Category Archives: Pain

Condensed old-post response to twisting of experiences

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Typing hurts so this is a condensed version of a long post. Apologies in advance for lack of nuance. The long version was written before my last several posts (written last week) and resemblance to later happenings (which in some places is strong) is coincidental.

This is about me but surely applies to many others so should be read as broad-contained-within-narrow. So should many of my posts which some people mistakenly read as person-specific or autism-specific.

People call up an image with words. They use it to sell their cause of prevention, cure, institution, etc. The image is in many heads a fuzzy stereotype, in other heads such stereotype imposed on real people yet untrue even on the people.

People throw words in my face one after another as justification.

The words evoke real inside life for me not life of hypothetical or outside person.

They say ‘banging head’ I know the feel the constancy the effects on vision motor skills and thinking and other-side-of-head splitting headaches and blacking out. I know counting of thousands of banging per hour.

They say ‘institution’ I see hear feel smell real concrete lived experiences inside.

They say ‘alone’ I remember total isolation. Also remember presumed lack of social interest while interested. And remember how long I believed, and gave up on the belief, that there must be other people like me in certain ways, in the world, before I started one by one finding them.

They say ‘in a corner’ I remember exact one corner, specific corner, spent ages barely moving all the details of this.

They say ‘no understanding’ I remember the waterfall sound of speech still often happen, and pattern rather than typical abstraction. I also remember still often people speaking as if I not exist not understand people even telling each other “she doesn’t understand”. I remember nonsense sounds that years later understood the words, that were thought I would never understand or remember. I remember understanding things others never even thought to understand and thus never tested.

They say ‘no communication’ I remember endless attempts to communicate ignored, robotic non-communication praised. I remember interpreter after interpreter barred from helping because “she could not possibly be communicating that complexly with only her body, we see no real communication”. I remember impossible to communicate many things frustration, I remember before I knew what communication was, I remember only knowing bits. I remember now using alternative communication, I remember gradual loss of speech.

They say ‘will never’ I think of all people said I will never do just ten years ago that I have done. I think of prerequsites for ‘independence’ that I never met yet but here I am in my own apartment.

They say ‘unaware of danger’ I remember balancing on fences, climbing trees in unusual ways, walking into traffic, licking or trying to eat inedible objects, sometimes unaware sometimes unable to do otherwise even if aware. I remember interest in straight lines and circles and shining lights so intense it overrides any notion of ‘wheels’ and ‘road lines’ and ‘headlights’.

They say ‘no initiative’ I think all the time I spent barely moved yet needed assistance waiting yet never got what I was waiting for because not moving meant to them empty-headed or stubborn. I think of also having different initiative than pleased captors.

They say ‘no sense of time’ I think of stare at object no sense of different between hour or day. I think random sleep. I think of moment passing without reflection. I think of barely even now grasping difference of past/present/future and my conception of the world being outside time.

They say ‘no body awareness’ I think of having other people touch to tell me where I am and how to move. I think of feel pain but not know where. I think of body as external sensation just as room is, cannot always differentiate pain or itching from a desk.

They say ‘bite self’ I taste it and see the bite marks on hands and arms.

They say ‘incontinence’ I not only know the feel but also the feel under neglectful circumstances and going everywhere instead of one place and sitting in it for hours if stuck.

They say ‘violence’ I recall caged-animal fear and lashing out and treated with more violence than I ever had the power to inflict.

They say ‘mind of a child’ and I see test results putting developmental so-called ages on what I can and cannot do, but never being those ages at the time.

They say ‘screaming’ I remember doing so until I lost my voice at home, in public, in institutions, or in other places.

They say ‘no emotion’ I remember emotions without usual expressions or not in the usual situations, being chastised for ‘inappropriate’ emotion.

They say ‘no personality’ I remember records stating I probably had severe/complex developmental disability prevented formation of cohesive personality.

