Today is World AIDS Day, 2008.
Today is World AIDS Day, 2008.
December 01, 2008 in AIDS/HIV | Permalink | Comments (0)
[March 19-23, 2008]
Winterschnee (Wednesday)
Snow is forecast, although it is Easter weekend (admittedly a very early Easter, tribute to the peculiarly arcane calculations the Church goes through to establish the date – look it up some time, the formula is nothing short of bizarre); and here it is – rich, heavy snow, very wet, but falling beautifully in the small park outside my room.
This hotel room is tiny but outrageously efficient: this is, in fact, a Germany that I’ve always liked a great deal – well-made, well-designed, excellent heating and lighting, wonderful bread, a vast range of Schinken und Käse at the deli next door. Perhaps I like it so much, not only because everything is so dependable, so neat, so functional, but because this is the Germany I first saw in 1993 – my first trip to Europe, the eight or nine months I spent in Kiel and Darmstadt. Like those small cities, Stuttgart was bombed flat in the war; so everything is post-war design, what Joyce has called ‘very seventies’; but Stuttgart does this kind of thing distinctly better than Kiel or Darmstadt, as it is both small and quite wealthy, because of the local Mercedes/Daimler-Benz money. I remember the city tram lines, which had a charming toylike quality – I wonder if they’ll still look that way to me….
Nachtschmerzen
Rather horribly, the night before my flight today, my digestion became acutely painful, endlessly, miserably so; I slept very little, and was a wan, frustrated ghost by the time I took a taxi to the airport. Impossible to change my flight, of course, impossible to handle being on the plane, impossible to handle the unreasonably bad planning at Schiphol where, as I’d been warned, transfers have become outrageously slow and difficult: a weird contrast to the rationalist pleasantness of the architecture of the new airport, which is purely rational urban Dutch, as though the entire place were a Helvetica font.
My dear friend Joyce, whom I am visiting here in Stuttgart, is in so many ways a blessing, and is happy to spend time helping me try to feel better: some Heilpraktiker tea, some pills at the Apotheke, a couple of Brötchen at the delicatessen by my hotel. I can do no work today, although the whole point in this trip is to put together this book that should have been finished ten years ago: but she is forgiving about that, and when we have done what we can to generate some symptomatic cures she takes me back to the hotel, we sneak various teas and a hot-water kettle into my room, and I sleep all evening.
But I’m not really better, and from around midnight that becomes all too clear: tonight, I am still in pain – and, increasingly obviously, real and serious pain. For months I’ve been assuming that my digestive problems were a kind of irritable bowel syndrome, something that requires managing my diet and avoiding coffee (why, in that burst of writing I did before I left, did I drink coffee three days in a row? – such foolishness); but of course last night and tonight I can’t help thinking: is this a different, a worse, problem than that? If I had an X-ray now, would it perhaps show some kind of awful dark shadow on my left side, where the colon is – where the pain is constant now?
Madness. Somewhere between the trivial pleasantries of Stuttgart, the valiant attempt to banish the ancient demons of not finishing this book, Joyce’s kindness, and my long reading of a novel by Nicholas Mosley – a book whose dark, thoughtful confusion is making perhaps too much sense to me right now – I can’t really find my balance. And I need to find it, because I’m not at home, because that damned book must get finished – and because, maybe, I really, really need to go to a doctor: and brace myself for something real – something non-trivial.
Mosley (Thursday)
And how strange: because of the pain, sleep is impossible; instead I have read this dense, wonderful novel – Nicholas Mosley’s Hopeful Monsters – five and a half hundred pages, entirely between getting on the flight at 10 am yesterday and 6 am today.
It would be so wonderful to sleep: but if I can’t sleep, at least this novel was the best of distractions. The density and darkness of so much of it – the tangled politics, ideas, and increasingly demented behaviors of 1920s and 1930s Germany and England, seen through the eyes very intelligent young people who are at a loss to understand what’s going on… and a happy-ish ending, which brings me great peace, something I could use right now.
Of course, now I have only one other book left to read, a professional and depressing one on the cultural theory of AIDS… I hope the local Buchladen has books in English.
But I think, more importantly, that I need to call Joyce as soon as I think she’s awake, and go see a doctor.
