I’d meant to say something about this, but it never happened, because the hospitalization and then other bits of life got in the way.

My birthday was in the middle of last month. I hadn’t slept at all the night before, and most of the night before that, so I’d been up quite a long time. But I was going to have a really important Skype conversation with someone, and then I had other things to do, so I didn’t sleep in the daytime.

My memory stops sometime that night. Just… stops. I don’t know what happened in that time, although I can hazard a guess.

My memory starts again with hearing this voice saying nonsense, and my voice making… noises, some of which may have been the kind I use to indicate yes and no vocally. Eventually I made out the fact that I was talking to a 911 operator. Internally I was going “OH SHIT NO NO NO HAVE TO GET OUT OF THIS NOW!” I started saying “uh-uh” a lot, as forcefully as I could. It had no effect, she still wanted to know what was wrong, and didn’t seem to get that I was trying to say that nothing at all was wrong. I ended up hanging up on her.

Mind you, my brain was still incredibly fuzzy at this point. And then everything faded out again, and next thing I knew I was talking to a 911 operator again. Again I had this visceral “GAH GET AWAY FROM ME NONW” response. This time I was very forceful with the “UH-UH!” and they still didn’t get it and I hung up again rather pissed off that I kept waking up on the phone with these people.

So eventually the cops showed up at my door. Just the cops. Which is weird, because normally when someone needs to call 911 for me (and… the fact that there’s a “normally” there says way too much about my life) there’s paramedics and fire trucks and stuff. But all I saw this time was cops. Maybe because they know I’ve gotten death threats and were walking into an unknown situation. I don’t know.

So they show up at my door. And I’m still really fuzz-brained, in a lot of “brain pain” (sort of “someone has chopped up my brain into little pieces, scrambled them, and then stuck them in all wrong”), and not really with it. And they want to know what the problem is. And somehow, I still don’t know how, the explanation that comes out of my fingers is “I was trying to call someone else and my fingers just kept dialing 911 instead of the right number.” I don’t know where that explanation came from. It’s probably a good example of how I handle language under pressure (which basically goes “say anything, anything at all, that might be a plausible answer, regardless of whether it makes sense or not”). But anyway, they asked for my ID and left.

Then I ran over to my neighbor’s house crying so hard I couldn’t communicate, until she finally got the whole story out of me (at a point when I still was too confused to put together that I’d been having seizures). She tried to call the police department on my behalf the next day to explain, but they told her they were too busy to deal with explanations.

And now I’m in a position of having to figure out how to put together something explaining complex-partial temporal lobe seizures to the police department. Because I don’t want to leave it at “this person called 911 for no reason whatsoever”. Not sleeping is one of my major seizure triggers. And this is not the first time I’ve dialed a random phone number during a seizure. I just chose the worst possible one to dial, given that for me seizures are rarely an emergency, and dialing 911 has consequences.

From the Wikipedia page on automatism (relevant part bolded):

There are varying degrees of automatism. Some may include simple gestures, such as finger rubbing, lip smacking, chewing, or swallowing, or more complex actions, such as sleepwalking behaviors. Others may include speech, which may or may not be coherent or sensible. The subject may or may not remain conscious otherwise throughout the episode. Those who remain conscious may be fully aware of their other actions at the time, but unaware of their automatism.

In some more complex automatisms, the subject enters into the behaviors of sleepwalking while fully awake up until the moment it starts. In these episodes, which can last for longer periods of time, the subject proceeds to engage in activities s/he routinely performs, such as cooking, showering, or driving along a familiar route, or may even carry on conversation. Following the episode, the subject regains consciousness, often feeling disoriented, and has no memory of the incident.

Most people who’ve heard of automatism have heard of things like lip smacking. They haven’t generally heard of doing complex tasks that are familiar to the person. For some reason, my seizures periodically make me dial phone numbers, among other things. I have no idea why, but it’s happened before. (Including one memorable incident when I woke up on the phone and had apparently been either seizing or incoherent and confused for ten minutes before I finally woke up and retained memory of what was going on. That time, the other person had almost dialed 911 on my behalf.)

For some reason, I have this deep fear of ever hearing the tape of the 911 calls I made. There’s something that feels intensely private about what I do while still technically unconscious, and hearing the tape would only remind me that other people probably heard me making weird noises or something. I was embarrassed as hell when the cops came and I had to come up with some explanation while still post-ictal.

