in the hall of mirrors

AIDS and Memory

[Speech for the second World AIDS Day vigil in Newcastle, UK, on December 1, 2005. My speech for the 2004 vigil is here.]

It’s a difficult thing, to lose someone… but we still have the stories, the memories.

A couple of weeks ago, I received a fairly large package from an obscure address in the California mountains. I was expecting this – some weeks before he died, Jay had e-mailed me to say that his friend and executor Marilyn was sending me something – but I didn’t know what it would be.

It was a photograph, packed in way too many Styrofoam peanuts in a box too large for it – maybe because someone thought it was very precious, and needed to arrive intact. The photograph is frankly pretty amazing – it shows a man with a long drooping mustache, wearing a neatly wrapped nun’s wimple on his head, plus a vast, ruffled, elaborately constructed dress that looks like it could have been the style in the French court two hundred years ago. The dress is patterned with all sorts of music signs – notes, staves, G-clefs, and so on; he is carefully buttoning up a pair of very high, very fancy boots, each of which has maybe forty buttons on it.

It’s quite something, believe me.

I recognized the man in that amazing dress – it was an old friend of Jay’s, and also of mine. Bill Graham was his name, but he was known as the Reverend Mother – he was a member of the Sisters of Perpetual Indulgence, the hilarious male nuns that were such an important part of 1980s San Francisco life. You may know them from Maupin's Tales of the City – they’re the nuns roller-skating through the streets, putting up political posters and handing out condoms and safer-sex brochures. Bill himself was called Reverend Mother because he was such a kindly father- (or maybe mother- ) figure for all the other nuns, and for a lot of other people too. As you can guess, Bill was beloved by many – including of course Jay, who apparently hung the photograph over his desk, next to the window. Bill died in the late 1980s, rather quietly, during the height of the AIDS epidemic; for Jay the picture was a reminder of a source of wisdom and kindness in the midst of disaster.

Jay himself was startlingly handsome, in a Prince Charming kind of way – blond wavy hair, strong chin, dimples. He was also amazingly kind, wise, and helpful, especially to ditzy youngsters like me who needed somebody to explain what the hell was going on in life. In the late 1980s, he left San Francisco for a series of sometimes mysterious new directions – he lived in San Diego for a while, and worked with psychiatrist Jeff Leiphart on documenting and publicizing alternative health research related to AIDS, including good and bad stress (apparently they’re different), hyperbaric diets, and so on. When he left San Francisco, he became more of a loner, partly because, as he admitted, he found it unbearable to spend so much time thinking of dead friends; he avoided contact with old acquaintances, he purchased a boat that he used to sail around the world. He always had big ideas and launched into them with great energy, leaving them behind when they no longer seemed interesting or fulfilling.

He was diagnosed as positive in the mid 1980s, probably not long before he left the Bay Area. I had looked for him intermittently over the years, chasing rumors and often losing the trail; but it wasn't until the winter of 2003-2004 that I found him again. He had moved to a house in Hemet, a tiny town in the California mountains, where he stayed until he died. He was working on a massive historical novel about Charles Dickens. He described his life – very solitary, very quiet – a beloved dog, an elaborate irrigation project for the land around his house, reading and no television, a landlord he seldom saw. He told me that he didn't look well – lipodystrophy, wasting – but as I hadn’t seen him face to face since the late 1980s, I was skeptical, thinking he probably didn't look so bad. He started going into Palm Springs to see doctors, and also started working with a writing group – I believe some of them have been looking to see if his novel can be published in some form.

By May 2004 Jay and I started regularly e-mailing each other - supposedly once a day, and always at least three or four times per week - to keep each other working, to try to inspire each other, and to whine about our various minor HIV illnesses. He was a great comfort to me at a number of points where I just needed somebody to kvetch to about feeling tired, old, or whatever. This exchange ran for more than a year, until he found out, in June of this year, that he had liver cancer. After allowing himself a brief time to get upset, he started focusing on what time he had left: how could he plan for the future of his book, how could he responsibly leave behind his family, his belongings, and the handful of people with whom he still kept contact? I last heard from him in September – after that I sent a few e-mails, but didn't get any answers until a friend of his told me he had died the week before.

