Saturday, July 23, 2016

Satuday Serial: Alice's Adventures In Wonderland part 1

Alice's Adventures In Wonderland

01. Down The Rabbit Hole
02. The Pool of Tears
03. A Caucus Race & A Long Tale
04. The Rabbit Sends In A Little Bill
05. Advice From a Caterpillar
06. Pig And Pepper

Courtesy Librivox.org / Archive.org

Friday, July 22, 2016

I gave up and spent most of yesterday curled up in bed. I hurt a lot less physically; for some reason, a metric fuckton of dextromethorphan to the brain seems to reboot a lot of things, often including angry nerves. I've no idea why. It's not even an analgesic; I use it for pain control when I've run out of other options because it's a dissociative, and if you're not in radio contact with your body parts, it's really hard for them to bother you.

[It's an NMDA receptor antagonist, if you're curious. A friend of mine who's taken recreational doses of DXM and has had nitrous oxide for dental surgery says they feel more or less the same. This also inadvertently creeped out the dentist. She'd done the first quite a few times before the second, and was sufficiently used to handling herself in that state that she was able to chatter and ask questions whenever he took his hands out of her mouth. Most people do not ask for their loose teeth back, and they definitely do not request a better look at the tray of surgical instruments. The dentist was rather disconcerted.]

Other than that I've mainly been feeding the rats to make myself feel better, and counting down the hours until Trump somehow opens the Gates of Hell and we all die in a hail of nuclear fire. I'm keeping track of things, sort of, by watching The Late Show. Please don't take this as an invitation to tell me what's going on. I can barely handle any of this even through the filter of comedy, never mind from an actual news channel. I want to remain ignorant enough to continue functioning. I live in a major port city, which would be both a valuable civilian target and a vital military one. When the world ends, I want my last conscious thought to be, "...the hell is that noise?"

[Kidding. Sort of. Don't actually tell me anything. Facebook is bad enough, with the trending sidebar.]

I recall commenting when Trump was on The Late Show last year that I thought the 'I can't remember whether you said it, or my old alter-ego did' gag Colbert did at the end of the interview was supposed to be a specific and very pointed insult. Colbert always described that character as an ignorant and unteachable narcissist, and that's when he felt like being nice and pointing out why performing the part on TV could be useful criticism. I figured the absolute worst thing he could think of to say about Donald Trump was that "Stephen Colbert" supported him wholeheartedly. I see from "The Wørd" on Monday's show that my guess on that was about 400% correct.

Colbert's opening song was a colossal explicit Take That + Fuck You to... you know, he's not even really so much mad at the GOP anymore, he's zeroing in on whoever it is that's gone from 'railroading' to 'off the rails' this year. He is pissed enough that he is actually getting mean. Political comedy is not necessarily nice or emotionally-sensitive at the best of times, but normally he seems to try to keep it to things like 'your politics are hypocritical' or 'your voting record is abysmal' or 'this law is abhorrent'. He's given up now and realized that not only he does not like any of these people as politicians, but he can't even pretend he thinks they're acceptable as people.

There were a lot of much more subtle fuck-yous in that show, too. There's a point in the musical number where all the dancers pair off and do some steps with a partner. Colbert ends up dancing with one of the men. It's not a sight gag, and there is no practical staging reason for the choreography to be jiggered like that. There's also no way that happened by mistake.

In his monologue, Colbert mentions the enormous degree of obliviousness required to play anything by Queen at the Republican National Convention. You don't realize how much people, even comedians, still feel like they'd have to coyly hint that the GOP ought to have figured Freddie was NOKD until you hear Colbert actually say the word "bisexual". Like, casually, in a sentence. Because Freddie Mercury was bisexual, and right at this very moment is one of the few instances in life when this fact is genuinely relevant and important to tens of millions of perfect strangers.

One of the skits features Colbert, desperate for help, tromping all the way out to a blissfully isolated cabin in the woods to drag Jon Stewart out of retirement to help him cover the convention. It's revealed at the end that TDS Head Anchor (Emeritus) Stewart has more or less set up housekeeping out there with "Stephen Colbert". That the two personas are carrying on an affair so long-running it's tantamount to a marriage has been a steady gag ever since somebody thought it would be funny if "Colbert" turned out to be a closet case, but they ship it so hard at this point that Stewart ends the sketch by vainly nagging "Colbert" to "call if you're going to be late!" I can't help but think they enjoy knowing that the very idea might give all the right people a permanent facial tic.

[The obvious joke would be that the two characters hate each other so hard they can't stay apart, but it's not played as Slap Slap Kiss, and never has been. The Head Anchor is being rapidly driven mad by the world, "Colbert" is completely mad already, and they're inseparable anyway. I also can't help but think that there is some implied commentary in that, but none of the people who need to hear it have noticed.]