I’m writing this because most people (including many emergency responders) seem to have no idea what seizures can look like. According to people who know me, the cops should have taken my confusion as a sign something was wrong. But of course they didn’t do anything in response to that. And now I have to figure out how to explain TLE and automatism and complex-partial seizures, on paper, in a way they’ll understand, and for some reason I still haven’t been able to write anything on the topic.

I have a cat blog now: Cats Who Know They Are Cats

It contains both its own posts, and posts from my other blogs that have to do with cats.

Warning: In the future it may contain huge amounts of cat pictures, which is one reason why it’s its own blog, so it doesn’t clog up the others with pictures people don’t want to see.

I’m real.

I’m a real person.

Just as much as anyone is.

That means what happened to me was wrong.

Oh god.

That means they hurt me. They hurt me badly.

I couldn’t see it.

Everyone else was outraged.

I wondered what the problem was.

Because I wasn’t a person so what happened to me didn’t matter.

Until a couple days ago.

Then suddenly everything mattered.

And rage. And pain. And everything hitting me at once.

When they talked to me. They didn’t talk to communicate. They talked to control. We were “retards”. Even if they didn’t use the slur, the meaning of it was there.

I cried more that week than I cried the year beforehand. Not the usual kind of crying either. The kind that is more like screaming.

When they made it clear I couldn’t call my power of attorney for healthcare when I had a serious lung infection. When they called someone else instead — they called, not I called. When they wouldn’t let me call anyone.

When they told me that people there are free to call home at any time. (As long as they approved.) Just after making clear I couldn’t call who I wanted when I wanted to — needed to — call them.

The constant contradictions. Tell her whatever will calm her down and keep her quiet. She’s just a “retard”, she’ll never figure it out.

And I never did figure any of it out right away. They liked that. My comprehension issues prevented me seeing the way they lied, talked nonsense even, stuff just as incomprehensible as saying “Because I’m a duck” when asked why they’re taking a bath. So they’d tell me they were ducks and it would shut me up in the short term and they liked that so they did it a lot.

They did it to everyone else too.

At one point, I actually noticed that what they were saying made no sense. And told them so. So they just came up with something else to say that made no sense. And then something else. All of them unrelated to each other. Until they found one that shut me up and got me to do what they wanted.

When I got mad because someone in authority judged me incapable of something at a glance, the problem turned into me. Because apparently yelling “EYY!” in an annoyed tone of voice is really terrible compared to judging someone’s abilities without even knowing them, trying to restrict their access to an activity that everyone else gets to do. Suddenly the only problem was my anger. And I would not be allowed to participate in the activity I was judged incapable of until I stopped being mad.

Then they told me I was judging this lady unfairly. Let’s see. She judges my abilities by glancing at me and attempts to prevent me from an activity I excel at, on the basis of that glance. I get pissed off as a result. And they say I’m the one judging people unfairly. (Even though I hadn’t said anything about her, other than that she was wrong about me. They did things like this, a lot, and succeeded in keeping me completely off balance and doubting my ability to know anything.)

They told me all this in a tone adults use with children and only children.

I called them on that. Multiple times. They denied it and told me I just didn’t understand that adults take that tone with each other all the time.

Then why did they call us girls and boys, and each other women and men? These are the questions that don’t enter my head at the moment of hearing their “shut her up by any means necessary” explanations.

Don’t get the impression that I went there ready to stand up for myself, and did so whenever anything went wrong.

I rarely did. And only with profuse apologies. I only got openly angry once or twice. It wasn’t safe to. If I did ask for something, I begged, I pleaded, I apologized for existing at all. I made myself so small I couldn’t even see me. I wasn’t just passive, I was actively passive, that’s a whole new level of passivity.

And god. When I realized I was alone. And I was very sick. And I had no way to call anyone on the outside. And nobody was familiar. And I was totally at their mercy. That’s when I completely broke down and cried for hours.

They told me I had no reason to fear for my safety. They told me that one of them had a degree in special ed and another delivered babies so they were good people I could trust, and could never engage in abuse. They told me that something was wrong with me and fundamentally wrong with my ability to deal with people in general if I didn’t take people with enormous amounts of power over disabled people, at their word that they’d never do anything to harm us, even as they were trampling all over my basic human rights. Because they’d never abuse people.

