it). I was trying to avoid my body more than usual. And I couldn’t get the unpleasantness of the sensation out of my head. When I tried to connect to my body a little more, it did indeed feel like there was pain underneath or tied in with the brushing sensation. And when I took my medication… well I’m able to write this, and I wouldn’t have been half an hour ago, and the sensation started keeping it down to a dull roar instead of dominating my attention.
This isn’t the first time I’ve felt that. But it’s the first time I have ever associated it with pain. So now I have a whole new kind of pain to add to my list of “sensations that all get called pain no matter how different they feel”.
But despite that library of different pain sensations in my head, it’s not like this is automatic. The hospital around here used pain as one of the vital signs. This is all well and good and saves lives as long as they take patients seriously. But it’s a major headache (no pun intended) for me, since I have trouble localizing and identifying pain at the best of times.
I just recently got my latest nerve blocks done. They make you fast beforehand, so I was already very floaty and disconnected and light-headed. And the conversation goes something like this:
NURSE: “Do you have any pain?”
ME: “Probably. Most likely actually.”
NURSE: “Where is it?”
ME: “Please no. You’ve got to be kidding. I haven’t eaten. I don’t even know where my body is, let alone where the pain is.”
NURSE: “So you don’t have any pain?”
ME: [inwardly going “oh for the love of… how can I possibly explain this when I haven’t eaten and don’t have any words?”]
NURSE: “So you don’t have any pain?”
ME: “Seriously I don’t know how to explain this. I do have pain but I don’t know how to interpret the locations in my body.”
NURSE: “Okay, but can you at least tell me where the pain we’re treating today is?”‘
And after that everything went okay. But at the time all I felt were a whole swirl of sensations, every sight, sound, touch, smell, taste, etc., including pain, just jumbled together, sometimes blended, and not at all possible to locate, because my body itself was just a series of jumbled sensations in among the others. It’s really hard to explain to people why I can be in very intense pain and both be unable to locate it on my body and unable to perceive it as separable perceptually or conceptually from the landscape around me. And it’s in turn hard to explain why this is normal for me to lose track of everything (pain or otherwise) in that jumble, and that pain isn’t a special case there, it’s just something that adds to the confusion. This doesn’t mean I don’t feel them or they don’t affect me. It just means that conscious understanding of them is a serious struggle.
Unfortunately this often means that at the time when locating and describing pain is the most important, it’s the least possible. When they ask about pain at doctor’s appointments I usually give them a rehearsed answer. Trying to map out all the overlapping kinds of pain, locate them, describe them, and give them all numbers, is impossible. Even when I feel like I have a body, the sheer number of kinds of pain prevent me from treating them as if they are all one thing. To me they’re just many and varied unpleasant sensations with nothing much in common, spread out over my entire perceptual landscape.
Edited to add:
I am starting to notice a pattern here. Or maybe simply noticing it yet again while forgetting last time I noticed (not hard to do at the best of times and right now I have a migraine). Very many of the mismatches between me and standard expectations are extreme mismatches between my supposedly-native language and my experiences of the world. People always talk about language shaping our experiences. Maybe it can do that sometimes. Sometimes when it seems from the outside that language has shaped my experiences, it’s really that language has shaped my while-using-language responses (reason #5278 I distrust lots of autism research that relies on forcing us to use or understand language).
But then most of the time it feels like language is in one corner of a room, and my experiences not only take up the entire rest of the room, but much of the world outside that room. And yet everyone focuses on that one corner and acts like everything else doesn’t exist.
So people focus on a definition of pain in a particular language and culture. And completely miss that I have no reason to link together dozens of seemingly unrelated experiences just because people here use one word for all of them. Sapir-Whorf my ass.
This is why even the most accurate and carefully-chosen words always feel like lies to me. Even the list of different kinds of pain is a list I chose because the diagnostic terms are the only ones I know — I have only limited ability to describe the actual kinds and boundaries of the various experiences I have that all get called pain, as I experience them, so I borrow someone else’s words for the conditions that cause the pain. And people wonder why I continually express frustration and exhaustion when it comes to language.
So I go to this resource center where I can paint, and lots of other developmentally disabled people go there too to do various forms of art. Generally, everyone does whatever they want to do. But there’s this one guy whose situation really bothers me. Okay, so this guy is blind. And he likes to sculpt. And every day he goes in there, they make him draw with colored pencils for a certain amount of time before he’s allowed to sculpt. He repeatedly tries to say that he’s done, and they keep telling him that he’s not done until they say he’s done. So he sits there drawing circles over and over, until they tell him to switch colors, and then he grabs another pencil (if he can find one, which often he can’t, because he can’t see the pencils, and probably not the drawings either) and draws the same circles in the same spot over and over, until they tell him to draw them somewhere else on the paper, so he draws the same circles in the same spots over and over. (And I get the sense that maybe this circle thing is a protest against being made to draw at all.) And then eventually in a time that’s determined entirely by his staff, they let him sculpt, and then he’s happy. The rest of us, we can say when we’re done with something and they let us stop. The rest of us can choose what kind of activity we want to do and we aren’t required to do something else first. But this one guy has to sit there drawing circles and getting clearly bored with it, over and over, until someone decides he can sculpt which is usually what he wants to do in the first place. And just… WTF, it makes no sense, and it’s wrong. Art is something you do because you want to do it, it’s not something that someone makes you do when you don’t want to do it, and it’s not something where other people ought to choose what form of art you want to do. And choices like that ought to be a human right, not subject to someone else’s power games. It’s things like this that spoil art for people who would otherwise enjoy it. And they bring the scent and the feel of ‘institution’ into places that are blessedly noninstitutional in other respects, because of who has and doesn’t have the control and power.
Ballastexistenz 