Daily Archives: May 2, 2006

Forgetting that something is ongoing

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Edited to add: Both the ongoing severe pain and the absolute worst pain turn out to be trigeminal neuralgia that was misdiagnosed as a migraine. I do have migraines. But not constantly like I was told.

The Smiffy’s Place Blog, in one BADD entry, talks about the question, When Will You Get Better?.

This is the sort of question I get a lot. Not for autism, really. But, in particular, for migraines.

I may have mentioned before on this blog: I’ve had an ongoing migraine now for several years. I didn’t realize that part of it was a migraine until I went to a migraine doctor, but it’s basically an ongoing migraine, sometimes severe, sometimes moderate. (I’d assumed the moderate pain couldn’t be a migraine.)

Right now, as it has been for pretty much since October, it’s in the severe range almost continually. As in, my baseline level of pain is between 5 and 7 on the 1-10 pain scale of someone who’s had severe pain for a lifetime. (Translation: Most people with no experience of severe chronic pain would probably rate it higher, although I already did have to adjust my entire pain scale after I got pain treatment, since pain treatment revealed to me that my previous “1” was really a “3” or “4” at least.) I’m vomiting a lot if I don’t keep taking tons of Dramamine, and sometimes even if I do. I’m having to cut off activities I could do when the pain was at a more moderate level, and the migraine interrupts anything I’m trying to do throughout the day. It causes huge levels of fatigue and clouded thinking, too.

I’m not saying all that to make anyone feel sorry for me, just to give an idea of how much pain I’m in on a regular basis. (And yes, I’ve tried tons of migraine treatments, I don’t really want to hear everyone’s migraine advice. The last migraine prophylactic med I was on actually worked, as in it took my pain down to moderate instead of severe, but it also did a lot of unpleasant and dangerous things to my body, so I had to stop it.)

Anyway, this is something that’s always here. It’s always affecting me. It’s never gone.

What I notice is that unless I broadcast some signal of pain, people seem to forget I’m in any pain at all. If I don’t talk about it, and I don’t grimace or vomit or lie down in a dark room with ice packs on my head, people assume it’s not there. And then they attribute all kinds of things that are pain-related, to other things entirely.

And then when I do show it, it’s “Oh, do you have a headache today?”

And I keep thinking, “Okay, how many times have I explained to you that I’ve always got a headache? If I don’t have a headache, that will be news.”

In So You Know a Dyke with CFS, Carolyn Gage writes:

DO ask me how I am when we get together for an activity. That lets me know that you are willing to be my ally in confronting the challenges I am meeting during the time we are together. I have come to learn that when you don’t ask, it means you don’t want to know. It means that your plan is to grant me the “privilege” of being considered your able-bodied peer for the duration of our activity. In other words, my illness will only be real for you if I bring it up. Experience has taught me that this attitude results in your equating my mentioning of symptoms with my causing those symptoms. And you will oppress me accordingly.

(Emphasis mine.) That seems, to me, to be exactly what is happening. People seem to expect this migraine business to be something that just goes away. Even if they’re told that it’s ongoing, I’m not sure they believe it. So, it’s only real when I mention it or give some indication that it’s going on.

In October, my roommate mentioned, also, that people who don’t have migraines seem to think that since they’re common, they must be mild. She said that a lot of people don’t even believe the degree of pain and other unpleasantness a migraine can cause, let alone that a migraine could last a long time. Others, including especially people who get migraines only temporarily, don’t believe a person could function with a migraine, so would disbelieve this from a totally different angle.

The truth is that if you have something every day, you learn to function better than if you’re hit with it intermittently. Not that I’m doing things as well as I do when the pain is milder, but I’m doing more than I would if this were temporary and could be expected to go away. One time I tried lying in a dark closet for the duration of a migraine and realized after three days that this wouldn’t work. At the moment, I have to lie down several times a day, and I’m probably going to have to go vomit again after I finish writing this, but I also get up and do stuff sometimes. With chronic migraines, the pain fluctuates, it doesn’t stay at total hell level all the time, just mostly-hell level. And with severe pain in general, if it lasts long enough, there are times when it seems to fade out a bit, even when it’s still there as much as before. Plus you develop all kinds of ways of detaching from your body (up to and including, in my case, full-immersion hallucinations and/or total disorientation and/or unconsciousness if the pain gets bad enough; I’ve experienced this with migraines, with the other kind of pain I get, and with post-surgical pain when the hospital screwed up and forgot painkillers).

Or in other words, as Diary of a Goldfish describes in their blog entry for BADD, the sick role doesn’t work for those of us who have one of these supposedly “temporary” things that refuses to go away. I may still be trying for a migraine cure, or at least a migraine “beat it back a fair bit until it’s manageable”, but I can’t put my entire life on hold until I do. Certainly there’s a lot of things I do less now than I would otherwise, but I still do more during a migraine right now than I probably would if I only got one of these a couple times a month.