Which is why, whenever an elderly woman fell, they yelled at her. “Quit faking. You have your own two feet. Walk on them.” She wasn’t even allowed to sit down when other people were standing. They never said a word to her that wasn’t either telling her what to do, or berating her for sitting down on the ground, or falling down. And when she fell, sometimes she managed to make it a controlled fall (which only increased their anger at her). But sometimes she fell hard, really hard, in ways that had to be doing injury. She walked a tiny, shuffling, wobbling gait that had severe pain written on every step.

I believe that woman will die. And when she dies, they will find that it is from a condition she had for years upon years. And it will have gone untreated. And they may have been able to save her. But they won’t. Because her parents say she’s faking everything (at their age, that may simply be an excuse not to provide care that they’re too old themselves to be able to give), so they must be right and verbally abusing an old woman for falling is somehow ever okay because of this.

WE ARE HUMAN BEINGS. YOU CAN’T JUST DO THIS TO US.

And yes, I tried to put in a word for her. And they told me that if I was really concerned, they could arrange to have the director explain to me why this was actually appropriate behavior on their part. Because she’d known her for years so she had a good grasp on the situation.

They were abusing a woman and the problem was that I was upset about it.

They were abusing a woman and the problem was that I was upset about it.

They were abusing a woman and the problem was that I was upset about it.

And the problem then was that I didn’t feel safe — feared for my life. That was wrong of me. Because it hurt the feelings of the poor little director who had all the standard credentials of a professional do-gooder and of course ran the place so she could do no wrong and certainly never be complicit in abuse.

I was coughing up green phlegm. Very green phlegm. I asked to call my power of attorney for healthcare. They said I couldn’t. I told them at home I could. They said this wasn’t home and they did things differently here. If I made a call at all it would be after they had an hour-long meeting on whether it was appropriate.

On a day when every hour counted as far as getting antibiotics from a system that takes a lot of time to even get hold of a doctor. With lungs that have such serious trouble clearing infections that I had to go on more than one course of antibiotics in the end. With a lung condition that (if left untreated) can go into a vicious cycle of infection -> damage -> more infection -> more damage, ultimately ending in death if the infections don’t kill you first.

They wouldn’t let me call outside and I was in danger and I was terrified out of my mind. And when they do make a phone call. It’s to someone they had no legal right to talk to. And their biggest concern is whether I was lying when I said how often antibiotics make me poop.

(Because I used the phrase “all the time” and then clarified that like most usages of that phrase I simply meant “a lot more than usual”. This was their big concern, that they somehow couldn’t trust me to tell them how often I shit when I am on antibiotics. But my case manager, who isn’t around enough to know that, is the only one they’d trust.)

Then the issue became that I took the phone from them to try to communicate directly to the case manager. Out of desperation.

And then the issue became whether I “took” the phone or “grabbed” it, because this is a massive problem in an urgent medical situation.

And then the issue became that I closed my laptop cover a little to get a bit of privacy while trying to compose my thoughts in a hurry. This apparently meant that I no longer wished to be part of the conversation.

And then the issue became that when I typed words in a massive hurry because they were threatening to stop the entire phone conversation over the above, the words I typed were not complimentary to this poor woman who delivers babies and therefore could do no wrong.

(That’s what they told me. That she delivers babies. Therefore she couldn’t have done anything wrong. I’m not making this up. It’s a good example of the “because I’m a duck” form of answering questions around there.)

This also illustrates their weird power plays — when in doubt, turn things around so the disabled person is at fault for something, however little, and focus all conversation on that thing. I was far too sick to be able to keep the words straight enough to insist on staying on topic.

They wouldn’t let me rest.

No more than one hour a day lying down. If I even needed one more hour than that I was out of luck. And didn’t belong there. Because the point of being there was to do every activity on their schedule. And if I got too tired and had to skip one, well then I must not really want to be there.

And if I did lie down they told me I was taking staff from other people who needed them.

At one point I was approached by three people at once who all wanted to talk to me about what a problem I was being. Why? I had to pee too often, at inconvenient times of day.

I started holding my pee. I got a UTI.

The lack of rest contributed to the sinus infection and the lung infection. It trashed my immune system. But that’s okay because I got to all the activities on time!

Later, I told them how easy it is to manipulate me by telling me that my actions are harming someone else. I will usually then avoid doing it. Even if it kills me.

Towards the end I told them my life was in danger. That I had to rest until someone took me home. That this could be a life and death issue if I didn’t rest. That I have instincts that tell me when something reaches that point and that not heeding them leads to trouble. Always.

