Bureaucracy Lulz.

So far this term, I have had to argue with school administration to convince them to use the same procedures they used last year (apparently there's like a one-year trans-friendly period after which it's the same old fucking shit) to avoid outing me to everyone in the whole world, and with doctors to avoid their diagnosing me with crazy trans disease instead of lupus (seriously, the rheumatologist felt I needed to settle my 'psychological issues' before um the ANA test was valid? GOD KNOWS). And today I'll try to convince a bank that my dirty trans money is good enough!

What fun.

For extra hilarity, the check I have to start an account with AND my proof of address are both from the Academy of American Poets (won a small contest; it's not the Newdigate or anything, but it brought in money). I am sure this inspires confidence in my ability to keep money in a checking account.

Navel-Gazing on Disability and Gender, Part One

I'd like to cut a mysterious figure, I think, sitting out on the porch with Irish coffee and cigarettes and Waugh. I do invite questions -- who is that horribly thin young man? is that cane necessary? who wears gloves in this weather? -- whether or not I like it. I think I might. I want some compensation for what illness has wrought on my carefully planned self-in-the-world. There are no more waistcoats because the buttons are too much, no more trousers because I've slid right off the bottom of the sizing scale for them. Can't tie a tie with these hands, can't wear blazers with these withered shoulders. Too damn tired to look as I'd like, I take solace in the fact that I might look like something. Aubrey Beardsley, maybe, a version with oversized sweaters and Buddy Holly glasses. I do have very long hands, which is evident even when I've hidden them in gloves. If I can't dress the part I used to -- some kind of twenties Oxfordian, maybe -- I hope the visible signs of bodily betrayal are enough to create some sort of image. I have spent so much time learning what and how to project.

When I first began to use my cane (and later the occasional wheelchair), I was boggled by the increased frequency with which I passed. (To pass is to be read as a member of the gender one wishes to convey, for those of you following at home. For me, this means being seen and referred to as male.) Is being a cripple, I wondered, somehow excessively masculine? Does my cane project some sort of phallic Freudian subtext? I was cheered by the thought; my particular affliction strikes women about nine times more often than it does men, and passing more frequently was a lovely compensation for that fact. (The body knows, my diagnosis seems to say. You may identify as a man as much as you like, but your immune system knows the truth. I am shocked that I should play host to such an essentialist disease.) It took a while -- and my wicked friends' commentary -- for me to realize that being visibly disabled isn't at all masculine: it's unsexing. I'm hardly a person to many observers, merely an androgynous ailment. With that as my starting point, it takes less effort than I have ever put forth to tip perceptions to male. There are, I am quite sure, other factors -- the visibly invalid man doesn't have to look as masculine as his able-bodied counterpart, as in the eyes of the dominant culture he's already been unmanned by the loss of his physical power; I've lost so much weight that whatever curves I have aren't worth mentioning; thousands of other trivial tributaries end at the masculine pronoun coming out of a stranger's mouth. As with all matters of gender, there is no one answer, no one trait that makes or breaks my passing privilege. However, unsexed as I am by my limp et al, the cues I have always used are more effective. There is nothing for them to combat. I'm tickled and disgusted at once, as I am by handicapped one-stall restrooms. Hallelujah, I can piss in peace, but look at that -- I've got an unasked-for new gender. It's marked neither by skirts nor pants but by wheels.

Love means being able to predict your boyfriend's menses.

The S.O. is out east this weekend, visiting family. He's at the ocean now, and I texted to ask whether he could send me a picture of the stars. I miss them, living in Chicago. Upon his response that it was too cloudy for stars, I cried a little. I told him so and he informed me that werewolf week, my personal favorite euphemism for menstruation, is indeed imminent. I am now ensconced on the couch with chocolate, tea, and a fleece blanket, and it occurs to me that love means being able to predict your boyfriend's menses.

Perhaps, admittedly, not for most. But it's what love I am in means, in part. I am trans, I still menstruate, and I hate it. I repress it for the three weeks out of the month that I'm not bleeding from my obsolete reproductive system, and consequentially have no idea when to expect to begin bleeding again. The S.O., for whatever reason, keeps track for me. This weekend is the first time since January that we've been apart overnight; it took his absence to reinforce exactly what his presence means, from letting me know when I'm PMSing to rolling cigarettes for me when my hands aren't up to it.

Neither he nor I like to refer to certain aspects of our relationship as caretaking. Of course he does things beyond the call of duty for most engaged twenty-somethings -- I don't think most people our age routinely help their partners dress or shower, for example. But that doesn't make either of us consider how we function to be other than completely normal. After all, most partnered gay men don't keep track of when their boyfriends get their periods; nor do most people of any age learn how to ground and support their partners through flashbacks. We don't see any of the above as weird or burdensome -- it's common fucking decency. The person you love needs help with some things, you provide that help. The person you love is a survivor of sexual abuse, you stay away from things that will trigger.

