Category Archives: Uncategorized

The real scarf.

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This is a scarf my mother bought me during the holidays last year:

Me with a red scarf around my neck, with fringe on the end

Pinned to it was a note saying “to wrap around your heart”.

I cried.

Because it was a reference to this comic I wrote, about my experiences with delirium.  The scarf in the comic comes to symbolize a connection to the deepest parts of reality, the only thing I had to hang onto when I was severely delirious and disoriented.  And in real life, I use this scarf the same way.  I wear it when my mind isn’t working quite right and I want to maintain my hold on reality.  Things like this are really useful.  And I cried when I first received the scarf, it was one of the most thoughtful gifts I’ve ever gotten.

It’s strange to walk places.

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I walk to most places now.

It’s strange to not have to think about curb cuts, wheelchair-accessible bathrooms, and making sure that the nurse at my doctor’s office moves everything out of the way so I can back my powerchair into the room without bashing into things.

It’s strange to have to hunt around for chairs to sit down in.  Because just because I can walk, doesn’t mean I can stand indefinitely.  In fact, standing has always been harder than walking.  My cane helps signal to people that if I need to sit down, I need to sit down fast.

I am sure that the way I look to people has changed, but I have not yet been able to work out how.  In the past, I remember how people’s estimation of my cognitive abilities went up once I was in a powerchair full-time.  Because apparently I have some quality of my appearance that usually makes people underestimate me cognitively, but if I’m in a wheelchair, they can blame that quality on a physical impairment.  Now that I’m out of the chair, I wonder if I’ll be getting treated like a two-year-old more often again.  Or if enough has changed, that that won’t happen either.

I may be walking places, but my identity has not caught up with the idea of being a walking person.  I still imagine that I’m in a wheelchair.  Of course, I’m not fully out of the wheelchair, either.  I still use wheelchairs for distances I can’t manage yet.  But when I do walk, I still somehow imagine that I’m in a wheelchair, and I’m always surprised to find that I’m not.  Everything looks different when I walk, it’s all viewed from a different angle in more ways than one.  I’m still not used to it.

It’s not just a matter of identity, it’s a matter of perspective.  Literally the angles are different.  The places I can go are different.  The expectations I get from others are different, and not always what you’d expect.

And I feel like I haven’t quite caught up yet.

I also feel like very little about me has actually changed, and yet other people see a huge change because the categories of full time power chair user and person who walks with a cane and may sometimes use a manual wheelchair are so different in their minds. The equipment you use becomes how they see you, even other disabled people do this.

Being tired is not the same as fatigue.

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Being tired, even being exhausted, is not the same as the kind of fatigue that people with chronic illnesses are dealing with day to day. And I knew this, intellectually. But after going on steroids to treat adrenal insufficiency, and getting some stamina back, it’s like a revelation.

I haven’t really had much in the way of clinical fatigue since I got on steroids. I only feel it on my bad days, and my bad days aren’t all that bad compared to how they used to be.

I do get tired. I get exhausted. But even at my most exhausted it’s not the same.

Fatigue, when talking about in a medical sense, is more than exhaustion. It’s a sense that everything is drained from your body. You don’t just feel tired, you feel sick. Your body doesn’t work right.

I wish I could just upload the feeling into people’s heads so they’d understand it’s not the same.

Like, take the feeling of clinical fatigue, wrap it in a package, and hand it to all the people who think that chronically ill people are just lazy.

And then take the feeling of ordinary tiredness without clinical fatigue, wrap that up in a package, and hand it out to people with chronic illness so they’ll remember that they’re not just lazy or tired.

Because that’s so hard to remember in the thick of things. It’s easy to think that you’re only dealing with the kind of tiredness everyone else gets. It’s easy to start believing that you’re just not trying hard enough.

But if you ever get the chance to try a treatment that works, and works big time, and alleviates a good chunk of that fatigue. Then it’s crystal clear that if anything you were working harder than most people do, and for less results.

Because that’s what keeps coming back to me. So many things are so easy now. I was working harder than I’ve ever worked in my life, and getting nowhere. And now I’m barely working at all in comparison, and I’m improving every day.

So this understanding is important for healthy people because they often expect too much of us. But it’s also important for sick people because we expect too much of ourselves.

The way a cat loves.

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[Written the same day as my previous post.]