Krankenhäuser (Thursday)
Joyce responds quickly and practically to the situation – she really is a marvel – calling around to see what the best choice of hospitals would be, then telling me to dress and stand outside (I can’t button my pants, but hold them up inside my long coat) while she drives over to get me. The first hospital is a mistake, we are misled by confusing signs and two different hospitals with similar names; but we finally reach the correct one and take a gleaming elevator up to Internal Medicine. Many questions, many explanations, about insurance, citizenship, pain, age, date of birth, previous conditions; Joyce calls me, repeatedly, Herr Doktor Professor, and mentions to me later in an undertone that that ought to get me better attention. It’s like when I was living in Hong Kong: I used my titles like social weapons, and they worked – but I’m out of practice doing that, Brits tend to be somewhat ashamed of professional titles and avoid using them. Joyce points out that, on the top of the check-in sheet that is now the beginning of my medical chart here, it says clearly: Professor….
A charming, businesslike young woman doctor examines me, takes blood, enters me into the hospital: but what is wrong? They don’t seem to know….
Joyce comes with me up to my room, which I share with a very old man (it seems that almost all the other patients are in their seventies or eighties – Joyce says, well, Germany has a negative birth rate). He is not exactly charming – slurping food and moaning occasionally – but his wife and daughter are very pleasant, and I settle down, expectant that someone will now take care of me, and I can stop worrying.
In ernst (Friday)
I am not happy.
Friday morning, and although they are kind to me they have done nothing definite yet, and I am definitely not well – Bauch bloated, Magenschmerzen, Fieber. I point these things out to the nurse, in no uncertain terms; there is some bustling around, and I am taken in a wheelchair down several elevators, across and around several halls in different colors, almost entirely across the hospital to the surgical wing – to be seen, as though I was led through tunnels to consult with a sort of master wizard, by the Chefarzt (senior doctor, far senior to the ones I’ve had contact with so far). He is a big, hearty, country man; in the next few days, when he is out of the room, the younger doctors will tell me he’s known as a sort of Landarzt (country doctor), bluff and strong-willed. He examines me, then turns to me and says: I’m not sure what’s wrong, but we’re going to operate – now – so good-night, because you’re going to have general anesthesia.
I am taken into a room where a young man and woman bustle about, arranging me on a specially designed bed that has blue plastic gel supports for the feet and head – very high-tech, very well-made, very German – and prepare the anesthesia. They joke, I joke – I’m actually relieved that something is being done. And perhaps a bit relieved to being made unconscious.
But, of course, also a bit anxious….
Afterwards
It was a burst appendix: full surgery, eight-inch incision down the middle of my belly – later in the week I will read that when an appendectomy is done before the appendix bursts, it is done with a small incision, a camera, and two or three days in the hospital. Or when they already know it’s a burst appendix, the incision isn’t much bigger – but because they were going in blind, they did a great big exploratory incision. Ah well, I wasn’t so lucky: I will be here for at least ten days or so. I also read that it’s not their fault – although so many people have appendicitis, symptoms vary so confusingly that thirty per cent of appendectomies are misdiagnoses….
But, thank God, I am no longer in pain… morphine… intensive care. Feeling much better. Actually quite comfortable, rather happy. Morphine…. There are five connections to me – catheter, a tube down my nose into my stomach to carry away bile, a drip in my arm with saline, Schmerzmittel – morphine… – and antibiotics, whatever. Intensive care is fairly strange, constantly busy but at a low hum. Many machines, blinking lights, a sense of constant watchfulness. Intensive Care has not only Krankenschwestern – nurses – but also the supposedly stronger Krankenpflegern – male nurses: gender divisions are unsubtle in German hospitals. The lights are never turned off, the lights are never bright. Morphine…. there is a little tube attached to one finger, checking my pulse. Joyce says that the battery of screens behind me has all sorts of moving numbers – she tries to figure out what they mean – she can see what must be pulse and temperature, the rest are mysteries.
I am not uncomfortable. Morphine….
Nadel (Saturday)
A catastrophe: but not for me – because of me. The Chefarzt – I am gradually absorbing the information that he isn’t merely head doctor for a division or something, he is literally the chief surgeon for this entire large hospital – stuck himself with a needle during my surgery.
The dreaded needlestick injury: infection with HIV, with HCV, through accidental blood contact with a patient… one hears so much about it, it’s even been a long-term semi-tragic subplot in ER, House, and other television hospital dramas. It’s quite different when it happens during your own operation – now I feel, well, like a threat, like an unconscionable danger to others: as though those old Republican plans to put us all into quarantine in Utah were not such a bad idea….
I learn, also, that the Chefarzt is a month and a half away from retirement. He is widely feared, and as widely respected – the younger doctors (especially the meticulous young Turkish one who is slightly pompous, slightly grandiose, when he is alone in my room giving me instructions) often look panic-stricken when he is in the room, as though they’re about to pee their pants.
