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Hi all, long time no post. A lot has been going on, but I’m finally starting to get on top of things again. I’ve been meaning to write in a bit more depth about some of this, but that want for perfection has been the enemy of the writing anything at all. So, here’s a quick synopsis of what’s been going on in my neck of the woods.

Both of L’s parents passed away. We’ve known this was coming, but it’s still hard of course. L was out there for a bit over a month taking care of her mom. They died very close together, so we ended up having a single combined service. I was out there for about a week helping to wrap things up before whisking L back home.

I finally got back the results of the genetics test. Turns out I don’t have Loeys–Dietz, or at least not the same genetic variant my mother did. But I definitely have something. So it’s back to the diagnostic swamp trying to figure out how to give it a name so that doctors’ll take it seriously. Current working hypothesis is hypermobility-type Ehlers–Danlos. Alas, “hypermobility-type” is medical jargon for “we have no idea what this is, but it kinda looks similar to the forms of Ehlers–Danlos we do know stuff about, so let’s call it that.” So, yeah, no medical tests to “prove” that’s what it is; just your usual game of convincing folks you have enough of the symptoms to match the syndrome.

I’ve been getting used to paying attention to my ADHD and working with it rather than trying to plow through it. It helps a lot to recognize that it’s not a failing on my part (e.g., that I can’t focus on boring things for as long as other people) but rather just part of how I’m wired. That makes it a lot easier to stop beating myself up over things, and instead figure out better ways to work with my brain rather than trying to force it into a shape it won’t take. As I’ve gotten better at this I’ve finally started getting caught up on a bunch of things that’ve fallen to the wayside over the past few years.

For example, I’m slowly getting caught up on the backlog of bug reports and feature requests for my various Haskell packages. Mostly been focusing on logfloat and unification-fd so far, but will make it around to the others in time. So, if you sent me an email about some bug or feature over the past few years and it seems to have fallen into the void, consider filing a ticket.

Still working on getting caught up to where I should be on my dissertation.

Work has also been going excellently. It’s all seekrit and nonsense, so I can’t say too much about it. But lately I’ve been doing a bunch of work on characterizing families of mathematical objects, and discovering their symmetries so we can exploit them to simplify and optimize things. So lots of mathy goodness going on. It’s a bit more geometric and combinatorial than my usual algebraic fare, but it’s the sort of stuff that arises from algebraic structures so it’s not too far from home base. (If that doesn’t make sense to you, maybe take a look at Brent Yorgey’s thesis to see an example of the connection between combinatorics and algebraic data types.) Plus, it helps that I’ve been getting to know some of the hella queer ladies who work in my building :)

In other health-y news, round about the time I got officially diagnosed with ADHD I had a bunch of friends going on about what the symptoms of allism (aka non-autism) are. Though I have a bunch of autistic friends, I’ve never really known much about what autism’s really like because all the literature is written by allistic folks, for allistic folks, so they’re all “patient has underdeveloped/insufficient blah” and I’m like “according to what baseline? How much blah does it take to count as having ‘sufficient’ blah? What are diagnostic details for measuring how much blah you really have?” So I finally got to hear some details from the autistic side of the fence, where people actually explain shit and elucidate the differences. And based on that: I’m hella not allistic. I can (and should! and have been meaning to!) write a whole separate post on this topic. I’m still not entirely sure I feel comfortable adopting “autistic” label (for reasons which are, themselves, further symptoms of autism), because my experiences don’t match up perfectly with some of the parts of what is traditionally called “autism”, but I’m absolutely non-allistic. I think the spectrum of non-allism is far larger and more diverse than allistic people currently believe, but —again— a post for another time.

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For a few months now I’ve been increasingly convinced I have ADHD. I forget what exactly got me started thinking along those lines, but the more I started digging the more convinced I became. ((Then, in my usual impostor syndromey way, I started wondering if I “really” have it— that is, focusing on whether my internal psychological experiences match those of folks who have it, or whether I merely fit the external descriptions but am “really” just absentminded, bored, stupid, fill-in-the-blank. (Am I the only person who has metaphysical crises about the qualia of identity/diagnosis labels?) Luckily I found some folks willing to talk about their internal experiences and what convinced them that they had it. And, frankly, those descriptions sounded even more spot-on than any of the external descriptions I’d found all over the internet.))

This monday I went in for official screening. I’d already filled out a questionnaire thing for them, so this was for a computer test and a one-on-one with the doc. The “test” was more like a peripheral vision test or a psychological experiment than a test per se: press the button when you see a foo but not when you see a bar, etc. I’ve done plenty of timing-based psych experiments before, but this one was brutal. Unlike the usual random spacing of stimuli, the spacing for this test was like explicitly designed to be as aggravating as possible. As someone who’s good at videogames, not being able to “win” was awful. Yes, I know it’s the sort of test you’re supposed to fail, but still. If there were any doubt left by this point, just taking the test would’ve convinced me. When the doc and I went over the results, I did indeed fail with flying colors. Off the charts for one of the metrics ::chagrin::

So, yeah. Started meds yesterday and —like every other time I anguished over whether I “really” had something or not— the difference is like night and day. I really should learn to trust my self-diagnoses more.

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Life has been good overall. I’ve been wanting to write about various happenings of late (e.g., my trip to Nara for ICFP), but I’ve been terribly busy. Sure, sure, everyone’s busy. But no, my problem is that I have a terrible habit of overcommitting. For the longest time I’d always chalked it up to a personal failing; but lately I’m thinking that’s not quite right. Our society has a way of making us think whatever problems we face must be due to “personal failings”. One of the classic examples here is the Norman Door. But another classic example is the way we blame people with chronic conditions for the ableism they face.

