Fraya, flap your arms and fly over to my apartment, and the moment you show up here, having done that, you can lecture me all you want about how anything is possible. If you show me that, I'll be willing to believe anything you say. Until then, please don't assume things about situations you don't understand.
Seriously, it's something beyond rude to tell someone that they were starving merely because they'd given up on themselves. You know nothing about me.
I had to fight as hard as I could fight for every inch of movement -- literally every inch, often with outside prompting for each inch, often having to start over -- and did so day in and day out in circumstances you probably can't imagine. I had to manually locate every single body part and tell it where to go, while manually trying to comprehend bits of my environment as they flashed in and out of existence as far as I could tell. This was also while, even if I found a particular body part such as a hand, if I told it to do something, it often went in the exact opposite direction, totally outside of my volition. Sometimes I lost any complex comprehension of my environment for hours at a time, sometimes I lost any and all voluntary movement for hours at a time. Even keeping the idea in my head of such "simple" things as "food," "water," and "bathroom" was very hard work, a full-time and all-day job, and I had signs posted all over the house -- that more than half the time I was utterly incapable of reading, because they just looked like random visual patterns and wouldn't formulate themselves into words -- telling me about them. Even when I got elements of the movements right, my body totally jumbled the sequence of events, which meant that I'd do things like pick up towels and put them on the stove and turn it on, or run outside and pee in the front yard, or take off my shirt and stick it in the fridge, or leave pots full of water scattered around the house, and food in the trashcan.
By the time I finally got services, my house was literally several feet deep in trash and the initial woman they sent to help out around the house had to call out someone with more training in sanitation just to clean it.
If it makes you feel better about the world, you can try, try really hard even, to convince yourself that I just wasn't trying hard enough, hadn't put my mind to things, etc. In fact, I was using every bit of energy and ingenuity I had to get through the day and either eat food, drink water, or use the toilet. (Usually not enough of any of those, and rarely more than one of them, in a day.)
The people at the "support group" either echoed the idea I was already trying with the signs (as in, this was tried, this wasn't working), or proposed that I "just move" in ways that my body flat-out refused to move, or proposed ideas that involved sequencing steps in my head at least as complicated as the steps I was already trying unsuccessfully to sequence. Meanwhile, every time I went to the support group, that meant a large chunk of one day, possibly the entire day, and part of the next day, was expended on trying to move and comprehend things there, rather than move and comprehend things at home.
You see, unlike some people (or unlike what they imagine, anyway), my brain has very definite limits. Past that point, it simply refuses to do anything more. My body goes rigid, or limp, or half-rigid and half-limp. Or else, my surroundings go totally blank, or else I see patterns of things but not what the actual objects and such are. Or else, I can't comprehend even the simplest of abstractions, and only experience what is in front of me with no way of reflecting on it until later. Or else, my hand just slams into my head over and over and over until I pass out.
My entire life is a constant and sustained effort to piece comprehension, movement, and thought together in a semblance of something vaguely functional. The way that I do this best -- in the terms the rest of the world will understand, anyway -- is in writing. All bets are off on everything else.
At any rate, I'm glad the conference I went to recently was not full of people with your attitude. It was full of people who, like me, put a ton of effort into our lives, but the results are different.
Some people there are starting to type better, it takes all the effort they can use just to move their fingers across a keyboard. And some work very hard to voice their thoughts after they type them. I dare you to tell one of them they're not trying hard enough if they put in all that effort and still can't dress themselves or cook a meal. Actually, I don't, because that wouldn't be a very nice (or accurate) thing to say.
I put a lot of effort there into things like not banging my head, and into comprehending and responding to my surroundings on a pretty basic level. Sometimes, even while concentrating absolutely as hard as I could on walking, for instance, what would happen was I'd lose touch with where I was walking to or even the idea of anything abstract like "walking to a place," and run over and run in circles around a pattern on the rug.
I work really hard to walk across a room and get where I'm going, and sometimes actually manage it. It took me years to be able to form a walking-path around my apartment so that I could walk around it in a circle, then I had trouble getting off that circle to go into the kitchen or bathroom. I spent most of my day in that apartment, even with services, sitting in one spot, because whatever my effort was, going from a sitting to a standing position, and crossing lines that were on the floor (that I could not remove because of the apartment complex's policy on renovations), was just not going to happen most of the time. Shortly before I finally moved out of that apartment, I became so severely dehydrated that my blood pressure dropped to something around (probably below, as it was impossible to get up and measure it at its lowest) 80/40, because no amount of effort let me drink water regularly without assistance (and believe me, I was putting in the effort).
