It’s Friday. I don’t have a lot of time to fritter away on illogical groupings of stuff in my kitchen. That includes the salt and pepper shakers that sit atop the console of my stove. There are two pepper shakers, and one salt shaker. The other salt shaker is upstairs in the bathroom, where I use it to make my warm (sometimes hot) saltwater wash to tame the sore throats I get at times. To the right of the shakers, there’s a salt cellar which is more ornamental than anything else. I like the color. I like the sheen. To the left of the shakers is the knob of a frying pan lid that I (still) need to re-attach. The pan itself is about 30 years old, and the knob only came off a few months ago, which is a pretty good record. Once upon a time, they made things to last.
Of course, I haven’t had the wherewithal to find the time to re-attach the knob. That takes planning. It also means I have to leave the lid in an out-of-the-way place where the glue can dry. For 24 hours. Augh! The idea of going without my favorite frying pan for 24 hours (possibly longer) fills me with anxiety. I have other pans to cook with… but what if I need that pan, because the others I have don’t do the trick well enough?
Hence the delay with the pan repair. Hence the visually pleasing (to me, anyway) balance of the objects atop my stove console. I have to say, it is a nice way to wake up in the morning, with all those items neatly arranged. It calms me. It soothes me. Having straight objects at a right angle to other things chills me out visually. There’s something decidedly necessary about straight lines for me. I talk about that in my memoir Into the Deep, which I’m publishing with Auptima Press. I also talk about my love-hate relationship with water. I talk about balance — and the lack thereof. I talk about what it’s like to go through a sensory day. An autistic sensory day.
Usually, I just take it for granted that I have all these experiences – the balance issues, the proprioception issues, the sick feeling in the pit of my stomach, tip-toeing across my kitchen, doing things in precisely the same sequence every single day, and all the other ad hoc compensatory things I do, just to keep myself going. But when I write about it and really dig into the details of the experience… it’s pretty amazing, all the tricks I have for keeping myself going. It’s not much fun, most days, but over the years, that’s become just background noise for me.
See, I have an alternative universe where I can absolutely, positively enjoy myself. It’s not an alternative universe, in the sense of it being a fantasy world I make up for myself. Rather, it’s a particular focus I have on very different aspects of the world around me, that sharply diverges from the ideals of allistic / non-autistic folks. It’s a world of ideas, of detecting and analyzing patterns, of creating new things completely from scratch, of getting things done… and having a full range of chosen sensory experiences that cradle me in an envelope of sensory focus that is so pleasant and focusing that none of the “difficult” stuff intrudes. Stimming. Rocking. Clenching a wadded up tissue in my left hand. Running my fingers over the smooth and rough edges of coins in my pocket. Reading and writing for hours at a time. Diving into sequences of numbers like the glorious pool of water they are.
When I’m allowed to follow my own path and create a world around me that actually works for me, all my autistic issues — which the medical industry is bound and determined to eradicate with the help of institutions like MIT and UC Davis (with their ABA and A$ connections) — fade into the background. They don’t go away, but they’re not primary in my life.
Background noise. That’s all it is. It’s not pleasant, and it’s not my first choice, but I can eclipse it all … with my own chosen ways.
I wonder sometimes what it would be like to get through a day without being vexed by neurotypical expectations. I wounder what it would be like to not have to deal with a terrible work environment (that allistic others think is just fine) filled with scents and smells and lights and sights and vibrations and sounds that continuously intrude and interrupt my train of thought. I wonder what it would be like to not have to drive to work in the midst of aggressive, distracted people who think the rules of the road are simply general suggestions. I wonder what it would be like to get enough sleep – to be able to actually sleep when I am tired, rather than when I’ve discharged the last of my duties and am “released from my obligations”. I wonder what it would be like to live in a world that’s about me, not about me fitting myself into the dominant requirements simply because, well, that’s how we do things around here.
Then I start to feel terrible, so I stop thinking about it. I have to function in the world. It’s non-negotiable. I can’t rely on my autism as a way to do away with the unkind world around me. It’s never going to accommodate me. It’s not even going to try. It’s going to keep going in its own way, and it’s going to continue to raise one eyebrow at me, when I protest about something that’s particularly noxious to me, but which none of my non-autistic peers things twice about. The cluelessly unkind world is where I have to work and live and function. Unless and until I can actually support myself as myself at a level well above poverty, I’m not ditching this situation. I have no wish to end up in a state institution in my later years. I have enough trouble articulating my needs in my “high performing” state… let alone how I’ll be when I’m old and feeble and A) nobody’s paying any attention to me, ’cause I’m old, and B) I can’t piece together thoughts properly to make myself understood.
I just can’t go there. I also don’t have to. At least not yet. I can keep functioning moderately well in this world. No matter how much it hurts, no matter how sick I feel, no matter how crushed I am, day in and day out, I can keep on . I know how to suck it up. I know how to buckle down and just deal with it. I was trained, as a kid, to do that. No matter how much it hurt, no matter how awkward and alienating and self-withering life was, I was trained to get on with it. Put my own feelings and sensations aside, focus on the end goal — eyes on the prize — and keep going. I found my joys and bliss along the way, in my own particular fashion. I found who I was, regardless of what the rest of the world thought. And I learned to disregard people who were clearly at a loss about what made me how I am or who I am… more background noise. Those skill have made it possible for me to persist. To endure. To develop and strengthen. To thrive, even.
As challenging as my daily life is, as painful and frustrating and depleting as it is, it still pays the bills. It makes a decent quality of life possible for myself and my partner, and it allows us to do things like keep a roof over our heads, keep the utility bills paid, clothe ourselves, accommodate our individual interests, and actually go on vacation, now and then. Because I put up with the never-ending bullshit, I can regularly eat healthy food that I cook on my own stove in my own house on my own terms. To keep my strength up to deal with the interminable onslaught of ridiculousness and mean-spirited stupidity that seems the rule rather than the exception, these days.
There’s a price for it all. There’s a price for everything.
And as long as I have the pieces of my life in place that bring me comfort — something as simple as a few salt and pepper shakers lined up neatly on my stove console — I’m good.
It’s not perfect, it’s not ideal, but it’ll do.