This is how it happened:
Things weren’t great. I was asked to do night shift at short notice—very short notice, by my standards. A change in my plans, my peaceful evening, dinner with a friend, all down the toilet. I put the phone down and rushed to the bathroom, vomited. Then I spent the next four hours pacing. Nauseated and shaking. Telling myself over and over that this was ridiculous, that I should be able to stop this, that I was a moral failure, a stupid, worthless Autie who just needs to get a grip.
It didn’t work.
If only it had been a shift change next week—at the weekend—a couple of days time. Anything but right now, tonight. I forced myself to eat something. It didn’t help. I paced some more. I tried to watch a film, but the old worry of being late, of forgetting the time, magnified by my anxiety, wouldn’t let me.
I settled to some sewing, checking my watch every three minutes from 7pm.
The shift was a nightmare. I drove there with a part of myself curled up tight, trying not to scream. Full waiting room. Everyone rushing around, noise and demands and the knowledge that I should be able to cope with this I’ve handled it daily for years, but not like this, not called in like this, to a night shift.
Of course I have been called in like this before, and it’s been just as bad.
I try to shut down every bit that I don’t need. Close my vision to just what’s in front of me. Close down the scripts that usually see me smiling at everyone who smiles at me, that enable be to reply ‘fine, and how are you?’, close down all extraneous functions bar those that enable me to ask questions, hear responses, and state facts.
Like this, I can just about cope.
But it has a knock-on effect. The next day, and the day after, my senses are aflame. A sheet of paper—I taste paper, feel its surface, cut myself on its edge, smell its fibrous paperiness, all without ever picking it up. The metal bars on the trollies smooth-shiny, the electrical smell of the computers the fluorescent flicker of the lights, the voices the voices every one demanding attention, every one demanding that I understand, right now, and respond without error, that I instantly know what everyone is feeling, what everyone wants, that I not put a foot wrong because that would be unforgiveable because the one thing I must do, that everyone demands is I must pass as normal, I must be normal, whatever it takes, whatever the cost.
I must pass.
And I get a break, and I call up a picture on the computer. My synaesthesia makes colours soothing, they calm me, settle my breathing. I don’t know how it works, it just does. But I can’t call up the usual pictures, because they’re weird, because a normal person wouldn’t stare at them. So I find the next best thing, a picture of arctic ice, bluegreen and comforting. The arctic continent, the curve of the earth, our spaceship earth, and I start to feel better. The world, the whirling tornado, starts to settle.
The leaves fall to earth and are still.
‘It’s all rubbish,’ you say from behind me.
And you start, both of you. About how global warming isn’t true, how it’s made up, how it doesn’t matter. All the counterfeit truths I’ve read but have never heard anyone actually say.
But—I know the facts, the statistics, the graphs. But everything I say you trample over. You’re enjoying yourselves, smiling as you see my distress grow. You throw in accusations—it’s my fault for driving a car, and you don’t really care what happens, who cares if millions die, and why do I live so far away if I care about it how much carbon do I produce it’s my fault it’s my fault
And I have to try and counter it because it isn’t true and I can’t let something go that’s so important and you’re my friends and I need to know that you don’t really think those things but you’re laughing at me and you can see how upset I am but you still smile
You still smile at my distress.
And you’re blocking my avenue of escape and I’m near to tears and you’re smiling and everyone else is standing there laughing because it’s so funny like at school when they all stood there and laughed and exchanged those special glances that never included me and stared and laughed some more.
Look at the Autie look at the Autie look at the Autie
And I’m in meltdown and everything is disappearing but the voices and the laughter it’s my fault my fault for being born like this, my fault.
Even people I thought were friends will always do this in the end. They see my distress and it’s funny, hilarious, because I’m weird, I don’t quite fit in, even if you can’t quite put your finger on why, you know it’s true, so that makes it all right, that makes everything you do to me all right.
And a gap opens up and all there is is a voice screaming get out get out get out and I grab my bag and I run.
The tears pouring down my face and I find my car and it’s not a haven not a safe place any more I don’t know why, it just isn’t. You’ve taken that away too, and I know that wasn’t part of what you intended—or maybe it was—but it’s gone, anyway.
And I drive home sobbing and too fast and losing sight of the road and I imagine losing control and hitting a tree, a rollover, something, anything that will make this screaming awfulness stop. But I can’t risk anything that will just leave me more disabled, more trapped, more at the mercy of these vicious creatures who call themselves normal.
I drive to my home, my home that is far away because that’s the distance I need, that’s the space I need to be able to cope. That’s the silence, free of traffic, free of leaf blowers and children and dogs barking and all the things I have to get away from if I am to keep my sanity, but I couldn’t tell you that, because that would be weird.
