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"Hang on a second," I said, starting up the stairs just when Andrew was nearly ready to go out. "I need to get some different shoes."

Trying to catch possible comments before they might happen, I said "I know you only have one pair of shoes because you have one pair of feet, but I can't do that."

"I know you do!" he said, rightly a little defensive at my pre-emptive unfairness. "I don't get it but I don't get a lot of things."

"And do you know why I can't have only one pair of shoes like you do?" I called down from the bedroom where I was buckling pointless but cute little buckles on my sandals.

There was a long pause.

I'd taught Andrew that women have to choose between comfort/suitability and acceptable appearance a lot more in our clothing than men do. I've never had one of those jobs where they mandated high heels, but I've certainly had criticisms for insufficiently-"professional" footwear even at temo jobs (where I couldn't afford new shoes!). Andrew's black brogues from Clarks are the overlap in the circles of functionality and approbation but for women in almost all of society, these two circles of the Venn diagram don't meet.

The pause got almost long enough that I was going to give the answer when two words floated up the stairs: "The patriarchy?"

"Yep!" I said, slapping my knees for dramatic effect as I stood up, feet newly sandaled and ready to take on the world. He got it exactly right; I'm so proud.
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I have a stock answer for anybody who finds out I'm American and asks (out of politeness or incredulity, it ends up the same) what brought me here.

"My husband's British," I say. "And he thinks Manchester is the best place in the world."

1:49 this morning is the first time he told me he was sorry for bringing me here. "I thought when I married you I'd be taking you to a country where you'd be safe."

It broke my heart.

He hasn't stopped apologizing since. And my heart hasn't stopped breaking, for all kinds of reasons but this chief among them.

I love the UK. I love living here. I love being an immigrant, for all its miseries and horrors. I am surprised to find what an integral part of my identity this has become.

But of course, most of all I love him. I love the lives we've worked so hard to build together.

That anything, or anyone, could make him, the naturalized Mancunian who resists all my complaints about the weather and about how nice Yorkshire would be, could make him apologize, is almost as bewildering as it is enraging for me. He's 100% convinced he's brought me to a fascist country, where I'll be less safe as an immigrant, as a disabled person.

Considering, of course, how bad the country I'm from is on such things, I think at first he's exaggerating; my heart doesn't just break but feels like it'll shatter when I understand that he is not.

Goddamn anyone who makes him feel like a failure for marrying me and working so unbelievably hard at keeping us fed and housed and as happy as possible. I couldn't ask for anyone more committed to my happiness than he is -- not my parents, certainly not me! -- and goddam anything that makes him doubt or question or regret that.

Sound facts

Mar. 4th, 2016 12:50 pm
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I just found this as a note on my phone, saved several months ago. No idea why I wrote it. Figured I'd share it.

Andrew's just answered the phone and said "hello?"

Pause.

"HELLO?

"WHAT WAS THAT?

"Does sound have a weight? No."‎

‎I think that might be an even better phone call from his dad than the time he rang to ask Andrew who the singer is that wasn't Roy Orbison.
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The hard sculpted plastic of the facemask bumped into my left shoulder. Then a jet of cool air shot directly into my left ear as Andrew moved slightly shifted position, to give me a squeeze before he turned to face away from me.

Ah, love in the time of CPAP machines!

A friend once described sleeping next to a partner who used one as "Darth Vader in an arctic desert," which does pretty accurately convey the feel and sound of this multimedia experience.

But...somehow, in a nice way. Really! I'm not complaining. Maybe because we both sleep so much better since his sleep apnea has been diagnosed and treated. And at times like this it does liven up a (otherwise really terribly dull and frustrating!) bout of insomnia!

Ten years

Jan. 22nd, 2016 08:40 am
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Here's what Andrew posted yesterday.

Ten years ago today, give or take a time zone or six, I got married. (Coincidentally, so did Holly.)

I’m not very good at talking about my feelings, so I won’t talk about how much I love her, or how lucky I am, or any of that. And the wedding day itself is not one we particularly look back on with any great pleasure — it was less than two months after Holly’s brother died, and she was moving to another continent away from her family, which among many other things made the dynamics of the whole “not losing a daughter but gaining a son” thing rather different, and not in a good way.