I don't know if I can sum up Jay's life: he was clearly remarkable, in a lot of ways – a born hero, in fact. He remembered so many of us from his earlier life, dead and alive, in such detail – he had a great love for his friends of the 1980s, and the fact that he went off to be by himself in his last years was not because he didn't miss us all. In fact, it was a result of one of the most powerful forces in his life – his need to look at the big picture, even the great picture; and his insistence on trying to live in such a way that his life would have a bigger meaning, and a greater impact.

***

Stories inside of stories. The memories and the love we held – well, really, the love we still hold – for all sorts of people who aren’t with us any more. That’s become a big part of my life – I know I can move on, but my memories are precious to me, as they should be.

On the other hand, there are all those people who haven’t left us yet – or who shouldn’t leave us yet. In the past two years, I’ve worked with, and come to know, a lot of people who were born in Africa; some of them have been sent back, sometimes ruthlessly, in the past few months; others have been threatened, pushed around, and as far as possible pushed away. The British government has sent back people with AIDS, many of whom have been on medications here – often ignoring the fact that those same medications aren’t available back in Africa, which means deportation is essentially a death sentence for most.

For those who have died, we have our stories and our memories. But there are a lot of people here – and a lot more out there, in the city, across the country, even across the world – who haven’t died, and who don’t need to die. I love my stories, my memories: I love those photographs, and I love remembering Jay, Bill, and many others. But I don’t want to be left with only memories: so many people in my life, in our lives, should still be here in five years, in ten years, in twenty – we should get to make new memories and to see them often, healthy and happy. I hope we do.

[December 1, 2005]

Unusual

Weirdly energetic today.

No, strike that: not weirdly – normally, but unaccustomedly, energetic. (Beep beep beep: adverbial overload alert.)

Feeling fairly calm, physically not depressed, awake, all the way down to my 'core' sense of my body. Woke after sleeping only six hours (short for me) ready to do things – vacuumed, did a bit of cleaning, settling down to write and edit. I even had coffee (well, instant, anyway) the past two days, without a disastrous gastro reaction – that in itself is unusual. The only big hitch is, of course, the number of things that there are to do – story of my life the past decade or so, there is always a vast backlog of everything; but I'm sort of used to that by now.

But I don't feel, physically, or perhaps psycho-physically, unable to deal with it. It would seem that the new medication might actually have a significant impact on my life; and that would change a five-year – no, strike that too – probably more like a sixteen-year reign of depressive reactions to daily intake of toxic chemicals. Isn't that strange?... one point for the behaviorists, I guess....

The Process

[Los Angeles, 1991]

I’m not dying.

I’m sitting on the couch next to the windows with my feet up, feeling the breath of the afternoon air; the sun slants away across the grass and its sprinklers. I’m wearing my gray robe, the heavy warm one, and waiting stoically for another coughing fit. I’m sick again this week, but I’m not dying. Of course, I do have a damaged immune system, and I’ve been having various troubles for some time now, digestion, skin, it’s all quite annoying. The doctors fuss over me, at least when they’re sure that insurance will cover the cost, and give me tests and various prophylactic medicines. Prophylactic medicine, that’s always an embarrassing thing to talk about, I think they need a new word for it. But then, sensitivity isn’t exactly an overwhelming concern for the medical profession. Today I just have a cold, but it seems to have ambitions to become a mild bronchitis; the hacking, wet coughs are tiring, and I am full of antihistamines that aren’t working. Actually, they are working in that I can’t quite think straight, and everything I touch seems slightly padded, and when I take the corner between the kitchen and the hallway I can’t stop myself from veering into the wall. However, in spite of these problems, I think I can definitely say that I’m not dying.

When I talk to people I haven’t seen in a while, particularly over the phone, I can almost hear them thinking: I wonder what he looks like now, how is he doing really?, and I always make it clear that I’m really doing just fine. Yes, I have occasional problems, no, I won’t be in today because I’m not feeling well, no, it’s not serious. It’s hard to convince some of them sometimes, most people obviously prefer soap operas to just picking up the dull shards of living, day after day. Yesterday, when I called to cancel a meeting, I was coughing explosively into the phone, wiping it off, trying to get through a few sentences coherently. I could hear the concern in her voice, and could imagine her working out a tangled problem in friendship and management: what do we do if he gets really sick, do we keep paying him or what?