They said they understood and that this was fine.

Five minutes later they told me that if I rested, it would prevent two other people from saying goodbye to our staff person.

I objected.

They kept on me, using all the weaknesses I’d revealed to them against me, until I relented and allowed them to take me out to the activities.

They didn’t care if I lived or died as long as I made it to the activities.

I was very sick. For weeks.

I stopped going there after a week and people hearing my stories were outraged on my behalf.

I wasn’t.

Because to me, I wasn’t a person.

To me, nearly everything I just described was okay.

To others, it sounded more like abuse and neglect.

I was shocked to hear them use those words.

I couldn’t understand.

I wanted to go back once I got better. To show them I could be good when I wasn’t so sick that I screwed up and showed inconvenient emotions.

I didn’t relent in that until someone basically asked me if I had a death wish.

* * *

By the time I was old enough to be aware of myself as a person, other people had already made clear that I wasn’t, actually, a person at all. So I never learned that I was.

I still don’t understand how it is that most people develop self-respect so early and without being taught. I don’t understand how people just know certain things, like that it’s possible to physically run away when threatened, and know them consistently, from an early age. Most of the time such a thing would never have occurred to me.

I was around my early twenties by the time anyone started systematically teaching me I was a person. It worked, a little.

I started doing things based on this knowledge.

Then I suddenly at one point started getting huge amounts of attention for what I was doing. It came out of nowhere as far as I was concerned.

I hated it. Positive, negative, didn’t matter, I couldn’t stand it. I wanted people to pay attention to what I said, sure, but not to me.

(And frankly, most of the attention I got? Was not about what I said at all. Not even the “positive” attention. Much more of it was about the fact that the sort of person others assumed me to be could say anything of any kind at all. They’d promise they’d showcase my ideas, then they’d make it all about this image they had of me and then substitute their own ideas for mine, so that next to nothing of my message got out. If my messages had truly sunk in I’d have gotten much less praise than I did.)

So without even knowing I was doing it, I ran away. I buried any sense of my own personhood as deeply as I could manage. I guess I must have thought that would keep me safe. Not that that makes any sense at all.

This did stop my terror at getting all that attention. But it stopped a lot of other things too. When bad things happened to me, I barely noticed. And when bad things happened to others… I don’t know how to describe it. It’s like I’d glance out the corner of my eye and turn away unless something stopped me.

Because this is real life, and not the world of language, none of this was absolute. I did react to things sometimes. And while a portion of me was quite deadened, the rest of me was capable of being happy in other ways and in other areas.

But before I knew it, I was voluntarily walking into a rec program that had warning flags out the wazoo. That a person who works at a good program in the area (yes they exist) tells me that she knows someone who goes to this place an adult and comes out acting like a six year old, totally not herself.

I walked right into this place whose power structure is straight institutional even if it doesn’t look like what most people would call one. And they hurt me. Badly. On levels I didn’t think I could still be hurt. And I barely felt it, while I let them take even more from me than I’d already given away.

I had to take others’ word for it that what they did to me was terrible.

Because you can’t bury your personhood and not have it screw with you on every possible level.

This was probably behind the events leading to my hospitalization, too. When you know you’re a person, you care more about your health than just that it really freaks out your friends and family when you’re seriously ill. One friend tells me that when I made clear it was more for her sake that I was taking better care of myself now, she realized just how little basic self-respect I had.

But taking care of myself seems to be how I’ve made a major shift in all that.

Because I’ve been getting into the habit of checking on my body’s levels of pain, exhaustion, and other things, several times a day.

And somehow, connecting to my body that often has caused some links to form that I’m not sure have ever formed to this degree before.

The final thing that did it was reading the blog Just Stimming. I kept noticing that Julia had something I used to have. Something that was gone from all of my recent writing, for a long time now. I couldn’t put my finger on it. Then I realized it was that sense, that one that goes, however faintly, “I am a real person and I don’t have to take this.”

And then the entire world shifted in an instant.

It got more three-dimensional, emotionally. And I got more three-dimensional too. And there was something where there had been nothing. It was like suddenly realizing that I had a tail, and the only reason I’d not thought I had one was because it had fallen asleep. Only it was a little more central than a tail.

And then everything that happened at the rec program hit me over the head at once and I started crying so much I thought I’d never stop. And for the first time in a long time I was furious. My friend told me to just be sure the anger came from love and not hate. It did.