But our wedding *was* the occasion of the one actual romantic gesture I’ve ever made, so I can at least mention that.

Holly and I both enjoy the work of the songwriter Stew. I’m a bigger fan, but we both knew and loved albums like Guest Host and The Naked Dutch Painter. These days Stew is a Tony Award-winning writer of musicals, but back then he and his band The Negro Problem didn’t have even the small level of celebrity he does now.

And because of that lack of celebrity, Stew offered an occasional service where he would write and record songs on commission. So — with the financial help of several friends who helped me pay for it as their wedding gift to us — I managed to scrape together enough money to pay for a song about Holly, for our wedding. (This was a major effort. At the time I was working three jobs just to pay off enough debts to get into a position where I could meet the financial requirements for her getting a spouse visa).

Here it is. https://olsenbloom.files.wordpress.com/2016/01/nows-eternity.mp3

To help make sense of some of the less obvious bits of lyric, my wife’s name is Holly, she comes from Minnesota (“the land of ten thousand lakes”), we’d met over the Internet originally (this was back when that was a relatively rare thing), and she was moving from the US to the UK.

I still think it’s a truly great song, and I’m pretty sure I’d think that even if it wasn’t about a truly great person.
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Now that he's endured the Christmases, Andrew's safely ensconced with his laptop at the desk in my bedroom, which I just next to a window. Here are his observations so far:

It's all white! The ground is white and the sky is white. That's all wrong.

There's a bird out there that keeps eating from the feeder and then looking in the window at us like "What? What is that?" and then going back to eating.

That is a fat squirrel. It has a huge bottom. It's shaped like a pear!
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"I'm sorry," I told Andrew after he'd endured a day of pain and feigned neurotypicality for me.

"You didn't invent axial tilt, or the Abrahamic religions, or the capitalist system that gives us only a few days off a year," he reassured me.
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Me: "No, Tories who want to leave the EU, you can't follow me on Twitter."

Andrew: "Just tell them you leave the EU every Christmas and every summer; it's always a good thing to come back!"
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"Southerners don't even think 'good' rhymes with 'blood'!" Andrew announced, no doubt something he learns from the internet he's glued to every waking moment. I've been busy tidying so if there's a context for this I don't know what it is.

When my brain finally gets around to processing this I say, "...They don’t!"

To which of course the only reply is to shout both words, because volume and repetition will solve everything. 

Then a terrible realization dawned on me. "Oh, God, this is gonna be like how you think I'm saying the same ‎thing when I say 'rum' and 'room,' isn't it?" That one went on for ages, and it was such a long time ago -- maybe even before we were married? -- that I hoped we were done with it...

..."for good," I was gonna say, but no. Turns out it's still "for blood"! Ha.

The shape of my mouth is different and everything, I now notice, when I say these words. It wouldn't be the first time my dialect aligns me with the south of England (I prpnounce "scone" so it rhymes with "phone" too). 

I hear a distinction between these two words that he doesn't, and that's fine. Because some people's linguistic capabilities really do develop in such a way that they retain or lose certain sounds; most remain separate but a few that don't get used enough to be worthwhile can get elided together. "Cot" and "caught" sound the same to some English speakers and different to others.‎ There are many and varied examples of this phenomenon of people who hear and speak a variety of languages.

But then there are also people who insist that their way is Right and all others are Wrong and Inferior. 

It's much easier to be one of those, I think, if you basically have always lived in the same place. ‎

"Good! Blood!" Andrew said again.‎ "Goodbloodgoodbloodgoodblood..."‎ ad infinitum until it was time for me to leave the house. Which, thankfully, was only a few minutes later!
hollymath: (Default)
Andrew's learning to touch type.

He doesn't like C. C, he thinks, should be handled by the F finger, not the D finger. (He's okay with D doing E, though. And X.) But he thinks the F finger gets in the way of D moving to C.

"F already has like six letters to do!" I said. "It doesn't need any more work!"

"It's only doing F and R so far," he said.

Aw. Having learned this when I was nine, I had forgotten what it's like for each letter to be its own little challenge, its own individual victory.
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"I must be doing worse than I thought," Andrew said as we were on our way out of the cinema after seeing Mr. Holmes. "I actually started tearing up at the end of that!"