So, what is a “Norman Door”? They’re called that because the problem was first (or most famously) highlighted by Don Norman. Have you ever had a door where you always pull when you’re supposed to push, or always push when you’re supposed to pull? Everyone has, and yet whenever we encounter them we always resort to blaming ourselves. Doors are such simple devices, surely any problems we have must be on us, right? But the problem isn’t us; the problem is the door. We discover how to operate the world around us by making use of affordances: flat/horizontal surfaces afford sitting and putting things on; handles afford grabbing and pulling; vertical surfaces afford pushing and leaning. So when public buildings don’t want people to sit on their ledges, they add bumps so they’re not smooth. When airplanes have surfaces they don’t want you to sit or put your feet on, they make them slanted so things don’t stay put. And a well-designed door is transparent about whether it should be pushed (plates or crashbars) or pulled (handles, especially vertical ones), and transparent about which side of the door needs operating (rather than, say, putting a doorknob in the center of the door). Those doors you can never get right are so difficult to deal with, not because you’re an idiot, but because they are poorly designed: the door’s affordances say to do one thing, when in fact you must do the opposite.

Poor design is ubiquitous, and I could go on all day about it. But the problem of Norman Doors isn’t just a problem of poor design, it’s a problem of social expectations. The problem isn’t just that these doors are annoying. It’s also that we blame ourselves for the failings of their designers. It’s also that this continuous low-grade annoyance exerts a continuous low-grade cost— in time, in flow, in emotional reserves. We get disrupted, frustrated, exhausted, and then we feel bad for not “measuring up” to society’s standards; and we reinforce that guilt by shaming others whenever they fall into the same traps. This is the same trick we play on minoritized people and people with chronic conditions. These people have to pay constant low-grade costs to overcome the iniquities of a society designed against them, but then we train them to blame themselves for encountering those injustices at all, let alone for not having the reserves to go on to lead “a productive life” after being exhausted by microaggressions.

Yes, I have problems overcommitting. But is it a personal failing? I’m not so sure. The problem is less one of not having enough time in an absolute sense, but rather a problem of not having enough spoons. I long ago got used to the constant low-grade costs of sexism, homophobia, transphobia, and saneism. But try as I might, I’ve not been able to get used to the costs of ableism. The sexism et al. was far worse in Bloomington than they are here in Mountain View. But from what I’ve seen so far, academia is far more amenable to folks with my sort of physical disabilities than industry is. It’s not even that Google is bad, per se; and I wouldn’t be surprised if it’s a lot better than most of industry. But even if the grass is browner on the other side, that doesn’t make it green here. The goog is great about providing ergonomic support, and that helps a ton. But the food/wellness program is grossly pro-orthorexic, which means they’re terrible for my dietary needs: I have issues with low-electrolytes, and the whole “salt is bad m’kay” propaganda causes health problems. (Hint: salt is crucial for the proper functioning of neurons. Also for silly things like maintaining blood volume, and hence adequate blood pressure.) I can, of course, bring salt from home or make sure to have extra at breakfast and dinner; but there’s an ongoing cost for keeping extra vigilant about it.

One of the bigger and harder-to-address forms of ableism in industry is the requirement to be ever present. Office life is exhausting. The triggering of sensory hypersensitivity, and accusations “antisociality” for wearing sensory-dep headphones. The expectation to sit still at your desk all day, and judgment for getting up to move around every pomodoro. Being interrogated if you use your cane irregularly, or being invisibilized if you use it regularly. To say nothing of the extreme ubiquitous fat-shaming of California. Many days, I’d be fine to get stuff done if I could work from home, but it takes all my spoons just to be “present”. And after a whole day or a whole week of being “present” I don’t have any energy left to pursue my passions and ambitions. Is it my fault for “over”committing to these passions? Of daring to have ambitions outside of surviving capitalism? Or is it a systemic problem that forces disabled people like myself to absorb the costs of society’s failure to design for the whole variety of human bodies?

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So, I’ve been doing this interview. They’re about ready to post it so, understandably enough, the interviewer asks for a head shot. Cue the panic.

I… I’m not so good with pictures. I love taking them, love seeing pictures of other folks, but when I’m in front of the lens… it’s not good times. I often tell folks, only half-joking, that I believe cameras steal souls. Not the whole thing at once, of course. (Of course!) Just slivers and shards, which grow back in time, or chips and chunks, which maybe don’t. When you tell it right, people don’t pry for details, don’t get upset and bully you into the shot, don’t tease with that dagger in your ribs all “friends” here, don’t chastise for ruining their fun; they know it’s a joke (they know it’s not a joke). But only when you tell it right.

But they do. Steal souls, I mean. If you’re ever in doubt, just hold a camera up to my face. Watch the eyes dull, the jaw slacken, rosy cheeks go sallow, the breathing still— not stop, stopping is abrupt, rupture is resistance, and resistance is a lifewell. Just still like an unused balloon discarded on the floor, no impending movement, no impeding movement. Deflated ragdoll corpse. Might as well take the fucking picture now. The soul has already gone. You better get what I paid for.

For the longest time I never quite knew why I hated pictures. By which I mean: I knew. In that way the body knows what the mind can’t admit.

There’s the family gatherings, the unending demand for circus performance. Stand up tall next to angry father! Show your smile with abusive mother! Oh you can stand closer than that! Ooh, ooh, hug your rapist! Yeah, like that, let’s see an embrace! Now for the group shot! And the solo shots! Did we get the pairs? Let’s do another set, why not! Now with Aunt Judy’s camera! Wait no, we forgot the hallway shots, gotta do them all over again! A soulless enumeration of all possible positions, like much of Marquis de Sade. Rolls and rolls of film, back when film was a thing. Like cellulose can replace the real family with something else. The day the first in our family bought a digital camera I cursed their invention, cursed the ever-hungry void of their unending memory. But no, that’s not where it started. That’s just the acid in an already raw wound.

I’d always supposed it started with mental illness. Danielle Vintschger talks about mental illness as becoming invisible, symptoms as a way of demanding to be seen. Her article resonates strongly within me, though I find her own in/visibility skewed at queer angles to mine. Growing up in that family, the last thing you want is to be visible. Being visible means being a target. The only way to survive an abusive childhood is by learning to become invisible. Pictures are dangerous. Pictures get you noticed. Pictures risk letting out the demon of truth you hide inside your flesh. Pictures risk showing something real. The most dangerous thing in a toxic environment is to expose anything real. The real is where you keep what’s sacred to you; and anything you value is a vector of attack. You must remain phlegmatically disinterested in all things. As soon as someone guesses what’s important to you they’ll break it. They will destroy it piece by piece, in front of you to make sure you watch, to make sure whenever you think of that shredded joy you think of them and their victory over you. But not just joy, any weakness any illness you must also hide. Muffle your tears into a pillow. Cut where it can’t be seen. When you have to break down, dissociate, divorce from reality, do it somewhere else, somewhere you can leave the body safe in your absence, somewhere noone can see those disquiet moments when you leave and when you return. Never leave pictures, pictures are evidence, and all evidence will be used against you.