Dying isn’t a medical category, not really. Doctors aren’t comfortable with ideas that emphasize time and process, they’re much happier with machine metaphors – either you’re working or you aren’t, and when you stop working they try to fix you, and if they can’t do it someone has to go out and buy a new model of whatever you were. And then there’s a bill for labor and parts. And even for normal human beings, the kind with feelings and hopes, dying is always a retroactive narrative, a story that is told only after its end has already happened. He’s dead now, so he must have been dying since last June, or even March when he first went into the hospital. Or, he’s looking just fine, he was sick last year, we all thought he was dying but I guess he wasn’t. And we all say, I’m so glad.

And dying can go on for so long. There are certain difficult types who claim that we’re dying from the moment we’re born, but I think we can ignore them since they’re mostly drunkards and poets. And so always we continue to live, moving through our different processes, some of which inevitably include being sick in various annoying or inconvenient fashions. But when the secret disaster begins, when the cells of the body begin to whisper among themselves, when morale drops in the liver and the spleen starts to spread nasty rumors of impending collapse: as though we’re being sold to the Japanese, and you’re all going to be fired. And inevitably the rumors get out, and the stock in T-cells starts to fall: it was worth so much more last year, but now look at it.

I wander the house, looking through the various rooms. I manage to generate the energy to start washing the dishes, but get bored halfway through and go back to the couch to lie down. My heart is racing strangely, probably from the combination of medicines; it is impossible to sleep, and I drift in and out of an irritable semi-consciousness. I go back out to the couch to watch the twilight, the kids from across the street running up and down the sidewalk. Lately, I haven’t liked my T-cell counts, or the way the subjects of wills, insurance, pentamidine and such keep appearing in my phone conversations and lists of things to do. It is, frankly, not amusing; I would prefer to spend my time otherwise. I am forced to admit, I’ve been hoping that the universe would get the point if I acted rather cool, somewhat preoccupied, when such things come up; but then I suppose the universe isn’t known for perceptive sensitivity, any more than doctors.

It has been pleasant to lie on the couch, to read comic books and feel the late, fading sun. I have enjoyed these days of being sick, in spite of the coughing. The nicest thing is the slightly woozy feeling from the drugs, that’s a big help, I like that a lot. It’s pleasant really, it’s been nice to call people up and tell them to go away, that I won’t be in, that I won’t be able to do various annoying jobs. I should do this more often. But there is that cellular unease, that feeling that things have been shifting when my back was turned, that the rules are changing and I haven’t kept up. I consider the health of others, those who died recently, surprisingly, and meditate on the disagreeable feeling of seeing familiar names in the obituaries, and of going to my computer address list and changing the information: erase the phone number and address, and put instead: ‘died 5/12/91.’ I consider my body’s reactions over the past weeks, I try to relate my energy and muscle aches to the increasing improbability of ever going to the gym again. I suppose I should be changing my diet too, but can’t imagine finding the energy. I wonder if they have a pill that prevents one from giving up. I sit and stare into the dark, watching the street lights come on one by one, irregularly.

Having reached various conclusions, I think it would be best to be open and straightforward about them. I turn on the light switch for the lamp above my head. I look severely at the coffee table and the couch, and I tell them, explaining it very clearly, making sure they understand that I’m making a precise distinction in both the temporal and interpretative spheres, that it’s certainly not that I was wrong before and am admitting it now, no, it’s just that there are certain processes, and certain changes that occur in those processes, and that our judgments are always based on the facts we have at hand.

“So, okay: now,” I say, and, aware that my audience is showing signs of impatience, I try to state my central point before I lose their attention, “now, I’m dying.”

[Los Angeles, 5/14-8/13/91]

Toxic

Headaches, diarrhea, sudden bursts of fatigue.

Not overwhelming, just enough to notice, and to make me stay home when invited to see Guy Fawkes fireworks. It does seem rather weird, doesn't it, that a "reformulated" Kaletra would give me transitional reactions like a new medicine – but perhaps this confirms that this reformulation is different, that this one might really have fewer side effects.

Or – aargh – that my liver really is in trouble, and I shouldn't have added back in unnecessary vitamin supplements. How do I know?...

We'll see. Meanwhile, publishing In bed, as I did a few days ago – a long, complicated poem I've never really shown to people, or discussed in workshops – feels particularly appropriate....

Promises

Friday: a day of things whose colors were muted, rather dull colors mixed with gray; but those things, quiet and apparently unimportant, were nonetheless good, and important.

