Category Archives: Experiences

I am not your fairy tale miracle cure story.

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But more on that in a minute.

In the past couple years, I’ve been quietly preparing to die.  I hadn’t told anyone the full extent of what was going wrong with my body, because it was inexplicable.  Whenever I aspirated and got an infection, I became much weaker than the infection should have made me.  Sometimes I became severely weakened by stress alone.  I knew that there was something going on above and beyond the medical conditions we were aware of.  But I also knew that my symptoms could come from so many different things, it was unlikely we’d ever find it, or that it would be something treatable.

In parts of the chronic illness community, people use a term called ‘spoons’ to describe how much energy you have to do basic things.  I have mixed feelings about the idea, and the Spoon Theory story that originated the practice.  But sometimes it’s a useful thing.  What happened when I got sick was that my spoons would go negative.

When I say negative spoons, I’m not just saying I really didn’t have much energy.  I don’t mean that I felt sick and tired in any way that even the average chronically ill person feels sick and tired.  I mean that I felt like my level of energy was spiraling downwards in a dangerous way.  Where the less energy I had, the less energy I had to replenish it.  At my worst, I would be lying in a hospital bed, going in and out of delirium, and in lucid moments I would notice that it took too much energy just to keep my heart going.  I’d wish that I could stop and rest.  And then I’d realize what that meant.

When I was not acutely ill, I had a constant, subtle sense of fragility.  It felt like one good illness could put me in the hospital or kill me.  And often it did.  I had four hospitalizations between late 2012 and early 2013.  More recently, I was having periods of time when for no reason at all, I’d become unable to move or stay conscious for long.  I knew something was badly wrong.  And apparently so did my doctor, because he started sending me to more specialists and running tests.

This was the result:

Results of cortisol tests, showing cortisol too low to measure, ACTH too low to measure, and cortisol rising up to 8 and 9 when my system was artificially flooded with ACTH.

Results of cortisol tests, showing cortisol too low to measure, ACTH too low to measure, and cortisol rising up to 8 and 9 when my system was artificially flooded with ACTH.

What does this mean?  When they measured the level of cortisol in my blood, it was consistently too low to be measured.   ACTH is a hormone secreted by the pituitary gland that tells the adrenal glands to make cortisol.  My ACTH was too low to be measured as well.  When they flooded my system with ACTH, I made some cortisol, but not as much as they might have expected.

And what does that mean?  It means that my pituitary gland isn’t making enough ACTH, and hasn’t been for a long time.  And that my adrenal glands have therefore not been making enough cortisol.  I have something called severe secondary adrenal insufficiency.  We don’t know the cause yet.  But the upshot is that it’s extremely treatable.  I’m on a steroid called dexamethasone, that replaces the cortisol my body can’t make.

That health crash I had six years ago?  The one I worked hard to conceal until after the worst was over, because I was afraid of being bullied for having too many medical conditions?  Where every single health condition I had took a nosedive, I ended up bedridden, and needing a power chair, and all kinds of changes took place?  We now think that was the time that the adrenal insufficiency became serious.  It may have been around for quite some time after that.  And if we hadn’t treated it, my expectation that I wouldn’t live to see forty, may well have been accurate.

On dexamethasone, I improved rapidly.

Prior to dexamethasone, I could not jump even when holding onto a grab rail.  On dexamethasone, I could do jumping jacks.  First five, then ten, then twenty, then forty.  Before, I couldn’t walk up one flight of stairs.  Now I can walk up and down eleven.  I’m walking everywhere with a cane now, and barely even needing to use the manual wheelchair I bought (thinking that it was more realistic that I’d need a manual wheelchair than that I’d start walking everywhere — I still do need it sometimes, but not that often). I can do 400 meters on a treadmill, I am starting to be able to run (my legs wouldn’t even move that way before) and skip and balance on one foot, and all kinds of other things I thought I’d lost forever.  I’m going on walks in my neighborhood.

Perhaps most amazing is the way I feel after exercising.  In my entire adult life, I have never felt this way:  When I exercise, I feel invigorated afterwards.  I feel more energetic after exercising than before.  This is entirely different than before, when even minor exercise made me throw up, collapse, or both, and could leave me sick and with my body temperature running high and low for weeks.

And this is amazing and magical and wonderful.

But every time I try to talk about this with a nondisabled person, or even with many disabled people, I run into a very ableist way of thinking about this:  The miracle cure story.

It runs sort of like this:  A disabled person has been hanging in the balance between cure and death (because what other possibilities are there for a disabled life?).  Hope means finding a cure, despair means not finding a cure.  They do find a cure and everyone rejoices and everything goes back to how it should’ve been (with them not disabled, of course) and things are great from there on out.

So I run into a lot of people suggesting to me that I’ve “found hope” (I haven’t).  Or that I’m “cured” (I’m not).

Here’s the reality:

I will be on steroids for the rest of my life, according to my doctors.  If I don’t take them, everything goes back to how it was and I would eventually die.

I have to keep injectable steroids around, because it’s that important that I get them every single day, even if I have a stomach bug or a clogged feeding tube.  I don’t have any other meds where it’s so important that the doctor has insisted on injectables.  Even meds that are dangerous to go off quickly.

A bottle of injectable hydrocortisone, Solu-Cortef.

Any time that I become stressed out or sick, my symptoms come back and I have to take more steroids.  This puts me at higher risk when sick, hospitalized, injured, or severely stressed out.  To give an example, when I found out my mom had been in the ICU, I went from feeling great, to too weak to breathe easily, in a matter of seconds.  And when I run down my stress hormones like that, I don’t make new ones, so I have to put them back artificially, it’s called ‘stress dosing’.

I have to be constantly aware of my body and of my stress levels and other factors that affect how much steroids to take.  And I have to largely play it by ear.  There is no blood test to tell you if you’re on enough steroids or not.  You have to learn that yourself.

I’m still autistic.  I still have a variety of other conditions, although some of them are much less severe now that I’m on steroids.  I still need a feeding tube.  I still need to communicate by typing.  I still need a wheelchair sometimes.  I still have stamina problems, just not as severe as before.   I still have severe chronic pain, which is getting worse as I try to train my body to move around instead of lying propped up in bed all the time.  I still have autonomic dysfunction.  I still have hypermobility syndrome.  I still have gastroparesis and bronchiectasis and the hellish interactions between them.

