Fey is snuggled up to my arm (The weird mark on my arm is the remnants of a blown vein from the hospital.)
And I’m trying to think of a way to persuade her that she isn’t the only person who takes care of me.
People think it is just a joke, when I say that she sees herself as my mother, and me as a huge, stupid kitten that she loves with everything in her.
Except its true. That is how she sees me. And she thinks she has to protect me. She doesn’t understand that lots of other people protect me. That lots of other people care about me and take care of me. She thinks she has to do it all herself. And she drives herself crazy from anxiety all the time about how she is going to help me. And if she can’t help me at all, like when I am in the hospital, she completely loses it until she can.
And it’s not good for her to think like this. She needs to be able to relax. I’ve told her over and over again that she doesn’t have to do this, that she needs to calm down a bit and stop freaking out because I have tons of other people in my life who love me and take care of me and protect me. And that one cat can’t do all of these things forever.
I know she thinks about what will happen when she dies. I don’t know how I know. But she does. Like all mothers do. I worry that if there’s some kind of afterlife she might resist going because she wanted to stay and take care of me, and that would be horrible for her, and less effective for her purpose of helping me, than allowing herself to become part of everything the way she should. And somehow before she dies I need to convince her it’s okay to leave me.
People think animals don’t know about death but that’s completely stupid. They know. She knows. I can see her thinking about it sometimes. Don’t ask how. I don’t understand how cats communicate these things, but they do, and she does, and I can see it. Sometimes I can see the worry written all over her body and I just want to hold her and tell her everything will be okay whether she’s here or not.
This is totally different than what I mean when I say she looks old, though. When she looks old, I mean she looks deep, the way some people become deepened with every year of their lives. She’s one of those people and her age shines out of her in a. Beautiful way sometimes. I try to convey my respect sometimes by calling her Grandma Fey. I thought her aging would terrify me, but it only fills me with wonder.
Anyway. Both for her sake now and in the future, somehow I have to convince this cat that my fate isn’t on her shoulders alone. She takes too much on as her sole duty alone. And it fills her with stress and worry that she doesn’t need. She’s overly responsible when it comes to me.
Again, I don’t fully know how all this is communicated. It seems to be written all over her sometimes. Cats are like that. They have all these layers of meaning that change and shift with their thoughts and mood, and if you can read at least some of those layers, which many people never know to learn or never bother to learn, then you can see a lot about them. That’s how a whole lot of feline communication works, and to them it’s perfectly ordinary.
I just never want to see her again so worn out and exhausted with anxiety that she flops down on the floor instead of eating her food. And I don’t want her worrying about her big stupid kitten so much that she fears dying — or moving on after death, if that’s how things work — entirely for that reason. And it’s painful to watch her worry every single day since I’ve been home from the hospital. When I go to the hospital I am more concerned about her than me, because she gets scared that I won’t come home, and she lives with that terror every single day I’m in there.
And it’s hard to explain things to a cat. They may communicate certain things very well. But it is hard, very hard, to say certain things to them. I try mostly to think about those things and let the thoughts sort of flow into my body language so she can read them from my body. But even then. How do you tell someone who’s been taking care of you for most of their near 14 years, that their drive to take care of you is… sort of overly driven? That’s hard even to tell humans, let alone cats with the big language and cognitive differences. It’s not that they’re unable to comprehend these sorts of ideas — mothers of any species that cares for their young, feel this way and think about these things. It’s that for cats, thinking and communicating is somewhat different than for humans. And bridging that species barrier can be difficult for anyone, regardless of now good they are at communication with cats in general.
And I want her to feel better. All mothers worry, but some mothers worry too much. And she worries too much. She doesn’t understand that this job isn’t entirely hers and hers alone. That other people will protect me, other people will take care of me, other people are already doing these things, she’s got plenty of backup.
Maybe it comes from her earliest years with me. When it was us and us alone, with only one other person helping me on a daily basis — but only from afar. When she learned quickly how to get me moving if I couldn’t move, how to watch over me during a seizure, how to make sure I didn’t overexert myself. And all sorts of other things that put her more in the role of mother than baby even though she was basically still a kitten. (And that qualified her as an assistance animal.) People call her my baby but she is more like my mother. I seem to have three different people in my life who’ve taken on a maternal role — my real mom, Fey, and webmuskie.