Colbert talks to the Univisión reporter lady during his convention floor sketch. A bit of it is in Spanish. Years ago, Colbert told a congressional committee on migrant workers, "I don't really speak Spanish very well." This seems to translate to, "I don't really speak Spanish very well," since we have only been watching him troll people in it, off and on, for like twenty years now.

At one point, in character as Flickerman, he hollers up at the broadcast booth, "Have Matt Lauer washed and brought to my tent!" Inasmuch as he also tells them that his weasel (actual prop, not euphemism) wishes to make love to someone's facial hair, the gag seems not to be that he's asking for an attractive man, but that he's just gone hedonistically insane. The other news people seem to think he's very amusing.

The interview, with Zoe Saldana, is a little heartbreaking. Saldana, who is a bilingual English/Spanish speaker with parents from the Dominican Republic and Puerto Rico, admits to being legitimately worried about what might happen if Trump is elected. Up to that point, Colbert has spent his entire show looking like he's doing his best to make everyone laugh but frankly really really needs a hug, for serious, immediately tries to reassure her. I don't know how well it worked, because he sounds like he needs convincing as much as she does.

This isn't helping. Everyone's scared.

I'm going to go feed the rats something else. Someone should be having a good day, anyway.

Thursday, July 21, 2016

Neuropathic pain is interesting. I'm not just saying that because I topped out on OTC painkillers for the day hours ago and progressed to feeding myself dextromethorphan -- although, admittedly, that does help. Intellectualization is sometimes the best way to get through the day with a plurality of your marbles intact.

It doesn't hurt quite the same way as other things do. It's poorly-localized, for a start. If you sprain your ankle and then try to put weight on it, your ankle immediately goes OW FUCKER DON'T DO THAT. There's definitely damage, and it's definitely your ankle; you couldn't miss it if you tried. If you get to the clinic and the doctor grabs your foot and tries to move it from side to side, you'll shout the exact same thing at him that your ankle shouted at you, and you will immediately be able to point at the part of you that you want him to stop poking at, at least until someone gives you a whole fucking lot of Vicodin.

When a nerve is pissed at you, it can be surprisingly hard to pinpoint where the problem is. Right now, the best I can do is "left hip". It doesn't seem to be the actual joint out of place; my range of motion is fine, and no particular position or movement hurts any more or less than any other. Nothing grinds. It doesn't seem to be muscular, either; nothing is sore and there's no obvious goose-egg or bruise anywhere. It's just continually and annoyingly uncomfortable, like the secondary echoes you get when you bang your funny bone on something. Not the lightning-fast main bolt, the intense pain that hollows out your insides and makes you quit breathing for a second. More the twinges that radiate out to your fingers and up to your shoulder. It hurts, but it's no identifiable kind of hurt, and it's not really in one specific place. You know where it comes from if you hammer your elbow on the arm of your chair, but imagine having that kind of echo and not knowing what exactly you bumped to make it happen. It's just... wrong, and on-edge.

I'm about 75% sure I did this to myself. One of the really big muscle knots was bugging me right before it happened, so I took a lacrosse ball and rolled it out one night, then went to bed. That was a tactical error. That knot was holding something important in place. I usually sound like a string of firecrackers when I wake up, or perhaps some sort of avant garde John Cage piece meant to be performed by several family-size bowls of very angry Rice Krispies. The morning after I killed off the annoying knot, I also got a cacophony of loud chalky snap noises all around my pelvis, which is slightly more unusual.

See, I pop things all the time. I can refrain for a while, because I know knuckle-noises annoy some people, but not for all that long, or I start to feel like I'm rusting in place. Most of the alarming crackle noises joints make are cavitation pops -- joints that have synovial fluid cushioning them also have some trace gases dissolved in that fluid. If you can pull or tilt the surfaces of the joint far enough apart, you can get the little gas bubbles to fuse into one big bubble, and then collapse in on itself, which is what makes the noise. A pop you can't immediately repeat is probably cavitation; it takes a bit of time for the gas to sort itself out into bubbles so you can do it again.

Any joint that has fluid and articulates can pop. Most people have popped knuckles at some point. Probably also the odd toe or mid-back (thoracic vertebrae). A lot of people can also pop their lower back (lumbar vertebrae), neck (cervical vertebrae), or jaw (temporomandibular joint). Hips and shoulders don't usually stay in one place long enough for bubbles, but depending on your range of motion, you might also have popped your knees or elbows. I can pop my fucking clavicles, and I do on a regular basis. Also my ankles, whenever I sit seza with my weight on my heels, and my kneecaps whenever I kneel. Usually on purpose, since getting them out of the way makes the kneeling more comfortable.

