Pacing

On Friday I shut down at work. When my boss saw me, he asked how bad it was, and if I needed to go home. I did need to go home. So – somehow! – I said yes.

It was a very strange moment. I’ve spent the past year or two trying to set up safety mechanisms to cater for happenings just like this. Talking about accommodations. Making creative use of flexitime. Skirting around the issue of “bad days”, delicately, never quite committing myself to describing what it looks like when I am incapable, completely, of existing in company. They’ve seen the irritability, the frustration when I can’t find words, but they’ve never seen the end point. How I can stare at a plate of food and not make the connection to actually eat. When I just switch off and fade out, staring into space. How my system shuts off everything, refusing to process what I see or hear without conscious effort. How everything is an instinctive response. Decision-making is impossible. Something I can no longer force.

Until recently, I would have said no. I would have felt guilty, berated myself for what I am and the decisions that led to this point. I would have sat at my desk all afternoon, struggling through the simplest of tasks. That was the instinct: to hide. A deeply held belief that my identity is shameful, that I do not deserve supports, even those I invested and risked so much to build. But this time, I said yes.

I’ve changed.

Coming out of those places, of shutdowns and meltdowns and overloads, I can’t help but overthink. It’s what drives me to write. Although I am rarely asked, I want to find the words, to paint a picture for people who don’t share these experiences. I want them to know what it’s like for me, why I disappear from the world. I wanted to explore, for myself, why I no longer felt guilty for the sorts of mistakes that led to this shutdown.

The thing is, this week was challenging. A lot of non-routine things were going to happen. The plan was complex in places; the schedule was busy. No red flags jumped out at me, but several – if I had been looking – were distinctly orange. And I was tired going in. Perhaps I should have seen it.

Let’s take a look at those flags. A long evening straight from work: 2 events in a row, buffered by dinner in an unfamiliar pub. Cycling out in unexpected, driving rain. A 9 o’clock meeting the next day. Two. Doable, I thought. Then a nagging headache all morning, artificial meeting room lights too bright to countenance; the sweet, soft relief of Anadin at lunch time, and the feel of my body relaxing, losing tension in quantities I hadn’t recognised I’d carried. Every warning light suddenly flashing. Looking at my schedule for the next morning. Another 9am. And a 10, and an 11. And somewhere to be at 12. Maybe I should reschedule the 10 o’clock. But I had the evening free. I’d be OK.

And that’s where I failed. Because after several weeks of things going right, I’d forgotten my limits. I’d forgotten how too many things, even simple things, can make me fall over so completely. I’d forgotten that one evening to myself, given where I was, wouldn’t be enough to set me up for the next day.

Those orange flags weren’t red. For most people, they probably wouldn’t even be orange. Three meetings in a morning probably wouldn’t even raise a flag in most people’s eyes. But for me, that’s a challenge. And in combination with too many other challenges, that’s a red flag. The guilt isn’t that I fell down. The guilt is that I didn’t act to avert things when I had the chance. The guilt is that I got over-confident. It was going to be OK. I’d been doing fine. But I’m still autistic.

For most people, there is slack in the schedule. A bad day is recoverable. But for me, a week at work can be like running a race.

Picture a distance: the furthest you can run. (Or walk. Or, if you can’t walk, I expect you won’t need this analogy to understand.) Picture yourself at the start of the distance, taking a breath. You’re prepared. You know your pace. You know what you can take. You’ll stride out long, slow, easy. If there’s a hill, you’ll slow down. But you’ll keep going.

It takes some mental effort, pacing that race. You want to finish in a good time. But at the same time, you know exactly how hard you can push. You know if you go too hard, you’ll run out too early. You’ve done it in training, when you were still exploring your limits. You’ve felt that burning in your legs, the weakness, the whole-body exhaustion, wanting nothing more than to drop and curl up on the pavement. You’ve walked home in your running kit, shivering as the sweat cools off your back. Avoiding eye contact with anyone you pass. Wondering what they’re thinking of you. But today is the day you’ve been waiting for. And you’re going to get it right.

Imagine each week starting like that race. You know you can do the distance. You feel confident: in control. But you have to be prepared. You have to carb-load. You have to get enough sleep the night before. And if the route changes at the last minute – a diversion, a longer or steeper road – there’s always the risk that you’ll flake out before the end.

Anyone can screw up a race. You feel bad. It’s one stand-out event, you’ve prepared forever, and you let yourself down. It’s your own fault.

But there’s no need for guilt. Because you pushed yourself. You tried. You misjudged. There was shame; but there was also understanding. It taught you something. You’ll try again next time.

Every time I fall, I feel guilt. But every time I fail, I remind myself that everybody fails. Everybody makes mistakes. I’ll try again next week. And I’ll make it right.

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