There’s something else too besides visibility, something evil in pictures, some contagion that leaks out and seeps in through your eyes. Muslims know this. Or perhaps the evil is already inside you, and the image merely beckons it to surface. Wherever it is, you instinctually know you must not look. But you can’t keep others from looking, so the evil gets in them. It wasn’t until a couple years ago I began to question. Maybe my problem with pictures wasn’t only from mental illness. I only began to question because I began to look.

The evil lives not just in photographs but also in mirrors. It started slowly, unintentionally, out of the corner of my eye a glimpse. You can go thirty years without looking in a mirror. Shaving, brushing your teeth or hair, you never need the mirror. At most you only ever need parts not whole, like a masseuse uncovering singular limbs to avoid seeing the body. You notice the reflection because you can’t remember the last time you saw one. Did you know bathrooms contain mirrors? The first few glimpses you turn away, pretend not to see. But it’s startling, this other person in that tiny room with you. They seem to be ignoring you too, so that’s good. In time you make peace with your bathroom double. Some days you sit with them, both not looking, becoming used to the presence. Other days it’s easier: you each go about your business, not talking but knowing how to stay out of the other’s way. Until one day you forget the rules, you turn to talk and see… someone else. She’s a girl, your bathroom double. Kinda cute, you never expected that. How strange. You could’ve sworn she’d have a different face. Something more masculine, something more hideous. As if on cue her face begins to droop and swirl, bits melting into other bits, all come undone. You look away before it’s too late. The next few days she isn’t there. You kinda feel lonely, but also kinda feel relief. Eventually she comes back, in furtive glimpses. When she seems calmer, you sit silent with her, apologizing without words. The second time, you ask before you look. Over years —and it does take years— you build a tentative trust. You can look at her now. You’re not sure where the evil went, but you no longer need to hide from mirrors. You’re not sure anything requiring such powerful trust can ever be called “safe”, but maybe safe is something you can build.

It all makes sense now. Of course my hatred of photos is all tied up in dysphoria. (Of course!) But as I said: the body knows how to hide the things your mind can’t admit. Like it hid all those mirrors I never noticed.

Yes, I came to terms with being trans years upon years ago. But acceptance does not cure dysphoria. The longer I accepted being trans the deeper my dysphoria got, until the day I started correcting the hormone imbalance destroying my body and mind. The dysthymia and depression lifted immediately, but the longer-term psychological damage takes more time to recover. I was on HRT a year and a half, or so, before I started catching those first mirror glimpses. At three, I can look without the image going all melty. Sometimes, (sometimes,) I can look at photographs and not see the hideous thing I grew up with. Sometimes, (sometimes,) I think maybe pictures don’t always have to lie.

It is a mental illness this dysmorphia, this problem with reflections, this inability to see the self as others see it. It’s a hallmark of schizophrenia, the fear of portals consuming souls, the fear of what dangerous things lie beyond the looking glass. But it’s not just the schizoid, it also shows up in anxiety. My wife sometimes has problems with windows at night, they reflect you see. But it also shows up with eating disorders. But it also shows up with so many things. Which is why I cite Islam. The justification for the interdiction against images of humans is avoidance of idolatry, but I can’t help but wonder if there’s some other reason, something more they know. Islam also requires the immediate disposal of hair and fingernail trimmings; things which are uncanny, things which disturb and disgust when encountered unexpectedly.

The dysmorphia goes beyond dysphoria; which is to say, it’s not just being trans. I follow plenty of trans ladies who post the most gorgeous selfies. And while I do not know their minds, many post without comment so I can’t help but to think they do not suffer the same demons. But then, many others do post with comment. Selfies can be a form of radical self-love, an act of reclaiming the body that has been denied us so long, an act of resistance against the perpetual bombardment of messages telling us we’re ugly, telling us we’re not good enough, telling us we don’t have the right kind of shape. This need for self-love is not just for trans women, but also black women, but also disabled women, but also all women.

Sometimes I think, “I want this love. I deserve this love.” Then the world reminds me: pictures are dangerous. Living as a woman online is dangerous; especially as an outspoken woman, a difficult woman, a challenging woman. Clades like GG and 4chan seek out women like me for destruction. Pictures are evidence and all evidence will be used against you. I’ve spent my whole life trying to break away from my family, from the invisibility they instilled in me, from the perpetual need to annihilate the self. I need this love, but I know not where to find it. Taking pictures at all is hard enough, the idea of sharing them fills me with terror. I’ve spent my whole life breaking away from how others see my body. My whole life breaking away from the pain that body caused my mind. I know not how to love the body. Know not how to see the body as more than mere possession, how to see the body as the very self. Growing up I was taught the greatest sin is the love of self. And though I’ve discarded Christianity, it’s much harder to discard their commandment to hate thyself.

Sometimes I think, “I need this love.” But how does one overcome the terror?

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A lot’s been happening this last month. I’ve started at least half a dozen posts, but can’t seem to find the time/energy to finish any of them. Whence the radio silence. So, in lieu of interesting content, an update on life:

At the end of February I solved the hard problem in my thesis!! I’ve been banging my head against that problem for well over a year. So how’d it happen? I had a meeting with one of my advisors to talk about coalgebras for a different project entirely, and something in there got me thinking. (ProTip: always think more about coalgebras.) That weekend I decided to take a whack at the problem again and managed to get everything to work out. Ultimately the solution involves a novel extension to the standard approach for proving strong normalization via logical predicates. On March 4th I gave an impromptu talk at the local PL seminar about the technique. And was planning on spending the next week and a half cranking out an ICFP submission detailing the technique (since it’s of interest outside my thesis), but then...

I’ve mentioned before about how my mother’s been dying. Near the end of February she went to the hospital again; since which my dad gave me and my siblings daily updates on what’s happening. Then on the 6th my dad called and said I needed to come out. So me and L booked a last-minute trip out there for a couple days. It was... stressful, to put it mildly. But I got to catch up with two of my nieces, so that part was cool. On the 30th it was official. The funeral is in the next couple days.

