Theme
7:29am
August 4, 2015
My brain refuses to see delirium as 100% meaningless.
One of the things that sucks about being delirious is how little meaning things seem to have some of the time – most of the time, even. When I’m delirious, it feels like I’m in a world of edges, never reaching any depths, just surfaces, and seeing all kinds of dizzying reflections in the surfaces, with my mind chasing them around in circles, unable to keep up or comprehend anything other than fragments of reality. It’s a terrible, empty feeling. And it’s weird because my head is outright cluttered, generally (unless it’s the kind of delirium where everything just fades away, instead of becoming cluttery and hallucinatory) and yet there’s nothing there. There’s just nothing to anything.
And after awhile that gets to me. After awhile I start wondering, is every time that I’m delirious, time wasted, time I’ll never get back, time that’s utterly meaningless in the worst possible way? Especially when it’s filled with hallucinations and delusions that have nothing to do with reality at all.
And yet every single time I’ve been delirious, I’ve also had moments where instead of too little meaning, suddenly everything drops out from under me, and… well in the comic I made, I represented it with a lioness, but that was a symbolic way of getting at something deeper. So even though delirium mostly takes me as far away from reality as you can get, there’s also these weird moments where it suddenly takes me towards reality in a huge way that I can’t ignore.
But all of these things, whether they’re about taking my mind towards reality or away from it – they’re about what my mind experiences. And reality isn’t dependent on whether I notice it at the time or not. And I continue to exist just as much when I’m totally confused, as I do when I’m not confused at all. That includes during times that my brain doesn’t even encode memories from. It doesn’t mean I’m not there, or that what’s happening to me at the time doesn’t matter.
But even with all that – I just get this intense desire to make sure that these parts of my life have some kind of meaning to them, even though everything seems so meaningless so much of the time while they’re going on. Maybe it’s because of that horrible empty meaningless feeling, that I insist on there being some kind of meaning in sight even then. I don’t know. I don’t even know how to say what I’m trying to say.
8 notes
11:20am
July 31, 2015
Can we talk about how autism discourse often revolves around throwing people with intellectual disabilities (and other cognitive stuff) under the bus? Like I’m reading something and it involves literally saying “well at least autistic people can actually be really smart and not have cognitive/intellectual disabilities!”
First, autism and intellectual disability are not mutually exclusive.Second, intellectual disability does not preclude meaningful lives. Intellectual disability does not mean people cannot have input on their own lives and choices.
Stop talking about it like autism is higher up on a hierarchical scale and that’s why autistic people are worth something.
People are worth something because they are people.
This gets especially intense around autistic people who use FC.
I got my head practically bitten off by a facilitator who told me that “motor planning problems aren’t cognitive impairments” and I was like “actually yes they are, they’re where thinking meets movement, that’s cognitive“. But he didn’t get it, didn’t want o get it, he just wanted to keep pretending (and passing along to his clients) this idea that autistic people’s cognitive impairments are just a myth, that autism is just almost like a form of cerebral palsy where your body doesn’t move how you want it to but you think just like everyone else.
Physical disability rights people are no better. I know someone who did a research project on disability pride in the mainstream disability rights movement, and she was shocked to find that most of it boiled down to “at least we’re not retarded”, sometimes in exactly those words.
And there are segments of the DD movement where autistic people are put at the bottom of the barrel.
From what I can tell, generally at the bottom are DD people of all kinds (including autistic people but not limited to us), and people with psychiatric disabilities, and different ones come out on top in different situations, often with people shifting around depending on the situation.
But yeah been speaking out against cognitive ableism in autistic communities since forever because it’s been a thing since forever, and a much worse thing than just about anyone is willing to acknowledge.
10:42pm
October 14, 2014
Dancing with Shadows
Do you know that I don’t know
Anything beyond light and shadow
No ideas, no thoughts
Just reactions
I chase my shadow
I run from my shadow
I touch my shadow
I lean on my shadow
I tap on its fingers
I step on its feet
And we dance
And we prance
And we dance
I can’t see you watching
If I did, I couldn’t care
Light and dark are now
All that I perceive
Not just the colors
But the things we believe
Ideas don’t exist
And neither do you
Unless you bring it
Bring your shadow into view
Then I can dance —
With your shadow, not with you
Black and white
Dark and light
Are all I comprehend
But it’s not so bad
To dance with shadows
Round the bend
[Also at my main poetry blog, which has a comments section.]