I smiled. "That is not a sign of any problem."

It's a marvelous film, emotionally powerful but no overwhelming, as my anxiety leads me to find so many stories these days. Ian McKellen's performance is so tremendous I think I might have to add him to my usual list of favorite Holmeses -- Merrison and Brett. I never expected that duo to become a trio.
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One of Andrew's tweets from this afternoon says
Improvised a standing desk by putting a chair on the dining room table and putting laptop on that. Using books as keyboard rest
Place your bets on exactly how much damage to property and possessions I can look forward to when I get home this evening!
hollymath: (Default)
That princess in The Princess and the Pea is definitely autistic, isn't she.

Milestone

Feb. 24th, 2015 08:41 am
hollymath: (Default)
A month shy of having been here a year, I've finally been able to convince Andrew to let me teach him how to turn the heating on (or off). I'm very pleased to have one more thing that I am not solely responsible for!
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Andrew resisted referring to himself as anything like autistic up until several years after I first met him.

His reluctance seemed to arise partly from not having -- or, at that time, wanting -- a formal diagnosis and partly from the people who had what we called Internet Asperger's, a self-diagnosis that guarantees accountability-free insults and bad behavior to anyone online, a get-out-of-consequences-free card that anyone can play by simply saying the magic words "it's not my fault, I have Asperger's."

Andrew is the furthest thing imaginable from that kind of person: he is hyper-aware of his difficulty in decipering nonverbal communication and is thus constantly apologizing pre-emptively just in case he's upset or offended someone and hasn't realized it. So he wanted to clearly differentiate himself from these allergic-to-accountability people by avoiding their self-description.

I understood, respected and did my best to support him in his decision not to claim autism as a label for himself. But a lot of things got better or easier for both Andrew and me when he started to realize how much of his experience fit what we gradually discovered were both the strengths and the difficulties of people on the autistic spectrum. A surprising array of seemingly-unrelated things, from his Princess and the Pea-esque sensitivities to the fact that he needs more Novocaine at the dentist than most people because he registers pain in a way most neurotypicals don't, suddenly make sense, make more sense, or have some evidence backing up what seem to otherwise be peculiar or inexplicable characteristics. It leads him to retroactively look on his experiences he had in university and in relationships more accurately and more kindly than he did at the time.

It has helped me appreciate the work I do in interfacing between him and the world, and it's even might explain why I'm good at being married to him, because my visual impairment leads me to share more traits in common with people on the spectrum than I would otherwise and there's a theory that autistic people form successful relationships with partners from different cultures, because those people go into the relationship expecting to have to work harder at communicating than perhaps someone from the same background might do.

It's hard to think of any downside to saying that Andrew is autistic that isn't about the sticgma autistic people face from asshoes or the well-intentioned ignorance they face from almost everybody else.

#
Through my early twenties I found that many guys would hone in on my “cute eccentricity,” my “beautiful weirdness,” and, yes, my “adorable awkwardness.” Autism didn’t come into it for them — I was not what people imagined when they heard the word. I didn’t rock in anxiety, I didn’t speak in a monotone, I laughed and danced and engaged with people, showing interest in their work and passions. Here the common misconceptions about autism were both my ally and my enemy: they allowed me to hide, and to embrace a status as “off-key yet normal,” but they also damaged me by giving fuel to the lie that I was just a bit odd, making it all the more difficult when it blew up in my face with someone yelling: “What the hell is wrong with you?”
#

From what I can tell, the impetus behind this "you're not autistic, you're just endearingly quirky" is extremely similar to that which leads people to tell me things like "you're not fat, you're beautiful." What seems to be the message, in both instances, is that's a word we use for people we don't like, and I like you, so it can't be said of you!

Maybe a better way to fix that would be to stop thinking these words can only be insults, fit only for people who are to be either pitied or despised -- if not both.

#

I had a lot of random conversations during the week I spent looking after my mom in August. One of them, and I can't even remember how now, led to her telling me that Andrew isn't really very autistic. "He only has a touch of autism," I distinctly remember her saying, because I remember thinking that makes it sound like it's something he dabbles in. When he can find the time.

Yeah. No.