And I get home and I pace and shake and cry. I try to distract myself with the computer, a book, but the shaking takes over and I end up in the corner, rocking like a four-year-old. When I’m forty-two. And I should be able to control this, I really should but there’s nowhere to go with it, no one to run to, no one who gives a damn because it’s just too weird for anyone to have to deal with.
I go to bed and get up again and go back to the corner and catch myself dozing and go back to bed and shake and doze and watch the clock—two—three—four—five—six—seven o’clock and I can get up.
And I have to go back to work and I’m nauseated and the damn shaking just won’t stop, except I’m not actually shaking I just feel like I’m shaking. Strange, but at least no one will notice. But I don’t want to go back, I don’t want to face people because I can’t trust any of them. I trusted the other two; after three years I was just starting to think it might be safe, think I might be able to have a friend, but I was wrong. I don’t understand why someone behaves like a friend and then does that, that cruelty—how could distressing someone ever be more rewarding than being friends with them? Maybe I got it wrong, and they never considered me worth kindness, it was all a front, easily abandoned for entertainment value. But how did I get it so wrong? Why did I make the same mistake, the one I’ve made over and over, again?
Why was I such a fool as to trust someone?
So I stagger out to the car and blank my mind and drive to work and try not to think what lies in wait.
My body feels grief-stricken.
You know, when you’ve lost someone you loved desperately, and a few days afterward, you get a few moments of distraction, and you forget to be sad? But then all of a sudden you realise your body feels wrong. Hypersensitive, shaky, weak. And for a millisecond you think what the— and then you remember the loss, the sadness.
My body is grieving, but no one has died. I run my fingers along my arm and it’s a series of electric shocks. Turn my head suddenly and it’s a glitter of fireworks. My legs shake. I want to sleep. I feel sick. My heart rate is pushing one hundred and forty.
I take a deep breath and go to work.
The onslaught is incredible. Noise and smells and lights and movement. I can’t smile, can’t be cheerful. Every atom of my existence is turned to keeping control, to blocking out the assault.
You look terrible, someone says. Are you all right?
I’m tired, I say. Didn’t sleep last night.
I didn’t sleep because someone I thought was a friend decided to play Poke the Autie, and it hurt. It hurt so much. And I can’t cope. And it makes me hypersensitive to light, to sound, to touch, to taste, to smell. It feels as though every cell in my head is firing a million times a second, an avalanche of sensation that I have to somehow process and deal with and carry on as if nothing untoward is happening. Epilepsy of the senses. It’s outside your experience; you cannot begin to grasp how bad it is. And if I could explain it to you, if I could tell you what it’s like to be me without reducing myself in your eyes, without being attention-seeking, without having a lack of moral fibre, without you believing I can control it by just trying harder, then I would.
But I can’t.
Because I know you will think those things, no matter how you protest otherwise. You won’t see someone who has climbed their own personal Everest to get this far. You will look at me with all the prejudgements you have been taught. I will suddenly be different, disabled, not-quite-human. I will be weak, weird, acopic.
And I really should pack up and move on again to somewhere where no one knows me, where it will be a couple of years before people start thinking no, actually, she really is weird. Somewhere that they don’t remember this, and that, and oh, that too, and add them all up to make me the weirdo it’s okay to laugh at—look, you can make her cry just by changing the roster—because really, it would all be fine if I’d just make more effort.
And I would like to have friends but I have no idea how I figure out who to trust. Is it something about being normal that makes playing Poke the Autie so utterly irresistible?
I was once deliberately unkind to a friend at primary school. I’d seen other children do it, so I thought I’d try it. For a moment I felt powerful, as I saw her face fall. Then I felt sick. I didn’t want that power, to make someone feel bad. I felt so guilty. I still do. I can replay the scene in my head and I hate myself for doing that cruel thing, when I was eight years old. So why don’t you feel sick, when you do these things? Why don’t you feel guilty?
It will take days for this to settle. I won’t be able to do any of the things I enjoy: writing, craft, singing. This is a bad one, but other things cause days like this. Social events, conferences, places where I have to be intensely social, places where I have to perform.
Imagine having someone who understood. Someone who could interpret from that land of normality. Someone who says no, today will be quiet, today I will take on the stressful bits so you can concentrate on being you, because being you is okay, even if it means sitting in the corner sometimes, even if it means not saying a word all day. Someone who understands space and silence, someone who calls out people who play Poke the Autie, someone who understands that sometimes it’s just too damn much for anyone to handle.
Imagine that someone cared.