safe

I did not realize it until I was in my early forties, but I do not enjoy fireworks. There is nothing about the experience that is pleasant to me in any way. While others may delight in the celebratory aspect and the beautiful, powerful displays, I am in my own private hell for the duration of the experience.

The only thing I do like about it is that it’s in July, which is the only month of the year during which I can be guaranteed not to have to bring a wrap or jacket or something wherever I go to stay warm. (Other than in grocery stores, jesus, why are they always so damned cold?)

The rest of the ordeal seems perfectly designed to be as unpleasant for an autistic person as possible. You are surrounded by people on all sides, and in order to get that “coveted” spot you have to have gotten there at least a couple of hours ahead of time, and that’s two-plus hours of small talk and “enjoying one another’s company,” when I’m only up for about an hour and a half under the best of circumstances.

When the fireworks finally start, by which point I’m thoroughly frazzled, the noise is horrific. Even from a mile away, it is far too loud. Up close, it’s unbearable, even with my ears plugged. It feels as though my whole body is going to break apart. And, there are a limited number of types of rockets. Once I’ve seen them all, I’m done, let’s get out of here before I grind my teeth to powder. Unfortunately, the show is usually only about halfway over at that point.

The grand finale obliterates all previous definitions of overwhelming. It’s too long, there are too many at once, and the sound is intolerable.

Once I’ve sat (or stood, worse) through this torment, and am mentally and physically exhausted, I am subjected to the sublime pleasure of being crammed inside a mass of slow-moving, sweaty, overly-scented humanity for another half hour (or more) as we make our way out. And heaven forbid I have to use the facilities, because going into one of those overheated, germ-infested, plastic torture chambers even for a few seconds is another situation I’d prefer to avoid at all costs, no matter if it means a trip to the emergency room for a ruptured bladder.

This year, I’m living close enough to downtown that I could watch the fireworks from my front deck. Which I did. Suddenly stripped of their unpleasant trappings, I was able to enjoy them in way I hadn’t since I was a child. They were so far away that some of the lower ones were blocked by trees, and I still had to plug my ears for the finale, but the fact that I could go back into my apartment at any time more than made up for it.

Escape. I could escape. I wasn’t stuck there as part of a group, a half a mile or more from the car, surrounded on all sides by other people as far as I could see.

When people talk about the experiences of those of us on the spectrum, it tends to be about the experience itself. The movie. The restaurant. The soccer game. School. It can sometimes fail to take into account context. Context, safety, security, these are critical. To me, they are far more important than the event itself.

I will join you for this or that, but I have to drive myself. I will take part in something, but only if I’m able to leave early if I have to. I can go to a movie but I have to have an empty seat beside me, and a blanket because I always get cold. I can go to a restaurant but there can’t be a TV in my line of sight. I can go to my niece’s soccer game but I need to know what to bring (Are there bleachers? Do I need a chair or blanket? Do I need to bring my own water?), how long it is, how far I will have to walk. Some of the most stressful things I’ve participated in were stressful because of the uncertainty; I didn’t know what was expected of me, and I didn’t know what I would do if I was overwhelmed.

I have to be able to prepare myself. Even with medication, for which I am extraordinarily thankful, my anxiety remains on a hair trigger. I have found, though, that I can do just about anything as long as I know what it is going to be like beforehand.

This is useful information, I think, for parents of kids like me. I wasn’t a huge fan of new restaurants as a kid because I wasn’t always sure there would be something there I could eat. When we went out for breakfast, my mom had to keep a bottle of genuine maple syrup in her purse because I refused to put the fake stuff on my pancakes. Whenever I order a sundae, I have to be able to stipulate that they don’t put whipped cream on it. The idea that I might have to interact with the whipped cream in any fashion at all, even to remove it, remains distasteful, to this day.

All of these little, seemingly minor, unimportant things, are of huge importance to me. My life is very much like having to walk too close to a wall with spikes sticking out of it, all the time. If I feel like I’m penned in too close to that wall, that I don’t have room to avoid the spikes, I completely lose sight of whatever it is I’m supposed to be doing. All I can see are the sharp edges coming at me.

Am I better than I was when I was younger at walking through these experiences? Of course. Sometimes, I can even get myself to a place where I understand that the spikes aren’t real.

But not always. So best thing to do is to make sure I have room to step away. This is what I’ve always needed, a little extra room, a little extra understanding. That’s what many of us ASD kids need, I think, to know we don’t have to watch this thing, touch this thing, eat this thing, if we feel like we can’t. It must seem strange to neurotypicals in a way; probably, most people take that for granted. Of course you don’t have to touch something you don’t want to touch! Why would you? But I feel so out of my depth in social situations that often, I don’t understand that it’s OK to say no.

A few years back, I was in a Palestrina choir that would pair up with the choir from an Episcopal church for Easter. Choir members were expected to take communion wafers and wine with the congregation. The idea of putting my mouth on that same wine cup that had been sipped from by dozens of other people made my stomach crumple into knots. I simply crossed my hands and put them up to block my face, as I had been told that this was the appropriate way to refuse it.

The pastor started bumping the cup against my hands, not understanding.

A soprano sitting next me hissed, not quietly, “She doesn’t want it,” and the pastor moved on.

I could have kissed her.

But not on the mouth.

About SeeMorrigan

I'm a woman in her early forties who was beset in October of 2013 with a nerve entrapment due to an abnormal conformation of my shoulder blades. I was in constant, unrelieved pain for fifteen months, until, after countless misdiagnoses and mistreatments, a surgeon correctly diagnosed the issue and performed two surgeries to remove pieces of my shoulder blades. Along the way, I also discovered I am high-functioning autistic. I started this blog in March of 2014 as a way to try to process what was happening to me. It is my hope that by sharing it with you, we can both gain something, or at least learn something, from my experience.
This entry was posted in Book Two - Mind, Setting 1 and tagged , , , , . Bookmark the permalink.

One Response to safe

  1. christellsit says:

    Okay, this is your best post yet. I can feel it. And the last sentence – brilliant, just brilliant.

    Like

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