And Fey takes that role quite seriously. The problem is she takes it too seriously. And that’s not good for either her or me. How does a big stupid kitten convince a real cat that she doesn’t need to put herself in such an intensely responsible position? I still don’t know the answer, but I have to figure it out.
Hospital pain isolation hell alone everywhere
Can’t even think. Pain surges into different body parts — crackling and burning, worse on any part touching the bed. I turn over and my arms and legs hurt with the effort, and now it’s the other side of my body that’s hurting now. I constantly shift my own position, make the front and back of the bed go up and down, or use pillows, but things only get worse.
But that’s not the only pain going on. My entire spine from my neck to my butt is on fire. Turning my head makes pain show up in my shoulders, arms, and even legs. On the right side of my neck, muscles spasm, and if things aren’t taken care of regularly (such as nerve blocks), spasms can travel down that arm. Cold IV fluids going up that arm sometimes trigger spasms.
My joints all hurt as well. They’ve hurt for years and only one possible reason has been found. It’s not arthritis. I learned to stop mentioning it until I was examined for joint hypermobility syndrome, which causes my joints to bend too far, causing more wear and tear on various parts of the joint. Like the time I picked up a book and sprained a finger into a permanently different shape. My joints all ache a lot though. And sometimes have such sharp pain I’ve had to wear braces and stuff. Sometimes my hands and feet feel like something inside is popping out of alignment, causing a sharp intense pain that only lasts until my embarrassment at having no current way to answer “What’s wrong?” Then there’s a dull but intense pain that lasts an hour or so.
Something about my legs makes it so that when I could walk better, ankle braces kept me (mostly) from feeling like fire or lightning was traveling up my legs when I walked or stood.
I have some kind of central or neuropathic pain. It causes pain all over my body that feels like burning and sometimes ice at the same time. It’s some of the most intense feeling pain I have ever had. It never goes away. Sometimes it’s worse in my arms and legs. Sometimes it’s worse in my stomach and intestines. It can take ordinary heartburn and make it feel like someone is pressing a sheet of metal onto my back, like a hot iron, or a cold so intense it burns.
I get plenty of pain in my digestive system on my own without the neuropathic pain. I get a lot of heartburn. I have a paralyzed stomach, called gastroparesis, and that causes all kinds of pain. Especially from gas and bloating. My stomach turns hard as a rock. I also get a lot of bowel blockages through severe constipation, and even the minor partial ones I can deal with at home get very painful.
If the gastroparesis has been making me throw up, or bronchiectasis plus lung infections or pneumonia have been making me cough, there’s lots of potential for pain. Coughing and throwing up can pull muscles in all sorts of locations. They can make all breathing hurt. They can bruise, dislocate, or break ribs.
And for some reason, for me, breathing often hurts a lot all on its own. So do a lot of other normal everyday activities. Chewing. Swallowing. Having stuff go down the esophagus. Touching anything, even clothing or bed sheets. Being bathed. Moving any body part. Sitting or lying on anything other than thick memory foam, gel, or aan equivalent.
I have specific locations for nerve pain as well. I have trigeminal neuralgia, which causes intense pain on one side of my face. Sometimes it’s intense background pain. Sometimes it feels like lightning traveling down my face. Eye movement, cold air, and touching certain parts of my face trigger it.
This isn’t an exhaustive list of the kinds of pain I experience. It’s just an explanation of why, away from my bed at home, and unabletv to swallow my Lyrica and Trileptal or take them IV, my pain level quickly skyrockets to something unendurable.
But as I lie there, with every move I make an attempt to deal withe the pain, every move my brain makes is an attempt at denial. The bed is just uncomfortable. The writhing and moaning or screaming? Maybe a med reaction. I begin to wonder why only I and a small number of other patients I know of, are making noise because of pain. While other people are relaxed, holding conversations, smiling and being sweet for everyone. I can’t. I just can’t. And it burns me up that whatever my intent I can’t be a pleasant sort of patient. I feel like I must be weak and weakness is bad.