My thought, with this and so many other things that people don’t notice, is often something like, “I bet if the people who have trouble believing this is ongoing, had to live in my body for one hour, they wouldn’t be able to function. At all.” They’re probably not used to the degree of pain that I’ve been used to as long as I can remember (from things other than migraine). They’re not at all adapted to my perceptual setup, and would probably just collapse in overload. They don’t know how to pace themselves for stamina problems like the kinds I have, and would rapidly end up what staff used to refer to as “fully catatonic”. I have a lifetime of figuring out how to function in this body. They don’t.

But regardless of this, many hold me to standards that would probably be impossible to hold themselves to. And when it comes to migraines, or other things like that, I am pretty sure that what I experience is not “real” to them until I mention it, and then it’s not “real” anymore until the next time I mention it.

I’ve even had medical professionals become skeptical when I talk about not reporting severe pain (that probably is central pain or something similar) for twenty years. Central pain (or other pain like it, since there are neuropathic pains besides that that act the same, I’m just assuming since no nerve damage has been found that it’s probably central pain) tends to be under-reported anyway, because it’s so alien to any form of pain that most people ever experience, and because it’s so often associated with communication trouble. It’s most often reported as debilitation rather than pain. If you’ve had it as long as you can remember, then what? How are you supposed to know? But, at any rate, apparently that pain wasn’t real until I reported it either, and continues to be unreal even if I do report it.

While I was writing this, my case manager walked in the door and said, “Uh… do you have a migraine today?” I told him about this blog entry and said “The day I don’t have a migraine, you’ll be among the first to know.”

I’ve also had staff assume, not just once but many times, that if something wasn’t happening on their shift, it just plain wasn’t happening to me, even if I mentioned it.

I do wonder if the notion of something not going away, makes people uncomfortable. If it’s more than just “forgetting,” but “not wanting to think about”. At any rate, regardless of what intentions are behind it, I do notice that if people are likely to “forget” that I’m experiencing something, they’re also likely to “forget” the different ways I might need to do things, the access problems, and so forth. And to become almost irritated, if I bring those things up, as if, yes, mentioning them is causing them.

Seeing beyond these things? No, I want something better.

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In going through the numerous and interesting entries for Blogging Against Disablism Day, I’ve read a lot of posts that say, “We need people to see past the disability.” People name different things that need to be “seen past”: Wheelchairs, white canes, flapping hands, body or facial shape, etc. Apparently, what is “beyond” these things is the real person.

I’ll start by saying, I know what it is they mean by this, and I don’t need it explained to me. They mean that some people focus in on some attribute, and then sort of cover over the rest of you with the things they think that attribute means, rather than seeing you as a person.

It’s not as if I don’t encounter this on a regular basis. I use a wheelchair. I can’t use speech to communicate, which becomes obvious if you either know the significance of my communication boards or try to talk to me. I move and react to my surroundings in a way that’s distinctly atypical, in fact so atypical that many people seem to think I am not reacting to or understanding my surroundings at all. (That includes hand-flapping and other things like that.) I have a facial and body shape that, combined with these other things, subtly (sometimes not-so-subtly, as in I get remarks, but often I’m not even sure people realize they’re taking it into account) influences people’s perception of me. So I know very well what it’s like for people to not treat me like a person, on the basis of these things. And it’s definitely rare that people see me for who, and what, I am.

However, my wish is not for people to look past those attributes of me. Because it is not really those attributes of me that cause them to form all their stereotyped and mistaken opinions of me. And because, the term “looking past them,” even as a shorthand, turns these things into something undesirable, something not to be looked at.

I want people to be able to look at me, and see a person, and see all those other attributes and not have to look “past” them or minimize them in order to see me as a person. I want people to be able to see beauty in flapping hands. Not otherworldly, ethereal beauty attributed by someone going the other direction and putting us on a pedestal, just everyday ordinary beauty.

I don’t want people to have to look past anything. I mean, how insulted would most women be by “I look past the fact that you’re female and see that you’re a person”?

I want people to look straight at what they’re looking at, including all the things they supposedly have to look past, and like what they see instead of constructing all sorts of bizarre theories in their head about it, instead of being repulsed or frightened by it, and instead of concentrating on “looking past” certain aspects. If they have to look past those attributes in order to see us, they aren’t ever going to see us for who we are. They’re just going to see another substitute for who we are, little better than the first.

As long as people still have to “look past” things to see us, they’re never really going to see us. It’s the stereotypes they need to ditch, not the aspects of our appearance that they attach to those stereotypes. It may sound like only a semantic difference, but it’s more than that.