A Soupçon of Delight

As we all know, I am a slave to lists.

I list everything I need to do, both personally (laundry, call my aunt) and professionally (create a new web page, send some emails). Rather than check them off as I complete them (because that’s hard to see at a glance), I highlight each completed task. But remember – this is me. I can’t just use whatever highlighter comes to hand.

First, I buy a multipack of highlighters. I prefer the liquid kind with a little window that lets you see when it’s running out. The pack has to have between five and eight colors – four or less is too few, nine or more is too many. Next, each one is assigned a number. There is no logic to this – sometimes it’s whatever order they came in the package, sometimes it’s in rainbow order, most recently I had my mother close her eyes and pick them out of my hands. The number is recorded on the cap where it is easily visible. Each Monday, I exchange the current highlighter for the next one.

Once they’ve been assigned numbers, the highlighters become one consolidated thing, like a jigsaw puzzle. And you know what happens once you lose a piece of a jigsaw puzzle, don’t you?

Maybe for you, it’s not that big a deal. You just know that Monet’s Water Lilies has a single blue and green piece missing from the upper left corner. You know it’s probably under the couch, but it’s just not worth the hassle to move the couch, look between the cushions, whatever. It doesn’t bother you. But you are not I.

For me, once a puzzle is missing a piece, it’s garbage. It’s as though a single piece out of the 1500 holds the interpretive key to the whole. It is damaged beyond saving. This is also at the heart of why I hate the puzzle piece image for autism – to me it implies brokenness, uselessness. I’m not missing anything – I have fucking superpowers compared to a lot of people.

Back to the highlighters. Once one of the set is used up, lost, or damaged, the whole set goes. You don’t need to tell me it’s wasteful. You don’t need to tell me it’s illogical. I know. But knowing is different than feeling, isn’t it?

So, six weeks ago, when the purple highlighter (#6 in the current set) went missing, I went into a bit of a panic. I cleaned my entire office. I turned my bedroom upside down. I looked in every disgusting nook and cranny of my car. I grilled my family, who all know better than to casually borrow something as precious as my highlighters. This particular set only has six, so I have been telling myself for three weeks that it’s okay if I don’t find it. I can just pretend this set only had five, and go back to the first color.

It’s funny how we lie to ourselves.

I had put “get new highlighters” on my list last week, sure that Mr. Purple was gone forever. Then I got out my weekend bag to take a trip to the Highland Games. As I was putting my list book, my other notebook, the loose sheets of paper on which I make notes, two pens just in case one runs out, two extra pen cartridges just in case the two pens both run out (even I am looking at this and rolling my eyes)…I found the purple pen. Six weeks ago, my husband and I had done a little writing/piping retreat, so of course I had taken it and forgotten it in the suitcase.

So now I’m literally dancing around in the kitchen, laughing and celebrating the homecoming of Mr. Purple. True, he was technically in the house the entire time, but still, it was 42 long days separated from his family, and we were all mourning him. So, please join me, Ms. Green, Mr. Yellow, Missus Blue, Mx. Orange, and Señor Pink in welcoming our friend home. Life wouldn’t have been the same without Mr. Purple.

A Year in My Head

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.

Tomorrow Is Yesterday In a Different Place

One of the many things I lost in the fire was all my archery gear. I had a beautiful one-piece recurve bow and dozens of arrows, a left-handed hip quiver, a couple of arm guards – all the stuff. And then I didn’t.

I’ve been part of the local archery club for a couple of years, but first the coronavirus hit and nobody could use the indoor or outdoor ranges, then I lost my house and all my stuff and was relocated too far from the range to make using it practical. In the time since I last saw them, I’ve lost over 100 pounds, and when I went to replace my bow, quiver, arrows, etc., nobody at the archery shop I’ve been frequenting for years recognized me.

I’ve seen lots of episodes of different television shows about exactly that scenario. A person walks into a place they’ve been in many times, and the people there don’t recognize them. On television, the person runs around screaming at everyone they meet until they wake up, or the devil shows up and tells them they’re in hell, or until they go running out of the shot, driven insane by the knowledge that nobody knows them.