I'm beginning to add to that opinion. Most of it, I still maintain, is just common decency, or common sense. Of course you ask every single time whether something physical is okay. Of course you're going to notice a trend in the menstrual cycle of someone with whom you cohabitate. But increasingly I think a lot of what the S.O. is doing amounts to unpaid carework. A quick Google search for the term brings back a definition of carer as "Someone whose life is in some way restricted by the need to be responsible for the care of someone who is mentally ill, mentally handicapped, physically disabled or whose health is impaired by sickness or old age" (Baroness Pitkeathley). Whose life is in some way restricted, I repeat for emphasis. Ouch.

No, I don't think the boy would be sipping daquiris on a tropical beach if he weren't acting as a caregiver. But maybe, I don't know, he'd get out more, he'd write the Great American Novel, he'd study more, something. I'm feeling guilty, obviously. Carework is not something I feel entitled to from him or anyone, but I'm afraid that by allowing it I'm demanding it. In fact, I feel like he didn't really know the extent of my disability until we moved in together; I feel like I pulled him in under false pretenses in some nefarious plan to have someone around to button my oxfords and help me get up stairs and things. Clearly, that's not how it went at all. I continue not to think of him as "caregiver." He's my boyfriend, my fiancé when we get technical, my partner sometimes, my significant other, et cetera. But he's also other things -- among them student, writer, queer, agnostic, survivor -- and maybe caregiver goes on that list too. I'm not entirely sure whether I'm allowed to say that without him identifying as such (oh dear can you tell I came up transqueer? One may never impose adjectives on another without explicit consent!), but spending even a day-and-a-half without him throws into pretty sharp relief what my life is like with him.

To give you an idea, I haven't showered today; I wore clothes that I took off buttoned and buckled, which means they're recently worn. I'm not smoking unless in company, as the only tobacco we have is of the roll-it-yourself variety. Also, I keep dropping pens on the floor and not being able to pick them up (until I thought to do it with my toes, in which I retain freakish dexterity). There are a thousand tiny things that sound trivial individually, but make a dramatic difference when missing en masse. So yes, I do think my romantic relationship has elements of caregiving about it -- in both directions, as in all relationships, but I feel that the care coming from him to me is indeed CAREGIVING, in the Baroness Pitkeathley way, and what I do for him is just common decency.

For the moment, I'm too tired to angst about it, and will only add that love also means excusing shared showers as medically necessary.

My Life as a Giant Twitching Insect

"He told himself again that it was impossible to stay in bed and that the most sensible course was to risk everything for the smallest hope of getting away from it."
Kafka's Metamorphosis*

I'm going a bit mad, having been in bed for about a week when not in class, and yet again I find that Kafka has something to say about my particular malady. I over-identify with Gregor Samsa for too many reasons to count. In sum, we both have bodies that do horrible things to us without our consent; we lose control over the way we're perceived because of our bodies; the people closest to us regard us as disgusting monsters. Welcome to my transsexual childhood, basically. Since the tender age of ten, I've had the language to describe gender dysphoria: it's Kafkaesque. It's like turning into a giant cockroach. It's like watching your mother sob when she looks at your fucking monstrous body. Kafka may as well have been writing about my puberty, I feel.

I'm re-reading The Metamorphosis for my humanities course just now, and am taken aback at how much I still feel like Gregor. In terms of my dysphoria, this isn't surprising. (Hint to the cis: it doesn't get better.) I'm reading disability into his transformation now, projecting like no one's business. Lo and behold, that first morning -- those first sickening steps in a new body -- has lasted a year by now. I still don't quite know how to get out of bed without injuring my lower parts, as it were. I still can't quite accept that anything has changed; after all, "if they took it calmly, then he had no reason either to be upset, and could really get to the station for the eight o'clock train if he hurried." Gregor does not let his massive physical transformation mean anything in isolation; it is when it is first exposed in company that he realizes the weight of what has transpired.

Samsa had it easy. He changed all at once; he didn't have the pleasure of feeling his body metamorphose around him through time, now bent, now swollen, now stiff, now fused. His adjustment period was finite. He didn't wake up yesterday from a nap unable to breathe and realize that now it's in his lungs, that this really is systemic, isn't it, that any organ could be next. Doctors and Gregor had nothing, ultimately, to do with one another; I can only map my new body with medical assistance. In short, fuck you, Gregor.