Delirium always accompanies pain for me, so at minimum my thinking gets foggy and at maximum I get hallucinations. It feels like my mind jumps off cliffs. If I can cling to the cliff I can think a little. But if I jump off I end up in a weird repeating place of things I either don’t remember, or remember only bizarre visual hallucinations.
Meanwhile the pain is still there. What pain depends on why I’m in the hospital and other factors of how my life is going right then. If treated, sometimes the delirium vanishes when the pain does.
Communication with others becomes hard. Even typing in my iPod Touch or iPad seems to hurt like hell and every letter is a strain. So it’s hard to say anything even if I hit the call bell.
They always want to know things about the pain. I can’t tell them. It is so many things. And the pain affects my cognition. And I hate the pain scale because the levels between 8 and 10 are this gigantic landscape that dwarfs the rest of the scale. And I often want to refuse pain meds because of nausea, when it would be better for me to take them and chance the nausea. Plus people get annoyed you used the call bell even for a legit request, and are impatient with a slow communicator. Sometimes they try to force me into yes/no questions just to speed me up when the world doesn’t work that way.
And so I lie there. In so much pain every second is torture. I’m not exaggerating right now. Hell, I’m leaving things out. And when I can think, I find half-assed ways to rationalize it to myself.
“The hospital is so busy. To them I’m not a person. I’m a bed. If I act like an unperson, maybe other patients will get the treatment they need without me slowing them down. If I’m an unperson, this pain doesn’t exist, it only belongs to a person who isn’t real. I’m not real anymore. I don’t matter like the good patients matter.”
And on like that. I survive those situations only by happening to exist long enough to last through them. I go without most of the pain meds I’m allowed to have. I twist my brain into knots. I cry myself to sleep. And I can say nothing for it other than it’s miserable.
I finally told my DPA about all this. She hadn’t realized quite how bad it had gotten. She has done her best to make sure I get truly good pain management in there.
I still have nightmares about it. Of lying there too weak to turn while the bed digs into me. And believing I was somehow being the best patient I could be, by never using my call button even if I couldn’t stop myself crying or throwing up or screaming or moaning or thrashing or writhing c or whatever. Like the best I could give them was not complaining while my body complained every second of the day without my consent. It’s so stupid and I do it every time.
It also scares me. To ever be in that much pain again. I can remember during one of my blockages lying there semi-delirious and wishing I could die. And I am not prone to depression these days. Those thoughts just happen. We don’t always act on or even discuss them but they happen. Trigeminal neuralgia was even nicknamed the suicide disease, before treatments became available. I don’t of course want to die for real, but it’s a thought people have when they feel like they have no options.
I can’t get the feeling out of my head. I think someone might have been right when they suggested PTSD flashbacks. An additional element of helplessness here is that at the hospital they always move my wheelchair into the hall, and in hospitals I’m always too weak to wall that far. So I’m literally trapped in the bed when this is going on. Something true of some but not all patients.
And I’m somehow sure I’m not the only person. It’s such a lonely existence but in a hospital you’re surrounded by dozens of people it might be true of. At times they even isolate you further — move roommates who don’t want to hear the moaning, they are very considerate of the effect you’re having on other people, but not necessarily so considerate that you are a person even when you can’t communicate because of pain.
Some people are wonderful of course. Some nurses can work wonders with pillows and dry heat and stuff. But most often, pain with accompanying delirium has turned me into an undesirable person. The kind they mutter rude things under their breaths about because they think you’d never understand. Most nurses of course are between the best and the worst, and most of all, busy and understaffed. So even some very good ones will at times ignore you as an unperson because the system forces them to view you by how easy you are to treat.
And that’s how you get the horrible isolation of level 9-10 pain, delirium, and being seen as nothing more than a lump of flesh connected to an IV pole that needs changing at times. All other requests take 45 minutes from the time of hitting the call bell. So if you can’t sit up that long waiting for help wiping your butt, go to bed unwiped and develop a fungal infection around that area. Which itches terribly but you can’t do anything about it. Which is just one more crappy thing about being there.