They say ‘cannot dress self’ I think of prompting both physical and verbal, ‘cannot feed self’ and I think of help moving arm and when they move my arm wrong by accident and what malnourishment does to the body and mind with pain and irrationality and food-obsession. I think of being walked step by step through every activity of daily life starting not with “pick something up” but “here is how to move one body part, now here is how to move the part next to it, and the next one,” all the way through the task, collapsing in exhaustion several times throughout and having to start over, doing it wrong anyway, never getting it all done. I remember stopwatches and clipboards in futile attempts to teach me some of these things.

They say ‘no communicate pain’ I recall many urgent medical problems never mentioned even with adequate communication system. I recall also being told I was not in pain because no facial expression even in excruciating pain. I remember taught not to scream with broken joint. I recall 20 years of severe pain never diagnosed. I recall emergency workers (ignorant of auties) saying I must be on PCP because of total imperviousness to pain when fighting them.

They say ‘low functioning’ I see the records and hear the conversations that use this and many equivakent terms on me, not ancient history but a few years back. I see the bottoming on test results of ‘functioning level’. The expectation in people’s manner of my being not really here or thinking. The arguments about salvageability like I am a shipwreck.

They say ‘brain scan is proof’ I remember the proof that I had a ‘broken’ brain the brain scan used as ‘proof’ of so many things I was supposedly incapable of. I remember hearing people say “her brain beyond repair no sense helping her she is gone no longer a person didn’t you see her chart look at this look at this get her out of here worthless impossible to help nobody home” outside room I was strapped in.

When people use these stereotyped repetiton of words and phrases (non-auties do it too in both senses of the word stereotype!), or the photographs or drawings meant to evoke same, it is, bam-bam-bam, one in front of the other. Each one conjures up not fuzzy half-formed abstractions or images of other people, but real vivid immediate multisensory multidimensional concrete experiences from my life (not even the life of a person around me).

After that bombardment, people use it to justify things I find horrible, as if my mere existence is unthinkably awful. If I call them on it, well then there are the “But we don’t mean you” statements, the inability to conceive that these conjured-up constructs are more concrete and immediate for me than for them. If I try to explain these bombarded images and smells and sounds and feels and everything, my motives and emotional state and character become questioned and analyzed and demolished. (No I am not constant-angry, asking for pity, lying, or hating.)

But evoking these strings of experiences at me one after one after one and then barring my access to them and then using this to argue against everything I believe in is a lousy tactic. I do not need it explained patiently to me that my life and the lives of my loved ones exist, while simultaneously twisting meaning and value out of all of us and ending with “We don’t mean you” when so clearly they do.

Eyeballs eyeballs eyeballs

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It’s been a long time since someone’s really been insistent with the eye contact while I’m squirming and trying to get away. I noticed today exactly how much I react to that.

So I’m sitting there in a doctor’s office, and he’s leaning towards me and sticking his face up to mine.

And I’m sitting there trying to think in a way that, were it in words, would go something like this:

Okay… he’s got to…. EYEBALLS EYEBALLS EYEBALLS he’s got to be unaware… EYEBALLS!!!! …he’s… uh… eyeballs… uh… EYEBALLS!!!!!!!!! people like him think this is EYEBALLS EYEBALLS EYEBALLS EYEBALLS EYEBALLS …some people think… EYEBALLS!! …some people think this is friendly… EYEBALLS!!!! EYEBALLS!!!! EYEBALLS!!!! he really doesn’t mean anything EYEBALLS EYEBALLS EYEBALLS he doesn’t mean anything EYEBALLS EYEBALLS he eyeballs doesn’t eyeballs mean eyeballs anything eyeballs bad EYEBALLS EYEBALLS he doesn’t understand why I’m turning EYEBALLS EYEBALLS EYEBALLS why I’m not coming up EYEBALLS why I’m not coming up with words EYEBALLS EYEBALLS EYEBALLS oh crap hand going banging head EYEBALLS EYEBALLS oh crap not right thing to do EYEBALLS EYEBALLS EYEBALLS EYEBALLS EYEBALLS stop hand now EYEBALLS EYEBALLS EYEBALLS is he saying something? EYEBALLS EYEBALLS am I trying to type something? EYEBALLS EYEBALLS EYEBALLS EYEBALLS EYEBALLS oh crap better remember EYEBALLS EYEBALLS remember EYEBALLS what I’m trying EYEBALLS what’s he saying? [shading eyes as if staring at sun] EYEBALLS EYEBALLS EYEBALLS am I saying something? EYEBALLS EYEBALLS EYEBALLS EYEBALLS EYEBALLS EYEBALLS what’s going on?  EYEBALLS THREAT BAD EYEBALLS THREAT BAD EYEBALLS THREAT BAD EYEBALLS THREAT BAD EYEBALLS THREAT BAD… segmentation fault

