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.

Everything Is Ugly

I mentioned in my last post that finding clothing is hard. I’ve always had a distinct sense of style (nearly all of my clothes are black, white, or red; I like close-fitting more than flowy or loose; I like something dramatic like diagonal cuts, metal buttons, or bold prints), so it’s not like I’m going to the store thinking “I would like a new pair of pants. Let’s see what’s on offer.”

Back when I was a size 20/22, there were only a few stores I could shop at – Lane Bryant, Torrid, Universal Standard, Ashley Stewart. When you’re a larger person, finding clothes that fit can be tricky, since fat tends to spread itself unevenly around a body, so each configuration is unique. When I went clothes shopping, it was always a treasure hunt: where in this conglomeration of clothes was something that fit? Once that was narrowed down, it was a matter of choosing the thing I liked most or, more often, the thing I hated least.

Only now that I am an easier-to-fit size do I realize how ugly most clothing is.

Part of that judgment is a hatred of “fast fashion,” mostly sold in stores that cater to younger people who have both a limited budget and a desire to keep up with trends. The fabrics are usually thin and cheap, the construction is shoddy, and the colors are often offensive. Bile green? Really?

At the other end of the spectrum are the higher-end mall clothing stores also targeted at younger people, but in a much higher income bracket. In these stores, the clothes all look alike, change very little from season to season (the waistband gets marginally higher or lower, the leg length or circumference changes a bit, the plaid patterns vary) but the clothes are outrageously priced and the stores surround themselves with a nimbus of fragrance that makes them impossible to approach. The people who shop at those stores tend to conform with the norms of their social set so much that they look like flocks of birds feeding, running, flying in unison.

If one is older, there are other stores at the mall, and most of them carry clothes that remind me of stuff my mother would wear. My mother who’s 80 years old. And has great-grandchildren. Not that my mother has terrible taste, but her clothes tend to run toward the strictly practical. I’m all for a clog or a hiking boot in their place, but they’re not my go-to.

This proliferation of clothes I would never wear is something I didn’t expect back when my options were more limited. It’s like being vegan at a crappy restaurant where your only choice is the french fries and not realizing that all the food sucks.

One of my (many) ex-husbands told me once that I’d be happier if I lowered my standards, but I think he formulated that idea incorrectly. If my standards were already lower, I would probably be happier with the choices I have. The problem is that since I have high standards, lowering them wouldn’t make me happier. It would mean that I’d have more options, plus a lifetime of self loathing from knowing I can do better.

I don’t want that. All I want is the perfect pair of pants. I know it’s out there.

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.

Fear of Flying. And Running. And Walking.

Before surgery, when I was at my heaviest, my exercise routine had a predictable pattern. I would go out hiking in the woods every day for weeks, maybe months, and then something would happen that would make me stop. Sometimes it was an injury or illness. Sometimes it was weather conditions that made walking in the woods unsafe (in windy, rainy weather, entire trees fall over). Sometimes it was something else, like the time a guy on the trail threatened to kill me.

However it happened, I would stop hiking. And then, after the illness/injury/weather/fear passed, I would still stay inside. Before my house burned down, this didn’t mean I wasn’t getting any exercise – I still had an elliptical, a stationary bike, and a treadmill at home, and I would just use them. But I don’t get the same kind of workout on a machine indoors. Running on a treadmill is a million times easier than running on the earth, because even the flattest places have those little up- and downhills, uneven pavements or no pavement, and places where I have to stop for a light or negotiate a weird bend in the road. All those things affect my speed, my balance, the amount of effort it takes to keep going at the same speed.

It means that, if I hadn’t been outside in a while, I would think about it and my mind would say “It’s gonna be haaaarrrrd” in that whiny voice my mind adopts when I don’t want to do something. Out loud, I might say “I don’t have time for a walk or a run,” but inside my mind, I know the truth. I’m resisting it because I’m afraid it’s going to be hard.

There was a time when taking a four-mile hike through the woods at a fast pace would mean that my hips and knees would ache for a few days, and heading out the next day on a hike would make the problem worse. There was a time when going too far or too fast, even in my walking shoes with my orthotics in them, would make my feet hurt. Sure, my heart and lungs were up to the job, but my skeleton was struggling. And during that time, I often listened to that little voice inside me that said “You stopped for a good reason. Don’t start again, because it’s going to be difficult and you’re going to hurt yourself.” A hundred pounds ago, that little voice was protecting me from doing myself an injury.