A week after getting back from the last-minute trip to Maryland, me and L went on our anniversary holiday. Last year we rented a cabin in the woods, and it was pretty awesome being woken up by cows and going for hikes. So we decided to do it again this year, though this time we went to Brown county here in Indiana (last year it was in Ohio). OMG this state is misogynistic, homophobic, and transphobic! I mean, I’ve known this; but Bloomington is a lot better about hiding it than the rest of the state. Plus, there wasn’t really anywhere good for hiking. The cabin itself was pretty nice, but the rest: ugh. We ended up deciding to head home a day early; just couldn’t deal with how awful the people there were. At least we got to bond over how terrible it all was ;)

And then going on a week ago, my kidneys decided it’s time to murder me again. I’ve gone to the ER three times already for kidney stones, so I’m pretty clear on what the symptoms are. Figured this time I’d try to see a doctor first, to get some pain meds before I need to be hospitalized again. To which I got to revisit that fabulous experience where doctors refuse to acknowledge my pain let alone do anything about it. Gotta love it when you’re nauseous, experiencing visual artifacts/hallucinations, completely out of it, and barely able to carry on a conversation but the doctors have already decided before even seeing you that they’re not going to prescribe anything. I never actually get sick from my pain-nausea, no matter how bad it is; I only get sick from the anti-nausea meds they sneak in with major painkillers. But I wish I could/did get sick, dirty up her office a bit: historically that’s been the only thing to make drs take me seriously.

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At the beginning of the year I decided to try writing more regularly. For a while things went as planned, but the last few weeks have been sparse. Been dealing with some stuff, and since announcing I’ve accepted the job at Google —or actually, since announcing I was on the job market last fall— I’ve been reluctant to talk about my crazy. I feel hypocritical about it. I know I shouldn’t; most folks don’t talk. But of course, that’s why I feel like a hypocrite. I go on about being open and trying to normalize mental illness, but then when it really matters I go and hide in the closet like everyone else afraid for their jobs. Plus, part of me is all I don’t want to be just another whiny brat on the internet. I know this comes from internalized saneism and puritanical stoicism and all the other repressive shit that makes me want to speak out in the first place, but still, the knowing doesn’t help so much as I’d like for deconstructing that internalized selfhate.

Aside from the internal turmoil, things’ve been going well. (Which, again, makes me feel like shit: for bitching when “I have it good”.) Me and L have been getting shit done in prep for moving out to Mountain View or wherever thereabouts. Been making progress on getting my dissertation rolling again. And finally completed my old task on Hakaru, so now I can move on to new / more interesting stuff with the overall project. Our anniversary is coming up, and we’ve planned our trip. We got our taxes done last weekend and’ll be getting a sizeable return, which’ll help for covering all the incidentals with moving. (Google does cover moving expenses, but those’re payed out on the first paycheck which will, of course, come after we’ve moved.) I went and saw an OT last week re getting splints; got some plastic ones to try out for a bit to be sure they help / are what I want: they do, and are. The followup appointment is scheduled this week for taking measurements to get them ordered, will post pics once they arrive :)

Talking with my therapist last time he asked an interesting question, asked about my experiences of “loss”. At first I didn’t have much to say, couldn’t really think of any. But the more I thought the more came out. I’d never really reflected on loss before. When something pervades so much of your life, you stop noticing it after a while; what use is reflecting on a word that describes the ubiquitous? But I’ve had a lot of it lately, stupid little things mostly (there I go minimizing again) but stupid little things that’ve stirred up bigger beasts from the past. I could say more, but what would it help? I've already talked a bit about my drawing (and my mother, and mortality). Suppose I could spend the next couple posts fleshing out other bits, giving them more time than I really feel up to today. We'll see.

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Many of us with disabilities have more than one. This multiplicity is invisiblized by the abled community. When our lives are already assumed to be defined by disability, admitting multiplicity risks the hazard of letting the complexities of disabled lives enter one's mind. But even among the disabled, there's a tendency to focus on the one or two things which most obviously impact our lives. This is a coping mechanism. To cope with lacking spoons, we are always prioritizing our energies, and there is never enough to solve all the things. But also, ableism being what it is, we must be careful never to "complain too much" lest we loose whatever ears we've gained; so we consign our suffering to silence, that we might grasp at crumbs of compassion for hope that when things worsen there may still be someone who'll listen.

I have my "one or two things": depression and cPTSD. And I've mentioned my migraines on occasion, though they're seldom of bloggable interest. But there's one I've never talked about, one I've still not come to terms with myself. That's the thing about chronic pain. Noone ever teaches us about all the things that shouldn't hurt, about all the pains most people don't have. And consequently we come to normalize them, to unsee the ways they make us choose —in small ways at first— to restrict our lives. Last week I met a fabulous girl and we got to talking about disability. And with one sentence she cut through me like a thunderbolt, cut through a silence I hadn't even realized I'd been spinning for years. Her words, so simple:

I have a connective tissue disease

I've suspected it for a couple decades, known it for nearly a decade, but it's never been something I've been allowed to talk about. When a teen complains about joint pain, it is dismissed as an insignificance. When a twentysomething does, everyone older jests and jeers; "just wait till you're my age," they say. Sit down. Shut up. Respect your elders. If you're resilient enough to keep at it, to endure the shame and go to a doctor... well, doctors have ways of silencing things they can't cure. When I first saw a doctor for my knees, he acted like it was nothing, like I was a stupid kid bitching about nothing— despite saying, with surprise in his voice, how my x-rays looked like someone 15–20 years older. When I pressed, when I refused to be cowed, he told me there was nothing modern science could do: I could use a splint, but that'd weaken the muscles and exacerbate the problem; I could try working out to strengthen the muscles —at least, for as long as I could stand the pain— but that'd only slow the inevitable by a couple years at best; it wasn't bad enough for surgery, besides that'd just cause even more damage. "You're young," he said in flat monotone, like words rehearsed without meaning. Like pointing out something broken or left behind, when you really don't care if they hear you. Your coffee. Your wallet. Your tail light. You're young.