Reading Sontag on Goodman and Artaud, for no real reason, just because it was the book I picked up on the way to the bus, on the way to the doctor. Thrilling moments, full of that fantastic intelligence, that honesty, flashes of depth that promise to answer the questions that have bothered me lately – that is, how to live in a way that is worthy of its own needs. And such balanced, fused glances at the entire history of the twentieth century – even when that's not the point of the article, her ability to put it all together in such powerful ways. And the dazzling images of how she wrote at the time, in 1972 – a small apartment in Paris, an ascetic approach to life, creating for herself a space to do absolutely nothing but make words....

Then the doctor: casual, a 'professional' visit, where we both know so much of what we're talking about that we practically communicate in telegraphic code. He'll check the tests to see if my worries about my liver matter at all, or are just illusions made out of transient winter viruses; he's a bit concerned about my cholesterol (a side effect of my medications), but we agreed that rather than adding a cholesterol medication just yet, I'll use this as another thing impelling me to get some exercise.

Best of all: Kaletra, the most obnoxious and probably most important medicine I've been taking for – what? seven years now? – has finally been 'reformulated'. It's still basically the same stuff – it still has ritonavir in it, unhappily (doctors like ritonavir because, although it has a miserable effect on fatigue, mood, and the whole gastrointestinal system, it stays in that system, and keeps everything else with it – just what we need, something toxic that sticks around). But the reformulation, reputedly, cuts down on side effects – he says all his patients keep sending him messages saying, thank God, this is so much easier, why didn't they do a reformulation three years ago....

So that's good. Promises of feeling much better.

Online was a Quicktime copy of Wender's Wings of Desire, which I've promised myself I would see for nineteen years, since it first came out – my most interesting teacher at the time, the aggressive but brilliant composer named Paul Reale, considered it a must-see (and, given his anti-minimalist polemics, I'm sure he thought it was an antidote to the whole postmodern wave of 1980s art). It's beautiful, shades of grays and shimmering music (and ideas – why didn't anyone tell me Peter Handke was involved in writing the script), much more surprising and textured, and much more about Berlin than I'd realized – I think I put off seeing it because I was worried that it would be disappointing. It is really a sort of beautiful heartache movie, not just because of what it is, but also because it's about Berlin... which was my first overwhelming experience of a real Europe: huge apartments and those great dark courtyards – a city that gives you so much sheer room – space to live, vast spaces to think and do and act, a city that offers genius amid the rain and the schnauze. But it's also a city that sits heavily on your shoulders: the excitement comes with a cost, that of the sheer heaviness, the darkness, of overwhelming histories, of traditions, of powerful minds and terrible cruelties....

In comparison, my beloved cities – San Francisco, Sydney, Amsterdam – are blithe baubles. And even New York merely seems young, almost tentative, next to Berlin.

So it was a day of promises. Such an important aspect of living – they used to say in est seminars that it was our promises to ourselves that were so important, as they were the sources of everything else in our lives. Unfortunately, I have always been a bit scattered about my promises to myself – not like an uncaring friend, but more like a rather helpless and inept single parent, one who confusedly promises that things will get better, that we'll go to the park, to the circus, and then when there's not any money for the bus simply says, sorry kid, that's the way it goes. Which may be why I am always so saddened, and angered, by my own bad faith with colleagues – books I am supposed to write, research I'm supposed to do, in order to keep promises to Gerhard, to Meredith, to V–....

But the change in medications, the depth of some of the things I read and looked at today, suggests a promise (even in a month like November!) of some kind of renewal: of a new set of promises, that could actually be kept.

Workshopping

Today I co-presented a workshop on writing about AIDS for the local gay and lesbian writer's festival. During the months of arranging for this workshop, I'd worried that the overlap between the HIV and writing communities here was small or nonexistent – which is probably true; but we managed to guilt some of our friends and fellow writers into showing up anyway, and so we had enough people (eight in all, including both of us presenting, which was a comfortable number).

I did my usual schtick – overview of art about AIDS; I was, somewhat unusually for these presentations, the only positive person in the room. Which ended up identifying me as The Representative Sample, as it were; among the usual discussions, I said something I've said several times in the past few months – that I've ultimately identified too much with AIDS, that increasingly I've made my life revolve around it, and I'm aware that that is rather silly of me. (Which, not entirely incidentally, probably indicates that I'm at a point where I can start to live out beyond it – although both my research and my volunteer work tend to drag me back in.)