3:41am
June 13, 2014
A link to a poem that’s partially about being #exgifted.
(Okay, why is it that when I look for the tag #ex-gifted, either on my own posts or on tumblr in general, it tells me nothing has been found? I’m going to have to start using #exgifted as well just to get posts through, I think. So if you can’t find anything on the tag #ex-gifted, look for #exgifted too. Argh this is getting annoying.)
So if you don’t know what I mean by #exgifted, read this post to understand it.
And then this is a link to the poem:
Be aware… the books were never the problem, it’s the use I put them to, and the use the world seemed to push me into putting them to, that was the problem. Books are wonderful in and of themselves. Language can be beautiful. Habitually choking on language, like choking on water, however, is highly unpleasant, even if language and water are not bad. It’s the drowning that’s bad.
If you want the whole poem right here, it’s under the cut:
2:42am
June 13, 2014
What I mean by exgifted.
I’ve said this before but:
Age 5, my IQ went off the charts of most of the tests they could do. So roughly 135-160 range depending on the test.
Age 15, my IQ was 120.
Age 22, my IQ was 85.
This means that sometime between the ages of 5 and 15 (and we’ll never know when), I stopped being able to get the test scores that formally qualify you as gifted. And sometime between the ages of 15 and 22, I dropped down to the border between low average and borderline. I have no idea what’s happened since.
I don’t believe in IQ scores.
But I do believe that the concept of giftedness, as currently used, is fundamentally connected to IQ scores.
You don’t get kids in the gifted programs unless they’ve passed an IQ test or some other test past a certain level.
You don’t get kids in the gifted programs because they just happen to be an extremely original thinker with an IQ of 70.
You occasionally get kids in the gifted programs because they passed some test other than an IQ test, but there’s always a test, it’s always connected to test scores of some kind, specific measures that they believe show your achievement and potential.
At this point in my life, I fail at those measures of achievement and potential.
That makes me #exgifted. This does not make me a #gifted person who just happens to have a low IQ. This does not make me some weird exception that you can tuck away and pretend that my unusual developmental pattern and test scores never happens. This does not make me someone where you can trot out abilities that I happen to have and say, “These show that you’re still gifted.” I don’t have any abilities that aren’t shared by tons of people who never had an IQ above 85 and therefore never had a chance to be considered gifted. When people focus on my talents as an excuse to call me still gifted, what they’re saying is that they believe that the test scores I got at the age of 5, mean something about me, and that the test scores I got at the age of 22 are just wrong somehow.
This is offensive to me.
I have talents. I have an IQ of 85 (or higher, or lower, it could be anything by now). These things are not mutually exclusive. This combination is not rare. It does not need you to explain it away somehow.
Moreover, I do not have a real IQ that is different from my tested IQ. I don’t believe people have a real IQ. An IQ is a test score. It measures how well you did on a test – that depends on emotional state, cognitive skills, motor skills, attention span, comprehension of the instructions, and a whole lot of other things that all vary moment to moment for any given person, and are even more erratic for people with any kind of cognitive disability or movement disorder. Your IQ can cause people to overestimate you. Your IQ can cause people to underestimate you. Or your IQ can cause people to estimate you just about right. But your IQ is not a thing that is divorced from a test score. It’s just the test score. That’s all it is. There’s no thing inside you that’s an “IQ”, the same way you have eyes and teeth and ears. And IQ scores are not about how intelligent you are.
I generally get two reactions to my IQ scores.
Either people think that my IQ was right when I was five, that I’m a super-genius, that I’m this thing they call gifted, and that all my talents can be explained that way. And usually at that point they refuse to recognize the magnitude of my cognitive impairments, which are huge.