For some reason the part that hurt the worst was not that they could have killed me. It was that thing they did where they told us random nonsensical things to shut us up, knowing we wouldn’t notice it in real time. That just seemed to hold within it more bigotry than everything else combined.

Mind you, they weren’t all bad. The staff were better than the administrators. But even the better ones had instructions to follow which are impossible to both follow and respect basic rights, which is exactly how institution-type power structures function.

I’d wanted so badly to be one of the good ones. I remembered thinking how bad some of my friends were, because they’d never have tolerated the bullshit. I turned my soul into pretzels trying to fit into this place and nothing I did was good enough. When I told them (while crying my eyes out) that their pointlessly rigid rules and schedules were impossible for me no matter how I tried, they told me I should have brought one to one staff. As if I could afford to pay one to one staff, among all the other reasons that approach to things is wrong.

I actually told them how they could make the place more accessible to me and others who needed to rest more often, without even breaking their rules. They didn’t like the idea. It would have interfered with their attempts to force people to attend activities we didn’t want to or couldn’t attend.

I witnessed a staff person telling a woman with documented gut issues that “walking helps stomachaches” (fabricated on the spot) just to get her not to lie down and rest when she was doubled over in pain. At one point all three of the people assigned to our staff person wanted to rest. Technically if the real problem was “taking her away from the other two”, this should have been fine with them. But she forced the third person to attend the activity anyway. Because that was never the real issue, it was just one more lie they used to manipulate us.

At one point while we were resting, this one woman started making horrible retching sounds, that we’d never heard her make before, and there were no staff around. So three of us decided that she might throw up and the most mobile of us would go get staff. That person did. The staff person came in, barely glanced at the bed the retching woman was lying on (with the covers over her head so she wasn’t even visible), and said “Nothing’s wrong, she’s asleep.” We tried to explain that really, she sounded like she was throwing up, and we were worried about her, and not making this up. The staff person basically told us to quit worrying and mind our own business in the future, and left.

They really liked this one woman. She was even more passive than I was. She was capable of holding a regular conversation. But when staff were around, she’d hear the staff person saying something, then she’d repeat it. Like “Lunch now, right?” She’d repeat “Right?” with higher and higher levels of anxiety until staff confirmed it. And then she’d ask “Am I a good girl?” with the same level of anxiety until someone told her she was. And she always was, because she barely breathed without confirming it was okay first. They adored her for it. They saw it as sweet. I saw it as a person who was utterly terrified. They couldn’t see that at all.

I also noticed that like her, most people there were much older than I was. In contrast to just about all other rec programs I’ve been to where the age range is a pretty normal one. I’ve wondered if it’s because most of them are from an era where this sort of treatment was what you could expect, or better. And most of the younger ones were people whose impairments were mild enough that they could handle the place’s rather draconian rules without their bodies forcing disobedience the way mine did.

I’ve been told by doctors that the lack of proper rest — simply tilting my wheelchair back and pushing it into a non-restful location doesn’t count given that when you have as little energy as I do, even sensory processing can wear out bodies that are not even autistic — is likely how I ended up with three kinds of bacterial infections at once. Infections bad enough that by the time I got home, I was heavily disoriented for a few days. (At one point I started essentially dreaming while I was awake, I could feel that I was in bed but all I could see was this weird alien skyscape.) And fell so hard that I bruised a rib, and injured my hip in a way it hasn’t recovered from months later. And lots of other fun stuff.

But although I take being that ill quite seriously, it’s still the degradation of being manipulated the way many of them manipulated us, that really hurts and pisses me off the worst. And just… the way they found every hole in our mental defenses and swarmed right in, using those holes to further manipulate. And worse, I don’t think some of them even think any of this is wrong. One of them gets a lot of her ego out of being thought to be “good with the developmentally disabled”, and I am dead certain that’s how she thinks of her manipulation skills. As being “good with us”. But in her every movement and gesture is the concept of “retard” — unspoken, not even to herself. She’s uncomfortable with us but she hides it and thinks we can’t see… but we can, and I’m far from the only one who sees it behind the tense smile and the gratuitous hugging(!) and all the other BS.

I’m supposed to be too scared to say any of this.

But I’m not.

Not anymore.

I’m a real person.

And I know it now in a way I never have before, not even before I started running away.