And even though it’s under control, I still have severe adrenal insufficiency.  Having something controlled by medication is great, but it’s not a cure.  A cure would mean I wouldn’t need to take medication, wouldn’t need to watch my stress levels and illnesses very carefully, wouldn’t need to be constantly alert to changes in my body.

This is wonderful, but an inspirational fairytale ending it ain’t.

Blogging Against Disablism Day, May 1st 2014

Feeding tubes and weird ideas

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My favorie BADD post: Tube-ageddon.

I haven't had much time to write anything here about the hell I went through getting my GJ tube. I had every indication for a GJ tube. I had gastroparesis so bad it was starting to affect my breathing, in a way that doctors said was likely to result in infection after infection until I died. From the emergency room onward, doctors were saying my best hope was to get a feeding tube.

Yet the pressure I got from doctors, while in the hospital for one of those infections, was to just keep getting infections, go home, wait to die. Most of them wouldn't say that outright. But some of them did. Some of them we confronted and they absolutely agreed that the only alternative to the tube was death — which could have happened to me by now, without the tube. But they still insisted on telling me not to get the tube, basically that I was better off dead than with a tube. We had to rally a bunch of people on the Internet to call the hospital before they suddenly changed their tune. My pulmonologist told me she could tell exactly when I started getting people calling the hospital, because the tone in my charts changed instantly to “let's get her the tube after all”.

Most people think of all feeding tubes as the same, all reasons for getting them as the same, and so they believe in false generalizations about their capacity to prevent lung infections, or indeed cause them. But they aren't all the same. They're all different, and the reasons for getting them are all different.

I have gastroparesis. That means my stomach is partially paralyzed. In my case it became severe before it was diagnosed last year and confirmed with testing this year. It's probably due to neuromuscular problems inherited from my mother, who has autonomic neuropathy among other things, a common cause of gastroparesis. My symptoms are similar to hers so doctors are assuming whatever we have is related. Anyway, it makes food remain in the stomach a long time. After awhile, this means that you can't eat very much and you drop a lot of weight. (I may still be fat, but they tell me by the end I was burning muscle.) by the end I was having trouble keeping down two small cartons of Boost a day, which isn't enough calories to live on. I was already on a liquid diet so there was no less food I could keep eating.

It also meant that the stuff staying in my stomach was riding up my esophagus again on gas bubbles formed by food sitting in my stomach for ages. I could feel it happening several times a day. I'd belch and food or bile would ride up with it. If this happened overnight, my bipap machine would shove the stomach contents down into my lungs from my esophagus. This began happening several times a week, and from January until March I had about five lung infections requiring antibiotics. I never stopped taking antibiotics, by the time one course was over I'd be on the next. Which is dangerous in its own right.

So when I showed up in the ER a few days after a CT scan showing what they called a “ground glass appearance”, they had no problem admitting me into the hospital, and even in the emergency room they were telling me if I wanted to live I needed a GJ tube. This wasn't news to me. They had been talking about a feeding tube since last fall, when one more nausea med added to the five they'd started me on, made me able to go home without one instead. I'd been discussing with my friends what kind of feeding tube served my needs best as a person with gastroparesis. And the GJ tube had always seemed like the best option.

A GJ tube is like a combination of a G tube and a J tube. Half of it goes into the stomach, which is a G tube. The other part goes into the first part of the small intestines, which is the J tube. The G tube gives you the ability to drain your stomach contents out into a cup, and dump them down the toilet. This means that if you do it often enough, you won't have anything building up in there and going up into your lungs. Right now, even bile and stomach acid can build up to dangerous amounts because of my stomach not emptying often enough, so I take acid reducers and I drain my G tube several times a day.

The J tube portion is the part that stuff comes in through. I eat through it. I drink through it. I get all of my medications through it. This means that nothing has to come in through my stomach. Which means we are bypassing the worst part of my digestive system. Not that the rest of my digestive system is wonderful. My esophagus is slow, my stomach is slow, and my bowels have been producing blockages since I was a teenager. But with liquid food going into my small intestine at a fairly slow rate (one feeding in roughly twenty four hours, I wasn't able to handle the twelve hour version without getting very sick) I seem to be able to handle things much better than when it was going in my stomach. I love it. It's so much easier than feeling horribly sick all the time.

I still take nausea meds, but half of them have been changed to PRN instead of daily. So daily I take Phenergan, Reglan (which speeds up my digestive system), and Marinol. And I can also take Benadryl. Lorazepam, and Zofran as needed. I used to have to take all six of those things every day, so this has really cut back on the amount of medication I need, which is good because every single one of these meds is severely sedating and it was badly affecting my ability to think straight. If I were still trying to eat, I would be taking every single one of those nausea meds at the maximum dose, and still wouldn't be able to eat enough to maintain my weight.

[Photo of me holding my tube. The J tube section is visible, the G tube is hidden behind my hand, and there's a little cloth thing from Trendie Tubies around the base, with owls on it.]

But I had to fight for this tube. Even though it was the only way to save my life. I had to fight against people who were certain I was better off dead. And I needed the help of a lot of people on the Internet, to do it. When I did get the tube, it was done without a working anesthetic. And even though the local anesthesia didn't work on me, even though I was yelling and screaming, they didn't stop to give me more, they just kept telling me that the Versed meant I wouldn't remember it later. Yeah right. It seemed like the entire process of getting the tube was one giant clusterfuck after another, and like people were making it as hard for me as they possibly could. (Later, when I had to get the tube replaced, we discovered that Propofol is the med, in combination with others, that really does the trick to keep me unaware of what's happening.) They treated me like a child, repeatedly expressing the fear that I would pull the tube out like young children often do, and blaming me when part of the tube got lodged inside me, probably as a result of over zealous physical therapy early on that was a clusterfuck in its own right.

But I got the tube and I couldn't be happier with it. I feel happier and healthier. After aspirating reflux several times a week for months, I haven't aspirated a single time in the month or so I've had the tube. My nausea is well controlled. My brain and body work better. Despite a couple complications since then, it's still the best thing medically that's happened to me in the past year. And I'm still alive, which even by now I might not have been if I kept getting infection after infection.