I love the way a cat loves. When she takes every blank place my memory won’t fill in. And she sits at the center. In a big bold cattish way. And fills in all the blankness with layers and layers of catness. And somehow curls up in my arms, curls around my whole mind, at the same time, keeping everything in. Her love replaces blankness with catness and terror with love and sobbing with purring and I love her for all of it. And loving her back makes a circle.

Don’t ask, I can’t tell, I can’t even explain.

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[Originally written on October 17, 2012, after a hospitalization for pneumonia and gastroparesis, in which I experienced severe delirium for five weeks. This was my first attempt to explain what I was going through. It was the basis for part of the story in my comic.]

She skated towards me wearing a red winter scarf. My feet were frozen to the ground. She waved her scarf in the air from a distance. It was the only thing with color in sight. Then it flew through the air and landed in my hands.

I clutched the scarf tight. I didn’t see but felt her fall. I didn’t see but felt life struggle to maintain itself, and fail. I didn’t understand. I never understood. I couldn’t make sense of anything anymore.

I never let go of the scarf. I unzipped myself and wrapped it around my heart. To keep everything warm when nothing was certain. And then I cried until I thought I would never stop.

And I’ve tried to hide what is gone. But I’m not sure if it fools anyone. There are places we used to go, things I used to do, and they seem as dead as she is. Only sometimes I feel something squeeze my heart. And things pop into focus once again, in color.

I can’t tell you all of my wishes, because they are all in code. I can’t tell you what I can’t do anymore. It’s just one more room in the building, left blank and unexplored. I wish I was known for who I was and not for what I did. I can’t tell you what I’ve lost or what I’ve gained.

I can still see more than people want for me to see. I can still feel things deeper than people expect. What I can’t understand, I still can’t understand, only more. I still want things that can’t be named. I still can’t tell you any other way than this here, right now. What stays, what shifts, what’s changed.

If you wanted something different, I can’t help it. This is what you get. If you don’t understand, maybe it’s not here for understanding. I’m just exhausted, and didn’t have the energy to tell you the normal way. So I took what I had and I went where I could. And this is what you get.

Don’t tell me what I should have said. Chances are, I couldn’t. This is brain damage we’re talking about. It isn’t convenient. It doesn’t instantly vanish. If I could only tell you a tenth of it.

It’s hard to look around and see that nearly everything I used to pay attention to, is impossible to understand. It’s hard to know I can’t say anything unless it follows a particular pattern, like this does. I couldn’t say this part without all the rest before it. All the rest. Not something else. Something acceptable.

I’m scared and I couldn’t tell you why. It’s winter and the wind is blowing hair in my face. I’m glad I have the scarf around my heart. Otherwise I’d get lost in all the snow. Everything used to be familiar. Now there’s so much snow I can’t identify anything. Or not much of anything.

Please, something be familiar. Something be unfrozen. Something be other than white. I feel tiny, and I’m shaking, and I don’t remember anything. Not what I just said, not that you’re alive. In here, I don’t know you. I don’t know me. I don’t know anything.

But it always fades back. And there’s always more. And I always find myself writing this. To you. To who? To me. To they. I don’t know. All I know is I couldn’t have written this any other way. And maybe someone can even figure out what I meant. Because it’s in there. If you look in the right places, and with the right eye for the reality of one experience or another.

I am through, so I hope, sitting up all night with neon pink insects eating my eyelashes. Lying in a sunlit room with parts of me flying into the sky and back again. Night after night trying to avoid being flattened into a grid pattern and dissolved. In lots of pain. With lots of nausea. And I hope never to visit that realm again. A lioness carried me out.

Not that anyone noticed. They come in and change your IV bag and the hours between are left for you to lie still and drift into bizarre hallucinatory worlds that always have an undercurrent of hell on earth to them. They don’t check you for it. That’d take time. So of course they’re blindsided by my paranoia and then, after that was gone, sliding into the blank white snow everywhere. They only noticed what affected them.

I’m out. But it’s not over. And I wish I could tell you the things I can’t say or understand. But they’re just lost. And I get scared if they’re ever coming back. And this was the only way to tell you. So don’t ask it to be less roundabout or full of things that didn’t literally happen. Because right now that’s one thing I can’t do, can’t do at all. Don’t call this creative writing it’s the only damn writing I have at all this moment. And what I’ve done hurts like blinding colors in my eyes instead of a scarf warming my heart. If she’s dead or asleep, I can’t tell you, don’t know, but it hurts.