And I didn’t deserve any of that. Nobody does. Not even those, like me, who were willing to settle because we think better isn’t possible or something else is so much worse or what do we matter anyway or whatever other ways we excuse things to ourselves.

And there is a lot, now, not just this, that I’m not going to put up with anymore. No matter what happens. Nothing is worth killing off bits of oneself one by one.

That’s much more obvious now that I see the contrast. Everything has depth now that it lacked just a few days ago — you can’t run away from pain in that manner without killing off a fair degree of joy as well. And it’s clear that even my reactions to what happened to others were affected, not just myself. I’m just glad something finally happened to jolt me out of it.

For some reason this mental image keeps popping up. Of someone beating me with a stick over and over. For years. And then suddenly my arm reaches up, grabs the stick, and shoves it away.

That’s what’s finally happened.

I will meet idiots today, went one version of her after-waking meditation, and one of them will probably be me. Iau Hau’hai, Queen of Life and of Making Things Work, grant me of Your courtesy the courage to shred that idiot’s ears when I meet her, and then get on with work… for being right is nothing next to having things be right…

From The Big Meow by Diane Duane.

I strongly recommend reading The Book of Night With Moon and To Visit The Queen (American title)/On Her Majesty’s Wizardly Service (UK title), before reading The Big Meow. In even the first chapter of each book in this series there are (necessarily) spoilers about aspects, sometimes major aspects, of how the previous books turn out.

Here are links to the Kindle Store for both of those other books (you can read Kindle books on most computers and a variety of other devices, you don’t need a Kindle):

The Book of Night with Moon
To Visit The Queen

Those books are also often available used for very little money.

Here is a link to the currently free online edition of The Big Meow (3rd book in the series):

The Big Meow

They’re a series about a bunch of cat wizards, and they’re the only books I’ve ever read that have even half-plausible cat characters. Not that they got it perfect (or anything else perfect), but it’s a hell of a lot better than Tailchaser’s Song and the like. They’re also a very rare type of book that get at aspects of reality most books don’t, if you know what you’re looking for. (Much like Momo or A Wrinkle in Time.) So they’re good even without the cats. Some people have told me there were problems in the plot of some kind… but honestly, I’m not some kind of professional academic literary type who knows what plot “should” and “shouldn’t” be like, I just like certain books, and I loved these books.

(And why, if I am very productive, you might want to let me know to stop it. :-P )

I was in the hospital recently.

[Photo description: Me in a hospital gown in a hospital bed, with a hospital-green wall behind me, and a bunch of assorted cables and stuff behind me.]

Yet another intestinal blockage. Will not give excessive details on that area, since most people have no real desire to hear about crap and lack thereof. May also have had some kind of infection, as my white count was high.

The problem with communicating largely by typing (and using the Internet rather than the phone) is that Skype keeps logs of things you say when you’re delirious, and your friends can torture you with it later. Apparently, among other things, I start randomly advertising for Turpenoid (which I haven’t seen or used since I was about 8 years old). And that’s after I was well enough to start typing things to friends (I’ve got three days before that that have gone almost completely missing, no memory at all other than an all-too-vivid memory of an over-the-top medical procedure, and another of something that had to be a hallucination, and I sent no emails or Skype chats in that time).

Also — hospitals have to be one of the worst places to be delirious. There are too many weird sounds, sights, and smells that don’t exist practically anywhere else, and there’s an overall intensity to the place due to the amount of intense things that happen there. Once I do start remembering things, I start remembering these things:

[Photo shows a blue plastic robot-like thing with red numbers on the front, next to a table.]

Which I could swear are alive. And which make the most unearthly series of bleeping noises — and when you can hear them going off all over the ward, it’s just not a great way to get a grip on reality. (Even the nurses have problems hearing it over and over.)

For the most part, the care I got was excellent, which is good because I really wasn’t in much state to fight them. (Although in the one instance when they did something I didn’t approve of — a nasogastric tube — I was apparently very adamant that they stop it no later than NOW. Which doesn’t surprise me, I have such a strong objection to things going into various orifices that I can barely give myself treatment for yeast infections, and am shocked — but glad — that I didn’t just yank the tube out. It wasn’t necessary anyway, they managed to clear the blockage through much less invasive means that I won’t go into detail about. The tube is also the only clear memory I have of the first few days, so apparently it made a strong impression.)

So I pretty much couldn’t wait to get home, was even willing to put up with a drive home without a headrest:

[Photo description: Me in a wheelchair van, with my chin resting on my chest because I’d been sitting up too long waiting for discharge.]