[The x ray showing the tube inside my body.]

Why did I have to fight so hard for it? I see two major reasons. One is that I'm perceived by medical professionals as someone whose life doesn't matter much, doesn't have much quality of life. I'm autistic, they read me as severely cognitively impaired, I am in bed all the time, they don't see that I enjoy living as much as anyone else does, and they make that decision somewhere in their heads without even noticing.

The other reason is the way medical professionals see feeding tubes. I've been trying to read the writing of nurses and doctors to find out their views on these things. Not just the horrible ones. The ones who snark at patients on their blogs. But the ones who think they're compassionate and sympathetic and good at their jobs. But in one area that makes no difference:

They all think of feeding tubes as the beginning of the end. They see getting a feeding tube as the first sign that your life as over. Possibly that you belong in a nursing home, as if anyone does. When I made out my living will, the first question of “Where do you draw the line where you want to stop living?” was whether I wanted to live if it meant I needed a feeding tube. They see people with feeding tubes as the first stop on the route to a living death. Other things they see that way are using a ventilator, having a trach, needing any sort of similar mechanical assistance to survive.

My friends see it a different way. They see me as some cool kind of cyborg, with the oxygen, the feeding tube, and the Interstim implant that prevents spasticity in my urethra, allowing me to urinate. They say the sounds my oxygen concentrator makes sound almost steampunk. But then all my friends are disabled, they see adaptive equipment as cool, and as a means to living, not a sign you're dying.

Medical professionals have been shown time and time again, to rate disabled people's quality of life lower than we rate our own quality of life. And yet time and time again, they see themselves as the experts on what our real quality of life is. One reason I try to keep my lungs and my guts in good condition is that as a person who is autistic and physically disabled, I know that if I ever got bad enough to need a transplant, I'd probably die. Because they would take one look at how I sound on paper, and they would decide my life wasn't as worth living as that of a twenty year old who wasn't disabled except for the effects of their lung problems or digestive problems. (Lung transplant is the end of the line for severe bronchiectasis. My bronchiectasis is mild, I'm working hard at keeping it that way. Transplant is also the end of the line for very severe gastroparesis combined with other gut problems. I'm hoping I don't get to that point despite severe gastroparesis. Given how hard it was just to get a feeding tube, which is the standard treatment when you start aspirating this much and being unable to eat even a liquid diet, I don't know that I stand a chance at making the transplant list should I need one.)

I also had trouble getting home. People were asking me if I belonged in a nursing home, or at least in twenty four hour care. I'm not sure why. It's not like it's hard to care for a GJ tube. It's unusual, but it's certainly easier than my old med regimen, which was truly difficult and time consuming. Now we just mix them up, put them in a syringe, and stick them straight into the tube. Easy. Eating is easier too, no more worrying I will throw up, and you only need to set up the food once a day and press a button on a feeding pump. But everyone has this illusion that it's incredibly difficult, and the VNA loves to take people with tubes and stick us in nursing homes claiming they can no longer care for us on the outside.

[The feeding pump on an IV pole with the food (Osmolite, low fat, high protein, no fiber) hanging above it.]

I still don't understand what the big deal is supposed to be. By the time you get a feeding tube, eating is really hard. Either you're having swallowing problems, or something is wrong with your stomach. In my case, my stomach was emptying so slowly that I was constantly severely nauseated no matter how little I ate, I was dropping weight way too fast, and I was aspirating reflux caused by all the food sitting around for ages. I was quite possibly going to die from repeated infections. How the hell is a feeding tube supposed to be worse than that?

I can't even begin to comprehend the fear of these things. I mean I literally can't do it. It makes no sense. It's all based in prejudice. It has nothing to do with the reality of a feeding tube.

I thought the worst part would be not being able to eat. The most I can do is drink a tiny bit of ginger ale, and I have to be very careful even with that. But I don't miss food. The feeding tube ensures that I am never hungry, and always have the nutrients I need. The only times I have ever started craving food, were two separate days where I spent all day at the emergency room unable to use my tube. Each time I came home and wanted to eat or drink something I didn't normally want to eat or drink. But when I'm getting food regularly, it's not a problem. I barely miss eating at all. I never even think about it. Even the vivid dreams I'd been having about all different kinds of food, all those months on Ensure, have gone away. My body seems perfectly satisfied with what it's getting, and it doesn't crave things unless I can't use the tube.

And it makes everything easier. Food is easier. Medication is easier. Absolutely nothing is any harder than normal. It's more like dealing with something easy and mechanical, than dealing with anything hard. We did learn the hard way to flush it with coke after every medication, because by the time there was a clog, you couldn't get enough coke in to dissolve it. So we are dissolving the clogs before they can even form, by leaving coke in for awhile after every single time we use meds. I've also discovered it's possible to reduce the pressure inside me — which can prevent the meds and water from flowing into me as easily — by relaxing my body, especially my rectum, and then everything usually flows in pretty easily. So there are a few tricks, but it has overall been much easier than my life was before I got the tube.

So what is so scary? I don't know. I can't find anything at all scary about this. It doesn't mean anything horrible. It means I'm alive. Being alive is a good thing. I don't fear death, but I only get one chance at life, and I don't want to die just because someone else has decided my life isn't worth enough to them. And so I'm very much interested in anything that will keep me alive longer, whether it's a feeding tube or any other “scary” device used for keeping disabled people around longer than used to be possible.

A lot of people I know have those devices, the ones that medical professionals think your life is over. Feeding tubes. Trachs. Ventilators. Catheters. Ostomies. Central lines. All those things that seem to scare people to death, even though there's nothing scary about them. They prolong life, not end it. And I'm furious at every single doctor who urged me to go home and die rather than get this feeding tube and get a chance to live longer. That is simply not their decision to make, and they were bound and determined to make it for me until I got enough people on my side to convince them that the entire world was watching the crap they were trying to pull.