The thing about genetic issues is that they pervade everything. It's never a singular problem, it's a cascade of them, a death by ten-thousand papercuts. In my childhood, my mother always had issues with her knees. It was almost a joke how often she went in for surgeries on them; the kind of joke people only mumble and noone laughs at but they tell it anyways because they don't know what else to do. During my early college years, her shoulders started going out. A few years back my sister died spontaneously, and within a few months a cousin joined her. Aortic ruptures. In the last year or so, my mother had an aortic dissection. She survived, but more from luck than anything. I happened to be in Maryland when she was in the hospital, and I visited. She'd also been having catastrophic spinal problems. My parents didn't even bother mentioning it until she went in for the first surgery. It didn't go well. Three followup surgeries later and who knows if any of it did any good. Sitting next to her as she lay in that bed, her hands all locked up in pain, held in mine, I could barely look on her. Because I know I'll live to be crippled and die twisted in pain. She's had enough in-patient PT to be released, and is back home now on out-patient PT. Noone talks about it. But at least noone jokes anymore.

I can't say if it was her heart or her back that somehow managed to convince some doctor to take a closer look. He'd thought she had Marfan syndrome and ordered a genetic screening. Tests came back negative. Followups found it's actually Loeys-Dietz, something that wasn't even discovered until ten years ago, and the docs only knew of it because she'd been admitted to the hospital where they discovered it. There's no point in testing the dead, but there's little doubt about what did my sister and cousin in. I've been checked for aortic problems, and show no symptoms as yet. I'll have to get checked again every couple years.

(One of the funniest things about transitioning is how it's been the healthiest decision I've ever made. If I'd've known all the minor health issues it'd cure, I would've fought harder to do it when I was 18. Among the things it helped was my back. While uncommon, HRT can cause corrections in one's hips and lower ribs. Thanks to the changes in my hips and my center of gravity, I no longer have chronic back pain. Growing up I could never attain correct posture: it caused pain and felt unnatural; whereas now it comes freely and without thinking.)

But the litany of little pains isn't what hurts the most. I used to draw. It used to be my life. The fire in my heart, as maths is the breath in my chest. I'd do it when I wasn't thinking. I'd do it to focus my thinking. I'd come home and spend hours at it. I'd ignore eating to finish a piece. I won awards. I thought I'd make a vocation of it. By halfway through undergrad I could barely finish a small sketch in the margins of my notes. Many of my friends are artists (e.g.), and while I love their work, a hateful demon grows in me every time I see their successes or hear them praised. These days I can barely hold a pencil. My script an ever more illegible shorthand as I try to eke out a few more pages before I resign to sitting behind a computer. (The most creative parts of doing math, for me, needs being written. It is only once I have the sketch of a thing can I put it to pixels.) Just bringing up my art, acknowledging it as something lost rather than as something I lost time for, crushes me.

That girl, that blessed fabulous girl. A few days after we'd met I asked her about her ring, a beautiful curious thing, like two rings locked together at an angle. Turns out it's a surgical splint for preventing hyperextension. She told me where to get one, and on the bus yesterday I decided to check out their website. Reading through the descriptions of the rings they offer —I don't even... How do you name that emotion when a pain you've had so long you've forgotten it exists is suddenly eased, that lift, that release, that letting go. Like when you find someone who shares your very same marginalization, that feeling where you can just talk, can let words free without censor knowing they have already been understood before they are spoken. That sudden finding oneself not alone. That slow creeping into existence of a future worth looking toward. I had to turn off my browser. Can't be crying on busses. Can't be weak in public.

winterkoninkje: shadowcrane (clean) (Default)

Got back from Vancouver a couple days ago. The return flight was hell, but other than that the trip was pretty good. Got to meet a whole bunch of folks who read my blog (hi!), which was super cool. It always gives me warm fuzzies to know people are actually interested in my stuff. (You'd think I'd get used to it after a while, but no, evidently childhood scars still remain years after developing a solid sense of self-esteem. Go fig.) Of course, now I feel bad about not having written much of late. I have a few posts I've been meaning to write —mostly technical ones—, and I'm thinking I might should try to kick those out as a way to get back into the daily writing habit needed for finishing up my dissertation.

Since handing out my card at ICFP, I've been hacking around on my website. I'm still working on getting my publications/presentations to be properly formatted, and the timestamps in the footers on a couple pages are busted, but other than that I think it's in pretty good shape. I also took part in a keysigning party for the purpose of building a WoT as part of the developing story for how we securely deliver packages in Haskell. My key is up on Keybase as well as on my website (along with all my other contact info).

After a week of great talks, too much drinking, and too little sleep, I met up with a dear friend from undergrad. It's been far far too long since we've had a chance to hang out (alas, he couldn't make the wedding last year), but he's one of those friends you can just fall right back into. It's funny how much can change and yet stay the same. In one of our ambling walks I dragged him into a clothing store —something I never would've done pre-transition. He didn't seem to mind. He just went along like it's the sort of thing we've always done. And it felt to me like the sort of thing we could've always done. Recently he's been ref'ing for roller derby up in Victoria, and after talking about it I'm thinking I might try my hand at it. Sounds like a lot of fun. We have a team in Bloomington, and they're doing a training/recruiting thing, though alas I'll miss it since I'll be in Mountain View on the 14th. I'll see if I can't find some other way to get introduced.

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I don't think I ever mentioned it here but, last semester I took a much-needed sabbatical. The main thing was to take a break from all the pressures of work and grad school and get back into a healthy headspace. Along the way I ended up pretty much dropping off the internet entirely. So if you've been missing me from various mailing lists and online communities, that's why. I'm back now. If you've tried getting in touch by email, irc, etc, and don't hear from me in the next few weeks, feel free ping me again.

This semester I'm teaching foundations of programming language theory with Jeremy Siek, and work on the dissertation continues apace. Over the break I had a few breakthrough moments thinking about the type system for chiastic lambda-calculi— which should help to clean up the normal forms for terms, as well as making room for extending the theory to include eta-conversion. Once the dust settles a bit I'll write some posts about it, as well as continuing the unification-fd tutorial I started last month.