This is all upsetting. A plump, red-cheeked young doctor, sort of a young German teddy bear, asks me for information on my HIV viral load, my doctors, everything – I give it all to him, fax numbers, whatever I can. I am anxious, and say so: at one point I tell the Chefarzt himself, I’m very, very sorry – he simply raises his hand and says: this is not your fault, this is our job and our responsibility, don’t worry about it. And it is clear that he means it.
Of course, one must imagine: this bluff, strong man, retiring in six weeks – a moment of clumsiness in surgery: is one reason for his retirement that he no longer feels quite sure of his hands? How awful, then, that they should betray him in a moment, that they might betray his own health, his own immune system….
That day, a fax is received from England with my most recent test results; everyone is reassured that my HIV viral load is undetectable (as it has been for several years); I’d told them this, but of course doctors are always happier with information that comes in directly and officially from their own kind. Just to make sure, they send my blood to Heidelberg for testing… the next day the results are back (speedy service for a Chefarzt), and there is indeed no detectable virus.
So the Chefarzt is happy, he won’t have to do any kind of prophylaxis. Of course my HCV viral load is not low at all – but there’s no prophylaxis for that, and in any case HCV infection is exasperatingly mysterious. He seems unworried – and more than that: he seems pleased with me, that I made such a fuss about it – and this will have some very positive repercussions: because although I have not paid for a single room, I notice in the ensuing days, the ten days I will still be kept here, that I am practically always alone in a nice room.
The advantages of being a Herr Doktor Professor: and a favorite of the Chief’s….
April 11, 2008 in AIDS/HIV, Books, Illness | Permalink | Comments (0)
... or should that be: making one's self crazy?...
In the interstices of watching these films, and scanning Joyce's thesis so I can report on it (the airplane and hotel for her defense in Paris are already organized – which reminds me: I also need to buy a flight to Washington to attend my eldest sister's memorial), I've been trying to read only books related to AIDS: easy enough in terms of finding them (they are all on four-and-a-half three-foot shelves – yes, there are a lot of them), but of course rather difficult in terms of finding the emotional patience to stick with them.
So, I made what seemed an easy choice: Hervé Guibert's Paradise, one of his last novels – which is, I think, the first Guibert I've finished. They are mostly quite short, and gracefully readable, in English or in French; but, well, do I have to explain why I don't always finish novels about AIDS?... okay, well, let's face it, they're mostly downers.
This one is very good, if perhaps a little too heterosexual for my tastes; but, although I expected the ending to be fairly wrenching, I wasn't quite ready for the chaotic skill and range of it – hugely disorienting and upsetting, really, not so much because of any individual passages (although they included torrents of images suggesting infection, sex, betrayal, death, and damage) as because of the entire dementia-ridden nightmare of disconnections: although it is not difficult to imagine the dislocations and inconsistencies of a novel that ends in dementia (at least not for anyone who became accustomed to Robbe-Grillet or Burroughs or a mass of writers since them), a skilled writer like this one can make you experience it, perhaps more than you would like.
(It made me think of my own drafted, probably-never-to-be-finished novel, and its considerably gentler dementia-oriented ending – which you can read towards the end of my long blog entry The Voyage to Europe; and that connection was actually rather encouraging, as it occurs to me that if I am incapable of writing a long novel, perhaps a short one would do. Well, maybe someday.)
It was really fairly crazy-making: and wonderful, and impressive – far more so than Collard's shallower egotism, in fact. But it was definitely a rapid and uncomfortable descent into the maelstrom: a kind of reading, thinking, and in fact remembering that I tend to avoid these days.
So it's nice to realize, yet again: I can handle it....
•••
But, after some hours of restless sleep while stormy winds beat the windows – and I don't mean sleep at night: finishing the novel at midday led to an afternoon of avoidant, depressive unconsciousness – I woke around dinnertime, had some tea, and put on a CD.
And how beautiful, how wonderful a piece was given to me, to make me feel better, more able to get back to work, to living: Robert Sessions' beloved piano miniatures From My Diary (1940), which I used to play back when I had a piano in the house. (Yes, I agree: it would be good for me to have a piano here – we'll see.) I suspect that many music students know these works, as they were examples in some popular music theory/history anthologies; I wonder if those other musicians remember these tiny, amazingly human pieces with as much affection as I do.
Best of all: the lovely, shimmering space outlined in the first miniature, between the pedaled bass and the answering quasi-harmonics of the treble....