I am going to work as hard as I can, to change hospital policy so that nobody gets pressured in the way I did. It's incredibly difficult to deal with pressure to die, when you're already sick and exhausted and have no energy to fight back. And they do it in sneaky ways, so that if I had been delirious or something, which I often am in the hospital, I might not have recognized what they were trying to do. My experiences are far from unusual, many disabled people have been encouraged to die rather than get a feeding tube, or a vent, or something else that would allow us to live. My mother, who has many of the same conditions I do, is going through a mess where doctor after doctor refuses to treat her or perform surgery on her, and she keeps having to go back to the Mayo clinic because they're the only ones who seem to be committed to making sure she can live as long as possible. And as a disabled senior citizen way below the poverty line, she gets the “your life isn't worth it to us” thing from at least three different angles. This stuff isn't unique to my life, the pressure to die is everywhere.

But most disabled people, like most people in general, prefer to be alive. Being disabled rarely changes that fact, not on its own. And the fact that anyone thinks we ought not to, that their pity goes so far as to be a death wish aimed at another person, is so disgusting I don't even have words for it. But they are the ones who are disgusted at my advance directive, which tells them to keep me alive no matter what. I can hear it in the sound of their voice when they ask me about advance directives. Advance directives are supposed to be about making your own choices, but the choice to live is the least respected among them. They would rather I not be here by now, rather I got my sixth, seventh, eighth infection until my lungs finally gave out. I refuse to give them the satisfaction. I love being alive and a tube doesn't change that one bit, in fact it makes my life better.

 

Hills and cliffs.

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I was just having a conversation about a difference I’ve observed between various autistic people. I want to note, before I describe it, that it’s not some kind of cut and dried division, nor is it scientific. It’s just an observation I’ve made. It’s not even a matter of “types of autism” necessarily, because a person can function in both ways at different times in their life, or bits of both at once. But I notice that some of my friends and family are primarily one way, and some are primarily another.

And be aware that when I’m talking about abilities, below, I’m talking about surface-level stuff. I’m not talking about the deeper neurological/cognitive sorts of abilities, which might be both stable and very much similar in all groups of people described, for all I know.

Basically…

Some people seem to have very stable abilities. If there’s things they can’t do, they just can’t do them. And if there’s things they can do, they always can do them.

Other people seem to experience a lot of change and fluctuation. They might be able to do something one moment and not the next, and they might always have various abilities moving out of the way to make room for whichever one is being used.

And I thought of an analogy to this, or rather elaborated on one of my old ones. Think of elevation as ability in any particular area.

Some people seem to have started off at a certain low elevation in this particular area. Then as they got older, they hiked up the slope. At the top of the slope was a nice, large flat area where they could find a place to live very easily on a long-term basis.

Other people seem to have started off at the same low elevation, but what’s in front of us look more like cliffs. We can get very adept at climbing those cliffs, but when we are, there is nothing else we could possibly be paying attention to, since too much is going to dealing with this cliff face. When we reach the same elevation as the other person, we are hanging onto a cliff face with our hands and feet. There is no possible way we could stay there. We might even be able to reach much higher elevations than the other person — the cliff seems to not have a top, from our perspective — but we will eventually have to either climb down voluntarily, or fall down involuntarily, back to our original level.

Some people might actually find a top to their cliff eventually, and thus be able to remain stably at that ability even if it took a lot more effort and falling down than someone else took to get to that point. Other people won’t find that, and will end up having to deal with cliff faces all the time.

And there is a definite difference, even in two people doing the exact same thing, between one person standing on flat ground at a certain elevation, and another person hanging off a cliff at the same elevation. They might be doing the same thing, and at the same elevation, but they’re getting at it in very different ways, and only one of them will be able to sustain what they are doing for very long. There are all kinds of things this analogy can’t get across — particularly the complexity of having skills shift around all over the place while you’re climbing those cliffs — but I hope that is one of them.

This difference between ways of doing things seems to exist within all so-called “levels of functioning” and other ways of trying to divide autism into little parts. Both sorts of people, and all combinations and variations of those ways that skills can work, seem to exist among people with all ability labels. I do suspect that some of what gets called ‘regression’ is actually just that someone was cliff-climbing and fell back down to the ground, rather than that the person was not autistic until they ‘regressed’.

I’d also like to note that at my own version of ‘ground level’ in many areas, there is a lot of stuff that’s invisible to people way high up in the air from my perspective (including me, on my climbs up here). Not all of it is bad stuff. There are abilities down here that don’t exist so much once you start climbing, and that I rely on as my more reliable abilities, that exist without too much effort or forcing. So climbing high in one area can mean leaving other things behind on the ground. And even people who climb cliffs to get to where most people start out, have actual abilities that do stay the same at some basic level on the ground. They’re just not usually considered to be that. (And people who mostly live up high but happen to walk by a cliff and fall onto lower ground, have a very different experience of this than those of us who live on lower ground but climb up onto the cliffs. Even if both sets of people look identical in some contexts.)

I hope I haven’t by now stretched this metaphor to its breaking point, but I figured it might be useful, and I’ve seen this difference create a lot of confusion between different autistic people before. (And I don’t think it’s limited to autistic people, I’m just talking about autistic people because that’s the conversation I was having that got me into this.)

The right to say “I don’t know”.

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I’ve been, offline, for many years, writing down things I do or have done that cause problems, either for me or for other people. This isn’t some kind of self-flagellation or anything. I just figured if I wrote everything down then maybe I could figure out how not to do some of these things.

There’s a few sentences that I have had to work really hard to use on a regular basis and in their appropriate context:

  • I don’t know.
  • I don’t understand.
  • I don’t remember.

I say I don’t pass, and when I say that I mean that if you look at me you know something’s different. The most I ever passed for at my peak of passing was eccentric (to people who liked me) and annoying or crazy (to people who didn’t). But it doesn’t mean that I haven’t developed strategies, without even meaning to, to cover for certain situations in which betraying a lack of knowledge or understanding would earn me ridicule, disbelief, and hostility. So I guess it could be said that I pass, or try to pass, in certain areas, although what I pass for is sometimes worse than what I actually am.

I’m sure this is something a lot of people do. The difference is that when most people cover for a lack of understanding or memory or knowledge, they’re covering for fairly standard lacks in those areas. The areas that I don’t understand, know things, or remember things, are relatively unusual ones. So somewhere along the line I developed a strategy of substituting any explanation that sounded plausible, whether it was true or false. I did this unconsciously, and I did it solely to cover a lack of understanding, not with any malicious intent.