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[Content warning: discussion of rape culture and child abuse]

Transitioning is a mindfuck. Doesn't matter how prepared you are, how sure you are, how long and deeply you've thought about gender/sexuality issues. Outside of transitioning1 we have no way of inhabiting more than one position in any given discourse. Sure, we can understand other positions on an intellectual level, we may even sympathize with them, but we cannot empathize with what we have not ourselves experienced, and even having experienced something in the past does not mean we can continue to empathize with it in the present. Julia Serano emphasizes this epistemic limit in her books. And it's no wonder that no matter how prepared you may be, completely uprooting your sense of self and reconfiguring the way the world sees, interprets, and interacts with you is going to fundamentally alter whatever notions you had going into it all.

Since transitioning none of the major details of my identity have changed. I'm still a woman. Still feminine. Still a flaming lesbo. Still kinky, poly, and childfree. Still attracted to the same sorts of people. Still into the same sorts of fashion (though now I can finally act on that). Still interested in all the same topics, authors, and academic pursuits. And yet, despite —or perhaps because of— all this consistency, transitioning is still a mindfuck.

Read more... )
winterkoninkje: shadowcrane (clean) (Default)

A lot of ink has been spilt over trigger warnings lately. And I don't want to write about it because I feel like I don't have much to add to the conversation. But when I stop, that feeling nags at me. You can't think with your mouth open; and as someone who always had issues keeping her damn mouth shut, it took me a long time to learn that to listen you must be silent. ... And yet. ... And yet, when someone experiences strong emotions about her own marginalization, but feels compelled to self-silence: that's when you need to listen harder.

Because there are a lot of voices I know full well, and I don't hear them talking.

I know them because they're the voices of my friends, and among friends we talk about things we don't talk about. In the workaday world we put on our faces and never hint at the behemoths raging through our china cabinets. And when we let down our hair, those faces stay on, because you always know who might be listening. And behind closed doors, still, we keep them on because elsewise love would be too tragic. But in secret spaces, we talk. We are, every one of us, damaged. I may not know who hurt you yet, I may not know your story of pain, but I never assume there isn't one; because every single person I've known, when we get close enough, they tell me things we don't talk about. Sometimes it takes years before they feel safe enough, sometimes they never feel safe enough, but if they've ever lowered their guard to me, they've told me. Every. single. person.

We are born and raised and live in a world drenched in abuse. And that abuse doesn't leave scars, it leaves open wounds waiting to have dirt rubbed in them. The first rule of what doesn't happen is that it cannot be spoken of. So healing only happens in those secret spaces, one-on-one, in the dark of night, far far from friends and strangers alike. This privatization of healing only compounds the problem of abuse. When we cannot see past others' faces, when we cannot see the living wounds they bear, when we do not hear their daily resistance against reiterations of violence, we come to think that somehow maybe they haven't been hurt as badly as we. When we see our own people succeed, or see leaders of resistance and "survivors" and "healed" voices speaking up against the injustice of the world, we think that somehow maybe they must be stronger than us, more resilient than us, more determined than us. When we cannot witness their struggle, we think that somehow maybe when they go to bed at nights they need not take the time to scrub out that daily dirt from their wounds. And when we cannot bear that witness, we see ourselves as lesser, broken, impostors.

These are the voices I do not hear speaking out, or hear speaking in only roundabout whispers. These are the voices for whom trigger warnings are writ. As so precisely put by Aoife,

Here's something I need you to understand: the vast majority of students when 'triggered' don't write howlers to department heads or flip laptops over in crowded classrooms for YouTube counts.

On the contrary, they most often shut down and collapse into numbness.

That numbness, that collapse, is the last tool our minds have to keep our faces in place when some sudden shock reopens sore wounds. The second rule of what we do not talk about is that wounds never heal, not entirely. We —some of us— can manage not flinching when someone raises their hand. We —some of us— learn to laugh along when someone touches our back. We —some of us— learn to feel safe in a room alone with a man. We —some of us— learn to turn blind to the "tranny" jokes, to the blackface, to the jibes about trailer parks and country living, to the "sex" scene where she lay sleeping, the scene where he takes the other man 'round back, the man who slaps his wife, the mother who cuffs her child, being told to go pick a switch, to the child starving on the street, to the college kids playing "tricks" on the homeless. We —some of us— learn to live as stone. But stone don't heal, and we all have our rituals of self-care we won't talk about. But when everywhere all you ever see is stone, you know your flesh will never make it if the light still shines in your eyes.

And I too am guilty of this silence culture. Because the fact of the matter is, in this day and age, to speak is to jeopardize my career. I can talk about being trans or being a dyke, and I can at least pretend that the laws on the books will mean a damn. But if I talk about my childhood, I won't be seen as an adult. If I talk about my abuse, I won't be seen as stable. If I bring up my mental life, I won't be seen as professional. If I talk about spoons, I won't be seen as reliable. And so I stuff it down and self-silence and hide what it's like, that daily living with depression and PTSD, til some trigger sets it off and out comes that rage which grows on silence. Some full-force punch to the gut, some words like "I'm not sure suicide is ever the answer" and my eyes go black, and words come out, and they sound nice enough, but every one means "I hate you".

Not to be rude, but sometimes suicide is the answer. It may not be the best answer, but it is an answer. And, unfortunately, sometimes that is all that's required. Sometimes a terrible fucking answer is the only answer to be found.

I say this as someone who's spent more of her life being suicidal than not, as someone who's survived multiple attempts, as someone whose friends have almost invariably spent years being suicidal. Yes, it sucks. And no, it doesn't "solve" anything. But think of the suffering of the victim. It is incredibly difficult to overcome the self-preservation instinct. Profoundly difficult. Imagine the volume of suffering it takes, the depths and duration of misery required to actively overcome the single most powerful compulsion any living creature can experience. There comes a point, long after endurance has already given out, when the full weight of that volume cannot be borne.

Whenever this happens, my thoughts are always with the victim. I cannot help but empathize with that terrible terrible suffering

Because the fact of the matter is, I'm too scared to talk. We live in a culture where suicide is "the easy way" and you're supposed to "take it like a man", but the fact of the matter is noone can take it. We are, every one of us, damaged. We privatize our healing because the first rule of abuse is that it must never be mentioned, must never never be discussed. The learning of silence is the first abuse: it is how we are taught to abuse ourselves, to never never hear that we're not alone.