Now that I’m about 100 pounds lighter, I keep forgetting that it’s not hard. It’s just not. I can walk for miles in Converse (the shoes I wear most often around the house) and my feet will be fine. If I’m short on time, I can run my 3-mile circuit, saving 15 minutes off my normal walking pace (I walk with my dog, who slows me up considerably), and my knees and hips will be fine.

It’s hard work to re-program your brain. We’ve all got behaviors we’ve internalized over years – things that protected us at one time, but that aren’t helpful anymore. When I find myself in a situation where those unhelpful instincts kick in (a lot of them have to do with growing up with food insecurity, and so involve eating more than I need), it’s difficult tell myself “This is an old reaction to a situation that doesn’t exist anymore. I can react differently and it’ll be okay.”

Now I need to put that thinking to work in my running routine. It’s not as hard as I think it will be, it won’t take as long as I’m afraid it will, and I’ll be fine afterward. Thanks, little voice. I know you mean well, but you can stop now. You’re no longer needed.

How to Recreate Your Life

It’s the same every time.
“Where are you from?”
“Bonny Doon.”
“Oh, no! Were you affected by the fires?”
“Yes. We lost everything.”

…..crickets….

I always feel like a bit of a fraud saying we lost “everything.” We had packed up some stuff the night before – a few changes of clothes, our meds, our important documents, our computers, and the dogs’ food, crates, medications, and blankets.

So, we didn’t lose everything.

In the first few days, we had an unending caravan of Amazon trucks dropping off the very most basic things we’d left behind. Underpants, socks, pens. We were living in my mother’s spare room, so there was a limit to how much we needed to replace. When we moved into a rental house and found ourselves in the position of having to create a household from nothing, there was another round of Amazon deliveries and trips to big box stores.

I’ve come to see that there are four different kinds of buying I’ve been doing, and I really have to evaluate every purchase to see which kind it is before I hit “buy.”

  1. Absolute necessity
    There were things we needed that we had zero of — things like baking pans, cloth napkins (we’re hippies – paper is a no-no), cleaning products, basic spices, a bed, etc. These are easy. If I can’t carry on a quotidian task without it, it’s a necessity.
  2. Re-creating the old house
    Although we’d already identified quite a few things from the old house that we’re not replacing (good-bye, harp), I keep stumbling over “we had it at home, so we should have it here.” I really have to talk myself down from buying things like huge rugs, cute little tables, my famous steamer trunk office. I mean, there’s a very good chance that I will put some of those things back, but I have no idea what the space is even going to look like right now, so I can’t start buying large, furniture-type things for a house that doesn’t exist yet.
  3. Filling up the rental house
    This place is nearly as big as our hold house, which means that there are miles of bare walls, open floors, and empty counters. At our old house, we had to create space for things because every nook and cranny was full. It’s hard to resist the urge to look at the space we’re in and think “this corner could use a little table,” or “I should get a lot more plants.” I have to keep reminding myself that we’re not staying here forever, and when we leave here, we’ll be moving into a space less than half this size.
  4. Filling up the new house
    I’ve already decided on the themes for each of the rooms, which will dictate what kind of stuff I’ll want to get. I’ve been buying smallish things that will go into the rooms -— hourglasses for the Pratchett room, a pair of raven lamps for the Clarke library — but apart from the furniture we need for daily functioning, I’m afraid to buy any large furniture until I know what the new house will look like and so what spaces we’re trying to fill.

Everyone wants to give us things to replace what we’ve had, but that’s not quite right. Then they want to give us things in themes we like, but we’re not quite ready for that. The one thing I have received from my friends that I will always accept, that I will take a zillion of no matter where I’m staying, are books. My friends have really been coming through there, and I know that once we get into our new house, I’ll already have my friends there with me.

Tabula Rasa

When I was pregnant with my first child, I had a recurring dream: I would wake up one morning and the baby would just be there. No labor, no warning, just BAM! — baby. I would look at this new baby and think “But we’re not expecting you for months! We’re not ready! We have nothing!” It was overwhelming and panic-inducing.