Over the years I have been able to nearly stop doing this. But there are still some situations where it happens. The more of the following are involved, the more likely it is it will still happen:

  • Pressure to produce language rapidly.
  • Pressure to produce answers rapidly.
  • Ridicule, disbelief, scorn, hostility, belittling, or actual physical damage, if I do not produce language or answers rapidly.

This was summarized in more official language in my IPP this way:

She reports that pressure to perform according to other people’s schedules and expectations makes thinking things through difficult or impossible. When form is valued over function in decisionmaking, Amanda is likely to perform in a rote way without full understanding of the range of choices available to her or the decisions ascribed to her.

[…]

When Amanda is pressured or overwhelmed, she sometimes reverts to non-communicative echolalia, using responses she has already learned, without evaluating them to see whether they are the ones she wants. Non-communicative echolalia often results in others believing she has made an informed decision when she has not, and in others assuming that she has agreed to something that, upon reflection, she does not want.

Basically, when I’m under pressure, the focus of word-generation starts heading away from communication, and towards the best possible way to get someone off my back as quickly as possible regardless of what I end up having to say in order to do it. This can be a useful survival skill, but it’s completely useless when it comes to wanting to actually communicate. And the last time I really did a lot of it ended in total disaster.

As to reasons I do it… several years ago, a friend of a friend (I’ll call her Jenny just for convenience’s sake) was talking to me and Laura about me. Jenny was trying to explain to me the idea that I might just be uncomfortable moving beyond my “comfort zone” and trying something new and so forth. Laura replied that this wasn’t usually the problem with me, and that in fact my problem was usually a about whether I believed I was allowed to or had a right to do certain things. While that’s not as much of a problem now, I still catch myself seeing something and going “Oh wow, I didn’t know I was allowed to do that,” and then doing it. It’s not usually a “comfort zone” thing for me, it’s a forgetting that something is permitted.

That’s been the case with “I don’t know.” And “I don’t understand.” And “I don’t remember.”

Because there’s a lot that I know somewhere in my head, but I have real trouble accessing that knowledge. I usually think I’m required to give an answer. “I don’t know” is an answer that is easy to forget is allowed.

And there’s a lot that I don’t understand, things people think I should understand or do understand already. I’m used to thinking I’m required to come up with some demonstration of understanding something even when I don’t. The idea that I’m allowed to say I don’t understand is still a bit surprising.

“I don’t remember” is one of the hardest ones. Because it’s the answer to a lot of “obvious” questions a lot of the time, like:

  • What did you have for breakfast this morning?
  • What did you do yesterday?
  • When did you learn ________?
  • What was your first experience with ________?

My memory, such as it is, stretches back to some part of infancy, although the things I remember from back then aren’t generally things that would interest most people. When something triggers a memory, my memory is reasonably accurate, although fuzzy on some details. But if for whatever reason the thing isn’t triggered by the exact right sequence of events, all you get is blank space. And straining against blank space only provokes frustration and eventually possibly confabulation, not real memory. So, if you asked me what I ate for breakfast this morning, I might say “scrambled eggs” because that’s something people eat for breakfast. But it’s a guess. And it’s probably inaccurate. (In fact I know it is because today I wouldn’t have had enough eggs left to make those.)

And I know that the responses I get if I admit lack of knowledge, understanding, or memory (in areas where most people have automatic knowledge, understanding, or memory, or in places where I’ve clearly demonstrated knowledge, understanding, or memory in the past) are often really unpleasant:

Some people laugh at me. Some people think I am being stubborn or refusing to tell them things on purpose. Some people call me stupid. Some people add pressure as if they think that will make me more able to come up with an answer (hint: the more pressure you add, the less accurate the answer, so watch out). Some people think I’m lying. Some people think I am being passive-aggressive. In fact, I can vividly remember someone screaming at me, after one of those I don’t understand or I don’t know or I don’t remember moments, “I’ve had it with your passive-aggressive bullcrap!”

I’ve decided at this point that I’ve had it, too. I’ve had it with people who can’t accept what I don’t know, understand, or remember. I’ve had it with people who’d rather I pretend to know something than admit I don’t know it, who in fact find such pretences somehow more honest than my serious and real lack of knowledge. I’ve had it with answering partially, incompletely, or totally inaccurately because people insist I have to, and with the consequences of doing so which are usually some justification for hurling some kind of abuse in my direction or giving me crap later when I try to fill in the gaps or retroactively correct myself or even (horror of horrors) change my mind.

To people of that nature:

If I don’t know something, I’m not going to pretend to know it for your sake.

If I don’t understand something, I’m not going to pretend to understand it for your sake.

If I don’t remember something, I’m not going to pretend to remember it for your sake.

I’ve now explained this. From now on, I don’t care if the gaps in my realtime access to knowledge don’t make sense to you. I don’t care what you accuse me of for taking my time, for refusing to answer questions I don’t know the answer to, or for correcting previous inaccurate or incomplete answers I’ve given under pressure. I have a right to say I don’t know when I mean I don’t know. If people can’t handle this part of my daily reality, that’s henceforth their problem.

And I think in saying this I’m not only speaking for other auties who’ve discovered the same covering strategies I’ve discovered, but for a lot of other people as well. A lot of people who are deaf or hard of hearing (or, like me, have general receptive language problems) end up pretending to understand something, because they know if they slow the conversation down by trying to figure out what people are saying, they’ll get in trouble. This is done so often among people with certain kinds of amnesia that it’s earned itself a medical name. A lot of people with learning disabilities (either the UK or the USA variety of that term) learn to do things like this as well.

And we shouldn’t have to. Other people do not need to be shielded from the inconvenience of dealing with people who doesn’t know, understand, or remember the exact things most people are expected to. Surely the cost of day-in and day-out passing and covering and confabulating is higher for the people doing it (and for that matter those around us) than the cost to those around us of actually dealing with the unexpected gaps in our understanding, knowledge, or memories. And these gaps are nothing to hate or be ashamed of. I for one am not going to cover them anymore.

Being talked around rather than to.