This isn't about suicide and depression. Isn't about rape and racism. Isn't about violence and neglect. This is about silence. About the words we don't use to not say what you can't talk about. This is about learning to speak using words. About how we must open our mouths in order to listen.

#done

11 Jul 2014 09:42 pm
winterkoninkje: shadowcrane (clean) (Default)

Holy hell, things are bad for everyone.

I've started having PTSD issues again. One of my wife's coworkers got thrown in jail for 24hrs due to a domestic violence accusation (as required by Indiana state law for every accusation with any shred of evidence). Once he got out he filed for divorce because of it, to which his wife shot their son and herself and lit the house on fire— timed at 17 minutes before he was scheduled to (and did) arrive to pick up their son. An online friend of mine was dealing with a family crisis, got dumped by her fiancée, and has been on suicide watch. And now another friend is dealing with a suicide close to her

WTF world? W. T. F?

winterkoninkje: shadowcrane (clean) (Default)

I've forgotten how to write. Somewhere along the way I've forgotten how to say, what I mean. Little sticks and thistles, they burrow under your skin like dry wind and the leaves you brush from your faces. And you find yourself there, looking over, looking out, and turn to tell another how you came to this place, this pretty place, and all you find are tangled weeds and hills and where was the path where you left that friend you thought had come with you

I have half a dozen half written posts, if half written means written and my mind keeps telling me to edit to edit to go over once more, unable to let go, unable to let slip a word lest it falls all out and i somehow say what i somehow mean and someone takes offense. Offence. That word of our times, that police baton with which we beat the helpless, refuse to listen to the stories, those stories once heard we proclaim have "set us free" but we leave the authors beaten, unwilling to look at their lives lest we feel too closely the grip of that truncheon in our fist.

Half a dozen half written posts, weeks of thoughts writ out, on programs and mathematics and words and history. Thoughts I cannot set free. They haunt me, they call me beckoning to spill once again that mental blood to pore and pore over them and wring them dry of every drip of humanity so I can hang out the scraps and let others see how terribly clever i am. I never wanted to be clever, never wanted to be seen like that. I only wanted, once, to be free. From the heartache of a harrowing life, from the illusions and false idols, from my own ignorance. And now these thoughts tie me up in clever little knots, and have me writing bad poetry

winterkoninkje: shadowcrane (clean) (Default)

I woke up feeling terrible last monday, and by midnight I was on a bed in the ER. Spent the next few days in the hospital: had surgery on wednesday, got released on thursday. Since then I've been resting about the house, and have been recovering quickly. It was my first "real" surgery. (I've had other surgical procedures, but they aren't the sort that doctors mean when they ask if you've "had any surgeries".) Before saying what I had done, I'd like to make a point about social awareness.

Do you recognize these symptoms?

  • sharp shooting pain in the chest, possibly extending to shoulders and neck/throat, lightheadedness/dizziness, shortness of breath.
  • dark urine, yellowing skin/eyes, nausea/vomiting, difficulty concentrating, sleepiness.
  • urinating often, increased thirst/hunger, blurry vision, abrasions heal slowly, tingling/pain/numbness in hands/feet.
  • dull pain in the pit of your stomach, possibly extending to back or right shoulder, possibly increasing after eating fatty foots, doesn't abate in different positions, fever and chills.

This day and age I'd expect any moderately educated person to recognize the first three immediately: heart disease, liver disease, and diabetes (type 2). Both heart disease and diabetes have had powerful ad campaigns to increase awareness. Liver disease hasn't had that advantage, but the symptoms of jaundice are mentioned in the side-effect reports of most medications, and they're pretty memorable to boot. The last one I never would have recognized until it happened to me. And, frankly, the ER doctors had a hell of a time figuring out what it might be based only on my symptoms. I felt feverish at the time, though my temperature was normal. This was the first out-and-out attack, so I couldn't talk about how often it happened nor say whether it got worse after eating fatty foods. Knowing all the symptoms now, I can look back and see that this has been a long time coming; but at the moment all I could tell the docs was: intense dull pain in the pit of my stomach, doesn't get better or worse when changing position.

These are the symptoms of gallbladder disease. Women are more than twice as likely as men to get it. Women on hormone replacement therapy are more likely to get it. Many women are hit with it during the end of pregnancy— so many so that nurses remark on the number of cholecystectomy patients with one-week old babies. There's something about estrogen (or fluctuations thereof) that doesn't play nicely with the gallbladder. So I mention this for all the women, especially trans women, in the audience. Of course, none of this is to say that there aren't plenty of men who suffer from the same. Prior to going to the ER I'd heard almost nothing about gallbladder disease, other than knowing that gallstones were a thing. But in the scarce week since then I've lost track of how many women have told me about their cholecystectomies. With how common it is, I think this is one of those diseases that we as a society should be able to recognize— like diabetes, heart attacks, and jaundice.

So yeah, I'm down an organ now. There aren't too many side effects of having your gallbladder removed (compared to removing other organs), though it does mean I'll have to watch my diet. I've been doing that anyways, now it's just different things to look for. I'll have to put the high-protein low-carb diet on hold for a couple months, since I need to reduce fat intake until my body gets used to the new me. Also worth noting: apparently losing weight quickly (as with the 30-pounds I dropped last fall) can increase the risk of gallstones. So if you're dropping weight, you should be sure to monitor things and try to flush/cleanse your gallbladder.

That's it for now. Goodnight and good health.

winterkoninkje: shadowcrane (clean) (Default)

Saturday night I had a fainting spell. Sunday my eyes were burning, I was feverish, weak, and had the beginnings of a migraine. Monday was completely lost in the blaze of a migraine. Tuesday I was starting to feel better— and then, nope; threw up that night. Wednesday I awoke with what felt like a raging sinus infection; spent the whole day in a haze of sudafed and ibuprofen, and went through literally an entire box of tissues.

Starting to feel a little better this morning, so I figure this is the end. It was a nice life. Y'might want to bar your doors today, just in case it's locusts.

winterkoninkje: shadowcrane (clean) (Default)

Last friday I passed my qualifying examinations! So now, all I have left is a bunch of paperwork about that and then proposing, writing, and defending the dissertation itself. So, in about a year or so I'll be on the job market. And, much as I despise job hunting, I can't wait!