I’m not writing this to whine. I’m writing this to give some idea what our wonderful modern hospital system can be like to someone with chronic pain and multiple disabilities and chronic illnesses. I want people to know because I want a way to do something about it. Not just for me but for others. I am always aware of it in others while I’m there and I know it’s just as bad or worse. I can’t stand it. Even when I’m gone, it’s like a kind of pain I carry around with me everywhere with the knowledge of all the people it’s happening to all over the world, from the best hospitals to the worst.
I was telling my friend about the black widow spiders in my bathtub. The ones that made me so reluctant to go in there when this same friend had me set up a speaker phone in the bathroom and prompted me through the vague motions of a bath or shower.
She said “You never told me about that back then.”
I said “You do realize that I was discovering true, consistent communication for the first time back then?” Or more specifically, the first time such skills stuck.
And she said “Yeah it seems like these days you’re always telling me far more detail about things that happened, stuff you never told me before.”
I can’t describe what it was like. I knew I was able to say some things. But other things were impossible to say. And I’m not talking about sophisticated analysis of my emotional situation. I mean “there were black widows in the bathtub”.
I know I used to scare her with phone calls like “So… my kitchen is on fire, what do I do?” But I think she gets scared in retrospect about dangers I wasn’t telling her about. Not to be secretive but because I couldn’t.
And my life at the time needed describing for many reasons. One was that nobody I knew online understood why I was so hell-bent on obtaining services. Only the one who walked me through things over the phone every day had a good idea why, and even she didn’t know how bad things were. But when agencies sent questionnaires about my “typical day”, I couldn’t fill out concrete obvious details. Only my mentor seemed to even understand the communication issues. She wrote something like, “Amanda’s communication skills are deceptive. She will talk about an apparently irrelevant subject at great length while failing to mention she hasn’t eaten in days.” And that was the problem. I couldn’t say what I wanted to communicate, I could only say other stuff.
And I was so frustrated online. If you think autistic people’s parents can be bad now. Back then they couldn’t even conceive of someone like me. I’ve spent all those years trying to carve out a space for us. And now they’ve at least heard of people who can write online but not take care of themselves. Before, they didn’t even exactly reject the idea, it was simply unthinkable.
I badly wanted to tell them many of the details of my life. I could hold them in my head. But it took me at least five years to even scratch the surface with words. And to be told all that time that I was clearly wonderful at communication because I could discuss other topics online, was more than I could stand. There was always more I couldn’t say than I could.
And they tried to tell me stupid shit like “that just proves you’re smart and the stuff you can’t communicate is the stuff all smart people can’t communicate”. No. No. No. I’m talking about black widows in my bathtub, urine on my floor, getting stuck all the time, concrete things that practically everyone can say. I couldn’t. Not because of emotional reasons but because I had, and have, a striking communication deficit. It’s just that you have to know where to look. You have to not fill in the blanks and assume if I can say this then I can say that. And that it usually takes between five and fifteen years of brain-bending work to be able to say something new.
Do I have a distortion field around me?
I’m asking because stuff is getting even more fucked up than usual.
I’m having this series of conversations. Where one of several things happen:
1. People get hurt by something I didn’t mean.
2. People get offended by something j didn’t mean.
3. People “disagree” with me by writing a long post responding to things I never said. Often, I agree with the contents of their post.
4. People respond almost entirely, or entirely, to things I don’t mean, whether hurt, offended, disagreeing, or agreeing.
Then I attempt to explain myself and it happens again, and again, and again, and again.
And then today, weirdly enough. I post a link to a conversation started by someone other than me, that I took only minimal part in. And people respond to that almost entirely with responses to things the person I linked to never said.
Which weirds me out and makes me ask the distortion field question because I’d thought it was me. But now it’s happening when I just post something by someone else.
I attempted to explain, to the best of my ability, what the OP had actually meant. I mean I’m not a mind reader but I have a pretty good idea. I’m already predicting which parts of my explanation will be taken wrongly, and how. Because there’s only so much detail I can go into before it becomes infinite.