We just found a rental. We’ll be moving out of my mother’s house, where we were taking up her guest room and guest bathroom and about a quarter of the living room, and into a 4-bedroom house that’s only a little bit smaller than our house was. In the month that we’ve been here, we’re rebuilt our wardrobes to some extent (a HUGE shoutout to the folks at CP Shades who sent me boxes of beautiful black linen that I’m wearing right this minute), but we haven’t replaced anything from our kitchen (except some tea things, because TEA).

So now I’m trying to figure out what I need to outfit a kitchen that has nothing. Not a bean. Not a grain of salt. Not a speck of flour. My husband and I are avid cooks, and my spice drawer (which held only the spices I used most often – the rest being in the pantry) made me really happy.

I know we can’t possibly go from this to nothing and back to this. But my brain is breaking trying to think of all the very most basic necessities I have to acquire. Salt. Pepper. Flour. Sugar. Butter. Rice. Meat. Vegetables. Bread. Part of me is afraid that I will forget something crucial, which is stupid because there’s a Safeway less than two miles from the new house.

But I have the same feeling as I go through my wardrobe. Part of the insurance claim process is documenting everything you’ve lost. The company we’re working with has given us a spreadsheet with everything a normal household would have in it. As I go through the listings, it’s really hard not to think “I need to replace that right this minute.”

I feel like I can make myself feel safe and whole again by surrounding myself with the things I had before. It’s not like I had a huge emotional attachment to those particular things (who has an emotional attachment to a bag of flour or a bottle of oregano?), but I have a very firm attachment to the life that required those things, and maybe I’m afraid if I don’t come up with exactly the right combination of stuff, that we’ll suddenly be miserable. Is this feeling common to people who have lost everything? I have no idea.

I’m fine. I’ll be fine. Even if I have to run to the store because I forgot eggs, all will be well.

How to Not Mourn

Everyone who’s heard about the fire at our house has had the same reaction: “That’s terrible! You must be so sad! I’m so sorry! That’s awful!”

I tell them “I’m fine, really. It’s okay.” Everyone thinks I’m putting a brave face on things, but I promise you, I’m not.

Here’s a typical day at our house.

My husband wakes up before me and lets the dogs out into the yard. He makes himself a coffee with his obnoxiously expensive coffee maker that can be programmed to make anything he wants, and knows that he wants a double espresso in the morning and a decaf Americano in the afternoon.

I wake up, step into my slippers, put on my bathrobe, and wander out of my room. I kiss my husband and tell him how wonderful he is, and he hugs me and says “We have a really great life.”

I go into my office, but about twenty times a day, I come back to where he is, sometimes to talk, sometimes just to peek at him. When I’m in my office, I look out the windows at the birds mobbing the feeders. Sometimes, I go out on the deck and lay in the hammock and think “This is the best life.”

After dinner, my husband and I might snuggle up on the couch in the living room and watch something. Or we might go into the library and watch something in there, or maybe put on some music and drape ourselves over the furniture in the library and read. And every once in a while, we’ll look at each other and say “Our life is amazing.”

I sit in the library and look around myself and think about how much I love the room itself, and how all the books in it have meaning to me. I look at the art on the walls and think about how much I like it.

And before we fall asleep folded up in each other, my husband and I say “I couldn’t ask for anything more.”

From the outside, I’m sure it sounds just disgustingly saccharine and fake, but let me be crystal clear: I appreciated the life I had. Truly. Deeply.

I grew up with a lot of siblings and not a lot of money. The things I had were often hand-me downs, things I didn’t pick for myself. There were so many things I wanted that were out of reach, and so many experiences I wanted to have that seemed like they were for other people, not people like me.

The upshot is that when I had things, I loved them. I saw them. Every day. They were a reminder of all the good things in my life, and expressing that delight never got old. Expressing my happiness and love and joy never gets old.

When we lost our house, I was certainly sad that everything was gone. But I didn’t have the regret that comes from not recognizing or appreciating things until after they’re gone. On the other hand, the person who appreciated all that with me, the person who created that lovely life with me, the person who stands next to me and looks out at all we had built and agrees that this is the best life – that person is still here. He was the most important part of that life, and he’ll still be the most important part of whatever we build going forward.

With that on my side, how could I be sad?