Other things make a sort of clicking sound. These are usually ligaments sliding over something else and snapping out of the way, and are infinitely repeatable. My wrists make a little ticking noise if I rotate them right. A lot of peoples' hips and shoulders start doing this as they age, I think, although usually it doesn't start until they're older than I am now. This is also pretty harmless. If it doesn't hurt, then the ligament hasn't gotten locked up anywhere it shouldn't be, and you're fine.

The big loud chalky snap-clunk sounds, on the other hand, generally mean that I have dislocated something fairly important. I didn't realize this until embarrassingly recently. It makes a big jarring thunk when I get things back in place, but doesn't really hurt, as such, so I had assumed it couldn't be an actual dislocation. Those things make people scream at emergency department nurses, you know? You have to give them muscle relaxants for the spasms and opioids for the pain, and scare up one of the burly orderlies to help. Then I thought about it for a while, and realized that mechanically, I'd been reducing things like hip dislocations the same way doctors do; mine just don't hurt, so there's no screaming and no muscle spasms, and I can do it myself.

[For the record: Lean back on my arms to take the weight off that hip, apply traction by digging in that heel and pulling with my calf, then rack the opposite hip straight back while pushing up with the gluteal muscles on the displaced side. The idea is to extend and pull to separate the joint slightly, then push the ball up and over the edge of the socket to snap everything back into place. Normal people have this done for them by having a nurse apply a shitton of drugs and then hold them steady while the doctor yanks rather hard on the distal end of the limb. The object is to get it done as quickly as possible and on the first try, so that it only hurts like a motherfucker once.]

I have trouble sometimes realizing that it's actually pain that's making me cranky until I stop and pay attention. I've gotten good at a sort of subconscious triage: Is something hurting because it's actually damaged? Can I do anything about it? It all gets sorted into "yes/yes, I can fix it now", "yes/yes, but not at this exact moment", "yes/no, I need to call an actual doctor", and "no/probably nothing very effective". If I'm legit sick or a limb is busted or something else reasonably concrete, I make an effort to do something sensible about it. I spent a lot of college forcibly training myself to let other people take care of me when I felt shitty. My mother's reaction to illness about 90% of the time boiled down to 'you're clearly malingering, but I'll let you get away with it as long as you don't remind me you're in the house', which did not exactly teach me how to deal with people trying to nurse me back to health.

But pissed-off nerves? Body just kind of generally complainy? Not really a whole lot you can do there. I can't not use my entire back, that's not how this bipedal thing works. Shoulders and hips are kind of necessary. I just ignore it until I'm stuck on the train home at the end of the day going, why do I feel like I'm about to burst into tears? And then I realize, it's because a thing hurts, and there's no position I can sit or stand in that makes it not hurt, and it's been doing that for several days now with no signs of stopping. Keeping that at bay makes me very tired, and being very tired makes it infinitely more likely I will cry over random pop songs like an emo teenager.

I suppose one of the "nice" things about the pain not being connected to anything in particular is that doing things doesn't hurt appreciably more than not doing things, so there's not much temptation to sit down and do nothing. Bit like all my social interactions as a child, really. The only feedback I'm going to get is "general unpleasantness" no matter what I do, so I might as well just keep my head down and bull through my day.

The resemblance unfortunately ends there. I went through this same stage with the social things, where I was honestly kind of mad at being informed that being that unhappy was not normal and that in fact other people weren't. It isn't fun, knowing that there's a better alternative that I should have been told about years ago. In that case it turned out that I could join the other not-unhappy people by learning how society worked and finding myself a better class of friends. The issue of malfunctioning hips may be one that I can neither improve nor learn how to avoid by figuring out more about how it works, which is by far my least favorite class of problem.

How can there be a thing I cannot think my way around? Madness.

Sunday, July 17, 2016

I've never particularly understood Amy Winehouse. The fuss, I mean. She was very talented, but the attention paid to that took a distant second to the attention paid to her problems. I mean this in the most respectful and non-judgmental way possible, but the woman was a total train wreck. One of the reasons I end up digging into the lives of a lot more men than women here is that for some reason, women don't seem to be allowed to be famous for being clever unless they are also completely dysfunctional.

It's not usually very interesting. I've dealt with way more dysfunctional people in my life than I ever wanted to -- including, sometimes, me -- and there's not really a lot of variation. Most people who torpedo their lives repeatedly will do it the same way every time. Everyone, from children all the way out to the odd serial killer, who lies about who they are or what they're up to is hiding the same damn secret, which is that they want to avoid whatever reaction they think the truth will get from everyone else. It gets old quick.

