For the next disability blog carnival, with a theme of “breaking out” (but not in rashes) (hosted by Andrea of Andrea’s Buzzing About, I was going to write something all about the fairy tales people tell themselves in their heads about disabled people. I was going to talk about the fact that when you’re not one fairy tale, they go “Oooh, so you’re this other fairy tale then.” And of course the consequences of not living up to other people’s fairy-tale versions of disability, or of being some weird hybrid of them that nobody expects.
However, I’ve been ill lately, and that’s made it difficult to write about that particular thing, but necessary to break out of something entirely different. A strange, monotonously repetitive mindset that seems to go along with some levels of pain and weakness.
It goes something like this (translated into words, of course):
- Hmm, there is something I think I might want to be saying or doing right now.
- That means I have to translate it into the right words or actions.
- So here I go, translating.
- I need to connect to my body more in order to do all this. Right now, my mind is sort of floating off and detaching to try to deal with this.
- Okay, there’s the body, that’s what I’ve got to figure out before I can type or otherwise move.
- Okay, need to find a way to deal with the pain.
- Brain is floating off and disconnecting again.
- Thoughts are turning into all these little wispy fragments again.
- Got to try to make at least some sense out of what’s going on, because it’s purely miserable otherwise.
- Hmm, there’s something I might want to do or say…
Only, repeat it. And repeat it. And repeat it. And repeat it.
Until it turns into, not a bunch of separate things occurring in a particular order like I describe above, but a whole rhythm of experiences where different things sort of pulsate in and out of awareness in a regular pattern, and the whole thing is covered over, no matter which part is going on at that moment, by feeling really, really lousy and ill. And it gets mostly tedious and monotonous, of all things, because the rhythm sticks in my brain even if memory of what’s going on keeps sliding out of it.
And I’m not really talking about anything minor, either. Even before I realized anything was up, people were telling me I looked really crappy. At the worst of it, someone called 911, and the paramedics tried to test my level of alertness by pressing as hard as they could on a nerve that was near the surface and already irritated. I felt the pain, but failed the test completely because I couldn’t do anything other than stay limp. (Which might be good in a way, because normally if someone inflicted that much pain on me I’d fight back.) The whole lack of response == lack of awareness idea is one that really bugs me, although I know there’s some kind of protocol that requires the whole pain-infliction routine.
At any rate, even when things haven’t been that bad, things haven’t been the best circumstances for a long, eloquent post on disability stereotyping either.
So instead of the post I was after about breaking out of stereotypes, you get this one, where I get to attempt to break out of the rhythmic monotony of thoughts being thwarted by pain and exhaustion. Please try to avoid those pesky stereotypes while reading this, though; they get old.
There are a few reasons I made this post:
One is what I said, to break out of the monotony. Not that this is the only time I’ve done so (the repeating-thing seems to come and go), but it’s one time. And even lying around not doing much gets a bit old even when I am doing better than before.
Another is just in case it describes an experience that someone else might’ve had but had trouble describing. Because that’s something that’s often important to me. It took a lot of work to ask someone if this was common, and it turns out it’s a pretty common response to pain and illness in general if it’s bad enough. I’ve experienced it before, but of course at the time when I’m experiencing it, I don’t usually have the capacity to remember any other time, nor to imagine it stopping or anything changing in the future. It’s only in retrospect I can put it in any kind of perspective, because at the time my already-tenuous grasp on time is, to put it mildly, not there anymore.
And the third reason is that I can now at least post the thought that most commonly leaps to mind during the phase when there’s something I want to communicate that ends up getting cut off before I can say anything. It’s something that goes, as well, for every other time I either can’t think or move in standard enough ways to generate responses other people understand. It translates best as, “Please remember I’m a person.”
So maybe my inability to post what I was intending to, isn’t so bad after all.
Ick. I’d been wondering if you were sick. I hate the “pinch till they scream” test, I can’t see it as accurate…
Yeah, the “pinch till they scream” test does work to rule out some things, but the absence of any response to it at all doesn’t show what’s going on, either, since it could be not feeling it but it could also be not being able to respond to it. :-/
I’m sorry to hear you’ve been sick. I’ve been sick (like two bad colds in a row with a couple of days of good in between) and I’m still sick, but no one had to call 911. I sure hope you are getting proper care.
I kind of figured something serious had happened…….as I’d been checking your blog over the course of several days and nothing had happened…..which I believe is somewhat rare, if things are going smoothly.
I’m not exactly sure if I can completely wrap my mind around what you’re saying, but I can make a conjecture that I’ve experienced something like that before…..Athena definitely has. Ivan and I might have, but if we did, it would be a different kind of experience than Athena’s experience. Ivan has long periods of raw anger and frustration in which he can’t move….and if he’s raging while I’m present, I can’t move either.
It happened this morning.
nice to see you back.
I’ve been around some of the time. I just haven’t been blogging as much.
I have a similar kind of thought loop sometimes, particularly when fighting a compulsion or trying to do ‘thought stopping’ (a technique for dealing with negative self-talk, which is useless for me because of the resulting thought loop).
I think obsessive or compulsive thought loops are different from what I was describing, although no less monotonous and infuriating. What I was describing has more to do with confusion than obsession.
how can you tell which is which? (confusion thought loop vs. fixation/obsessive thought loop) Honest question; Athena, The Integral, and I have probably dealt with both……….and I for one am very interested in your thoughts on how you distinguish between the two if you do indeed, and if that is possible.
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I would never have thought of them as the same thing in the first place, if you hadn’t mentioned it that way, so I don’t know how to explain how they’re different.
Except that an obsessive thought-loop is generally thinking of something over and over and having trouble stopping.
Confusion in this sense is more just a pattern of getting a bit of a grasp on something and losing that grasp and having to start over.
To go back to my landscape analogies, obsessive thought-loops are like running in circles on a plateau and being unable to stop for some reason. Confusion-related thought-loops are like climbing something only to fall off repeatedly, possibly injuring yourself in the process.
Thank you …
I hope you feel better soon. constant pain makes thinking unbearable.
I’ve been in a very similar state recently, so my sympathies. I think i might be starting to break out of it, tho…
Totally off topic, but after reading your post “I’m the monster you met on the Internet”, and some of your stuff at Autism Demonised, i thought you might be interested in this: http://www.inter-disciplinary.net/ati/Monsters/M6/cfp.html