So… Yeah. Really confusing and somewhat upsetting. I feel like I can’t communicate with anyone.
Other possible explanation I just thought of.
I already know that the thoughts I have and the opinions I tend to come up with, are far outside the realm of what most people, even many autistic people, expect to even exist in the world.
So when I write them, people see the closest thing to their expectation as possible. And respond to that thing as if it’s what I wrote.
What if the people whose opinions I’m attracted to the most, tend to be the same way? And therefore, what if they’re responding in the same way to them as they respond to me?
Creates the same problem though. How the fuck can I communicate to anyone whose assumptions about the world literally don’t include my existence or the existence of my thoughts or opinions?
I have been assuming that these problems are just ones where assumptions are temporary. Where someone says “I didn’t mean what you just said I mean” and I say “Sorry” and we move on. But what if the assumptions in question are more permanent structures? Things heavily attached to the person. Things that will resist going away. What then?
And I don’t want to get into what categories of assumptions might come into play once I start saying ‘No, this isn’t what I meant, and that isn’t me.” Because I don’t want to put ideas into their heads that they might find more plausible than they find actual reality.
All of which makes me loathe communication sometimes. But I don’t want to only communicate with people who have compatible assumptions either. ARRRRRRRRRRRGH.
Different — No Different
This is a reply to this post that got so carried away that I am making it a post of its own. Don’t worry, I do eventually address your post directly.
There’s something that happens. And I don’t know if it applies to how other people talk about us. But it definitely applies to how we talk about ourselves, and it’s responsible for some conflicts between different disabled people. Which is there are different ways disabled people can get treated by others.
Note that I’m talking about disability. But this can apply to any group of oppressed people, or even just plain unusual people. So keep that in mind, and you’ll see a lot of conflicts suddenly making more sense.
Some of us are treated as if we are essentially the same as everyone else. People assume we are mostly just like them. They think we should just try a little harder. We are usually expected to live with, work with, go to school with, and compete with nondisabled people, and blamed if we can’t keep up.
And some of us are treated as if we are fundamentally different from everyone else. As if we have no common humanity at all. Often we get stuck in fully segregated environments. Or are told we ought to be. People view us as completely incapable. Maybe not even people.
And a lot of us get both, in different situations.
Although… I also see this thing going on. Where an organization (like Aut$peaks) will talk about disabled people in a certain category (like autism). And it will make descriptions of autistic people that sound at first glance like they’re putting all of us in the second category. But if you look a little closer at their statements over time, they’re not. They’re actually saying “The only autistic people we are talking about right now are in the second category. Those autistic people in the first category? We are using them for our 1 in 88 statistics. But other than that? They might as well not exist. They’re out there, but we don’t really give a shit as long as they shut up.”
To also be clear: I am not saying these are two genuine categories of autistic or otherwise disabled people. I’m saying these are two ways we can be treated. Aut$peaks thinks they’re real categories based on inner traits. But I don’t.
But sometimes people assume that Aut$peaks is putting all of us, and therefore them included, in the second category. But really many of them are people Aut$peaks is putting firmly in the first category — and ignoring the hell out of their existence. Which is subtle but sometimes important.
Anyway people who are currently being put into the first category tend to want to tell the world that no — they’re not the same as everyone else. They’re different in all kinds of important ways.
And people who are currently being put into the second category tend to want to tell the world that no — they’re not different than everyone else. They’re the same in all kinds of important ways.
Most people experience a mix of these things. Among most people unfamiliar with me, and some people familiar with me, I currently get treated like I’m in the second group. Among many people familiar with me, and some people unfamiliar with me, I currently get treated like I’m in the first group. Emphasis on currently for all of this. Only a very few people in my life see who I am underneath all that.
Examples of being treated like I’m in the second group:
I attended a science museum with a staff person and a friend. We watched an exhibit on roller coasters. A man saw me talking on my communication device. He approached and asked how the device worked.
I explained that I type things into it and it speaks them out loud.
The man looked profoundly skeptical. He thought for a moment and said, “Can you tell me what we just saw then?”
I was too enraged to even put my fingers to the keyboard.