Trendie Tubies

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[A makeshift clothes line made by tying yarn up on a bookshelf. Clipped to it are three cloth circles. One is a yellow cat on a black background, another is light brown owls on a light green background, and the last is blue flowers on a white background.]

I don't normally advertise products here, but I thought anyone using a feeding tube might be interested in these things. They are called Trendie Tubies. They are absorbent cloth pads, in a variety of styles, designed to be used around the opening of your feeding tube once it's healed enough to stop needing the kind of dressings you might need right after the surgery.

I absolutely love them. They're absorbent, they're comfortable, they don't feel anything as awful as having dressings taped to your skin. They're very soft. And they have all kinds of neat designs. My favorite is the owls. Here is a picture of what they look like when they're being used:

[Photo of a Trendie Tubies thing with blue flowers, on a GJ tube over light skin with blue clothes surrounding it.]

They have a little Velcro thing you can't see, so they can fit around all different sizes and kinds of tubes.

Here's what their About page says, so I don't end up paraphrasing it:

Trendie Tubies Accessories are hand crafted by a Mother-Daughter Duo.

All items are handcrafted and not mass produced so each item is unique and will not be uniform.

Trendie Tubies are a comfortable & absorbent machine washable pad that helps with the leakage that is common with G-tubes,

J-tubes and GJ-tubes. They work for both button tubes and peg tubes and even trach's!

Each Trendie Tubie Accessory is approximately 2 3/4 inches round and made up of 3 layers of fabric sewn together.

-The top layer is a soft flannel with a cute design of your choice.

-The middle layer is cotton terry cloth to absorb any moisture and leakage.

-The bottom layer is fleece for a soft comfortable feeling next to the skin preventing irritation and granulation tissue.

-They have a small Velcro tab for easy closure and are double zig-zag stitched to minimize fraying edges.

All materials have been pre-washed.

Allergy Alert – We have an extended family of dogs, cats & horses…be aware just in case allergies are a concern.

We strive for 100% customer satisfaction.Your comments & feedback are always appreciated.

Here's a link to the Trendie Tubies website, where you can buy them.

I bought one for every day of the week. Three owls, two cats, two flowers. I can't recommend them highly enough. And I'm posting this because, as far as I know, most people haven't heard of things like this. The VNA wanted me using gauze dressings the rest of my life, which I really didn't want. They say they're machine washable but we've been hand washing them because it's more convenient, then hanging them up on the bookcase to dry.

 

A bunch of stuff that needed saying

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The following stuff is important stuff I wrote elsewhere on the net. If some of what I'm saying doesn't make sense, ignore it, it's just context that I'm not able to describe right now. The main thrust of what I'm saying should make sense without understanding the full context of what I wrote. And I can't rewrite it all right now for this blog. So the following is pretty much as I wrote it. Also sorry for all caps in places, it was because where I was writing it I couldn't use other forms of emphasis. And please don't assume that this is all about autism. Everyone always assumes that everything I say is all about autism. It isn't. Most of it isn't. Not even the stuff that talks about autism is all about autism. I am fed up with just about every such assumption because my world isn't made up of only or mainly autistic people and when I talk about things I always get replies saying “This applies to people without autism too” and I want to say “no shit Sherlock, that's what I meant in the firs

This turned into a long post, and it may not apply to the people I’m replying too, but this conversation just brought up a lot of things I’ve been thinking but having trouble saying.

Thank you for writing that. It’s really important.

Also another point I want to make. There are many autistic people whose best method of communication is nonverbal. By which I mean, not speech, not writing. Some of us this is true of, can communicate well by speech or typing also. Some of us can’t. But we usually have trouble with receptive language — either some of the time, all of the time, or especially, during the early formative years of our lives. I’m one such person.

Most people don’t know this because the current theories of autism all involve us being terrible at nonverbal communication. By which people mean, terrible at one specific kind of nonverbal communication that most nonautistic people are good at. Also, most autistic people who can talk about their experiences in words, are (or believe themselves to be) bad at nonverbal communication, and their experiences get seen as applying to all of us, when this is not true.