When I got in the door, I heard something a lot like this (this was actually taken later, after going out for something and then coming back in again, so her reaction was much stronger than this initially):

Fey meowing when I got home. from Amanda Baggs on Vimeo.

[I don’t have the video captioned, but basically the only sound in the video is my cat making a rather intense and raspy meowing noise over and over, and me doing a mrrrrr? sound back sometimes. The video part is basically just me coming in a door and then it getting really dark.]

This, too, is not right after I got home, but is the first time I got on the bed:

Fey welcoming me home from the hospital from Amanda Baggs on Vimeo.

[The only real sound in the video is me yelling “EYYY!” when she bites me. The video itself involves Fey walking back and forth over my lap and rubbing my arms and face over and over. And then eventually biting, because she does the rub-purr-rub-purr-CHOMP maneuver when she’s glad I’m home but mad I left in the first place.]

She didn’t take her eyes off me for days:

[Photo description: Fey staring at me. There’s an air conditioner duct that she’s got her head poking over the top of, and her paws on either side of her face, Kilroy-style.]

So… basically, my bowels are doing much better. But I’m experiencing alarmingly similar symptoms to the ones I did last time I got out of the hospital for something like this. Which involve painful lymph glands, a mild sore throat, and total exhaustion. Which is why it’s taken me so long to write anything. And now I’m mostly writing it so that I have a way to explain the fact that I might not be up to a whole lot lately. Last time this happened, I paid no attention to what my body needed, proceeded to wear myself out several times over, and ended up with a health crash I’ve never fully gotten over since then (and which during the actual crash itself, involved the inability to turn over in bed without help). Needless to say, while I could survive such a thing again, I’m not anxious to try, so I’m obeying all my worried friends and resting.

Plus, this recent hospitalization brought home exactly how much my own carelessness about my health (I got into this by forgetting laxative several days in a row when I already knew I was dealing with a potential blockage) affects other people, not just me. So I’m not willing to continue to be as careless as I used to be. I had a lot of people worried, and one friend seriously freaking out the whole time, and for good reason — the last hospitalization for a blockage was bad, but this one was nearly twice as long, and the amount of time I couldn’t remember this time is equal to the amount of time of my entire hospital stay last time. So I’m trying to be a hell of a lot more careful, for other people’s sake as much as my own. It’s weird how it’s easier to do something for other people than for oneself.

So anyway, if I am not doing as much, that’s why. I feel pretty much like every particle in my body is individually trying to lie down and go to sleep (or to get me to do the same). And this time I’m going to listen, instead of trying to get involved in fifty projects at once, which (I’m told) is apparently my usual reaction to situations like this. And that goes for whether this is my body’s response to getting seriously ill, or whether it’s some bug I picked up in the hospital. (My best guess is it’s a reaction to something about the blockage, since it’s so identical to last time, but I’m being tested for everything under the sun just in case, since it’d be bad to miss an infection or something, and I already had four kinds of infections this summer. Yeah it’s been one of those few months.)

Oh and since most people have trouble not confusing illness with unhappiness, I’m actually fairly happy, I’m just physically exhausted. So don’t worry about me on that count.

It’s kind of weird.

Throughout my adolescence, I heard a lot about trichotillomania (compulsive hair-pulling). In mental institutions staff tended liked to show off their knowledge of terminology by saying it in my presence a lot when I was yanking out hair. But I don’t have trichotillomania. It was more on the order of head-banging, a response to extreme emotional distress, not an irresistible compulsion.

I know this because I experience what’s called dermotillomania, which is just an unnecessarily long word for compulsive skin-picking. I’ve experienced it my whole life, people have made me feel about two inches tall for not being able to stop it, and I still can’t stop it 31 years on (or however long it’s been since I was old enough to do it). I almost don’t want to write this post because whenever someone actually notices what’s going on, they go to a lot of trouble to tell me how bad for me it is, or exactly how much I shouldn’t be doing it, as if I hadn’t noticed already. (It’s not always clear how much of that is actual concern for my well-being, how much is being grossed out by it, and how much is being embarrassed. It really depends on the person.)

I mostly stopped hair-pulling when my life stopped being unbearably stressful. Skin-picking is a totally different story. While it seems to increase during times of stress, it also happens at other times. I honestly suspect it’s a grooming instinct gone completely out of control — picking off bugs, except now “bugs” is anything that happens to stand out against my normal skin. Scabs, freckles, moles, pimples, whatever. Sometimes I even do it to totally normal skin.