In real life, I mentioned that I’d been in various archery leagues and done well. That I am an archery club member. That I was on a team with the club president and his family, that I had just been to the house of the club treasurer. That I’d taken third in the last league I participated in at the archery range all of us frequented.

Nothing. Not a glimmer of recognition.

Then I started thinking about other places I used to go a lot, and other people I thought I knew, and wondering whether they’d recognize me. When I had an office downtown, I would walk down the street from my office and run into half a dozen people I knew. Would any of them recognize me?

That feeling of disorientation I feel is battling with my deep need and desire to be left alone. Maybe this is fulfilling my dream of being able to walk through the world invisibly. Which is better? To be completely visible, but no one recognizes you, or to be invisible?

Apple Watch Out – It’s a Trap!

Let’s talk about my day. I’ve got a lot of tasks I need to get done every day, and most of them require sitting for stretches of time. Editing a half hour of audio can take up to three hours. Writing 5000 words can take all day. And then there’s writing software requirements documentation, which is its own little hell. To make things worse, if someone or something interrupts me, it takes me some time to get back into the flow of things, because switching contexts is expensive.

I already carry around a ton of guilt about what I’m doing versus what I’m not doing. If I’m sitting down writing, I’m freaking out that I’m not exercising, or doing software requirements, or editing a podcast. If I’m out exercising, I’m thinking about the work sitting waiting for me at home. And if I’m doing any of those things, I’m not doing my own writing, and I feel like a failure pretty much every second of every day for that.

And Apple Watch is right there to tell me all about it. But not just that – it also tells me when there’s someone at my front door, when my mother opens her garage door 70 miles away, when anyone texts me, when someone posts something to the work Slack account, when my Amazon package has shipped, when my Amazon package has been delivered, and, at 10 minutes to the hour every hour, that I should stand up and walk around.

It wasn’t that bad when I first got it, but the more companies plug themselves into my devices, the more everyone is constantly trying to get my attention, and it’s not like I can manufacture any more of that. It’s starting to affect my mental health. I realized that when I’m physically ill, I tend not to put my watch on because I want to be able to sleep all day without having it buzz me every hour to tell me to walk around. When I’m deep into writing, I take it off because I don’t want to have to respond to people’s texts or phone calls.

What if I just took it off and never put it back on? What happens when the nonstop notifications stop? I don’t need my watch to tell me when to exercise. I don’t need it to tell me what tasks I have to do. And if Apple Pay is that important to me, I still have it on my phone. I didn’t realize how much of my mind that thing was taking up, because it didn’t happen all at once. But the nice thing is that by just taking the stupid thing off, I get it back all at once.

Removing the Frog’s Nervous System

My life recently has been defined by three things: losing about 100 pounds, losing everything I owned in a fire, and discovering that I’m on the autism spectrum.

  • Thinking about any aspect of my life, I bump up against those three things. Perhaps only two of those things at a time, but they’re always there.
  • How I react to my friends’ rallying around me after the fire: Do they love me because I’m quirky, or because I’m more attractive now that I’m no longer fat?
  • How I replace clothing since I can’t go into a store and try things on: Sure, I’m a “medium,” but what size is that in vintage clothing? At Banana Republic? At Target? And where do I find clothes that suit my very particular taste?
  • How I interact with strangers, who are the lion’s share of my interactions since the fire: Are they being kind, courteous, solicitous because they find me attractive, or because of the huge effort I put into seeming normal?

Since the fire, I’ve been thinking about my life pre-weight loss, pre-diagnosis, pre-fire. I know I’m not the only person in the world who feels that 2020 has drawn a line across my life, which was one thing before, and a very different thing after. What part of that earlier me is still there? How could things have been different?