Winehouse seems not to have been a terrible person. My assessment of people is not always in line with the standard. Most notably, weird interpersonal behavior has to be very weird for the Uncanny Valley effect to kick in and make me start wondering what's going on. (I have a perfect 0.0% hit rate in spotting which of my friends are on the autistic spectrum.) I have to watch you interact with someone else before I can figure out what normal people probably think of you; consequently, I put a lot of stock in 'the measure of a man is the company he keeps'. Winehouse was a good friend of Noel Fielding, who is hands down one of the nicest media figures I've ever run across, and who has limited to non-existent patience with dickish behavior, at least in front of cameras. Her other friends, I don't know anything about, but a rather high proportion of them burst into tears when asked about her, even years after her death. Whoever she was, a lot of people miss her very badly.

Her art makes me uncomfortable. I find it difficult to watch, in the same way I find it difficult to watch the latest few rounds of Jeremy Brett's Sherlock Holmes films -- she is very sick, and everybody knows it. All of her vocals sound drunk or high to me. This may have been intentional; she was imitating the style of a lot of famous jazz singers, who typically were drunk or high when they cut records. But I also have yet to see a single music video or live performance where she moves like she's all present and accounted for. She is terribly thin in all the clips. The wig looks as if it weighs as much as the rest of her; I assume the ends are tatted and unbrushed because that's her look. 'Method acting' is most charitable conclusion I can come to.

"Rehab" gave me the willies even before she died. I don't think it's glorifying drug and alcohol use; if you watch the video, it's pretty clear the idea is that she's fucked up and the people trying to push her into rehab have a point.

A lot of people seem to think she was bipolar or borderline. I don't know enough about her that didn't come through crap tabloid reporting to comment. It seems to have been an open secret that she had some sort of eating disorder -- bulimia is the one I see cited most. None of these things preclude being a decent, likable person. I realize that most of the really famous candid footage of Winehouse is of her staggering around in a singlet and her colossal wig, shouting vulgarities at the paparazzi, but frankly if those vultures swarmed me as much as they did her, I'd probably do the same thing while stone-cold fucking sober. There are other clips of friends doing things like trying patiently to get her to go inside her house and go to bed, and she actually doesn't seem to be all that combative -- just incredibly shitfaced.

Many of her friends are upset that she obviously had problems and "no one saved her". They seem genuine about it, but of course, everyone always is; it's a common sentiment among people who have lost a loved one to personal issues that our society sees as a mental or moral sickness, rather than accident or physical illness. The hard fact of it is, you can't save someone who doesn't want to be saved. I see suggestions that she might have gotten something out of having someone try to save her, but that's different from wanting to change, or wanting to have something magically reach in and change you from outside.

There's another hard fact here, one that upsets people even more than not having a remote control for their suffering loved ones, and that is that 'problems' are not separable from 'person'. I want to yell at the TV every time I watch one of my endless series of true crime shows and see a parent come on the screen explaining that their missing daughter couldn't have taken that many drugs because it "wasn't her". Yes, it was. Yes it fucking was. All of the factors that made your daughter take all those drugs are things that were always there, in her temperament and personality. They were not new things that were magically induced by the presence of heroin, or cocaine, or alcohol. This is not a case of demonic possession. You cannot force anyone to go back to acting the way you want them to by discarding elements of their personality you don't like. They're not taking drugs to piss you off; they're doing it because something about the interaction of their personality and whatever situation they're in makes drugs the most appealing way to deal.

I get especially angry over this last one. I don't know if I'm uncommonly insightful or just accidentally in the right place to see this or what, but I am well aware that every single thing I have issues with is exactly the same as some element of myself that I like and use every goddamn day, only turned up to 11 and with the knob broken off. The overload that sometimes makes me crawl into a hole and pull the hole in after me is caused by the exact same thing that makes me super-sharp and observant when the input is not jacked so high it clips. My wonky hip, back problems, myopia, and migraine headaches are fundamentally caused by the exact same mutation that made me almost literally two-thirds leg, gave me a ridiculously wide vocal range, and lets me do crazy-bendy things as a dancer.

I veto proposals for blanket treatment of these things for the same reason Amy Winehouse apparently did: If you completely shut down everything that ever gives me trouble, you would completely shut down me. I want to hit things whenever I hear someone talking about mental illness or disease or addiction as some kind of creeping bogeyman stealing in from outside, that you're supposed to wrestle with for the rest of your life, lest it take over. This is madness. More to the point, I can't think of a better way to set someone up to fail, over and over again, until the day they goddamn die. 'You're broken and we can't do anything about it, but you're still obliged to pretend to not be broken every waking minute of your life. You're also not allowed to use any of the coping mechanisms you've worked out for yourself anymore. Here are some official doctor-pills you are allowed to use, but since you're not allowed to buy them for yourself, you'll have to come back to us and assure us that you still agree that you're broken to get more, understanding that we have the power to decide you don't need them, no matter what you say, and take them away again.'