Or they think that my IQ was right when I was 22, or even that my IQ at the age of 22 was much higher than they would have expected. At which point, they see all of my cognitive weaknesses, but they do not see any of my talents. Or they write off my talents as meaningless splinter skills that don’t really come from anything real.
I find both of these equally offensive.
Because both of them make it sound like my IQ meant something.
But I am #exgifted. And being exgifted means that I once was considered gifted. I was set on a certain path through life that everyone but me thought I could handle. I couldn’t handle it. My brain broke. My brain broke in a really huge and spectacular way. And in the process of that, my tested IQ went down, so I stopped counting as gifted by any normal measure of giftedness.
But what also happened at that point? My brain went in the right direction. Because the direction that ‘giftedness’ expected of it was never the direction it could have gone in. I was considered gifted because I had a few talents that were well beyond the average 5-year-old. But not beyond the average 22-year-old by any stretch of the imagination. To stay 'gifted’, I would have had to keep developing all these testable cognitive skills by leaps and bounds ahead of my peers. That’s obviously not what happened.
What did happen? My brain took over. It said, “This is who I am. This is where my real talents lie. And I am going to drag you in this direction if it’s the last fucking thing I ever do.” And my brain pulled, and yanked, and dragged me towards the talents that actually meant something. The ones that were actually part of me. Everyone has talents, and mine were never the ones people expected. I had other ones. And while most of my 'gifted’ talents were falling apart, my other talents were growing and blossoming totally unnoticed by anyone, including me, for years. Only later, in hindsight, could I see how lucky I was. Because if I’d stayed gifted, I would have spent the rest of my life trying to be something I wasn’t, which is all that ever happened for me in the gifted programs. Becoming free of giftedness was traumatic, but it was also necessary, because my talents had always been elsewhere, and I needed to become who I was, not what a test score predicted I should be.
So in the end, everything happened as it should have.
And I wish I could talk to all the other kids who were once gifted and fell off the conveyor belt, as I put it, at the time, in my head. Because it doesn’t have to be a bad thing, it shouldn’t have to be traumatic, it only is traumatic because of the horrible messages you’re hearing about yourself.
I’ve met a lot of other #exgifted people along the way. Most of them are autistic or have other learning or developmental disabilities that caused a very atypical pattern of development – sort of jump-started in some areas, but then lagging behind later, at least in the skills usually measured on IQ tests. Others had some kind of event, like an illness or brain injury, that changed things for them. But most of us have had the experience of being told we’re one thing and having to learn that we’re something else. Of having to learn the cruel lies that hide behind the bright promise many see in the gifted system. Of having to look things in the face about the idea of giftedness, that other people can choose to ignore. Of having people say “That’s not your real IQ” – both about our “gifted” IQ and about our “non-gifted” IQ. And being equally offended either way, and not being able to explain why. Having people explain to us at length why they think we ought to qualify as “still gifted” (even while other people who have the same talents but never had a gifted IQ are somehow not “still gifted”), until we want to bash our heads on something. All of these things happen to you when you're #exgifted.
I like #exgifted a lot better than I like #twice exceptional. #twice exceptional is about being gifted and disabled. #exgifted is about what happens when you fall out of the category of giftedness entirely and have to navigate an entirely new landscape and there’s nobody to help you because nobody understands WTF just happened to you. And I’ve found it really hard to even talk about it, because too many people want to deny that it can even happen. And they deny it in so many ways that you can’t even talk about it. And people who’ve found refuge in giftedness get defensive and don’t want to hear what happens to you when you can’t measure up anymore. And people who think you’re smart think that means you’re gifted and can’t see how offensive that is.
So once upon a time, I tested into the category of gifted, and that created a lot of unrealistic expectations. And once upon a time, I tested out of the category of gifted, and some people were willing to let go of the unrealistic expectations, while others continue to hold onto them. I think that falling out of giftedness was one of the best things that ever happened to me. I wish other people understood that. I wish other people understood what this experience has been like, overall. For me. Not for their experience of me. Not for their estimations of my abilities and intellect and 'cleverness’. For me. For my experiences. For my actual skills, both good and bad. For who I actually am, not who they want me to be. And that’s why I think #exgifted is one of the better personal tags I’ve come up with.