Without the fire, I don’t think I would ever have had a reason to examine my life in the detail I have in the past three and a half months (as of this writing, it’s been 105 days since we lost our house). On the other hand, I have always been self-reflective, second guessing my every thought word and deed almost before they are completed.

I read a book where two characters were discussing two separate, but intertwined things, and one character expressed the desire to separate them. The other character said that separating them would be like removing the nervous system from a frog intact, and without killing the frog. It can’t be done, and it would be painful and disturbing to try.

I’m driven mad by how unscientific an experiment my life is. I can’t isolate any one of the above events and observe the public reaction from that thing in isolation, and if I were to hand everyone I interacted with a questionnaire that said things like “Which of the following factors was most influential in your interaction?” people would tell me they had the plague as an excuse to never interact with me. Sadly, I’m not smooth enough to figure out how to subtly ask stuff like this without the other person knowing that’s what I’m getting at.

We are each an amalgam. Not just emotionally – composed of every experience we’ve had, sensation we’ve felt, emotion we’ve endured – but physically. Every human being is an amalgam of human bits and a unique group of bacteria and various symbionts that live in our blood and guts, making each person a literal aggregate. So, it looks like going forward, I can’t separate any of the large defining events of 2020 in my experience.

I came into 2020 as an optimistic, fat little tadpole. I go out as a lean, muscular, and quite whole frog.

Not Handicapped, Not Disabled, Not Mentally Ill

A few days ago, in the midst of talking about the effects of the fire on my life, I slipped in the news that I now have a label – “autistic.” I’ve had the label “high functioning” forever, but there was nothing after that modifier to explain why functioning well was in any way exceptional. And now there is.

Let’s back up a bit. Ever since I was a child, my mother has joked that I am her “crippled” child, because I’m left-handed. “Poor baby, you can’t do it because you’re using the wrong hand,” she’d say when I was struggling with something like using a can opener or pair of scissors. I knew she was joking. I knew she didn’t really think of me as disabled, but it left me with an important piece of information.

Differences are something to be mocked and pitied.

It doesn’t matter how one sees oneself. If others see you as being less than them, they pity you. And any difference that’s not commercially exploitable (extraordinary good looks, athletic ability, brilliance resulting in salable products) makes you less than.

I’ve had to adapt, adjust, and mask all my life, and for most of my life, it didn’t help. When I was a child, my intolerance for enormous family functions, for overstimulating environments, for physical discomfort was seen as my being willful, and I was lectured, yelled at, sent to my room. As an adolescent, I was ostracized, humiliated, and ridiculed. As an adult, I have been passed over for promotion, given poor job performance reviews (not for the quality of my work, but for the quality of my social interaction), and been largely discounted.

When I was a kid, there was no such thing as autism.

There were disruptive kids, angry kids, bored kids. They were behavioral problems that kids, with proper guidance and discipline, would grow out of. The lack of any kind of clinical label meant that nobody felt sorry for us or thought we needed any kind of special consideration apart from detention.

This morning, my sister sent me this article, and when I read the title, I immediately felt insulted. Now there’s a label for me that other people use for themselves. I don’t know what to do with that label, because it feels to me like another way of manipulating people. Just as I reject the “victim” label after the fire, I reject the “autistic” label, not because I don’t fit all the criteria, but because I can’t stand the fact that people who didn’t like me or didn’t understand me before will suddenly cut me slack because of that label. Because they think that they know something about me now that they didn’t before. And that’s not true.

If you’ve spent any time with me, you know as much about me as there is to know. Any label applied to me – “writer,” “depressed,” “autistic,” – is irrelevant because labels are stereotypes that homogenize everyone to whom they’re applied. I’ve spent years trying to tell people “yes, I’m [insert label here],” only to have to explain that it’s true, despite my not fitting their notion of what a person with that label looks or acts like.

If you have known me for a while, you know that I’m not disabled, handicapped, mentally ill. I’m just me, and I’m just fine, regardless of what label you choose to use for me. And if you feel the need to apply those labels to me, I have a few of my own that I’ll apply to you.