Yeah, I don't have a lot of respect for most rehab programs either. They're useful if you've decided that paradigm looks better than the one you've been following, but that also depends on you internalizing someone else's idea of what 'functional' means, which strikes me as not altogether different from internalizing someone else's idea of what it means to be 'beautiful' or 'well-behaved'. Forcing someone into rehab generally just teaches them how to lie well enough to get out of it again.

I get the feeling that Amy Winehouse -- and others like her -- could not be 'saved' because what other people think 'saved' means is not what it would have meant to them. There is a persistent delusion that the approval you get from other people when you manage to make yourself behave as they expect you to will result in happiness, or something close to it. For a lot of people, it's probably true. For other people, it's not. I'm not saying ethanol poisoning is a great choice, but when the options given to you boil down to 'be yourself to death' or 'live as another personality, which other people have picked for you', it doesn't look so irrational anymore. There is a great deal of well-intentioned psychological cruelty perpetrated against people whose priority is not 'making everyone else's life easier'.

Saturday, July 9, 2016

Why I don't want your pity.

A friend of mine recently wrote a piece about having Ehlers-Danlos Syndrome. In it, she says flat out that she doesn't really talk about it because she doesn't want pity. People behave weirdly when you tell them you're feeling chronically lousy.

I feel especially lousy tonight (ed.: last night, at this point). I am extremely cranky, although not as cranky as I was earlier, because I have holed up in my room and taken a fuckton of drugs. I am cranky enough to explain why I occasionally respond to expressions of sympathy by developing a twitch and looking like I want to punch something.

The tl;dr version is that kind words and sympathy solve a class of problems that can be summed up as "not enough emotional support". This is not a problem I'm having. The problems I'm having are more like "major limb has decided it wants to hurt and not really work right for no reason" and "heat makes me shut down so completely that the most complicated thing I've done in the past two days is lay face-down on the bed and watch six hours of Forensic Files on YouTube". For social reasons, I am not allowed to say this to your face, so every time someone corners me and starts pouring well-wishes onto my head, I have to spend time and energy that I really can't spare managing another person's feelings for the eighty-second time that day. I lie about how I feel a lot because it prevents people from doing this.

You walk away from that conversation feeling validated, because your goal was communicating to someone that you understood they felt bad and you wished they felt better, and you achieved it. I walk away from that conversation feeling like I'm probably a horrible person, because I've spent that entire interaction going 'please either do something concrete to help or shut the fuck up, I just want to finish my day as quickly as possible and go back to bed'.

The reason there is such a disconnect between the kind of things I find helpful and the kind of things people think I'll find helpful is that few people have a good idea what it's like to wake up in the morning and take roll call of the things that are going to hurt today. This is good -- it's a whole lot of no fun, and I don't wish it on anyone. But it means they fill in the gaps in their knowledge by trying to figure out what they think they'd want if they were in my shoes, and they have no good basis for it.

There's an axiom in accident reconstruction: "No one makes bad decisions. They make good decisions based on bad information." The information most people have is based on relatively short-term conditions like breaking a bone or spraining an ankle, or that one time they had honest-to-God influenza and spent two weeks feeling like they'd been run over by a truck full of snot. These things are self-limited, pretty much everyone has some idea how they feel, and you're generally allowed to spend a lot of time not doing stuff while you heal up.

You can't do that when something goes wrong every damn day. I keep telling people that if I dropped everything every time I felt lousy, I'd do nothing with my life but cry and put out fires. I know people ask how I am because they want me to know they care, but... look, do you do status reports at work? Have any of them been of any use at all to anyone, ever? Everyone who wants an honest answer to the question 'how are you doing?' forces me to stop and generate another goddamn TPS report that is just going directly into the notional wastebasket because nobody can do anything about any of the things on it anyway. It takes time and effort, and forcing me to take stock of myself disrupts one of my best coping strategies, which is heroically ignoring anything that can't be fixed and isn't going to kill me.