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Joel wrote, in Walking While Autistic (something in itself I have way too much experience with, but that isn’t the topic of this post):

I’ve written about having a restaurant bill handed to someone else because I communicate differently sometimes. I know of other times when I went shopping with a wheelchair user, and because I don’t use a wheelchair, it was assumed I must be my friend’s “minder”. In some of these cases, my friends handed the store clerk money only to find the clerk handed the change not back to the customer, but to me instead. The obvious implication is that my friends were not competent with money, and needed someone else to do that for them (also that they weren’t competent to hand someone else the money themselves if they truly weren’t competent with money). I know other times when even people who are involved in the disability rights movement are very surprised when they meet someone in person, and find out that they don’t look or act exactly normal, or even disabled in the way which still “allows for the possibility of competence” in the eyes of the advocate.

I had a strange experience of this sort today.

I went into a hair salon with my staff person and my dog (it was too hot to leave her in the car). Since it was a short distance and the day was good for it and so forth, I was on foot, and not using any mobility aids. While I had a keyboard with me, I was not using it either. I was not even to my knowledge rocking or doing anything else unusual. We just sat and waited.

But even so, when it got to be my turn, the hairdresser talked to my staff person, and talked about me in the third person. She was surprised when I typed something, and did eventually redirect her attention to me in the first person. But I have no clue what quality in me caused her to do this. I’d been blaming a lot of it on the adaptive equipment or on overt stimming, but I wasn’t stimmy today, I wasn’t known to the hairdresser, my staff person wasn’t known to the hairdresser, and I wasn’t using any adaptive equipment that would’ve given me away. So there must be some other cue that people are picking up on. Maybe similar to the invisibility Bev talks about (and that I have seen Jim Sinclair and others discuss in the past).

“We won’t help you until you stop acting like you’re in pain.”

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Last night I engaged in a very interesting conversation with a guy who works at the service that helps me out at night.

I was in a lot of pain. By a lot of pain, I mean I was crying and periodically screaming. I don’t cry from pain usually. I didn’t cry when my gallbladder was well into emergency stage, I just went really quiet. If I’m crying from pain, it’s serious. And this pain (and related movement restrictions) was serious enough that a spinal tap was done when I finally did get to the emergency room, because it sounded to them a lot like meningitis. (Fortunately it wasn’t.)

Anyway, I was sitting there trying to string sentences together, while barely able to keep auditory comprehension going, and trying to push through all the pain-induced shutdown to actually talk to the guy. And I’d periodically get the wording wrong or scream in half-pain half-linguistic-frustration or accidentally interrupt him. He told me that he would not help me until I was able to “respect” him the way he “respected” me.

You know… usually, if, for instance, someone’s finger’s cut off, and they’re running around cussing and screaming and not being very polite, other people kind of grasp why they’re acting like that and don’t act like the person is being disrespectful on purpose. Somehow, if the person has some kind of disability label however, this becomes a “behavior problem”. I used to know a guy who went untreated for pain for years, with a dislocated hip, because he had a developmental disability and all the things he did because of the pain were considered “bad behavior”. They didn’t bother looking to see if he was in pain. Hint: Physical pain isn’t behavioral, and treating it as behavioral is a violation of our rights.

(And if I’m not tending to my blog enough, now you know part of the reason. Sorry about that.)

The funny thing about communication.

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Joel wrote about how people think about him when he’s using a communication device versus when he’s speaking, in You Must Not Want Company. One remark made was that when someone’s using a communication device, they obviously want to communicate or they wouldn’t be using it. I wanted to write a bit about when I’m communicating but not speaking or using a communication device.

I’ve had a few different friends remark that they were sort of amused by something about me. That was, that they could go for half an hour to an hour of having a conversation or other interaction with me, before noticing that I wasn’t actually talking or typing at all.

One of them was a friend where whenever she visited me (we lived near each other for awhile, now we’ve both moved away) we’d just sit there for awhile without talking to each other, but certainly greeting and interacting with each other. Another is a friend I now live near, who commented recently to someone else that she’s often shocked when she notices that she’s been carrying on a long conversation with someone who isn’t saying anything back, and that it feels totally natural.

It feels totally natural to me when it happens, too. It’s less tiring than coming up with words is, that’s for certain, or than listening to words. It doesn’t cause that awful feeling of exhaustion, pain, and pressure that entirely word-based interactions eventually and inevitably cause. It allows me to actually participate in non-verbal communication rather than being blocked out of it by language (and yes, one tends to block out the other, either way). And the interaction feels a lot more meaningful to me.

Another situation is when I truly can’t move, or can’t respond in other ways (even if able to move). I am automatically fearful when that happens, because some of the worst interactions in my life have been when this has happened, whether this be the kid in college who used to hurt me to try to snap me out of it, or the psych ward staff who used it as a bizarre excuse to tie me down and scream at me (question: When someone is so stiff that you can pick them up by their hands and the rest of their body stays rigid in a sitting position, why do they need to be any further immobilized than they already are?).

I have had two surprisingly good experiences with this recently. One of them was at AutCom last year, when I was exhausted after giving my talk, heading into another bad migraine, leaning against a wall, and not frozen but not able to respond or even focus my eyes properly. The staff person of one of the other attendees came up to me and talked to me, and I realized it was one of the first times that a stranger had talked naturally to me when I was like that, as if they were fully aware I could understand them. That meant a lot to me. Another was after those darned fireworks, when my friend explained to my other friend that freezing like that did not mean that I was unaware of things, but rather than I was likely more aware of things than usual. That’s something a lot of people never understand.

Joel is another person I’ve had a lot of fun with without necessarily talking all the time. Although the two of us can type up a storm together too. (When we first met, we put a laptop on a table, hooked an extra monitor and keyboard to it, and typed back and forth on it for hours.)

I wonder what it is that makes the difference between the people who experience enough communication from me that they forget that I’m not typing or speaking, and the people who forget that I’m there at all because I’m not typing or speaking.

Whoever invented fireworks…

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…ought to have them strapped to their ears, or something.