Anyway: the structure of the writing part was for each of us to write a sentence about our experience with AIDS, and pass it to someone else to continue. Claire, a handsome young woman who is also a dramatic and accomplished performance poet, gave me the following sentence:

All through my teenage years, me and my peers were bombarded with four words: 'Don't die of ignorance'.

The shock of those times: no wonder the slogans were so merciless – don't die of ignorance, safe sex is good sex, silence equals death. No room for argument, no space to wiggle through: you can read between the lines of all those huge posters – actually, between the individual letters, those great big seventy-two-point Helvetica letters, booming down at you like a speaker coming out with Big Brother's voice.

I mean, I sympathize of course – all those doctors, social workers, government policy makers, faced with the exotic, chaotic scariness of Sex. With a capital S, naturally. The secrecy of sex, the difficulty of legislating it, because it's so hard to talk about – well it is for me anyway, whenever guys would ask, what do you like to do?, I'd turn all dumb and blushing.

But that's where the problem is, isn't it? The shapes of all our thoughts, our days, the ways we walk through the streets, all are overlaid on top of our passions – they take their shapes from what's hidden, from what's hot. And, for me, just as I was figuring out what was underneath, to have so much change all at once –

I wish it had all, always, been different: as though our lives were lived under palm trees, near white beaches, in circles of huts, our needs immediate, our friends affectionate, and funny, and difficult, and demanding.

And alive.

AIDS in the World

[Speech for the first World AIDS Day vigil in Newcastle, UK, December 1, 2004.]

Tonight I’m thinking about some of the places I've lived and visited, and some the people I’ve seen and known, over the last twenty years. Many of those people have been touched by, or concerned about, AIDS, and a lot of them are marking this evening in some way – it’s easy for me to imagine what they might be doing tonight.

For starters: the other side of the world – in Hong Kong, the elegant young woman who runs AIDS Concern will be directing various helpers in a smallish, polite, but well-organized event, among steam trays of dim sum. Young Dr. Chan will make a brief speech, then smile hello to some of his patients. Later, young men in short-sleeved rayon or cotton will escape the clattering of caterers’ pans to dance the night away at loud fundraisers in Zip, then the Powerhouse, until they disband into taxis scattered along the steep hills of Central.

In Sydney, a colorful crowd surging through Oxford Street is creating an impromptu street festival. Most are wearing red ribbons – some as tattoos on their biceps – and dropping money into baskets held by drag queens, each competing to make more money for the AIDS clinics. Summer is starting to peak, and brawny, sweaty guys with their arms around each other are shrieking with laughter at Pam Ann, who, dressed as a stewardess and standing on an outdoor stage, throws condoms at the crowd while maintaining a stream of insults in her rambunctious Ozzie accent. At dawn there will be couples of all sorts staggering home to take Panadol, then drag themselves in to work.

Crossing the Pacific, in Los Angeles, a benefit with this year’s crop of Hollywood names takes place at the dazzlingly postmodern Bonaventure Hotel. Michael Kearns will probably speak, exhorting the acting community to stay involved, and everyone will network, smiling, wearing red ribbons and watching to see if they can get into camera range. Down in West Hollywood, my friend Terry, her fashionably cut hair dyed a color I may not have seen yet, could be herding her HIV writing group through a poetry reading at the glass-and-steel Gay & Lesbian Center, or maybe this year she is performing in a radical-political cabaret with other riot grrrls at a lesbian club.

Trisha, in Phoenix, may be performing one of her surreal stage works, with political overtones that refer to people with HIV, illegal immigrants, and the Iraqi war, all at the same time. She has a small but serious audience of students from the local university, the men with long hair and glasses, the women in jean skirts. Joining her on stage are her ex-girlfriend and her dog, both of which are trained to help her in the tangled, symbolic ending.

If we fly to New York, the big professional AIDS organizations are holding benefits in Victorian hotel lobbies and in bare white galleries; women in gray power suits, Armani-suited lawyers and city politicians are joined by some scruffily dressed activists and artists. But most of the activists are down in Chelsea at an ACT-UP demonstration, posters and chants at attention, striding past bored, patient policemen who have watched this every December for what seems to them like decades.