I know there are tons of other people like me.
I know we very rarely speak up because nobody ever wants to really hear our experiences.
As in, really hear them, without all the while trying to decide “Is this person still gifted or not?” Even asking that question shows a way of thinking that can never understand the experience of exgiftedness.
I’m putting this out there for the other #exgifted folks, everyone else be damned for once. There’s too few of us talking about this and too many other people telling us who we are or who we ought to be or who they think we ought to be. But we are what we are, and that’s different for every single one of us. I just want a place where we can be us.
[And if anyone replies to this by telling me I’m too smart / talented / special / something else to be #exgifted, I might actually block you. That’s not a threat, that’s an “I’m so weary of this I don’t think I could take reading it anymore and I want to warn you before you run off at the mouth like that.” I know several different people who refuse to tell anyone their (85 or lower) IQs because they’re sick of the ableist crap they hear when they reveal them. Much of the ableist crap means well, but it’s still ableist.]
4:43pm
May 25, 2014
Have you ever…?
Have you ever gone through your day, and felt as if you were sitting still, and everyone else were whizzing by you so fast that you could never keep up if you tried? When you’re alone, you don’t notice it so much. But when people are around, it’s like watching a VCR tape on fast-forward. You feel like you’re completely alone, in a time-warp, in a bubble, while this whirlwind of people whiz past too fast for you to comprehend or keep up with. The difference in speed is so great that it’s pretty close to unsurpassable. It’s not like you’re going at one speed and someone next to you is going twice as fast. It’s a huge distance, and it makes everyone seem like a blur. And you feel distanced from everyone.
2:13pm
May 25, 2014
Have you ever…?
Have you ever gotten so physically stuck that you couldn’t move at all, for hours? Have you felt the chair you were sitting on dig painfully into your butt, because you couldn’t move even to shift your weight a little? Ended up urinating on yourself? People waving their hands in your face, acting like you can’t hear them, talking in front of you as if you’ve vanished from the face of the earth?
Have you ever felt as if there’s a barrier around you that you just can’t break through? You can do anything you want inside the barrier, but you can’t do anything that would bring you outside of it. People walk around and they don’t see you, they just see your body moving in atypical ways. You can’t initiate the activities you want to do, so you’re limited to a small number of activities, whether or not they’re what you want to be doing right then. There are things inside your boundaries that you can do perfectly, but you can’t step over that line and do things outside the line. And you can’t control where that line is.
That line makes it so that people see you as incompetent. Because you can’t initiate interactions with them, and sometimes you can’t respond even when they initiate interactions with you. Because you can’t just stand up and walk somewhere you want to go, you have to stay where you are, or follow behind someone and trace their steps. Because you stand there rocking from foot to foot with a blank look on your face and can’t look like you’re engaged with the world, no matter how engaged you actually are. And you can’t understand why the line was drawn where the line is drawn. And the line moves every single day, so you can’t even predict what you can do that day.
And when you stick to doing the things inside the line, everyone assumes those are your interests by choice. And sometimes they are things you love doing. And sometimes they are things you are sick to death of doing, but are the only things you can do, so you do them, and resent it when people assume these are your actual interests. Your dream may be to go to college and study graphic design, but you’re stuck lining up dominoes all day long and that’s what people think you like to do. Some days you love the dominoes and some days they stand for everything you hate and every restriction that’s ever been placed on you. Some days you throw them all over the place and people don’t get why.
2:11pm
May 25, 2014
Have you ever…?
Have you ever found that you couldn’t speak, even though you knew all the words that you wanted to say?
Have you ever found that you had no words, that words had no meaning, that even the existence of words, their possibility, the idea of words, was something that could not enter your mind as the remotest of possibilities?
Have you ever stood there while someone talked, and heard only gibberish? Have you ever stood there while someone talked, and not even known that the gibberish you were hearing was meant to be speech, words, or communication?
Have you ever listened to the music in people’s speech and gotten more understanding of that than you could possibly get out of the words?