I Want My Cigarettes

There’s a scene in One Flew Over the Cuckoo’s Nest where the men are sitting in their group circle talking, and Cheswick tells Nurse Rached he wants his cigarettes. Murphy tries to get one of the other men to give him a cigarette, and Cheswick gets angry, shouting that he doesn’t want anyone else’s cigarettes, he wants his cigarettes.

I’ve had a hard time going shopping. There are tons of things I need. New bras. New socks. New toothbrush. But every time I go into a store and see all the things I used to have, my mind just stops, and I stand looking at things like I’m hypnotized, which, in a way, I guess I am.

In addition, everyone has been beyond kind in offering things to us, especially our mothers, with whom we’re staying. It’s hard not to seem rude by refusing these very kind offers. I have two perfectly valid excuses: we don’t have the space to store anything, and there are plenty of things we won’t need until we have our own place anyway.

My husband and I went and visited the house, partly out of curiosity to see what might be left, and partly out of the need for pictures to prove to our insurance company the house is not salvageable. What we saw was like every apocalypse movie you’ve ever seen. Random bits of metal sticking out of drifts of ash, with occasional nonsensical, whole, undamaged things amid the carnage.

a pot, a pie server, a mug

Our 6-gallon stockpot, a 3-tiered pie stand, and an antique shaving mug belonging to the Pirate’s great-grandfather.

The stockpot was seldom used for food, and we got the pie stand out perhaps once a year. The shaving mug wasn’t technically whole, but it had been in the Pirate’s family forever and had an interesting history. I had no emotional attachment to these things, and am, at best, indifferent to their survival.

two and a half foot celtic cross made of metal

The Celtic cross from the front gate of our garden – the thing I saw as I came down the driveway, and as I went inside the house from the garage.

This Celtic cross was a newer addition to our house, but one that gave me a lot of joy. We’d gotten it at the Highland Games four or five years ago, and affixed it to our front gate, where the wisteria slowly surrounded and framed it. Every time I looked at it, its beauty struck me. This is the one and only thing whose survival touches me.

I went today to replace my Doc Martens. I wanted the exact pair of sandals I’d had, because I loved them and thought they looked great, but the store didn’t have them in my size. And then I realized that I didn’t want a replacement for the things I had.

I didn’t expect shopping to be this hard. I tried to go by myself once, and ended up having to call the Pirate for emotional support from the middle of Costco. I can be upbeat and optimistic about constructing a new house, but now I know that replacing the things in it will be a very different story.

Because I don’t want your things, or their things, or new things. I want my things.

Material Ghosts

Sometimes, the logical links along a chain of thought aren’t clear, and one needs to be walked from one thought to the next to make sense of it.

Like why being cold made me cry last night.

It was hot when we evacuated* our house. I took tank tops, low-top sneakers, no-show socks. I took one sweater, but it’s more like a cloak that hangs down past my knees and has huge, floppy sleeves. Great for going around town, less great for trying to get work done at my desk.

Now that we’re in San Francisco, my warm-weather gear has been useful for only two of the 19 days we’ve been here. Last night, even though I was wearing sweatpants, a t-shirt, and a sweater, I couldn’t stop shivering. I got online to check on the delivery status of a coat I had ordered, and while I was online, I checked to see if the red shrug I had from Universal Standard  was still available.

The red shrug sweater, and some other clothes I no longer own.

Of course it wasn’t. It was perfect – a high neckline, long sleeves, the perfect weight. Comfortable and striking looking. And no longer for sale. I went to other sites where I’ve bought clothes and looked at their current offerings. None of them were as attractive, practical, or cool as what I’ve lost. I’ll never get back my 25 year old butter yellow silk frock coat. I’ll never get back the long, single-breasted glen plaid wool coat with a rose pattern that had been made to my design. My beautifully warm, yet light, oversize gray sweater. My overalls with the zipper sides instead of buttons. My favorite socks. My warm beanie that said “sláinte” on it.

When one is sad and tired and raw and bereft, being surrounded with the familiar can be comforting and soothing. But the familiar is gone, and I’ll never have it back.


* I keep typing “left,” but I don’t like how it makes it sound like we walked out of our own accord because we felt like it. Leaving at least has the strength of choice behind it. Being evacuated is a circumstance imposed upon us.

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.