Since defending the quals I've been spending far too much time playing Persona 3 Portable. I've played P3FES, but P3P adds a female protagonist option which changes a bunch of the social interactions, so I've been playing through that side of things. Other than the heterosexual assumptions about the relationships, I've been loving it. More rpgs should have female protagonists. That's one of the reasons I've always loved FF6. Also a big part of why I found FF13 compelling. (Though, tbh: while Lightning is awesome as a protagonist, Vanille is definitely my favorite character :) And a big part of the powerfulness of Kreia as a character in KotOR2 stems from her interactions with the canonically-female protagonist.

Speaking of women. I've been presenting as female for a couple months now, and since I have no intention of stopping nor hiding that fact, I've decided to move T-Day forward. Basically, for those who haven't already switched over to the right pronouns etc: T-Day is today. I've sent emails to the department heads in order to get them to send out the "official" memo; so if you haven't gotten it yet, that should show up on monday or tuesday.

The next couple months are going to be hectic with paper writing. I'm hoping to get a paper on syntax-based sentiment-analysis using matrix-space semantics into one of the CL conferences with deadlines this March. No Haskell involved in that one, though I'll probably spend a few posts discussing the semantic model, which may be of interest to y'all. I'm also planning on getting the work from my first qual paper published; that paper was about Posta, a functional library for interactive/online/incremental tagging with HMMs. Here I'm planning to target journals rather than conferences, and it'll spread out over a few papers: one on the overall system (which I need to actually push up to Hackage), one on the higher-order anytime n-best extraction algorithm, and one on reformulating HMM algorithms in terms of foldl and scanl (this may be combined with the HO-AnB paper, length permitting). All of these would be targeting the linguistics audience. Using folds and scans is old-hat in functional programming; my particular goal with that paper is exposing linguists to the tools of FP and how they can be used to greatly simplify how we describe our algorithms. Once those are out of the way I might also see about writing up a functional pearl on the smoothing library I presented at AMMCS a few years back.

winterkoninkje: shadowcrane (clean) (Default)

Heads up y'all. My email at Free Geek will be going away in about a month. The following addresses are all still valid and point to the right place:

  • cpan.org — for Perl folks
  • community.haskell.org — for Haskell folks
  • alumni.reed.edu — for Reedies
  • indiana.edu — for business
  • gmail.com — for friends
If you don't have one of those, email me (at freegeek.org) and I'll hook you up.

winterkoninkje: shadowcrane (clean) (Default)

There are three parts to this post. Everyone should read the first two sections, especially the second section. Haskellers should also be sure to read the third section.

The Announcement

If you don't yet know: I'm transgender. My sense of gender and self have never aligned with my physical appearance, and I’ve spent most of my life dealing with this fact. This is not an acquired condition nor a recent change; it is an intrinsic and life-long part of who I am. I began the process of transitioning half a year ago and, over the next six months or so, I will complete the transition to living as a woman full-time.

Many of my followers are already familiar with transgender issues, but since this is a public announcement I assume many of you are not. There are numerous resources online for learning more, but I find the PFLAG pamphlet to be a particularly good place to start. If you still have any questions after reading that, I can provide additional resources and am willing to answer questions.

How to respond

This is going to depend on how you know me.

If we interact predominantly online
This includes everyone in the Haskell community (both online and academically), as well as everyone from Reddit, Twitter, etc. Henceforth, please use feminine pronouns (she/her/hers) exclusively when referring to me. I understand this will take some getting used to, but it will soon become second nature.
If we interact predominantly in person
I'd prefer you use feminine pronouns (she/her/hers) when referring to me, especially when online and when mentioning me anonymously. But, for the time being, masculine pronouns (he/him/his) are still acceptable. Sometime in the spring I will send another announcement around letting you know when "T-day" is. After that date, I will be presenting as female full-time and will no longer tolerate masculine pronouns.

PSA for Haskellers

I shouldn't have to say this, but since there were some complaints about the "homosexual propaganda" in my recent posts, may I remind my readers of The Planet Haskell policies regarding political and religious content. I rarely post political content, but am well within the guidelines in doing so. The stated mission of Planet Haskell is to "show what is happening in the community, what people are thinking about or doing". I am an active and well-known member of the Haskell community, and the violence endured by trans people is something I've been thinking a lot about lately. When Chung-chieh Shan gave the 2013 Haskell Symposium program chair report, he made a specific point of highlighting the effects of sexism, racism, homophobia, and transphobia in driving people out of the Haskell community. Therefore, I think it is fair to say that these issues are pertinent, above and beyond my personal involvement with them.

That said, I do not intend to discuss trans issues at length on this blog. Nevertheless, on occasion, these issues will come up because I refuse to live in silence and shame for who I am.

winterkoninkje: shadowcrane (clean) (Default)

It's been a few months since my last dieting update, and things've been going great.

Weight
In the first month I lost 13 pounds, but over the second month I didn't lose any. Apparently this sort of plateauing happens; so I've tweaked things a bit, hoping to get back on track. Last week I finally got a scale, so I can keep track of things more often than once a month. And if it's to be believed, I've lost an additional 5 pounds over the last couple weeks.
Cholesterol
Had another round of bloodwork done a fortnight ago. My cholesterol numbers are down by 90 points. I didn't get a copy of the results, so I can't remember which of the numbers that is exactly; but either way, it's a huge step from extremely high to borderline high.
Blood Sugar
My FDA is down from 6.2 (borderline pre-diabetic) to 5.3 (normal), which is awesome. Don't recall what the fasting random numbers were, but those are less reliable anyways.

And here's the graphic for my macronutrients over the last four weeks and the last three months. Looks like I've been averaging around 5::6, protein to carbs; which ain't bad, but it'd be nice if I can figure out a way to get it closer to 6::5 or 3::2.

wtf.

1 Oct 2013 03:21 pm
winterkoninkje: shadowcrane (clean) (Default)

So, I just found out that an old friend of mine:

I'm totally torn up about this; both about whatever happened, and about the ongoing reaction. Meanwhile, I can't help but recall the all too timely post of a different friend of mine about what it means to say "innocent until proven guilty".

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