Have you ever tried really hard to hang onto the ability to understand words, and still only got 10% of what people were saying? Not because you had problems with auditory processing, but because you had problems with language processing at a much deeper level?
Have you ever tried so hard to make it into words that you got stuck in the realm of language? It felt like exile. It felt like being exiled into the most alien of alien planets, marooned and wondering if I would ever escape. Every word was made of metal heated into a forge to near-melting temperature and then hurled into my brain so I could feel the full extent of the pain.
Have you ever tried hard to make it into words, and got stuck halfway in and halfway out? Have you tried to come up with a word, or understand a word, and only heard a small explosion go off in your head, and then unspeakable pain. And that unspeakable pain every time you reach for a word that never materializes, every time you hear a word that your brain refuses to understand. Explosion after explosion, and nobody notices a thing because it’s all inside your head.
2:09pm
May 25, 2014
Have you ever…? (more)
Have you ever felt that everything touching you burned your body, not just in the moment but for hours afterwards? Have you ever felt that every sound scraped the inside of your eardrums, and went distorted like a badly modulated speaker? Have you ever been unable to see because everything was so bright it looked like dancing fragments of light bouncing off of everything? Have you ever been so overwhelmed by ordinary smells that you threw up?
Have you ever been unable to get any meaning out of what you see, because all you can see is color and texture and shape, and dancing fragments of light, and glittery shimmering things in the air? Have you ever been unable to get any meaning out of what you hear, because it’s all just sounds and tones and notes and sound-textures overlapping and filling everything? Have you ever been unable to make sense of the textures around you, feeling them on your skin but not being able to map them to anything with meaning?
Have you ever been functionally deaf, functionally blind, or functionally deaf-blind, even though your hearing and vision might be better than average? Have you ever learned to rely on kinesthetic movement to guide you through everything that vision won’t let you into?
2:07pm
May 25, 2014
Have you ever…? (one of many, I keep writing these)
Do you know what it’s like to have lived in the depths, where nothing can touch you and nothing makes sense? Have you ever been unable to reach out your hand to touch something of interest, because the connections have all gotten scrambled in between? Have you lived before ‘interest’ was a possibility, where there’s no way for your mind to move towards something, or away, simply drifting like a leaf on the wind? Have you lived in a world that was merely swirls of everything around you, nothing standing out as having meaning? Have you watched your body run around the room, slamming into walls, and been powerless to do anything but make weird yelping noises when you try to call for help? Have you ever done that until you literally collapsed from exhaustion? Have you been unable to find your body at all, whether it was moving or still, and needed someone’s rhythmic touch to bring you back to yourself? Have you ever woken up and spent the first three hours of the day screaming yourself hoarse, because you couldn’t get any words out but the things you needed to say were important?
1:57am
December 15, 2013
What is it like to grow up with a certain kind of freedom?
The freedom of not believing that things are required of you just because other people do them?
I can’t even describe how imprisoning that was. And it wasn’t because I was ‘a follower’ and it wasn’t because I was 'weak’ and it wasn’t because I was 'stupid’ and it wasn’t because I wanted to be that way, and it definitely, absolutely was not because I chose to be that way.
It was because I literally had no blueprint for how to behave in the world and the only thing I could figure out that consistently worked, at all, was to model certain aspects of my life on other people.
(And yet in other areas, I completely didn’t do that and disregarded what I was told to do. I can’t explain what the difference was. People are complicated. I’m no exception.)
But I get incredibly jealous of people who always did what they wanted, and knew how to do what they wanted, and knew what they wanted, and knew things I didn’t know.
And incredibly angry at people who assume everyone knows how to be like that and everyone is just fucking born with the knowledge of how to do certain things.
If you can’t understand what that was like for me, you can’t understand my life, at all. You just can’t.
It was like constantly being trapped and confused, and being judged for what I did while trapped and confused, to this day, really fucking sucks.