•••
A small addendum on Guibert, after reading what others have to say about him online: it may seem ridiculous to complain of Collard's egotism, compared to Guibert's – very well, Guibert spent his entire life writing about himself, photographing himself, trying to meet important people to aggrandize himself, etc. – but Guibert's egotism doesn't bother me: it's not only more skillful, it is also not so shallow – Guibert is obsessed with himself not because it [he] is himself, but because that's what he knows best. Though it is amusing to see how irritating his self-obsessed success must have been for other Parisians (Duras hated him, and threatened to leave a major publisher unless they stopped showcasing him), it doesn't seem terribly important – he is an interesting writer, and of course nine-tenths of the successful artists of London, New York, Paris, Los Angeles, and other major cities are guilty of the same self-advertisement, the same manipulations, the same 'planned' friendships....
March 12, 2008 in AIDS/HIV, Books, Music | Permalink | Comments (0)
I'll admit it: Savage Nights (Les nuits fauves), Cyril Collard's famous 1992 film about being bisexual, HIV+, and careless – by which I mean: really fucking careless: having sex with someone without telling them – is at least as exasperating as it is impressive. Does that make me a fuddy-duddy?...
Lots of drama about rebellion and being independent... and French quasi-intellectual messing around, complete with cigarettes, fights, threats and existential babbling. But, unlike Gregg Araki's The Living End (same year, similar concerns – and a film I dislike even more than this one), Collard's character isn't too young, dysfunctional and screwed up to know what he's doing. This is an educated young man, talented, capable, comfortable, who just wants to pretend he's not positive – without caring much about anybody else.
I've always been concerned that Foucault, whom I so respect, may have acted a bit like this....
Although I confess, I absolutely love the scene where, when a group of skinheads are attacking an Arab, he cuts his hand and threatens their leader with infection. And they back off – HIV becomes a weapon. And I can go with the ending... though I'm not sure he earns it (at least not – and I know it's cruel of me to say this as he died soon afterwards – not within the film).
But the infection bit... it reminds me of a creepy guy I know in Darlington, obviously wasting (and thus self-evidently with a non-negligible viral load) who justified not telling the many guys he had anonymous sex with that he was positive. Fortunately, he is by far the worst example I've known in twenty-five years; unfortunately, since I laid down the law to him, he no longer even talks to me.
Maybe it's the cheap justifications that repulse me so: if you're lying to yourself and to other people, and they aren't even the same lies, how can you expect...?
Stupid, stupid people.
•••
Later, after a drink: I'll admit, though I still think Collard was narcissistic and manipulative, he did indeed get to me. He's managed to make me feel careful: it's the old trope of Avoiding Life – which also assumes, Latin-style, that Life includes violence, stupid fights, threats, and doing incredibly vile things to other people – but now I wish I had a bit more of that left in me... aargh.
Of course, when I was younger, I was willing to allow awful things to happen to myself: but not to other people, there I drew a heavy black line. Perhaps that's why I ended up alone.
This will pass.
•••
And still later – and perhaps rather obviously: because, for years now, I don't have new experiences, I just revisit old ones by reading old poems, stories, writings; because there is no motion in my emotional life; and because I talk to medical students, in charmingly reasonable terms, about my experiences over the past twenty-five years, but obviously that's not the same as actually having those experiences; therefore going into these films, these songs, these novels, is actually creating new feelings: because even if I have had these ideas before, feelings are obviously not re-felt in the same way that ideas are.
That's the really tough part about doing this work: wading through new feelings, about AIDS....
March 10, 2008 in AIDS/HIV, Film | Permalink | Comments (0)
I am watching AIDS films, while working on the book about music and AIDS: this may be the toughest material to pay attention to – most of the songs I will write about later are much shorter than the films, except of course the musicals, which are in their turn more artificial and therefore (mostly) not as affecting. But the films are, of course, naturalistic (or mostly so), and dramatic and tear-jerking, etc., so watching these is a bit like jumping into the deep end of this work.
(Or perhaps I'm wrong – because, in a different way, it will of course be extremely hard to listen to Diamanda Galás' music, or perhaps to hear a lot of difficult pop songs, or... anyway, this feels very difficult right now.)
Jeffrey (1994) is a comedy, light and funny and... but I cried through half of it anyway. If that one is so hard to watch, how will I get through something really tough like Longtime Companion?...
On the other hand, perhaps Jeffrey is difficult to watch because it's about fear and not having sex. With, of all people, Michael Weiss (pictured above)... sigh. This possibility is confirmed by watching the respectable but now rather clunky-looking documentary Absolutely Positive (1991) or the unfortunately schlocky, though admittedly realistic, It's My Party (1996), neither of which, as it turns out, bothers me much at all....