The man got all self-satisfied. He said “I didn’t think so!” and walked off while the staff person yelled at him that actually I could, and my friend, who was a part-time aug comm user, tried his best to disappear.
I later realized the guy thought the whole thing was a computer trick. That I was just hitting random buttons and somehow answers were coming out. But that if he forced me to come up with a novel answer, I couldn’t.
Another time, I was hospitalized for a physical illness. I was often too sick to use my communication device. At one point, I watched a medical professional explain to another, that I had the cognitive functioning of an infant, regardless of the age on my chart.
Neither of these men regarded me as a person on the same level that they saw themselves as people. I’ve observed that people like that tend to regard me as a weird combination of a person and an object. Shaped like a person. Alive like a person. But not-real in the same way most people see objects. Not worth considering, ethically, on the same level that you’d consider another human being. The same sort of idea the r-word conjures up.
And my first impulse on being treated that way is to tell them that I’m just as much a person as they are. That I have deep similarities to all other people. That, whether I’m exactly alike or not, I’m fundamentally equal. As in, I have the same value as everyone else. (Which is what equality means. Anyone who tells you it means sameness in various other characteristics doesn’t fully understand it. But someone can easily use the language of sameness to mean exactly what I mean by it.)
I’m different from other people in very important ways. But I’m not going to be emphasizing those differences at that exact moment in time.
Some examples where I’ve been considered the first type of person:
There’s people out there who assume that the only kind of communication problem that really exists in the world, is the inability to use your mouth to talk. That is actually the least of my communication problems, it just happens to be the most obvious. So I will be sitting there unable to work out how to say something. Maybe sitting still, maybe trying futilely to use home signs. My home signs are notorious for being confusing or ambiguous.
So I’m getting frustrated and the other person is getting frustrated. And most times their first impulse is going to be to blurt out “JUST USE YOUR KEYBOARD!”
But that of course doesn’t work, because if I could “just” use my keyboard, then I probably would. The problem may be trouble initiating or switching, or trouble using words, or trouble finding a particular word. But it’s sure as hell not that I forgot I have a keyboard, or just didn’t feel like using it.
Another problem I encounter is mostly Internet-based. People see that I can write well — at least most of the time, and during times that they can see me. And so they view it as impossible that I could have any significant cognitive impairments. And they also view it as impossible, except in the case of purely physical impairments, that I could have trouble with daily living skills, let alone the degree of trouble that I have.
In both of these examples, people consider me just like everyone else, but with one or two minor differences. They have trouble seeing that the differences run much deeper, and much stranger, than they’re accustomed to.
So in both of those situations I would be telling people that I am different in all kinds of ways they are not aware of or acknowledging. I would be explaining those differences in detail. I would be wanting the other person to acknowledge how different I was. Because in assuming that I’m similar to them in these ways, they’re not grasping who I am on a deep level at all.
The conflicts between disabled people (among others) about these things, usually happen in specific contexts. Note that all of these things may apply to the people in general, or they may only apply in the specific situation the conflict is happening in:
One person has mostly been considered in the first way, and the other person has mostly been considered in the second way. The first person is talking about how different they are. The second person is talking about how similar they are. One or both people, doesn’t understand why the other is reacting how they are.
And that right there is enough for a serious conflict.
“Whiner. You’re probably just pretending to be different for the hell of it. Some of us have real problems.”
“You want to deny our differences.”
“You want to deny our common humanity.”
“You want to be the same as everyone else.”
“You’re obsessed with difference for its own sake.”
“Why can’t you just admit that we aren’t all the same?”
“Yeesh. We’re all people. Get over yourself.”
To make it worse, both sides are generally fighting for our lives.
Disabled people die all the time because we’re considered so outside the realm of what it means to be human, that our lives aren’t worth living and therefore not worth saving. Or because we are denied jobs because we couldn’t possibly be competent at anything.
Disabled people die all the time because nondisabled gatekeepers see only our similarities to them. So they deny us disability benefits. They deny us services. They deny us every bit of assistance we need to survive. And they do it because they see — or only think they see — one or two things we are good at, and think we must be good at everything. Or we get services, but we don’t get enough, or don’t get the right ones.