I can’t stand Independence Day. Thanks to a loud fireworks show, I spent a good deal of last night first involuntarily twitching every time a loud firework went off, and then later frozen in place for a really long time. The guy I was with said that fireworks were a good autie test: The two of us were the only ones visibly startling, in a large crowd of people who had gathered outside my apartment building to watch the fireworks. I can’t understand, either, why we commemorate a war with a display that has to be absolute hell for veterans. But anyway. At least this time I wasn’t curled up under a desk like I was last year, although that’d have been preferable maybe.

Something I noticed like always, but this time decided I was going to actually mention rather than relegating it to “things I can’t possibly find proper words for”, was that as soon as my body began un-freezing, my mind started freezing. When I freeze, it generally follows a certain progression, where first I can’t move at all, then I can only move in certain locations or directions and not in others (usually roughly the same sequence), and then I can possibly end up re-freezing in different positions, and so forth. I found that I could understand everything fine, and think and plan just fine, as long as I wasn’t moving. But the moment I did move more fluently, then my mind went rigid in the same ways my body had, and then I could only move along some pathways but not others, and there were giant gaps in what I could understand compared to usual. Which still makes me think there must be some kind of tradeoff going on when that happens, either comprehension works or moving works but not both.

By the way, if anyone ever happens to be present when that happens, be aware that the biggest concern is making sure that I’m changing position often enough to avoid injury. It takes awhile to get a pressure sore, but long before one happens, the pain is pretty excruciating. And not being able to move doesn’t mean not being able to feel pain. (It also doesn’t mean not being able to hear you or see you, so waving hands in my face or shouting louder at me is really annoying and unproductive. Nor, unfortunately, does it mean being unable to feel itches. And I could tell all kinds of stories of the sorts of things people have said and done under the assumption that the moment I stopped moving I stopped comprehending. In fact, the opposite is usually true, and if you don’t want to be written about in great detail later, don’t mess with me verbally or physically when you think I can’t understand you. That includes any of you who stand by and watch while people do these things, too.) The seat of my wheelchair is designed to handle a totally immobile person without causing pressure sores, pretty much any other seat is not. Another of the main concerns is to make sure that I’m not in a position that would impair breathing (anything that bends me in a way where I can’t get a full breath of air).

I also realized that it’s been so long since I’ve had a normal (for me) activity level that I had completely forgotten what can happen when I do. I’m finally getting over the asthma crisis — I hope. And the fireworks were undoubtedly only the last straw. Since realizing I could exercise again without breathing problems, I had a few days ago run all over downtown (including uphill) with someone without being pushed at all, and then yesterday, started an exercise routine, gone to the park with my dog, and watched the fireworks show. I’d completely forgotten there were non-breathing-imposed limits on this sort of thing, and that I might want to take things slightly slower. Then I suddenly noticed I couldn’t move. :-P

Little phrases.

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This week.

I just put that phrase in a sentence starting, “Whereas for quite some time this week I’ve had the ideas…”

But I didn’t mean this week. I meant, this-arbitrary-measurement-of-chunk-of-time-longer-than-a-day.

I could’ve said, the past few weeks, this month, the past few days, last month… those are all phrases in my repertoire for that kind of thing, and they pop out interchangeably.

This is, I suppose, one of the hazards of using and learning language by pattern. Especially when I’m tired, I’ll know which phrases “sound right” together, and “go right” together, but it’s really, really easy to forget to check them against what I’m actually meaning. So “some kind of chunk of time” simply becomes substituted with any chunk of time. A particular topic area gets substituted with its opposite without noticing, because both are connected in some way in the pattern system in my head.

And my speech seems irreparably that way, patterns devoid of internal meaning for the most part, or only tangentially tied to it. But somehow, even though I’m clearly using the same mechanisms while typing, they seem to be tied closer to thought and experience and so forth. Except when I’m tired or hungry or sick or overloaded or something, at which point things start falling apart more.

What people will notice if they see me type, is that while I make the usual kind of typos sometimes, the most common kind of typo I make is a whole-word or whole-phrase typo. My fingers will spit out a phrase that is not the one I want and I have to delete and go over it several times to get the one I do want. I’m not talking about subtle variations, either. I’m talking about things that change the entire meaning of a sentence, but that don’t have to sound as if they’re wrong somehow.

It seems like, there’s a phrase machine somewhere in my brain, and it spits things out without my thinking about it. It spits out words, or chunks of words, according to pattern, not according to tying back to something in my head or in my experience. It does this automatically and my job is to insert the right meanings so it doesn’t veer off course somehow.

It’s very easy to get it to veer off course, too. Consider the following sentences: It seems like, there’s a phrase machine somewhere in my brain, and it spits things out, because they’re supposed to be there. It seems like, there’s a phrase machine somewhere in my brain, and it spits things out, in order. It seems like, there’s a phrase machine somewhere in my brain, and it spits things out, that are closer to one thing than another. Those sentences are all of course demonstrations of the phrase machine in action. They make sense, but they’re not necessarily what I’m trying to get at at all.

I have noticed, though, that there’s a quality to this, that I can sometimes see in other auties, when they are struggling with language, yet still appearing fluent in whatever their preferred form of language (written or spoken) is at the time. One of the first signs I see is a sense of disconnection from the words in the person making them. Even if the words are the right words, the person somehow sounds far back in their head behind their voice, as if their voice is a wall in some respects rather than a messenger. There’s a distance there, and it’s even more obvious when the person is clearly using a lot of stored phrases. I don’t know how I hear those things in other people, though, I just do.

And that is the ramble I have created on the basis of a simple-looking time error in a sentence.

Editing.

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Mom26children has written a post about the assumptions people make about her family based on their television appearance. I can identify a lot with what she writes. When CNN came to my apartment, they took two days of footage for that one ten-minute segment. As Mom26children says:

Some of you guys question the severity of my children’s autism by what you saw on an hour show. With commercials, you had 45 minutes into my very “edited” life.

I’ve been asked privately to clarify a lot of things about the CNN show, but I haven’t had the time or ability to think back on it much without the chaos of the whole thing being rather overpowering. But I think I’m finally at a point where it’s distant enough I can say this stuff without my head getting tangled in a lot of overloading memories.