***
II. Another chance
... Later, getting through Parting Glances (1986) has its own complications: when it first came out in theaters, I went to see it with my best friend Kevin, but I fled after the second scene when one of the leads cuts his hand in the kitchen of a friend who has AIDS. I thought, as it turned out incorrectly, I knew what was coming: a dramatic tragedy of infection... I was offended enough to skip out on my friend, the film, everything. (Was this shortly before my own diagnosis – which I remember perfectly well was April 1987 – or by any chance did I see the film after?...) And, despite having owned the DVD for several years, I've never seen it before now....
Welcome (back) to the 80s.
***
III. Monumentum pro 1986
Halfway through Parting Glances, at a point where I'm thinking: I seriously have to go talk to someone, do something, that gets me away from watching movies about AIDS – Patrick texts me that he and his visitor from Bristol are going out and I should come along. After a bit of testiness that he texted me so late (I know, I should be pleased he did it at all – but I depend on him perhaps too much for companionship, given how little I get from anyone else here), I shower and go out around midnight, eventually finding them in the main local gay nightclub.
And, for the ensuing four hours or so, proceed to have what feels at points like a quasi-1980s experience, mixed irregularly with fragments of twenty-first-century provincial Britain: the music, the lights, (some of) the guys. A massive steroid-built, tattooed behemoth bouncing across the floor like a medicine ball. Shy, feral Northern lads. A chunky, gentle-looking young man with a face one could come to love, trailing around behind a more sharply dressed pair of gym-builts (just as I am trailing around behind Patrick and Colin). Vast numbers of trampily arrayed, shrieking northern women. And, once, a remix of that peculiarly disturbing disco version of Barber's Adagio for Strings rings sadly across the floor, but everyone dances just as they do for anything else.
Finally, around four a.m., at a point where things no longer resemble 1980s clubs (when, in fact, people start to stagger a lot – northern Brits are not sensitive about motor skills, as they like to get really, really smashed), I gracefully take my leave and come home.
But, I'll admit: it was fairly, well, resonant....
March 08, 2008 in AIDS/HIV, Film | Permalink | Comments (0)
[Speech for World AIDS Day, 2007]
Today is the twentieth World AIDS Day; the first was held in 1988, after the UN named December first as our day to remember, witness, and celebrate the lives of people with HIV and AIDS. Of course, every year World AIDS Day has a theme; this year it’s a long-winded one – “Stop AIDS: Keep the Promise – Leadership.” This is the third year they’ve had a theme about Keep the Promise, a worldwide campaign aiming for universal access to medications, all over the world, by 2010 – just three years away.
Most people admit that the prospect of keeping that promise doesn’t look very good – not enough has been done. A couple of days ago, Gordon Brown met with AIDS activists at Downing Street; Stop AIDS Newcastle has made postcards that you can use to give Brown and your MP an extra push to do something about the promise. And today, for some reason, Bush – not someone we’re accustomed to think of as a friend – asked to double the amount of money dedicated to AIDS. So maybe our leaders will do something to bring that promise closer to reality; and perhaps some of you can join the leadership of that promise yourselves, and make it happen.
Twenty World AIDS Days, and at least twenty-six years of the crisis: other members of the Newcastle patient group are probably as amazed as I am that they’re still around after so many years. We’re astonished that we reached middle age – it’s unbelievable to me that I’m fifty-one next week, like most of us I never expected to get much past thirty – and maybe we can use those years of experience to help those who haven’t been part of the crisis for long, to help governments to keep their promises, and to have these [hold up pills] available for everyone who needs them.
•••
I’ve been thinking lately of witnessing – being a witness, a phrase that came up a lot around AIDS and HIV over the past twenty-six years. Being a witness is being present at something, seeing something – not turning away, not being unwilling to see it. That has sometimes been hard: to see people suffering, to see people dying – to see yourself suffering, and to stay with it, pay attention, see it through to the end. Witnessing someone’s death, for instance, can be very hard – but many agree that it can also be one of the greatest privileges you can experience: the connection to the person who is dying, the sense of what is real, what is important, hits you so strongly that you can never forget it. In fact, it changes you forever.
Of course witnessing isn’t always that intense – we witness people talking about their lives, about being stigmatized or supported, about the love and sometimes the hate they receive. And witnessing is often just being present – as you’re all present today. But that’s not always easy, either: this year we brought together the organizers and activities of the Eyes Open gallery showings with the World AIDS Day vigil we’ve held for the past three years, and marched the whole thing through the middle of the town – and that was a big problem for some people. The fact is, a lot of people and organizations were unwilling to march today, because it was outside, in the open, where anyone might see them. It may be hard to imagine in 2007, but there are people who are terrified of being seen to be associated with AIDS, people who are frightened that their friends and neighbors might find out, even organizations that have to be careful in case vandals smash their windows.