So people who have mostly been considered only different, or only the same, know they are fighting for their lives. And so when they fight against each other, they fight hard.
Of course plenty of disabled people have been treated both ways. And we are probably the most equipped to notice the problems of seeing it only one way, or only the other. That is unless we experience one as so much worse than the other that we ignore the other one. (Or for that matter if we romanticize one or the other.)
So that is one way that we can be both the same and different, and want to emphasize both, without being contradictory at all.
Not that that’s guaranteed to be what’s going on here. But it’s a possibility. It’s a possibility even when it’s a nondisabled person saying these things about us.
And it’s a possibility that someone means something similar but not quite the same. Because ‘different’ can mean more than one thing. Or refer to more than one area of a person’s life.
So my guess is that when they say we are no different, they mean that our value is no different than that of other people. And when they refer to us as people who are different, they mean we have differences besides differences in value. Then “different - not less” means we have some differences from other people, but are no less valuable. (Same as “they are no different”.)
Nonautistic people don’t usually use language as precisely as some autistic people do. The person in question also probably didn’t think it through as clearly as I just did above. But it doesn’t necessarily mean they’re using doublethink. I mean they could be. But I don’t see any signs they absolutely are.
An article on some of the topics I discuss above is Critic of the Dawn.
Tagged NSFW just to be on the safe side: The clusterfuck icon is a tiny but explicit drawing of a tangled orgy.
[Screenshot of a communication page in the Proloquo2Go software, titled Cussing. Each square has different words, each with an icon representing it. Some squares are folders that go to other pages full of words. Across the top is the area where the entire message is printed. The message across the top is You are shitting me.
The squares are: Pronouns (folder). Stop. Are. A. An. Off. Crap. Crappy. Shit. Shitty. Bullshit. Dipshit. Ass. Asshole. Asshat. Fuck. Clusterfuck. Piss. Hell. Damn. Douchebag. Douche nozzle. Bollocks. Bastard.]
[A second screenshot shows the same message at the top, only it says You are. Everything is dark except squares showing the following words: Shit. Shit. Shits. Shat. Will shit. Shitting. Shat.]
I had to do this. Since so many communication aids for disabled people seem designed to make us sound like children, and particularly angelic children at that. Because it is so easy for parents and teachers and staff to just prevent us swearing altogether, rather than allowing us a choice in the matter.
Its one of those icky areas where they dont want you doing something so, since for once its in their power, why not make it impossible? And they never even consider how that limits us, because its a bad thing to do, in their eyes, so why does it need to be possible? Even though theyd surely object to someone reaching out and shutting their throat any time they said anything bad.
Im also ridiculously pleased that the software actually rendered shits past tense as shat. You cant program the contents of those little windows you get from pressing and holding a button they just respond to the part of speech it is (which also affects the color of the buttons border). Its that feature which allows me to use are without adding every other form of the word.
The words across the top are just ones that seemed to make it easier to create sentences. Like off becomes fuck off, piss off, its pissing me off, etc. And stop for stop being an asshole. I might rearrange later but those few words seem to create a huge range of possibilities. I got as many icons as possible from within the software, but they are horribly limited with regard to explicit body parts. (Which is horrible because it restricts peoples ability to talk or ask questions about their body, including but not limited to medical stuff, sexuality, and abuse. The PCS symbol system has very explicit icons, but this software isnt using PCS and I didnt want to scan my communication books just to make this page.) So I had to go to the web for a lot of it.
OMG I want to curl up in a ball under my bed.
I updated my communication software. There was a way to make it keep my old vocabulary but that destroyed it and for many reasons had to reinstall. So now it’s only the new vocabulary. And the new vocabulary is totally different. They had a choice between vocabularies do why wasn’t their old one one of the choices?!?!
And now… I can’t find anything. What I could find looked like yes maybe it will work better in the long run. But until then. OMFG. I can’t find a damn thing. My head is spinning. I’m nauseated. I’m probably getting a migraine.
