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10:35am January 18, 2013

I keep censoring my own body awareness and don’t know how to stop.

How the hell do I learn to be fully honest with myself or other people about what my body can’t do, when I have been trained since childhood to look out for what other people will think, almost to the point of paranoia? Not just around disability but around all kinds of stupid things I was supposed to keep secret for the sake of the family, when nobody gave a shit about what my family did anyway. But I was taught this terror that the world would end if people thought badly of me or us for any of a zillion reasons. Disability only one.

I’m still trying to write more about this but it’s mostly on my iPad, which isn’t convenient for me to use right now. I mean some people think very badly of me and the world hasn’t ended yet, but I’m still rather terrified of what would happen if I didn’t hold things back. It makes no sense. I’ve been holding things back for years to the point it almost kills me every few years, and it never stopped anyone from accusing me of faking it, so why should telling the full truth be any worse? But I could name tons of things I either downplayed or waited a long time to announce.

Worst, all the pretending things are better has convinced me things aren’t really that bad, even when it’s clear they are, and then telling the full truth feels like it’s exaggerating at minimum, and then I feel like people are right about me, and it becomes a twisted tangled mess. I’ve got so many mechanisms for hiding disability from myself I don’t fully understand how they work. I only know that the other day when I tried to write exactly how my body was feeling, I kept shaking, and crying, and gave up eventually, only to find it was worse than I thought.

But I have to untangle this mess or I will quit getting lucky and it will eventually kill me. All because of a bunch of crap I learned from my family then applied to myself and have gotten so used to that I couldn’t even see the gears turning without other people repeatedly pointing it out to me. And now I have to dismantle it, even though I can barely see how it all fits together. I have to stop believing that the truth is an exaggeration or a lie, and that a severely downplayed or absent version of reality is what’s real.

This is a really good example of how if you tell yourself stories you can’t see how things are. One thing that keeps me from perceiving what is really happening to my body is a running tape in my head that says “Move along, there’s nothing here to perceive, and if any reality leaks through, it’s stuff you made up or imagined.” Except that imaginary stuff wouldn’t show on x-rays and blood work and ultrasound and CT scans and other things like that, the way a lot of my conditions do. And so many other things over the years. So I know intellectually it’s real. My body is frequently screaming at me to listen to it or die. It’s emotionally that I perceive it as unreal or not as real as it is. And it’s emotionally that people have learned to exploit these fears. Remove the fear and there’s nothing to exploit. But how?

I also know I’m far from the only disabled person who’s learned these messed up lessons, especially people disabled since childhood I suspect because there’s ample time to absorb it at a vulnerable age.

And still I can’t make myself write down how I feel physically. The whole thing, uncensored. Can’t do it. Even though I know my censored accounts haven’t accomplished anything.