Etc. Until I finally reached some point of shutdown. And where every EYEBALLS is not just the picture of eyeballs but of something very threatening about to eat me or something. I unfortunately in all that couldn’t figure out how to tell him that it was his eyeballs that were unnerving me, and I’m not sure I did a very good job of convincing him that I’m not that freaked out all the time. It wasn’t just eyeballs either, it was leaning at me with eyeballs. I tried briefly to remember that people like him consider eyeballs to be friendliness, but it got drowned out in the swamp of eyeballs, and all thinking got drowned out in the end in a sea of fight/flight.

Note to anyone who interacts with me: Eyeballs do not help, unless by “help” you mean “extinguish everything but eyeballs and fear”.

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.

Sordid, anyone?

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There’s a scene in a book called A Tree Grows in Brooklyn. I haven’t read the book for awhile, so I don’t remember the specific details surrounding the scene. The main character is a girl who lives in poverty but manages to bluff her way into a middle-class school by pretending to live in a different neighborhood. Her best subject is writing, and her writing teacher strongly encourages her at first. Then she starts trying, while passing it off as fiction, to write about the actual kind of life her family leads. She tries to show good things about her family as well as talking about the assorted crappy stuff that happens. So she is shocked when her teacher describes her writing as “sordid” and demands that she never, ever write about these awful things again.

I also remember reading an interview with an author whose writing, that he considered to be amusing stories with often happy endings, was described as dark, depressing, and morbid. He went on to basically say, “You want dark, depressing, and morbid? Fine. I’ll write dark, depressing, and morbid.” And wrote a new book about a serial killer.

These reactions to writers are familiar to me. Someone read my (not currently accessible) blog and essentially told me she couldn’t find a hint of positivity in it. My internal response was, “How could you miss it?” I’d described all kinds of positive experiences and good things, and she was painting me as this extremely negative person who could not for the life of me see the positive in anything or anyone. Even my self-acceptance as an autistic person and appreciation of the beauty that comes with autism, she twisted around to be negative, a form of denial apparently, and “clinging to my disability” or some other weird construct that has little to do with my life. (There was a good deal more of the inaccurate psychoanalyzing that I will not rehash here.)

I came out of the conversation quite confused. How could someone miss the things she claimed to see no hint of, that are present throughout my writing?

I can’t really get into the minds of non-disabled people, but I’ve studied their reactions for a long time, and I’ve certainly grown up around the same influences as many of them have. I’m guessing that something happens where the imagined horror of certain aspects of life gets amplified. And amplified. And amplified. Until all the humor, love, and all that other important stuff doesn’t get seen. And then they blame you for not writing it.

Like, for instance, the time I was lying on the floor in a puddle of urine. And my friend told me a story. She was talking about some Taoist fable about someone asking where the Tao was. And she said, “…and the guy asked, ‘Is the Tao in the piss and dung?’ And the person answered, ‘Yes, the Tao is in the piss and dung.’ So, just think, you’re laying in the Tao!” Which we both immediately found hilarious.