So for many of us — nonverbal communication, and the world of things outside of words, are our best way of communicating. Whether we can also use words or not. I wrote about one such group of autistic people in my contribution (“Untitled”) to the Loud Hands anthology. Because I want people to know we exist. Because I want other people like me to know they aren’t alone, in an autistic community made up mostly of people who experience themselves as terrible at nonverbal communication. Where people even say that autistic communities are communities where people can use text or other forms of language, rather than having to deal with nonverbal communication. Even though there’s plenty of us who do better in person, BECAUSE we communicate best nonverbally, because words, whether we can do them or not, whether we are or seem good at them or not, are so hard and so difficult and so painful to keep using.

There are entire groups of autistic people out there who communicate with each other using our own unique forms of body language that are different from nonautistic body language, different from other autistic people’s body language, specific to ourselves, specific to each other. Who communicate best reading each others writing, looking for the patterns that exist between the words, rather than inside the words themselves. Who communicate best by exchanging objects, by arranging objects and other things around ourselves in ways that each other can read easier than we can read any form of words. Who share the most intimate forms of communication, outside of words, outside of anything that can be described easily, in between everything, seeing each other to the core of our awareness. Who see layers upon layers of meaning outside of any form of words.

In “Untitled” I was writing about my favorite communication ever, my video chats with AnneC (and her cats, when they show up, which Shadow absolutely loves communicating with me over video and reminds her every Friday at the right time because he loves it so much). I don’t necessarily do the best at visual stuff the way most people think of it. But I can see the patterns of movement in other people, including cats, whether or not I see them well in the usual forms of visual perception. And those patterns of movement tell me more than any word ever could.

I can even read nonautistic people fairly well at times — just not in the ways nonautistic people read each other well. That’s one of the problems with nonautistic research into autistic people’s abilities to understand nonverbal communication. Most of it relies on the understanding and use of words at the same time as understanding the nonverbal communication. And most of it relies on the kinds of nonverbal communication that nonautistic people are most aware of. This frustrates me to no end — how can people research forms of understanding that they don’t themselves have and therefore they don’t themselves understand even exists? I’ve actually told researchers ways they can research autistic people’s understanding of nonverbal communication without having to resort to the faulty methods they usually use.

And one researcher told me, when I asked, that every parent of an autistic child she ever met said that their child picked up easily on things like stress in the household, but that SHE ACTUALLY DISREGARDED IT UNTIL I ASKED HER, BECAUSE SHE’D BEEN TAUGHT THAT AUTISTIC PEOPLE COULDN’T READ BODY LANGUAGE. I’m totally serious. If researchers are that biased themselves, how can they possibly hope to even notice that we can understand things they assume we don’t understand?! I taught that researcher a bunch of very simple ways to test that without relying on the painfully stupid research methods that guarantee researchers will find only what they expect to find — relying on us to use and understand words, relying on our understanding of actors and stage conventions rather than real people’s real nonverbal communication, relying on nonautistic people’s limited ability to read autistic body language, all sorts of other flaws that seem obvious but that researchers themselves seem never to notice. So hopefully she will set up some real experiments that show our real abilities.

Anyway. Back to what I was saying. There’s entire subgroups of autistic people out there _ not just my own — who rely on nonverbal means of understanding the world, and nonverbal means of communication. That’s one reason I usually put myself in my videos — because I know that certain other autistic people will be able to read me like a book, even if nonautistic people usually can’t. And that nonverbal communication is a crucial part of my videos. (See why the entire first half of “In My Language” has no words in it. I was trying to make a point about the best way I communicate, the best way many people communicate, autistic or not, verbal or not. Mostly lost on people, who think it’s a video about autism. It’s not. It’s a video about communication and understanding and personhood, that happens to be made by an autistic person. Big difference. I told CNN why I really made the video, and they left out that part of the interview in favor of putting their words in my mouth. I think my real intent was too political for them.)

Anyway. I may be a writer, but my real best form of communication has nothing to do with words. I use words because I have to. Because most people won’t understand me if I don’t. I don’t use them because I like them, or because I “can’t do nonverbal communication so text is best for me”, or any of the usual reasons most people assume. If I could never use language again, spoken or written, I would be really happy. But the world won’t let me do that, so I carry on using a means of communication that is outright painful for me.

I don’t know the people in the video, but I know that the way their bodies move makes intuitive sense to me and communicates things whether they intend it to be so or not. (The forms of nonverbal communication I understand best are unintentional, in fact. That’s one reason tests using actors don’t work on me. I know an autistic woman who failed a test of nonverbal communication because it used actors and she kept describing their real feelings instead of their acted ones. What this says about nonautistic people’s understanding of nonverbal communication is… interesting.) Whether they are able to use spoken language or not, the video would lose a lot if it only relied on showing them speaking or typing the words.