Of course, we can witness that too: we need to see, and remember, how hard it can be to be a witness – that it takes a lot of courage just to stand and pay attention, to watch what is happening to the people around you, even to yourself. Maybe that’s why we have silent vigils – for a minute or two, we don’t talk, we don’t run around, it looks as though we aren’t doing anything at all – well, that’s when we are witnessing, watching and remembering and standing firm in our determination not to be washed away.
When you think of witnessing, you can’t help but think of testifying: saying what you saw, what you felt, to people who weren’t there, who don’t know what happened. Of course that’s even harder – for some people it feels like putting yourself in the line of fire, sticking your head up above the trenches on a battleground of stigma and prejudice. But when we do it together, then maybe we have a chance; and maybe people hear us differently, see the crisis differently.
So: we witness who we are, witness our own suffering, the suffering of friends and neighbors, of people we barely know, or don’t know at all; and increasingly in the past decade we witness the whole world – I’m always amazed at the student Stop AIDS groups that are so much more conscious of, and concerned about, Africa than any of us were in the 1980s or 1990s; it’s kind of thrilling, really.
And when we’ve witnessed our lives and the lives of others, just maybe, when it’s down to the wire, when it really matters, we’ll be ready to testify: to say who we were, what we did, and everything, absolutely everything, that we saw.
[Newcastle, December 1, 2007]
December 01, 2007 in AIDS/HIV | Permalink | Comments (0)
Merry World AIDS Day...? Have a very merry, holly jolly World AIDS Day? – hmm doesn't quite work, does it. We definitely need a different way of talking about our holidays.
I am, as anyone might have expected, still fussing over my unwritten speech for today. I was first asked to give one in 2004, and my immediate experience of traveling gave me material for a successful tour de force; speeches in 2005 and 2006 were okay, but it was hard to find anything with quite so much impact.
It'll be more complicated today, because instead of a quiet indoor vigil, not really competing with the big political gallery event, they've been put together into a march and a (at times rather loud – do we really have three percussion groups?) 'celebration' at the local concert hall. Oh well, I know it's not about the rhetorical flourishes, I can just introduce people and mention a few big statistics and such.
I wonder if Churchill had these problems?... of course, "blood, sweat and tears" sounds a bit nasty in a viral context.
•••
Other fragments of other days... Mitchell visited from Los Angeles for three days; that was fun, and in fact very enjoyable from several angles, even when we briefly got peeved at each other. He got along fabulously with Patrick – their minds interlock quite well, and Patrick is always so happy to meet anyone who really understands what he's talking about.
While he was here, I kept talking, in a rather incoherent way, about a big house in the country where the people who matter to me could find a place to live: separate apartments (Mitchell said "chambers"), but shared rooms, kitchens, etc. I suppose I'm rather afraid of the financial, emotional and logistical future, for myself and for them – and it would seem so ridiculous if I, Mitchell, Trisha, Sophie, Patrick, Susan H., and all the others living alone and trying to get through middle age – and fairly soon older age – were stuck doing it in isolated apartments here and there. Oh well; perhaps I should have moved to the ashram years ago....
My dear John, from Australia, sent a long message with lots of pictures (he's as beautiful as ever in the 'normal' pictures, but I will confess to finding the bronzed-and-oiled bodybuilding pictures a a bit peculiar – I shall assume it's a laudable fad; he did win, after all, and now he can just make sure he lets his body come back to normal, carefully). He's doing well, and gave some background on the new Australian political situation; and invited me there... well, we'll see.
•••
All right: rather obviously, I have to go work on this speech. About five or six hours left – and then of course there's the proposal due to Fred, and a shortened version of the presentation for him to give in Mexico....
Back to work.
December 01, 2007 in AIDS/HIV | Permalink | Comments (0)
I've realized something a bit peculiar about the London responses to my presentation about music and AIDS.
One of the questions – really a sweeping statement – was from someone who said they had a friend who hadn't liked to tell people he was HIV+. (Amusingly, I could figure out from his elaborate circumlocutions that he was talking about David O.-S., who obviously didn't care what people thought – he just didn't want to bother with their preconceptions and prejudices.) Somehow that seemed to the questioner a significant point: why would these musicians want to go public with HIV status, with identity positions, with emotions?...