My guess is that in reading that story, the average person determined to find me sordid would stop at “puddle of urine”. And sort of fixate on “puddle of urine” until “puddle of urine” overshadowed every other part of the story. Only they wouldn’t just be thinking about a puddle of urine, they’d be thinking of assorted misguided ideas of disgust, dependency, disability, infantilizing stereotypes about incontinence, fear of loss of control, and all kinds of other things like that. And all those things would sort of congeal in their head into “sordid”. End of story. Forget the friend, forget the laughter, forget the humor, forget the love. Then blame the author for all the feelings of discomfort.

And let’s not forget yesterday, of course. I suspect that being unable to keep food down and ending up with acid burns from not being in too much pain to move out of one’s own vomit (because that’s one aspect of what’s happened yesterday) would strike people as pretty awful. And I admit it’s not an experience I particularly enjoy, and I’d be very glad if I didn’t have a years-long seemingly-intractable migraine. But I also expect that the amusement value of my friend’s characterization of me as the human supersoaker (insert water, water squirts out) would be lost on people too disgusted by the first part.

More importantly, all the positive aspects of our lives, even if we write about them, are overshadowed in other people’s eyes by the negative aspects. When I say “our” I mean any person who lives a life that is different in a way that others view with unmitigated disgust or horror but we by necessity find normal, at least for us. That unmitigated disgust and horror will make them unable to see the good things we write about, and in their inability to see them, they are likely to believe that we didn’t write them, or if we did, that we are deluding ourselves. (This is, I think, one of the things that make people think disability has to be Deadly Serious all the time.)

And I also think we often take for granted that our lives are, to us, full of all the same variety of joy and sorrow and humor and complexity, that anyone else’s is. And that other people can’t always see past their own terror, disgust, or hatred of certain aspects of our lives, to realize that. It’s really hard at times to keep in mind how disgusted or scared other people are by what you consider everyday. It takes a conscious effort of imagination for me to remember what other people might think of my life, and took a conscious effort of imagination to come up with the above two examples of days in my life.

I mean… from certain ways of describing it people might really think my life is awful and I am perpetually miserable. I have two kinds of severe chronic pain, only one of which has been successfully treated. I use a wheelchair. I sometimes can’t move at all. Sometimes can’t understand my surroundings at all. Sometimes can’t remember anything at all. Assorted bodily fluids leave assorted parts of my body at assorted inconvenient times. I need assistance with some things that non-disabled people consider very private. And the list goes on and on like that. Not everything is pleasant, not everything is what I want, but at the moment that’s what I’ve got.

I talk about those things because they are a part of my everyday life and because I do not think they should be hidden, especially given how scared so many people are of these things. I do not think that hiding things makes them less scary, quite the opposite. I talk about these things because I think people should know about them, who don’t already. Some of them are wholly unpleasant things, some of them are just irritating, some of them are neutral or good when expected to be awful, but all of them are important in some way (not because I in particular am of any extreme importance but because the concepts and the experiences are so common and so under-recognized).

But I am also starting to grasp that one aspect of writing about things like this, is to have some people miss the underlying message which is that in the middle of all these things they view as unspeakably disgusting and horrible, the people living these things every day have a different experience of them than disgust and horror (or much more than just disgust or horror even when these are present), and a much more complex life than the unrelenting awfulness people imagine when they read about these things. Whether “these things” are disability, poverty, reservation life, or any of the other things that I keep finding people outside of them viewing in harsh blanket terms that render them incapable of noticing positive things within unless they’re practically screamed about and highlighted in bright red letters.

So I may take for granted that the fact that I am a reasonably happy person will be apparent in the fact that I write about the same sorts of things most reasonably happy people write about. But some others seem to take for granted that anyone living through the things I have lived through and continue to live through must be reacting in certain ways and finding their life utterly miserable. And that my only motive for describing these things must be as “sordid” as they assume my life to be.