And I really dislike a lot of the self-advocacy movement for relying mostly on the self-advocacy that happens through words, written or spoken. This leaves out people who can’t do either but who are nonetheless quite capable of advocating for themselves through their actions and movements. If I hadn’t spent a lot of my life forcing myself to do words, I might be such a person, so I am always aware of this. Words are not natural to me the way they are to some autistic people. They’re difficult and my development could have gone either way. There are also people who, no matter how much effort they put in, could never have used or understood words, and they are also extremely important, and they are also capable of self-advocacy, and they are still capable of communication that is more full of meaning than the communication of many people who use words.

I wish there were videos using their communication — which by definition wouldn’t involve words. Both people who would have been able to use words had they put in a crapload of effort at critical times in their development, and people who would never be able to use them no matter what. Such people exist. I sometimes wonder if they are too inconvenient for some autistic people to remember. I hate when people tell parents, “If you just gave your child a communication device they would be able to type words (or use picture symbols) and everything would be solved.” You don’t know that. You just can’t possibly know that. I hear that a lot, this idea that autistic people would all be able to communicate in words if only they were given a means to type them instead of speak them. And it’s so not true that its utterly ridiculous. I hear it both from people whose main way of communicating is speech, and also from people who use typing, and people who use both. It’s wishful thinking and it’s not true. There are people whose understanding of the world is just like a typical “aspie” except they couldn’t speak for motor reasons, and they are the most likely of those who use typing, to believe this myth.

Reality is that there are lots of people who will either never be able to use words, never be able to understand words, or both. Or whose use or understanding is so limited that they will never be able to use words as their primary means of communication. But they do communicate, whether the communication is intentional or not. And they do matter. And they are capable of self-advocacy. And they should be included in self-advocacy movements if those movements ever expect to represent autistic people, developmentally disabled people, cognitively disabled people, disabled people in general, whatever group is trying to represent itself in that movement. And in order to include them, you have to show their movements and their sounds and all the things they do that aren’t words.

It’s true that many people who are thought not to be able to use or understand language, actually are. And it’s terrible that they are overlooked. But in their desire not to overlook such people, many people claim that all disabled people who can’t communicate through speech fall under this umbrella. And that’s simply not true. In order to communicate with people who will never use words, you have to learn their language. (And surprise, that’s one thing that “In My Language” was actually about. And it would be about that whether I used typing or speech to communicate — either one would be my “second language”, and as such I can easily, easily envision a situation where I never learned and never would learn to use speech or typing, both of which I used at different points in my life.) And each person has one. Sometimes several people have a language that is in common but is not words. Sometimes each one has a separate way of communicating that is not words. But either way, you have to learn how they communicate, not force them to either communicate how you best communicate, or else be considered “non-communicative” for the rest of their life. And yes it’s possible to get consent to use their communication, it’s just sometimes harder work than asking a yes or no question in words.

And a community that doesn’t include such people isn’t my community. The developmental disability community is far better at including such people than the autistic community is, even though not all of the DD community manages it either. One reason I’ve spent a lot of time communicating with people who can’t use words in any form is because I’ve been in the developmental disability system for pretty much my entire adult life and have spent a lot of time with a wide variety of people. And I’ve spent a lot of time communicating with people who can’t and may never use speech or typing or even picture boards. And that’s something that certain segments of the autistic community are sorely missing. Even parts of the autistic community that involve people who don’t use speech, are often made up of only those people who were able to learn typing, and often put forth the (false) idea that everyone could learn typing if only they tried hard enough or were exposed to the proper teaching methods.

The response someone made is true: Some of the people in the video use typing, so they could never be shown speaking the words in the video. But I’d like to go further than people who use speech and people who use typing, because unlike a lot of people, my social world is made up of a lot of people who can’t do either one. And also made up of a lot of people who, even if they can use speech, typing, or both, those are not their best means of communication, and it would be better to show us using our best means of communication rather than merely the form of using words. Not everyone has words but everyone has a voice and a means of communicating. And not everyone who uses words sees words as their primary voice or their primary means of understanding things, and that needs to be respected. And I’m sick to death of spending time in communities where most people seem to miss these facts, and automatically see having a voice as the same as using speech or at least using language.