Further south, in the suburbs of Washington, my mother is watching television. She will probably see some news show, or perhaps a public television documentary, that talks about World AIDS Day. She won’t say anything about it, but in a day or two my eldest sister will send me an e-mail: hey, Mom hasn’t heard from you in weeks, you’d better give her a call. And how are you doing, anyway?

Berlin: the president of the German AIDS Foundation is introducing pop stars at their big yearly benefit at the Komische Oper. Down in the Kleiststraße, Heinz spends the time until the late leather crowd starts to come into the bar filling a rack with postcards of handsome, shirtless men, pictured smiling and saying, Safer Is Better! In Sitges, in Rome, in Gran Canaria, the bars pause the music for a brief remembrance in the tiled courtyards.

In Cape Town, the earnest, charming Mandisa is on a platform, restlessly moving back and forth as she exhorts a gathering of students, children of a generation of apartheid activists, to focus their political efforts onto getting medications for their country. Her fellow activist Henry, who is looking a bit thin these days, will be talking to a group in his native Uganda, emphatically handing out condoms, especially to the young men who are hanging out in groups, snickering and looking at the girls.

In the great city of London, an apparently endless network of events in churches, shops and nightclubs is building up to Friday night’s Red Ribbon Ball, where AIDS activists of all stripes will come to dance and decompress after so much work. Carl, who hardly ever stops taking charge, is still working though, managing the volunteer booth and making sure everything happens on schedule – until he finally gets out onto the floor to dance the night away.

And I think of other friends, scattered far from the big cities: among the small beach towns of eastern Florida, people from Ma Jaya Bhagavati’s ashram have been cooking for days to prepare their trips around hospitals up and down the coast. Ma herself, brash, cheerful, and so beloved by the patients who see her each month, will talk to every one, swooping in and out of hospital rooms while bringing them cakes and biscuits, creating a chaos that the nurses have learned to fit into their schedules.

Meanwhile my friend Jay, in his small house in the dry California mountains, doesn’t go out much these days, because side effects from his medications make him shy of being seen by people. Tonight he is at home with his dog, perhaps lighting a fire against the cool night air, and working on his historical novel, adding to the rows of binders on shelves along the wall.

A few hundred miles north, in my beloved San Francisco, there’s a certain calm, as there has been for some years – as though a great storm has passed over. Because in San Francisco, many of the dead are long dead, and most of the living are taking their pills, going to the gym, and planning to be around for a while.

Among the small hilly streets and gingerbread houses dotted around the Castro, someone is complaining, don’t take that candle, it’s an expensive one – and further down the street it’s – you’re not going to wear that, are you?

But finally, at the last minute, or a little later, they’re grabbing jackets, clattering down the stairs and out the door into the chilly Pacific night, to join, halfway along its length, a vast wave of people carrying candles, walking up and down the little hills along a darkened Market Street, all transformed into a great quilt of tiny lights as they reach the monuments of the Civic Center.

It is a quilt, really. Like the AIDS Quilt, but not quite like it – not a memorial, but a living network of people who remember, people who may be worried or frightened, people who are calm, or happy that their medicines are working, people who have lost someone, or who have learned to go on…

And, like the other quilt, every panel is beautiful.

Thank you.

Politics of border crossing

I tend not to believe much in politics; only in the past few years did I begin to think about my own past, and why that might be – after all I was sixteen when Nixon made Watergate; a few years later I moved to San Francisco, to a thriving arts community, just in time for the disastrous Reagan years and the slashing of all arts funding, which left us without work or vocations in a world of rapidly increasing homelessness and greed-oriented inequality. And of course the dramas of my life have occurred around AIDS – being left in the lurch by Reagan/Bush administrations in the 1980s, and being deported from Australia by the Howard administration five years ago. Not to mention that, although I normally vote Democrat, I've had so many experiences of the contemporary weakness and cluelessness of that party – Carter, Clinton, etc.; if only they had backbones, if only they cared enough to actually change things – a vain hope.

So I tend to assume that all politicians are either ideologically against anything I care about, or far too wrapped up in their own selfish needs to give a damn whether the segments of society I occupy are taken care of or not. My default position tends to be: keep your head down, maybe the government won't notice you – because if they do they'll certainly nail you to the wall.