But I shouldn't have to say any of this in order for you to believe me. You should grasp that when a person states they know their limits, they might actually have a fair clue about their limits, maybe a fair bit of a better clue than you do.
Someone once told me that there's nothing worse in learning to do something, than someone who's just enough better than you at doing that thing that huge amounts of effort make them able to do it. Because they'll assume that if you put in huge amounts of effort, you could do it. And they'll totally miss the accomplishments you do make, because they're too focused on what you're not doing, and they're not noticing what you are managing to do with all that effort because they're assuming that if the results don't exist, the effort doesn't exist.
It's like someone said recently, elsewhere. Some people are built for running. Some people are very much not. But a person who's mostly not built for running who trains at running, is going to be better than a total couch potato who's built for running. But if the two trained equally well (or equally poorly), the person built for running is going to always do better.
Here's a quote from a guy who has more difficulty with these things than I do, but not as much more as you might think:
Nick Pentzell wrote:
Most of you live in bodies that do what your brain tells them to do. I don't. I command. I ask. I wheedle. I plead and sometimes my body responds, but sometimes it doesn't or it makes clumsy, ill-directed attempts to do my bidding. I send out directions as if they were the lost and windblown letters of an inept skywriter, and I take in information all at once, like a hand calculator trying to add, subtract, multiply and divide all at once while computing Einstein's Theory of Relativity. My circuits often fry in overload.
That is an amazingly descriptive way of talking about what I have to do in my head to get perception and movement and thought and everything to coincide in most areas, and my experiences aren't that far off from Nick's. That overload he talks about means that as long as I'm continuing to try to function, my capacities drop off sharply and take a total nosedive. That is what hitting limits means to me. They're not some abstract thing to be transcended that exist only in my mind, they're that brick wall I bash into when trying to do such everyday things as comprehend my environment in certain respects. There are some things I'm very good at (such as writing), but even those only happen some of the time.
I've worked incredibly hard to get where I'm at, it doesn't mean I can get everywhere every other person is at. Maybe in 30 years I'll be able to cook or something, but for someone who was barely starting to understand some basic aspects of my environment (such as "what pain is", "what communication is for", "how to reliably recognize and move my body", "how to attach words to thoughts", and "how to resolve a bunch of confusing information into things like objects") at the age when you seem to think I was just "limiting myself" somehow by not magically figuring out how to cook in the meantime, I was doing pretty darn well for myself. (And those are things I still forget and have to relearn regularly in many cases.) But, pretty darn well for me, still entailed starvation any way you sliced it. I was in fact defying every single low expectation of what my life was supposed to be like and then some, but someone judging by the impossible standards of cooking, housekeeping, and toileting and so forth, would not have noticed I was doing well. (As you haven't noticed, because you've assumed I was starting at a much more advanced level in these areas.)
I'm also pretty slow at picking up on a limit, so often I'd believe I could do something, and screw it up several times, bash into various limits (including at times back-to-back seizures that scared the crap out of the people around me in terms of safety), repeat this until someone finally pointed out to me that this was way outside my capacity. I had a self-image similar to a woman in an autobiography I read who believed that the reason she couldn't walk as a kid was because she just wasn't trying hard enough and that if she really tried hard enough she'd suddenly walk and shock everyone. (She had spinal muscular atrophy and could never walk a single step.) She got that kind of self-image by listening to physical therapists who sounded a lot like you. At any rate, I honestly believed I could do a lot of things that were so far outside my actual capacity as to be laughable, and I tried doing those things to the point of literal physical collapse.
So, yes, please walk up to me when I can't remember what a "person" is, let alone what the "words" are that are coming out of their mouth (and probably can't tell that these water-like noises of "words" are coming out of that bizarre moving thing called "mouth", for that matter), and can't move this "body" thing that I don't even realize is attached to something called "me", and explain to me again why I should be able to do a thing called "cook" to something called a "meal" with something called "food" in multiple steps, or I'm just not doing something called "trying" hard enough, and after all my total incomprehension of you and non-response to you is just created by my mind somehow. It should prove interesting. But first you'll have to flap your arms and fly to my apartment, if you really want me to believe you have no limits.
Seriously, if everything were as you say, then all autistic people would be so-called "high-functioning" and so forth. (I don't believe in the label as meaningful, but boy is it tempting sometimes when confronted with this level of ignorance about the amount some people have to work to put together just the basic bare elements of movement and perception.)
_________________
"In my world it's a place of patterns and feel. In my world it's a haven for what is real. It's my world, nobody can steal it, but people like me, we live in the shadows." -Donna Williams
18 Sep 2006, 11:08 am