All that aside, I've got a new answer to the ubiquitous "what's it like?" question: Kafkaesque. If there's anything more sickening than watching your body change without your consent, I sincerely hope it never happens to me.

*My edition is Kafka, Franz, 1883-1924. The Complete Stories. Edited by Nahum N. Glatzer. Schoken Books, Inc, 1971. The Metamorphosis in this edition was translated by Willa and Edwin Muir.

It's that time of year.

Every spring for as long as I can remember has been Diagnostics Month, god knows why. Throughout childhood, I had cancer scares in March -- and doctors with really horrible bedside manner. "Well!" they'd exclaim, "Could be cancer!" They'd run tests, my parents and I would have anxiety attacks for a week, and the test results would come in negative. Through high school, they were Munchausen's episodes, apparently. "Are you still on your Prozac?" they'd ask, thinking withdrawal symptoms, or they'd tell me straight out to stop seeking attention in unhealthy ways. Last March was my RA diagnosis. As spring rolls around yet again, it's time to go through a differential again. New doctor, new tests (and old tests). I don't know why they can't believe the doctors who diagnosed me last March, but I'm being re-tested for everything under the sun. "Well!" they exclaim, gazing disinterestedly at my softball-sized knees and my twisted fingers. "Could be (lupus/gout/scleroderma/any other auto-immune or rheumatic issue ever)."

And yeah, it could be. I know my symptoms could indicate a lot of different diseases. I know I was diagnosed despite not having rheumatoid factor in my blood when they tested (and a certain percentage of people with RA just don't have it). I'm just sick of being poked and prodded and stripped and examined. I'm sick of waiting for tests, waiting for a diagnosis, waiting for words to put to my body. I'm especially sick of waiting on treatment that could help preserve my joints because the doctors are playing Guess the Disease.

I'm not a very good patient, I'm afraid, but I'm beginning to wonder whether I have good doctors.

Redefining Sex.

This is my -- slightly late! -- contribution to a Valentine's Day collection of blog posts about sex/sensuality and disability; links to all of the posts here, at Chewing the Fat.

The S.O. and I have always had a slightly atypical sex life, as one would expect of a relationship between two eating-disordered trans boys, one of whom is an incest survivor. We go through phases, really. Sometimes we fuck like bunny rabbits and sometimes we aren't comfortable with anything more than cuddling and kissing. Up until my rheumatoid arthritis got more intrusive, though, it was a matter of willingness, not ability. We still go through the same mostly congruent phases of desire, but it's harder during the phases when we both want sex, and as much as we can get. I can't have it any time I want just because I want it.

We've found [EXPLICIT] ways to get around it, to a degree. Sex toys for days when I can't use my fingers for any fine-motor-skill sort of task, kissing him while he gets off for days when I don't have the grip to use sex toys, and dirty talk when even molding myself against him enough to get at his lips with mine is next to impossible [much less explicit hereafter].

All of that helps, but it doesn't fix the problem: I can't have sex when I want it just because I want it. I'm in my early twenties, in a relationship with someone to whom I desire very much. If I weren't disabled, if I didn't have chronic pain, we could just carry on as our friends do in their relationships. That we can't is frustrating as hell. It seems to me that it would help if both of us could alter our already-atypical idea of what sex is, if we could make it something, sometimes, that doesn't necessarily involve vibrators, or penetration, or orgasm. Try as I might, I can't twist my mind around that just now, and until I'm comfortable with another definition I'm not going to ask my boyfriend to adopt it.

That's where I am right now with all of this -- it doesn't come up as often as it might, because the times when we're both willing are more rare than those when one or both of us isn't. When I'm willing but unable, it bothers me for days. I'm not sure whether it bothers him as much. I'm not sure whether I shouldn't just come to terms with the fact that there will be times when I want to fuck but can't. I'm not sure whether this is a problem to be solved by redefinition. I'll keep pushing and pulling at it, and if I ever magically reach some point of acceptance -- if I am ever okay with knowing my disability alters my sex life irrevocably -- well, I'll be surprised.

On the Field Museum, Aztec Religion, and Using a Wheelchair.

I went to the Field Museum with the significant other today, fully confident that seeing the Aztec World exhibit would solve all of our problems and also cure depression. While it didn't quite do all of that, it was amazing, italics necessary. A decent portrayal of a non-Christian religion by the Field Museum was enough to put me over the moon (if you've ever been to their exhibit on ancient Egypt and read what one curator or another thought of their gods, you'll know what I mean; it's not actually like the Trinity at all, guys), but more than that there were artifacts upon artifacts that had never been displayed, had never left Mexico, were on loan from private collectors -- rooms on rooms of things I will never be able to see again. I am incredibly glad I did see them.