And it doesn’t make sense. I can’t even read the words on the screen. It’s just a bunch of meaningless lines. I want to hide from my iPad but I can’t because it’s how I talk and use the net and stuff. But I feel like someone has gone into my head and rearranged my brain and…
I seriously wonder if I’d do better writing an entirely new vocabulary from scratch, basing it off my old customizations and the stuff that’s still on my iTouch. But I probably would never be able to focus long enough. That kind of thing makes my brain turn into words and blocks and crap.
Every time I try to look at the new vocabulary it feels like it’s assaulting me.
I wish it was an actual object. Then I could leave it in the corner and approach it slowly over time. And run off if it freaked me out. But it’s not. It’s right in my face and every time I look it blasts me with I don’t even know what.
Actually I think I may know a way to restore it. Wow. Good. Hopefully this will work. Then I really could get used to the new vocabulary without feeling like I’m trapped into it.
[Two photos of Fey tilting her head into my face so that one ear gets squished.]
She was purring too!
We have a closeness I can’t even approach with most humans, and I appreciate her being alive every single day. I know 13 is the low end of their average lifespan these days, she could easily live to 17 or longer. And I long ago learned to appreciate her presence rather than freak out about her potential absence — freaking out just bars you from being happy about what you have right now.
I have to say my biggest concern isn’t me outliving her, it’s her outliving me. I know she’d adjust, but she would have a hard time after living 12 1/2 years with me. And with the amount of chest infections and intestinal blockages I get, I’m way too aware of the possibility. I don’t fear my own death, I just fear the consequences for people if leave behind. Especially her, since we haven’t even been apart for more than (total) a few months at most. I don’t have a job so I’m nearly always at home every single day with her. More so now that I have trouble getting out of bed.
But worrying about that solves nothing too. So I’ve got a plan, and a backup plan, for her already. Anyone with a cat should have a plan, even if you’re healthy. They deserve a new home with someone who can love and respect them, not the trauma of losing you and going to a shelter at the same time, unless there is no other choice. (And if you think you’re the only one who could ever love or care for them, then I’m not going to mince words. One, you’re wrong. Two, you’re a danger to your cat. Learn otherwise. People who think they’re the only one who could ever care for someone, have a habit of doing really destructive things.)
When we are not snuggling, I find we often do this thing that’s hard to describe. I will be lying in bed facing one way. She will be down at the end of the bed facing another way. But we are both acutely aware of each other and broadcasting that awareness with every aspect of our posture and movements. It’s hard to explain, but in its way it’s at least as intimate as cuddling.
This aspect of feline communication gets overlooked by most humans. It’s intense, and yet to the eyes of the average human, it can appear subtle. A lot of cat communication works like that. It’s either visually fleeting. Or else it’s hard for a human to pick up in terms of body language. But when I volunteered at the pound I would go into one of the cat rooms and see a bunch of cats mostly facing away from each other but communicating volumes, and often seeming to form patterns where each cat’s posture and position is part of a larger pattern between the cats. Fey and I do this all the time but I’ve only seen one or two people pick up on it.
There’s a lot that goes on in a cat’s life beyond being cute.
Autistic Problem 73: When your thoughts move too quickly to articulate, so you end up umming and ahhing for much too long before answering.
Back when I could still talk sometimes, I was at what was basically a debate club convention. I had prepared a talk on one of the subjects and got in line to say something about it. I had it all lined up in my head. I got to the front of the line — despite them trying twice to skip me because of my appearance. I got up to speak…
…and I hadn’t remembered to put my otherwise well-planned speech into words. I hit a couple random words and phrases and just stood there with everyone in the audience yelling ridicule at me.
What made things much, much worse:
1. The subject of the debate was decriminalization of marijuana.
2. I was wearing a long tie dyed skirt.
So practically the entire room thought I was a stoned hippie, too stoned to talk coherently. I’d actually never done marijuana and was interested in the subject because I knew two people who smoked pot, one medically and one recreationally. The speech I never gave was going to compare their situations and talk about why neither one should be considered a criminal for it.
But it was never to be, and instead I had a memory that made me flinch and tic for over fifteen years every time I remembered it. >_<