And then I thought And she should know better! She knows enough about autism... but of course, that was precisely the source of the problem. She knew about autism from working with an autistic boy who needed a ton of assistance to get through the mainstream school he was in. He was called "low-functioning" and fit a lot of the ideas people have about what autistic people are like -- he was difficult to communicate with, he needed strict routines, stuff like that. And a friend of my mom's has an autistic son, who is a bit "higher functioning" but still needed tons of help in school and has some stereotypical traits. So this is what her idea of autism is. And Andrew doesn't really fit it, so he only has "a touch of autism."

#

I think she thinks she's paying him a compliment, by saying this. "You're not that autistic" is probably good, in the same way that "you're not that unattractive" would be -- with all the overtones of trying to be reassuring and supportive...and of failing oh so hard.

Like the people who reassure me that I'm totally not fat. Because I'm great. Like those are mutually exclusive states.

Thanks, but no thanks.
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When Andrew got home from the cinema, he told me "...and my mental state clearly isn't very good."

Since he didn't elaborate, I wondered how he'd determined this. Then I remembered what he'd been to see, The Muppet Christmas Carol. "Did you cry?"

"Little bit," he said. "When Tiny Tim died."

"Everybody cries at that!" I said. "That's not a sign of a bad mental state!" I mean, I'm not doubting that he is feeling bad, if he says he is. But a few little tears shed at the demise of Tiny Tim aren't themselves a cause for concern. The good that humanity manages to do for itself is often motivated by such tears as those.
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"I'll come to bed as soon as I've finished this puzzle game [personal profile] andrewducker​​ linked to..." Andrew said.

"Oh, great," I replied. "Remember the last time you said that, when you lost a month to playing 2048?"

"At least you got a break from me for a while," he said in the small voice he uses when he knows I'm right.

"Except I didn't, because you kept yelling things like 'It's a DDoS attack on my brain!' "
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Andrew put away most of the laundry last night but left on the bed a few things of mine he didn't know where to put.

I folded my tops and put them away. Or so I thought! But when he tucked me in bed (I was in pain and feeling sorry for myself and wanted a story read to me) he said "what's this?"

I'd not noticed a t-shirt that had blended in with the duvet. He picked it up. "Oh, it's your Kinsey 8 t-shirt."

(Some years ago for Pride a bunch of people had t-shirts made that illustrated the diversity of bisexual (and bi-ally) attractions. They were made to look like football players' tops, with "Kinsey" across the shoulderblades and the big number underneath. I thought it was such a great idea, and looks great when there are a bunch of people wearing them in a group.)

"Three!" I said. "That's a 3!" (Even three is a bit much for me. I'd ordered a 2 but the t-shirts got mixed up and I'm happy enough with the 3, even if it doesn't really reflect my life (so far at least!)) "It only goes up to six!"

"You're probably still an eight," Andrew said, in that way he does when he likes to be right even when he doesn't know what he's talking about.

"The higher the number is, the gayer you are!" I explained, but my husband seemed totally undeterred, bless him.
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Last night, we realized that Andrew didn't know a change in me that I thought I'd told him months ago and repeatedly, I try really hard to find useful ways to communicate with him, and mostly we both think I do pretty well, but there are of course still times when that doesn't happen and subjects more likely to confuse us both.

I said sometimes talking to him is like one of those little-kid toys, the hollow plastic ball with holes of different shapes cut into it, and different-shaped blocks that fit each. Not only do you have to choose the right block for the right place, you have to have it at just the right angle and orientation to get the block to slide in like it's supposed to.

But Andrew had an even better analogy. "I think of it like a text adventure game," he said. "You can say 'get coat,' and nothing happens. 'Get jacket.' Nothing happens. 'Get overcoat.' 'You have the overcoat!' " It made me laugh at the time, but I'm still thinking today that it seems useful. And it's still making me smile.
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I do not remember the dream I was having before I woke up a little bit ago, but it must have been something weird. Because in my own bed next to my own husband, I opened my eyes and didn't know who this was sleeping next to me, or where I was. I couldn't even hazard a guess; my mind at that point was completely free of likely candidates or even ones I could safely rule out.

Just then he, lying on his side facing me, reached out an arm to throw it around me. And then I found myself thinking Oh, that must be Andrew then, as if I'd worked it out by deductive logic, and thus I was soothed.

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