Here is a woefully incomplete list of things that I actually, right this minute, need:

  • I need my left hip to pop back into place and fucking stay there.
  • I need my right shoulder to stop doing the weird spasm thing.
  • I need painkillers that work.
  • I need summer to not be so hot, or at least for my body to not react to heat by powering everything down, including my brain.
  • I need the barometric pressure to stop making like a yo-yo.
  • I need whatever is releasing orgiastic amounts of pollen to quit that.
  • I need landlords to stop jacking my rent up and forcing me to move again.
  • I need someone to decide that the kind and amount of work I'm capable of doing is worth paying me a living wage, and then I need that someone to actually do it.
  • I need my culture to stop insisting that I can take control of all aspects of my life, and that if things are going badly, it's obviously because I'm not trying hard enough.
  • I need the T to stop hiking fares.
  • I need something, fucking anything, to work correctly the first time and in the normal way, and not devolve into an endless series of hacks and workarounds to compensate for a lack of money and/or an inability to make my brain do that.
Am I pissed at people for not fixing these things for me? No. Most of that is unfixable. The things that aren't are probably not something you, personally, are in a position to remedy. Some of them are probably as much of an obstacle for you as they are for me. But none of those things are anything even remotely like 'I need to be hugged and wept over more'. That is not in the top ten. That is not even in the top thousand. It doesn't matter how many people love me if I starve. I need a lot of other things taken care of more than I need friends to pet my head and coo.

There are other things that may be unique to me. Uttering the words, "You're strong, you'll get through this," is a great way to guarantee I'll never tell you anything of import ever again. I just gave you a rundown of some fairly terrible shit going on, and your response was, "Wow, that sucks, good thing you can handle it without bothering anyone else. All yours, babe." It is the angriest and most alone I ever feel when dealing with this. Self-confidence and willpower do not fix all things, and your encouragement is not the one last magic push I need to overcome adversity. Disney movies are not documentaries. In real life, Dumbo cannot fly. He has to buy an airline ticket like everybody else.

I have had several people tell me that stress is undoubtedly a factor, with the implication that the problems will go away when I stop being under stress. This is tantamount to telling me that I would be fine if I could just stop having life events. While this is true -- you don't often hear dead people complain of joint aches -- this is also not helpful. Even good life events are stressors. Weddings are widely recognized to be hell on everyone, stress-wise, even if you're ecstatic over the idea of officially binding yourself to someone with whom you are deliriously in love. Stability is not necessarily a good thing, either. My life as a teenager was extremely stable, and I hated every minute of it. 

What is the practical takeaway from this? Mainly that 99% of the time you will never know anything is wrong with me, either because it's not worth mentioning, or because I'm lying to you in an effort to avoid having a conversation about it. I write about it here because I have this idea that my main talent is not being smart or funny or creative, it's figuring out how to put into words things other people really want to say but can't get out. It's the thing I get the most, and the most heartfelt, feedback on. Being kinda mutated and broken is a thing that people don't know how to talk about a lot, so off I go.

The 1% of the time I up and tell you that something's wrong, it is really fucking wrong. Stop trying to give me the help you think you'd want if you were me and let me explain what help I actually need. It's probably going to be something like 'please make sure I have a dinner break so I don't go ten hours without food' or 'please do not make me stay until everyone is done with their work if I've already finished mine' or 'please assign me the task that involves working by myself in a quiet room away from the rest of the group and then leave me alone to do it' or 'for the love of God, please figure out how to schedule things so I don't have to show up at 8am, my body thinks that's the middle of the night'. These are not a generalized bid for attention that can be soothed or avoided by assuring me I'm loved. I do not ask for accommodations unless I need them. I don't like being the special snowflake.

Saturday Serial: The Count of Monte Cristo part 28

English:

109. The Assizes
110. The Indictment
111. Expiation
112. The Departure

French:

109. Les assises
110. L'acte d'accusation
111. Expiation
112. Le départ

Courtesy Librivox.org / Archive.org

Tuesday, July 5, 2016

It's not terribly hot out, and it wasn't threatening to dump rain this evening, so Jazmin and her boyfriend and I went out to see the Independence Day* fireworks this year.

For reasons that escape me, Independence Day celebrations have standardized over the years into 1) drinking a lot, 2) barbecuing an assortment of meat products, ideally over open flame, and 3) setting off as many fireworks as you can get your grubby little hands on. The unofficial fourth option, after screwing up one or more of these, is 'trip to the local ER', which will of course endear you to the many fine people who have to come into the hospital to work while everyone else is throwing parties.

The City of Boston leaves the first two things for you to take care of privately, but throws itself into the third with alacrity. Much as the New Years Eve celebrations are televised from Times Square in New York City, the Fourth of July fireworks are broadcast nationally from the Esplanade in downtown Boston. The main broadcast is live, including the open-air concert given by the Boston Philharmonic -- this is impressive, especially the part where they punctuate the 1812 Overture with actual cannons -- and goes out commercial-free. This is unusual here, but one of the many things for which Boston is known is the television station WGBH, which sponsors a plurality if not a majority of the public broadcasting content in the US that we don't buy outright from the BBC.

