I was looking through my memories on Facebook and found this from a year ago (two weeks after losing my house in a fire):
“…Everyone, to include my psychiatrist, has remarked on how well I’m doing. How together I have things. How resilient I’m being. Here’s what’s going on inside: When things are apocalyptic (my house is gone, the plague is making a resurgence, Trump has largely dismantled our government) the only solace I have is routine. I make lists. I check things off my list. I pick one task at a time, and do the thing. I take meetings where I focus on the task at hand, because that keeps me from dwelling on things that are out of my control – when we’ll be able to even go and look through the wreckage, what might be left, etc. If I’m not working, that’s all I have – thinking about my nonexistent house.
I am overstimulated to the point of collapse. Everyone eats too loudly. Too much light in my mother’s spare bedroom. The dining room table is too high (why does my tiny little mother have a bar-height dining table??). There isn’t anyplace I can sit comfortably and work. Those things are hard, but moaning about it won’t change them – they are my reality for the next few months. I’m hoping that by then, we’ll have worked out a lot of the kinks and I can feel productive….”
That was the day my therapist basically said to me “of course you’re on the spectrum – what did you think?” For a year now, I have been evaluating things in a very different light. At the time I wrote that, I felt like a raw nerve. When I get stressed, life looks like a fight on the old Batman tv show.
Everything is too bright, too loud, too fast. When I’m stressed, I feel everything in my skin in a way I’ve never tried to describe, but I always think of it as being “negatively charged.” Not only do I not want anything to touch my skin because it’s so hypersensitive that any touch is painful, but even sounds, bright lights, and unpleasant smells create a physical sensation that, because I cannot properly express exactly what’s wrong, makes me go directly to crying. It’s like being an infant in an uncomfortable diaper – I am inconsolable, but unable to communicate the source of my distress.
Six weeks after losing my house, my husband and I moved into a rental about 30 minutes from our old house. It’s on a quiet street in a wealthy suburb, so the houses are on large lots and everything in our neighborhood is quiet and tidy.
And yet, the feeling of discomfort persists. Every time I leave the house, it’s like I can physically feel the neighbors’ eyes on me, and in my mind, they’re judging me for going out so often. And every time, I have to say to myself “I used to have a [whatever I’m going out for], and I need it!” As though I need their approval to buy a new ladle or laundry basket or lamp. I feel defensive, even though in reality, our neighbors have been nothing but wonderful to us.
This is my constant battle: I don’t want to let anyone down. Ever. In any way. Even when they expect nothing from me. I also am constantly on the edge of a complete breakdown.
I keep that breakdown at bay with lists, spreadsheets, and as much routine as I’m capable of creating (another by-product of my brain – I am unable to create habits of any kind). But every interaction with another person puts a little wobble in the balance I’m trying to create. What did they mean by that? Does that wave mean they want me to talk to them, or can I keep walking? How good of an excuse do I need to get out of going to their party/taking their phone call/helping them with their project?
I am often told that I have everything together, that I am someone that people look up to for my ability to organize. I understand that it is always meant as a compliment, but each bit of praise for my ability to keep myself from exploding in a cloud of anger and despair is another expectation I have to meet. To lose my shit, to fail, to be unable to do something would be to let someone down, and that’s the thing I fear more than anything.
This is what it looks like in my head – an immense mountain made of individual grains of fear, anxiety, depression, and confusion being separated into manageable piles with a pair of tweezers.