And there’s something really fucked up about how if you model yourself on normal people you’re doing something wonderful, but if you model yourself on other disabled people you’re doing something terrible. I did both. One got me praised, the other got me condemned as if I was doing the worst possible thing a human being can do. I still don’t understand how the two things are so different from each other. For me, they were the same: I was doing what I saw other people around me doing because I didn’t fucking know what else to do.
And I did that because I am disabled. If I didn’t have a variety of cognitive disabilities, nothing of the sort would’ve happened. Because all of this happened specifically as a response to not understanding my environment – not understanding my physical environment, not understanding my social environment, not understanding my intellectual environment, not understanding my fucking environment.
You grow up not being able to understand the words other people say well enough to get by on your own, so you learn to mimic the responses other people have, so that other people will think you understand, so that you don’t get shit on so badly for not understanding. It’s not that you cognitively even go “I don’t understand this, so I’m going to pretend to understand.” It’s more like “Ouch ouch ouch ouch OUCH how do I stop the ouch? Oh if I do this, the ouch stops. Less ouch. Good.” (And only, sometimes, being able to even figure out that if you do something, the ouch stops. Most of the time you’re not even aware you can do anything about it, or what to do.)
And you live your entire life like a leaf in the wind getting blown from side to side because all you can do is try to avoid the ouch.
And then you gradually grow up and begin to understand where all these things come from. And then you begin to be able to do things because you want to do them, not just because they hurt less than doing other things. And this is a huge accomplishment, and nobody even fucking notices because most other people learned to do that before they even hit preschool. You’re just starting to learn it by the age of nineteen, and it’s a huge huge huge accomplishment and there’s nobody to congratulate you because they assume you’ve been doing it all along. Because everyone knows how to do that. They don’t even question the possibility of someone not knowing how to do that.
And then after you learn to do it you get punished for things you did before you knew how to do that. You get punished for things you did as you were learning to do that. And your instinct is to fall back into the old habits and just avoid the ouch again, but you can’t do that anymore, because you have a set of ethics that won’t let you sit there and take it when you know it’s happening to other people. So you don’t let them silence you, and they try harder and harder to do so and to make you look like you’re doing something terribly wrong.
People who’ve been through it, though, usually know what it means to do things you have to do in order to survive. And they contact you, in smaller or larger numbers, to say “We’ve been there too, and we’re afraid, because we see what people are doing to you, and now we don’t want to speak out about our own experiences.” So this makes you committed to speaking out more, which gets you shit on more.
What the hell is it like to not have to blindly race around trying to avoid pain? What is it like to grow up being able to do things because you want to do them, or even because you feel obligated to do them, but still having a choice in the matter, rather than being bounced around by forces that seem to be beyond your control? What is it like to have so much of that freedom that you don’t even understand what that freedom means to someone who doesn’t have it?
I used to do things because I thought I had to, and then get horribly horribly jealous of someone who just decided not to do the same thing I’d just done. I can’t even describe the jealousy. It was toxic. It probably still is toxic. But I felt it so sharply whenever I did something only to be shown after the fact that it was possible not to do it.
It’s possible not to do things.
It’s possible to have a choice, even if that choice is to go along with someone else, even if that choice is to be a follower. It’s still a choice. It’s still different than what I had.
I did make choices, but they weren't consistent choices. I didn’t have the ability to consistently decide whether to do things or not. Most of the time I just got carried around by the wind.
And sometimes, I feel worlds and worlds and worlds apart from everyone who never had to live that way.
And sometimes, i wish I could live the first nineteen years of my life over again now that I know how to make choices. I think about it sometimes. I remember reading Harry Potter and realizing I didn’t have to take school as seriously as I did. I didn’t have to do so many things I did. But I thought I had to. Everything I ever did, pretty much, was because I thought somehow that I had to, that it was mandatory, that there was no choice of failing to do it, no choice at all. And if I did absolutely and positively fail at one thing, I had to do some other thing, even if it was things that felt horrible to do. But they didn’t feel much less horrible than other things I’d done, the ones that had gotten me praised.
How do you explain this to people who’ve never lived it?
How do you explain not having a choice, to people who’ve always had a choice?
How do you explain not knowing what choice is, to people who understand choice absolutely?