There were fireworks every year when I was growing up in Phoenix. The city provided the venue, and the city paid for them. Nobody came to watch them as 'the City of Phoenix'. They showed up to watch as individual people who happened to live somewhere around Phoenix, and figured these might be cooler than, like, the city of Peoria or the city of Glendale, or the city of Mesa, or whatever. Phoenix didn't make any particular effort to make sure the display was visible as widely as possible; you showed up to watch or you didn't. You didn't really schmooze with other people; you showed up with your lawn chairs and snuck in your beer and staked out your territory, and when they were over you folded up your stuff and your family and left. I'm pretty sure Glendale actually held theirs in (well, over) a local stadium, once that was built.

Boston shows up to watch the Esplanade show as a gestalt. The fireworks are actually set off from a set of barges floating in the river between the Mass Ave and Longfellow Bridges. They're visible for miles -- you can get a good view of the display all the way from the Boston University Bridge out to cruise ships by the Charlestown Navy Yard. Big chunks of Memorial Drive (Cambridge side) and Storrow Drive (Boston side) are closed to vehicular traffic during the show, as almost three miles of riverbank and sidewalks turn into spectator seating. Some adventurous souls go out on the Charles in kayaks and canoes to watch. Boston and Cambridge are well aware of this, and there are a number of places along the bank that set up speakers and play the PBS feed of the pre-fireworks concert for people too far away from the Hatch Shell to see it. The fireworks proper are run by House of Grucci, an American family-owned company world-famous for its pyrotechnic artistry.

You could question the resources poured into this shindig, and you could probably get a good argument going. Lots of them, really. Scheduling, budget, security, crowd control, transit, all kinds of things. But it would not occur to anyone here to question whether it's the city's place to run the celebration. Of course it is. That's what cities are for -- you live together and pool your resources so you can have better stuff than you could manage on your own. There are probably a thousand million things more necessary for daily life that run on this principle, but there's no reason this shouldn't be as true for parties as it is for working sewers. Especially if you want to throw a party with attendance in the hundreds of thousands.

Boston takes Independence Day especially seriously. It's not just celebrating some guys from here who did a historical thing, or even celebrating that this is the geographical locale where the historical thing happened; Boston very much considers itself to be the same city that existed back then. People move here, move away, are born and die, but the City of Boston continues on.

The city, collectively, remembers what it has done, because the city, collectively, acts. June is LGBT Pride Month in the US. The City of Boston organizes the Pride Parade, and the festival on Boston Common; the city buildings fly rainbow banners. After the shootings in Orlando, the City of Boston organized a vigil, outside of City Hall, at which the mayor spoke. In November, the City of Boston puts up a Christmas tree on the Common, and about a month before Christmas, the City of Boston celebrates when it turns the lights on. The tree comes down from Nova Scotia every year, in thanks, because when the Halifax exploded, the City of Boston organized trains of doctors and nurses and supplies, and sent them north.

I'm sure most of you are staring at this in utter perplexity right now. Most places are probably like this, at least to some degree. But the Sonoran Desert, where I grew up, operates in an isolated eternal now. The retirement communities just outside of Phoenix once decided they didn't want to pay the county school taxes, because they didn't personally have any kids still in school, and this was actually entertained as a reasonable argument. This whole thing where people cooperate because everyone will benefit -- rather than bitching and pulling out because they don't want other people leeching off their hard work -- still blows my mind. Even, or perhaps especially, when the benefit is purely psychological.


Thursday, June 30, 2016

One of my toes hurts. It doesn't look bruised, and palpation suggests it's not broken or dislocated. It's just sort of a stabby-yanking pain, like the high-tension wire-pull feeling you get when you try to stretch a muscle that doesn't want to cooperate, only it happens kind of at random.

Moving it doesn't help. Neither does not moving it. Pressing on it, not pressing on it, elevating it, dangling it off the edge of the bed, keeping it warm, keeping it cool, and knocking back more Aleve don't do anything, either. The pain is neuropathic, an adjective formed from the roots neuro-, "nerve", and -pathy, "with which something has gone wrong". A nerve has become angered for mysterious, inscrutable nerve reasons, and now my toe hurts.

This happens a fair amount. Normally my brain just sort of edits it out. I pay attention to things that change state with stimuli. A foot that twinges sharply when I put weight on it or head pain that lessens when I turn off the lights are things I can affect, and I'm not dumb enough to do things that make parts of me hurt more. Some aches are in a gray area; I can't really stop using my knees or my back, but I make an effort to be nice and not bang them up any more than I really need to. Things that take up hurting for no real reason, don't progress to hurting more in a way that suggests damage is being done, and don't stop hurting when I stop using them, I ignore.