That’s one thing right there: The whole experience was me under overload. It does not show how animated I usually am, and even the parts of the show where I did show more animation didn’t make it into the final product. I am remembering in particular when Laura brought baklava over, and they were excited to get footage of me squealing and flapping and smiling. But that didn’t make it into the final video.

They didn’t show me running away from the camera for most of the first morning until I got used to them.

Some funny things didn’t make it into the video, too. I still want to know what CNN does with some of their funnier footage. At the dog park, they trained the camera on my dog. Right as my dog peed. And right as another dog came up behind her and drank the pee. Which had all of us cracking up, but we knew they wouldn’t use that. I guess it’s sitting in an office somewhere if they don’t throw it out. They ought to do outtakes of their news shows.

They showed us at the dog park, but they did not show me after I took my jacket off and had a wide patch of my back exposed, and my staff was chasing me around trying to pull my shirt down while I didn’t get what the big deal was. They also didn’t show Laura explaining to me later that not being able to feel the cold doesn’t mean I won’t get frostbite.

They did not show even a little bit of the interview with my case manager. They interviewed him about his experiences with me and with autistic people in general. He also showed them all the equipment in my apartment that assures that I can get support at night without needing a roommate. (I am thinking of making a short video on that because it’s a really important idea that not a lot of people have heard of.)

There was also a lot of time they spent interviewing me that they of course didn’t have time to show. When they did show it, they did not show the reporter that interviewed me, they just showed Dr. Gupta. The reporter and the cameraman and sound woman actually spent the most time with me, Dr. Gupta was only there for a couple hours to interview me on the second day.

They showed the dentist’s appointment, but not really anything that happened within it, maybe due to confidentiality or something. What happened was the dentist basically assured me there was nothing mechanically wrong with my jaw to cause any pain. (When I saw the jaw specialist a couple weeks later, he did imaging and found that in fact my jawbone is underdeveloped in general, and the rounded area that the jawbone is supposed to rest in, is supposed to be deep and round, but mine is shallow and flat, and that I clearly have mechanical trouble closing my mouth and keeping it closed, as well as dislocation and pain and all that fun stuff, for reasons related to that. The dentist I saw on the show is no longer my dentist for that and various similar reasons, as well as my learning through word of mouth that his practice has a bad track record with autistic patients.)

There was also a lot of misinterpretation.

I suppose it makes better drama to say that I banged my head because I was an intelligent woman who felt “trapped” somehow. But really it was just because I made a typo and I was already stressed out. It was the first time I had banged my head in months, but they played that clip over and over.

I actually told them in great detail why I used a wheelchair, which has to do with a combination of assorted physical problems and a parkinson-like movement disorder I have. I told them how I waited until I was otherwise basically stuck in my house before deciding to get one, and how much more exercise and exposure to the outside world I got now that I had the chair. I told them about previously going out in groups at agencies and holding up the group when I’d freeze, and how another client used to comment they needed to get a giant spatula to pick me up. And so forth. Then I later told them that when I was lying down on my friend’s couch it was easier for me to think to answer questions, and that I’d have preferred to do the interview lying down for that reason. Somehow my reason for lying down for the interview got translated into “why I use the wheelchair” and they broadcast that information instead of all the previous information I told them. They said that I used it to make it easier to think, and while it is easier to think while not concentrating on walking, it’s not my primary reason for using the chair.

I think they were among the many people who greatly simplified the history I actually gave them of my life. That makes sense given the amount of time they had. But I told them a lot of complex stuff about my speech history that got simplified into something much more abrupt and sudden (which is what most people do to it, complexity doesn’t make for good sound bites). We discussed thoroughly why I was considered additionally to be psychotic for a long time, and they discussed that with my case manager as well I’m told. I explained all about elves and hiding in stereotypes and psychiatric force and everything else. I suppose that was too complex too.

I told them that I did not live in my own world, I told them this emphatically. While this did make it into the second segment, the lead-in to the first segment was still somehow about how I was trapped in a world of my own. (The people I talked to at CNN were not the editors, and did not even themselves have editorial control over the content of the shows.) I told them how I disagreed with the mild/severe and HFA/LFA dichotomies and stuff but everyone by now knows what they said about that.

I told them how the video I made was not actually about autism, it was a response to the situation of Ashley X and anyone else where people assume a lack of standard communication means a lack of standard comprehension and that a lack of standard comprehension means a lack of humanity and lack of value and lack of personhood and lack of basic human rights. Like many people, they still portrayed the video as being about my wanting to take people into “my world of autism”.

They of course also did not show me after their team left on the second day, while I was lying on my friend’s couch uncontrollably ticcing and screaming, something my body reserved until I was in private and familiar enough surroundings to do that sort of thing.

They didn’t show when communication broke down, they didn’t show how I struggled to find words a lot of the time, they edited out most of my typing, they edited out a lot of the parts where I said things I didn’t quite mean to say or didn’t understand what I was saying, they edited out the times when my friend had to interpret for me.

They didn’t show a whole lot of my staff, despite my staff being there most of the time, and despite my staff actually having spoken on camera on a number of occasions, as well as spoken to them directly about me, they didn’t use any of that.

So basically, they did not show some of the things I was capable of, they did not show some of the things I had difficulty with, and they simplified a lot of aspects of my life to fit into a ten-minute segment. This is standard for the sort of thing that the media does. I actually found it quite a lot better than I expected despite these problems.

When you see someone on television, you can’t know all about them. It’s not a standard situation. There’s editing. There’s nervousness around the cameras and the intrusions. There’s the fact that you’re only getting a tiny slice of a much broader life. You can’t know what that person is like when the cameras are gone, you can’t know how they move and behave every second of every day, you can’t know their abilities, you can’t know their difficulties, you just get a tiny snapshot of their life framed in whatever way these virtual strangers want to frame it. The person themselves has no control over the editing, nor often do the reporters. Anyone who thinks they can tell all these things about a person based on a news story doesn’t really know how these things work.

And that goes for my own videos too by the way. Seeing me for a few minutes doing things specifically intended for broadcast on the Internet doesn’t equal seeing me all the time either. They are of course more accurate than something made by a stranger will be, but they’re also only tiny slices of my life. Even my blog is only a tiny slice of my life, you don’t see how I live every day. Larry Arnold as well has written about that one.