How do you explain vast, vast holes in your cognitive abilities, to people who have no such holes, to people who assume that possessing certain cognitive abilities means always possessing certain other ones, end of story?
How do you explain any of this to anyone?
How do you expect to be understood?
Can you expect to be understood?
[“I’m accused of being deliberately obtuse because people who understand the things I don’t understand can’t understand how anyone can possibly not understand them. (That sentence makes perfect sense. If you have to work a little bit to process it, you may get a slight taste of what it’s like to have a language processing problem.) My greatest difficulties are minimized, and my greatest strengths are invalidated.” -Jim Sinclair]
Can you want to be understood?
Can you want people to care and believe you, when you describe something so far outside their experience (this isn’t disabled vs. nondisabled either, this is particular-kind-of-disabled vs. not-that)?
Can you expect anyone to even give a shit?
Why does this hurt so much to even write? I know I’ve written about these things before. I just… don’t expect anyone to care, don’t expect anyone to believe me, and feel weak and dumb for caring whether people care or believe me, and especially for writing about my doubts and fears in that regard.
I can definitely feel my ego thrashing around in unproductive ways here, but at least posting this seems better than not posting it? Pardon the ego-thrashing, try to see through to the message underneath? I swear it’s there. And it matters. And if you understand this, maybe someone who isn’t me, who’s going through the same stuff, will benefit from your understanding? Because seriously, being trapped in this manner and not knowing how to get out is horrible, and being judged for what you do when trapped in this manner is even more horrible.
2:23pm
November 18, 2013
If you don’t want to click on every single picture to make it bigger, here is the PDF version:
https://dl.dropboxusercontent.com/u/92647909/Thought.pdf
Basically, I kept seeing that “Rarely do I have a THOUGHT…” thing circulating over and over through my dash over the past few months, minimum. And I kept seeing all these people I know going “Yes! That’s totally and completely me!”
But I couldn’t say that. Because it completely doesn’t explain how I think, AT ALL. So I made one that did. It’s longer. Because my thoughts don’t translate so well. So it takes longer to talk about them. But regardless of the difference between my and the original person’s thoughts, we get the same result: Either long-winded, or inarticulate.
Transcript below the cut:
4:22am
April 19, 2013
Okay that really didn’t work.
I was going to tell a story about a conversation between me and a friend about my new assistive tech, but I literally just started typing nonsense. Like the sentence structure made sense but the words were just random. Seems my brain has decided it is going to make it really hard to use the right words. So I’ll save that post for another time. Grrrrrrrr.
12:47am
March 21, 2013
I am a frustrated writer. But not the usual kind I guess.
Ever since before I went into the hospital last fall, there is an article I have wanted to write. It is an article based thoroughly in love. It is an article describing life and death issues. It is an article that could be written from many positions. But I am in a relatively unique position to have knowledge required for the article in my head.
I will not describe it further, because the last thing I need is to reveal the contents before the article is finished. Describing it in summary is not the same as writing it and would draw reactions from those who imagined they knew what it was about (and failed).
Last August I stopped eating all but broth and tiny amounts of grits. I then aspirated, as happens much more often with every passing year. I was weak from not eating. I got aspiration pneumonia. I became severely delirious. I was admitted to the hospital and treated with huge amounts of IV antibiotics. This made my stomach even sicker. After the pneumonia was cured, they worked to diagnose and treat gastroparesis until I could come home.
I was in there about five weeks. I was still severely delirious upon arriving home. I went in and out of it and stayed really bad until I worked out my own cognitive rehab program and pulled myself further and further out of delirium by my fingernails. I taught myself to read books starting with young children going all the way to adult. I can still tell my cognitive state by whatort of conver kind of books I can read.
Writing has proven harder. You may see me writing things like this. But this is more like talking to someone than the kind of article writing my main blog relied on. My main mode of verbal communication is writing at this time in my life. Writing as communication is not as hard. But other kinds of writing are totally different. There are many kinds of writing I simply can’t do, or can only do right when inspiration strikes, and that is not good enough for what I want to be able to do.