The toe doesn't really hurt that much -- it's not to the point where I can't just quit paying attention to it -- but it annoys me. It's the standard bearer. When one thing knocks me out of whack, my nervous system basically just throws its metaphorical hands up in the air and gives up trying to maintain homeostasis. Sort of like Boston PD Parking Enforcement on Allston Christmas. Do whatever you want, try not to break anything important, we'll sort things out tomorrow.

I don't necessarily have a lot of reserves for dealing with stressors. It's always seemed to me that with other people, if their friends were a 2 on the stress scale, and work was a 3, and maybe this one specific day they had bad hay fever that hit a 4, they'd be suffering to the tune of 2 + 3 + 4 = 9 and be able to drag themselves forward whilst complaining, whereas I'd end up at 2 x 3 x 4 = 24, and it would tank me completely. Whether this is down to health issues or inborn temperament, or if I'm just a morally-deficient parasite, depends on who you ask. Regardless of the reason, it is what it is, and I've been this way as long as I can remember. Getting shouted at has never done anything to fix it, so I try not to make it anyone else's problem. I shout at myself enough for everybody.

Right now I think the immediate cause is that the weather took a sharp left turn at Albuquerque, and went from 'quite nice, really' to 'unbearably hot in between bouts of violent rain' over the course of about 24 hours. I deal with heat poorly at the best of times. Growing up in Phoenix was fun. I had no idea why anyone would ever enjoy anything about summers until I moved to New England and realized I wasn't at risk of heatstroke every time I went outside, and that non-Bermuda grass is soft and pleasant to walk on.

I kept track of all of the random bodily malfunctions for a while, thinking I should probably have some kind of journal to show a doctor. There were a depressing number of entries on the spreadsheet, none of which I could do anything about, so I quit. A similar fate befell the records when I tried keeping track of how much I was eating. The sheet says I only cracked 1600 calories a day two or three times over a couple of weeks, so clearly something went wrong there. I'm still walking around and my clothes still fit reasonably well, so I suspect the problem was less that I actually eat that little and more that I was too lazy to measure anything and guessed at portion sizes by eyeball.

People complain about the aches and pains of getting older, so I assume some amount of this is expected when you hit your mid-thirties? I really have no idea how normal it is or isn't. I'm unlikely to need any kind of hard proof in any case. There is technically a genetic test I can take that will show if I have any of the polymorphisms associated with Ehlers-Danlos, but in clinical practice nobody is going to argue with me after I've hooked my fingers on the edge of the exam table and bent my hand backwards.

It's amazing how much less flack you get for self-diagnosis when you can put on a live demonstration. I would have been casually swinging my foot over my head twenty years ago if I'd known it would magically make people fucking listen. Not my mother, obviously. She bends the same way (AFAIK, most of the family does, on both sides; the inheritance pattern for EDS is autosomal dominant, albeit with variable penetrance) and she for some reason thinks she's normal. But, you know, medical personnel who still reside on Planet Earth are remarkably attentive after I've pretzeled up in their office.

The best (read: most irritating) part is that this chaos in the central office also sets off basically the entire alarm panel, and I can't shut any of it down without also knocking myself into a coma. I gave up on talking to Jazmin the other night because I couldn't tell if the interaction felt off because she was tired and didn't want to chat, or because I felt lousy and that was overriding any real feedback. It's kind of like checking yourself for injuries with broken fingers -- if touching everything involves an OW, no matter what or where it is, it might actually be your probing hand that's busted.

[There's a similar story, probably apocryphal, that goes around in IT circles. A new hire comes bursting into the central networking office of some global conglomerate shouting that everything is broken, their Big Board O' Status Lights has gone completely red, outages all across the world, nothing is responding to anything, complete collapse. The old-timer in charge looks up and calmly asks, "Has global thermonuclear war broken out?" Well, no, says the n00b. "All right, then," says the greybeard. "Go reboot the status monitor." And after stabbing the reset switch on the machine that produced the outage reports, all was well again.]

I know things are getting unpleasant when I start wanting to lock my bedroom door. I know full well this is not going to do anything. If anyone knocks, I'm just going to get up, unlock the damn door, and open it. It's more that I'm burrowing in and trying to prevent anyone from bursting in and startling me, in the hopes that if I can just avoid making any sudden moves or having any unnecessary sensory input my headache will go away and random body parts will stop complaining. This is also ridiculous. One, my roommates aren't that rude, and two, by the time I've had that thought I'm already unhappy enough that the sound of a knock alone is enough to make me jump out of my skin.

Two and a half, most of the sharp noises in my immediate environment are produced by either a food bowl or an indignant rat getting shoved off a shelf and landing hard on the floor of their cage. Locking the door doesn't ward them off; they live in here with me.