This obviously can become a serious health problem. Besides the risk of infection, it takes things absolutely forever to heal (on top of the fact that I often have slow healing to begin with). And it’s not always just pulling off the top layer, I can dig entire crevasses in different parts of my body.

Weirdly enough, there’s a level on which it’s enjoyable. A friend reports the same thing about her parrot pulling feathers out — she’s always very interested in the feathers afterward and plays with them. The skin, scabs, whatever that I pull off create the same sort of interest for me. I stare at them, I line them up, I get especially happy about ones that are unusual sizes, colors, shapes, etc. and may keep them around for awhile. I rarely get grossed out by it, I just get very interested (interested may be a better word than happy, it’s like a form of out-of-control curiosity). The parrot also does a very similar motion to the way I run my fingers over the area of skin I’m going to pick, only she does it with her beak.

Sometimes I’m able to keep the results of this hidden, sometimes I’m not. Right now most of what I’m doing is in the parts of my ears that are either invisible to people or easily covered. (And it goes against a lot of my instincts to reveal any of that. I’ve spent way too long hiding it from people who would comment or get me in trouble or whatever. Mental institution staff welcomed the excuse to put me in restraints and get me out of the way. And weirdly, while they treated the hair-pulling as compulsive, they treated the skin-picking as akin to head-banging, or as a deliberate attempt to cause harm to my body. Two totally unrelated kinds of experiences and they got them exactly backwards. In a world where they can spin this sort of thing into “a danger to self or others” (the standards for involuntary commitment in many places) it’s dangerous to admit this kind of thing in public when you’re already prone to being locked up just because of the kind of person you are.) Keeping it hidden also helps keep other people from assuming any wound on your body is caused by this, which gets really irritating really fast, as does people insisting on sitting there watching me for it and then saying “You shouldn’t do that” every time they see it. None of these things are helpful in the least bit, they just cause unnecessary suffering.

What does stopping entail? Constant concentration. Because the moment that I let my guard down, my hand will wander off somewhere and pick something without my even being aware of it half the time. It also can make the problem come back even worse. I’m still recovering from ripping toenails out yet again after an attempt to stop. When you’re doing to yourself things that are normally described as a form of torture, you know something’s very wrong.

But “very wrong” doesn’t translate into an ability to stop this. I’ve tried just about everything possible and the moment I let up my concentration I’m back to doing it again. This isn’t the thing where “just put something else on your skin and pull it off instead” works easily. It requires so much concentration that ability to do other things can suffer in ways where it can be better for a person just to go back to doing it. It takes every bit of willpower I have (combined with increased picking in other places) not to do really serious damage by doing things like picking surgical wounds, and I only manage that by picking still other things, not by stopping altogether. And no, there’s no medication that has ever helped, even a little, and I’ve been on a lot of different medications (not explicitly for this, but if they worked they’d work regardless of why I took them).

By the way, I know there are people who consider this (and all sorts of other things) an “illness”, but I don’t. While it can always be useful for something normally considered a moral issue to be considered a medical issue instead, I don’t find it useful in my life to treat an overactive instinct as if it’s a cold or the ever-present diabetes comparison. Clearly it’s something wrong, but the only way medicalizing it would ever help me would be if it helped me pay for some way to stop doing it. And that still wouldn’t mean I wanted to medicalize it in the rest of my life. I don’t find it remotely useful to treat picking my skin more as “getting sick”, it’s just not a useful analogy for me (and in some situations I’ve found it worse than useless).

So why am I writing about this? Because it’s a large part of my life and one that very few people seem to understand to any great degree (and then their lack of understanding only makes things worse when they try to “help” me). And it’d be nice to not experience their fumbling attempts at “help”. Plus, as usual, I write a lot of things because other people’s writing has been useful to me in self-understanding and I’ve often wanted to give that back to other people when I can.

Fey likes to hang out on the windowsill, behind a bedsheet, and cuddled up to the air conditioner duct. She was there today when I took out a pen and started swiping it along my side of the bedsheet. This is the result:

A pen, a window, a bedsheet, and a cat.

[Video shows Fey’s silhouette batting, grasping, and biting the pen through the sheet. All sounds are just the various scraping and other noises made by the activity, there’s no words.]