Then I received an e-mail from another participant that asked the same question in a different way: and claimed that this would be the most significant concern for most listeners.
The question seems to me utterly beside the point: what does it prove that you know someone who does not want to disclose their status? It's clearly a personal choice, appropriate in different circumstances; and analyzing whether there are social pressures on both sides seems a bit unnecessary, as most of the psychological and social literature (and in fact practically every newspaper article or television documentary) points out the same thing. Does disclosure make these more public figures (and my own public figure) problematic, or does it discredit them, or something?
It appears that, for these Londoners, disclosure is a bit shocking, or a bit shameful, or a bit ridiculous, and needs to be explained. Faced with all this data, and all the complicated cultural and aesthetic questions that arise from it, their first response is: but why would you discuss all this in public?... and they keep returning to the question, as a dog worries a bone.
If I were back in Hong Kong, and the Chinese were asking me, I would think to myself: ah yes, a face culture, a shame culture, where public image is so important – no wonder they are bothered by this. But it seems so peculiar – this isn't, after all, Victorian or even Edwardian, it's twenty-first century London – doesn't it seem odd to you, that they can't let go of this trivial discussion?...
November 21, 2007 in Academia, AIDS/HIV | Permalink | Comments (1)
The session chair is standing, the first paper is over, and through a long wave of applause intended for someone else I move through a labyrinth of aisles towards the stage. I’m wearing khakis, emblematic of the Eastern aristocracy, the conservative controllers who went to school with me; shoes beige and just too light to seem quite serious. The chair is introducing me, pausing, trying to remember exactly who I am: he looks at me for confirmation, clues, but I pause, silent and confused, before I start to speak: “I was at the –” He remembers suddenly, cuts me off, and shifts smoothly into a lecturer’s drone, handing out my credentials in the standard order. They are mostly correct. I nod to the audience, settling our relationship into a stable and predictable one, but then ruin it: I pull up a large black leather upholstered piano bench and sit, straight and, hopefully, dignified; but of course the other speakers all stood. Well, last night was very tiring, I really need to sit down.
No tie, I should have worn a tie, and I shouldn’t have this pinstriped blue business shirt open at the throat: not, definitely not, two buttons open, that’s far too much, I discreetly button up the second while shuffling papers, looking as though I’m aimlessly fooling with the shirt front. The shirt itself is conservative, a bid for a Connecticut WASP kind of credibility. I begin introducing my paper, talking about what I’m going to say, preluding everything: the subtly planned hook of the beginning, my dedication to a dead man, and I say the dread word AIDS without flinching or emphasis. The word ‘gay’ is frankly stated in this clearly heterosexual environment, they are academically, liberally calm, but on some of the quieter ones, the men with the correct ties or women with their hair in a bun, there is a momentary look of panic: did they think they were safe from sex, protected from the body in the academy, did they think that the university would keep all this away from them? I love that panic: shocking the bourgeoisie, an old habit from my avant-garde days. I should unbutton that second button again, I always had a strong neck, a square collarbone – no, I’m droning into the main part of the paper, I can’t unbutton it, that would be too obvious. I do wish I’d worn a tie, I’d feel solid, sure, in control, taking advantage of male privilege to coast through this paper. On the other hand, there are the marks on my neck, where the doctor burned off a number of small disfiguring bumps two days ago: they don’t look good, scattered small blistering scabs. It’s like being marked, but people don’t know that they’re from a damaged immune system: those little bumps mark us unless we take out after them, attack as soon as we are attacked.
Moving smoothly into a long abstract patch, will they understand any of this? and if I go too fast they won’t have a chance, I unfold a complex matrix of arguments, stepping carefully and quickly around a rather flimsy link in the chain, I hope no one noticed. Shifting forward on the stool, the comforting, damp softness of the black, soft leather. It helps me to keep going, which is difficult given the fog still hanging in my head, that rich dinner last night: you can tell from my pale face that there were three wines, a sweet aperitif wine followed by a dry white over the first course and then a deep, sharp red, then ending with the rather disappointing champagne that I’d brought.
Moving into my conclusions, tying it all up: making one last mention of AIDS, of people who’ve died. If you only knew, my scholarly audience, my own deep ties to those deaths: the loved men, the dissolving general hopes, the prefiguration of my own death: although I’m still in pretty good shape, there’s nothing to worry about in the next year or two. I like to think.