Delirium is a kind of brain damage. I have had delirium every hospitalization over the past several years. My durable power of attorney has done some reading and estimates it may take two years to regain my previous cognitive skills, if I regain them at all.
Delirium in me seems heavily tied to pain and nutrition. The more pain the more delirium. The less food the more delirium. With gastroparesis I’m having real trouble even with my liquid diet of Ensure. My pain level has been high. Hospitalization makes my delirium far worse and I’ve already been hospitalized once more for gastroparesis. Delirium is a spectrum from mild cognitive dysfunction to severe loss of contact with reality, and usually has an in and out pattern like you can be lucid one moment not the next. And it’s always caused by some sort of illness, pain, etc. So I am actually experiencing a mild degree of delirium right now, in that I haven’t fully recovered my cognitive functions.
Also I am affected by an ongoing loss of energy that threatens to suck me in like a whirlpool. Every time I am hospitalized I experience severe exhaustion beyond what any healthy person and even many chronically ill people can imagine. Then I have to climb back from that. In the past several years, I haven’t climbed back before another hospital stay or major illness has happened.
Since January I have had to be on antibiotics four or five times for aspiration-related chest infections that verged on but did not become pneumonia, always in extra danger because I have bronchiectasis. I also got a head cold that would have been minor in a healthy person but very much set back my recovery.
These things keep happening. Drains on my mental resources. Drains on my physical resources. And mental resources are after all physical so they are affected by drains on physical resources – that’s how delirium happens. It feels like it may never end.
And in all this I am unable to write that one article. The article that I feel perfectly positioned to write. The article that I have never seen written yet, that could really help a lot of people. A very wide range of people.
It means so much to me to write this. Not for ego-related reasons. But because someone has to write it and here I am, perfectly in place to do so. To my knowledge, people have skirted the topics but not written the same thing.
And I can’t. Not right now. I’m frustrated. Granted I’m sick and infected and been sleeping all the time and can barely read children’s novels. But still. When will I write this? I don’t know. I don’t know anymore if I’ll ever write it. I feel trapped and discouraged and frustrated by all this.
I know I may eventually write it. Maybe one day I will realize that even if things aren’t getting better, I’d better write it now instead of assuming there will be a “better time” I can write it. I don’t know. I have no idea.
I’m just frustrated that nothing I do seems to produce the article I want to write. Maybe this frustration is pointless. Maybe I need to find a way not to be frustrated, or a way not to care about being frustrated, whether I ever write it or not. I don’t know. I don’t know.
10:35pm
March 5, 2013
And speaking of muddled my brain.
My DPA told me today that I probably have a couple years (barring further setbacks) before my brain goes back to the baseline it was at before the five weeks of delirium hell last year.
She said I’ve done the most straightforward part in forcibly dragging myself back to a semi-adult reading level again. But that the rest of getting things back will likely be much slower and more subtle.
I guess that’s just one more obnoxious medical thing to face. And it’s not like I’ve never experienced anything like this before. It took me years to get back to my best possible capacity after being on high dose neuroleptics for several years. And I never got back all my old cognitive skills after that. So it’s not like I can’t handle another long recovery with possible permanent subtle brain damage again.
It’s just… I’ve had this nasty habit these past few years of being hospitalized before I can recover physically or mentally from the hospital stay before that, and the one before that, going back five years or so with permanent losses there as well. (I wasn’t always stuck in bed all the time, after all, any more than I was always in a wheelchair.)
But for now I don’t seem to be reacting emotionally to this news too much. I trust her judgement or she wouldn’t be my DPA. And I suppose I’ll react whenever it hits me. Which isn’t yet. But I’ve known for years that delirium is brain damage and that this is far from my first encounter with long-term losses from it. So who knows. I’m just writing it down to record it somewhere. Everything seems to be happening fast and at once.
I might actually look around to see what’s available in the way of cognitive rehab because I’ve already done everything I can do on my own (force my brain to work even when it wants to take a nosedive into weird-land). Even this hospital stay I was working as hard to minimize delirium as I was to minimize vomiting – with partial success on both fronts.