Parts of certain exhibits at the Field feel sacred: the Tibetan temple reconstruction and nearly all of their ancient Egyptian collection, the Ancient America exhibit's ritual items and deity representations, and even, incongruously, the dinosaurs. The Aztec ritual items, which included bloodletting spikes for willing blood sacrifice, knives for involuntary sacrifice of the lives of enemies, boxes that held human hearts and were buried to feed the gods, and items common householders used in their home-based religious practices from tobacco pipes to ceremonial drums, didn't feel quite so intense to me. This is very possibly because many Aztec gods scare the pee out of me, some in a way that inspires awe -- Mictecacihuatl, for one -- and some in a way that makes me want to hide behind my significant other and close my eyes -- Xipe Totec, or Our Flayed Lord, comes to mind. It could also simply have been that there were a lot of people around, and I try to visit my favorite exhibits at off times. At any rate, the buzz I tend to get from items with a long ritual history just wasn't there. I did end up with a little porcelain skull bead as a scrounged-change present from the S.O., though, and it's on my altar. Issues of appropriation will I am sure rear their valid heads sooner rather than later.

On quite another note, I use a wheelchair when I'm at the Field -- the thing's nine acres, which is not a distance I like to walk if I can avoid it, and they lend out wheelchairs for free and will kindly check my cane with my coat. Using a cane has gotten me some looks and comments, but absolutely none of it stacks up to what I get in a wheelchair. I like to wheel myself around, but that's not always feasible; my shoulders, after all, are almost as inflamed and painful as my knees during a flare. Therefore, the S.O. ends up pushing me much of the time, provided I can swallow my misplaced pride.

Today I learned first-hand that sitting in a wheelchair makes me an object. A fellow museum patron who crashed into me out of inattention apologized profusely -- to my partner. My sentience was apparently in question. People would move only begrudgingly to let me see the (varyingly visible to a person sitting in a wheelchair) display cases in the Aztec exhibit, and usually only when my partner asked to get through, not me. I already know that most people consider it a huge bother to have to move their asses two inches to let me get by (or two seats down the train or bus to let me have a priority spot) when I use a cane, but this was almost comically pronounced.

I'm not exempt from being an ableist dick, as I was forcibly reminded today. There was a man in the gift shop who was using a wheelchair; I was wheeling around aimlessly without the S.O. and we nearly bumped into one another. He said hello, and I quickly wheeled away. What the fuck is that about? I'm already a shy person, which is part of it, I guess, but my reaction was totally unwarranted. This bears further examination, but what I'm guessing is that I'm afraid to be in the same category as people I consider more disabled -- after all, I don't use a wheelchair normally. That's pretty exceptionally disordered thinking, and I definitely need to learn to check my able-bodied privilege, which still exists even though I'm no longer able-bodied, at the door.

And then I went home and had a nap, which is how many of my exploits end.

Fourth Annual Brigid in the Blogosphere Poetry Slam

Today is Brigid's day, and in terms of virtual observances, I can't think of anything better than an online poetry reading. It's also the perfect post to inaugurate this particular blog. My contribution follows.

In a Station of the Metro

The apparition of these faces in the crowd;
Petals on a wet, black bough.

-Ezra Pound


Tea with Honey

He rolled over sonnombulant,
a private action that hadn't
a meaning. I was only
the book he fell asleep
reading the night before.
Something soporific between
the covers. I was boring him
again. A too-heavy tome,
it was my pleasure to put him
to sleep.

-Simon Creek


Warming Her Pearls

Next to my own skin, her pearls. My mistress
bids me wear them, warm them, until evening
when I´ll brush her hair. At six, I place them
round her cool, white throat. All day I think of her,

resting in the Yellow Room, contemplating silk
or taffeta, which gown tonight? She fans herself
whilst I work willingly, my slow heat entering
each pearl. Slack on my neck, her rope.

She´s beautiful. I dream about her
in my attic bed; picture her dancing
with tall men, puzzled by my faint, persistent scent
beneath her French perfume, her milky stones.

I dust her shoulders with a rabbit´s foot,
watch the soft blush seep through her skin
like an indolent sigh. In her looking-glass
my red lips part as though I want to speak.

Full moon. Her carriage brings her home. I see
her every movement in my head.... Undressing,
taking off her jewels, her slim hand reaching
for the case, slipping naked into bed, the way

she always does.... And I lie here awake,
knowing the pearls are cooling even now
in the room where my mistress sleeps. All night
I feel their absence and I burn.

-Carol Ann Duffy


A Poem

Tell me, if I caught you one day
and kissed the sole of your foot,
wouldn't you limp a little then,
afraid to crush my kiss?...

-Nichita Stãnescu