Ah. Conclusions, and not a moment too soon: I’ve been stumbling too much in the last two pages, my vocal cords fighting through the gunk of this morning after. End. Applause, their eyes distinctly warm, the supposed objectivity of academics up against the pleasure of an interesting paper. Because it certainly is interesting, I know that much. There is a question, easy to handle, I dispose of it neatly. Another one, more broadly stated and positioned, and I start to have trouble: what am I talking about? Am I answering the question he’s asking? I look up at my questioner and pause, trying to sort out my position, my arguments. His eyes are warmly sympathetic, even more than I’d expect, of course we all know what it’s like to be up here in the hot spot. I become aware that some are looking sympathetic, others are looking down or aside. I stop again –
And then the ground opens before me. I suddenly see what they are thinking, see it with perfect clarity. This isn’t sympathy around a difficult question, the genteel encouragement of senior colleagues: it’s my pale face, the scabs on my neck, I’m sitting holding onto the bench and talking through phlegm, I mentioned AIDS as a hint, as a warning, and they’ve guessed much too much. They know, they all know my story, but they’ve gotten it wrong: seeing the signs of my fragility, my illness, they think I’m making some supreme effort, fighting through death in order to – oh my God. Blinking at them, mumbling an excuse and pulling papers together, leaving the stage clumsily, too hastily amid the growing kindly applause. Thank you, thank you. So kind, so supportive of what they think must be just about my last, I can’t hold on to all of this, I wanted understanding, sympathy, but not this, they must stop clapping, they shouldn’t smile in that melancholy way, gentle eyes boring into me, I’m trembling as I sit, they’ll see it and misunderstand, I’m choking, strangling, can’t stand them all so kind because I’m still alive –
[Los Angeles, 3/7-4/1/92]
March 04, 2007 in Academia, AIDS/HIV, Writings: Prose | Permalink | Comments (0)
December 26, 1995 – San Francisco
This evening something rather unexpected happened... I had been exchanging gifts at the largest department store in San Francisco (you'd think Lars would know that I wear a medium shirt by now), and dragged home, fairly tired, on the subway. My regular train didn't come, so I took one which puts me out of my way about five blocks; during the walk, along a quiet residential street with a few streetlights, I passed a Victorian house with two men sitting on the front steps, drinking what looked like eggnog. One of them hailed me – "Hello, how are you," or something similar – and I paused for just a second; then he said, "Do you play the piano?" I was surprised, but said, Yes... and he said, "My friend Carl, used to be a piano teacher, he's pretty sick, and he'd like it if you'd play something for him."
Here I felt somewhat caught out – I'm not much of a pianist (let's face it, I was a singer who banged out a few things on the piano, at the very best). But I could hardly refuse... so he led me into a rather strange drawing room (bourgeois and fairly well off, but with odd hand–made decorations with lots of glittering things, and various religious symbols scattered around), and I put my jacket and shopping bag on a chair and sat down to an electric piano... I said, well, maybe I can play one thing, but I probably won't remember anything else. He told me, that's fine, Carl's in the next room, and he was a teacher; so it doesn't have to be perfect, he just wants to know that the piano is being played.
I was feeling somewhat trapped – not by him, he was perfectly nice, but by my own limitations at the instrument... anyway, I banged my way through Couperin's Les baricades misterieuses, and most of one of Chopin's Nouvelles études (the one with the 2–against–3 stuff), which are practically the only pieces I can get through without the music anymore. The situation felt safe, but odd, as though I had fallen into an O. Henry story – and my own rather frantic self–criticism was the biggest concern of all. (Electric pianos seem so different – was my left hand really that heavy? And why do the pedals seem rather strange?) I stopped and looked over the controls for the volume, etc.; the man asked me if I had been brought up Christian, which I answered rather evasively (I always do).
Then someone – Carl, of course – began moaning in pain in the next room. ("Pretty sick," in my neighborhood, usually means: dying of AIDS; the "pretty" is a modifier indicating extremely sick, in pain, close to the end.) The man rose rather calmly and said, I should go be with him now; feel free to keep playing, if you don't mind; if you have to go, I've left something on your jacket for you. I couldn't think of anything else from memory, but fortunately the Bach French Suites were on the piano, so I hacked my way through several of the slower minuets. Then I thought, well, I guess it's time to go. When I picked up my jacket it had a rather unusual handmade cross on it, fashioned of Mexican coins nailed to wood, with a large rhinestone in the center... I put it down on the chair; I didn't want to be ungracious in not accepting the gift, but I really don't care much for decorative objects, and I tend to be rather allergic to Christian symbolism – so I thought he wouldn't mind too much if I left it behind.
And walked out and home, thinking: music really matters, sometimes...
January 14, 2007 in AIDS/HIV, Music | Permalink | Comments (1)
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