Two weeks ago we did one of our AIDS presentations, this one for a group of psychology students; one of them asked the (faintly irritating but very perceptive) question, What are you most afraid of? The other two speakers answered as you might expect, talking about death, illness, incapacity. I said – and you may not choose to believe this, but it's true – that death and illness no longer seemed particularly frightening to me; unpleasant or frustrating, but not frightening. Perhaps that's why I got named Nachiketas; to most people it must sound as though I'm pretending to not be scared of something that supposedly scares everyone on earth, or as though I'm simply fooling myself – but, quite honestly, I think I can imagine my own death and illness fairly accurately (I have a lot of experiential data, after all), and it really doesn't worry me.

What scares me – and I was a bit surprised myself, to hear myself say this – is the prospect of being sick far from home, in a country that has decided not to take care of me, and unable to leave. (There are, of course, plans to wreck parts of the NHS, or national health system, that has taken such generous care of me in the four years I've been in the UK; I do notice the news when it refers to that.) Essentially, the fear of being stranded: having learned from the Australian debacle that governments don't care about abusing foreign nationals (after all, you can't vote them out, can you?), I am wary and somewhat careful about living overseas. The illusion that all rich, developed, mostly white countries would never maltreat members of other rich, developed, mostly white countries is just that: an illusion – think how quickly that could vanish in any atmosphere of political change. And no government in their right mind would regard a foreign national with AIDS as anything but a liability.

Does this sound implausible to you? Think of it this way: I fall ill, and become incapable of doing my job; after some months my medical leave ends, and I am terminated. My access to UK health care ends with my work permit and national insurance number; or, of course, changing laws mean that, even with employment, my UK health care ends. It becomes impossible to pay the rent here, and too expensive to move my belongings and books back to the US – I sell them all, at of course an enormous loss (who buys second-hand stuff?), while still too ill to really figure out what's going on. And on my return to the US, since I haven't worked there or paid taxes in ten years, I am not eligible for many disability or medical programs; it takes some months to get this even half straightened out, and what I am eligible isn't enough to cover medications or care; and meanwhile, if I have moved back to a big expensive city (where I can't really afford to live), there might be local grassroots programs to help me out – I remember the boxes of old medications at Body Positive in Los Angeles (probably acquired from people that had died) – or alternatively I don't land in a big city, and have no support at all. Trust me: I've been to this place before – it really does exist, even for middle-class citizens of a rich country; and there aren't many ways up from there.

I suppose all this avoidance of politics sounds odd, and as though it doesn't fit with some of my professional work: after all I support a journal on Music & Politics, and much of my work is supposedly political. But that's all about identity politics, and my approach is very much focused on identity, subjectivity, personal freedom: which is, rather obviously I suppose, a politics that is based on the assumption that "real" politics (i.e. governments, armies, courts, etc.) cannot be productively influenced. It is, admittedly, a politics of retreat: but one I've come to in an honest fashion, I suppose.

Of course, you can't always keep your head that far down: rapidly developing, potentially enormous, war scenarios in south Asia, the Mideast, and of course now North Korea could easily result in a world war polarized along religious lines, or the kind of nuclear scenario that we worried about for decades during the (former) Cold War. But again, I tend to assume I can't do anything about it, and can only hope that none of the selfish, fanatical, power-obsessed people in charge does anything too terrifically stupid –

Anyway: I keep my head down.

Dementia Poets

From 1987 to 1992, I was part of an HIV+ writing workshop in Los Angeles run by the wonderful Terry Wolverton. My main partners in crime were Gil Cuadros (the most successful of the lot, who published his powerful poetry collection City of God with City Lights before he died in 1996), Kevin Martin, and Mark Lane; the four of us, plus a couple of members of the workshop whose names I've mislaid over time, wrote the following one silly evening, at a time where AIDS dementia was a very real prospect for us all.

It is really a chain of giddy in-jokes – those who know me will see my dirty thumbprints on 6, 7, and 11; Gil agreed with me on 7 (this is from when a time when the tiresome Dennis Cooper was considered The Thing), and he was clearly reacting to me in 10; Kevin's lemon poem (quite a fine one too) gave us no. 1, and I can see that Mark was guilty of 3 and 4 – but, beneath the black humor around losing one's mind, it still reflects the affectionate warmth of a group of friends huddling together and ignoring the storm raging outside.

The Dementia Poets School of Writing:
The Ten Rules of Style

1. Always start with lemons.
2. Never use proper names.
3. You don’t have to be on antihistamines to talk to your furniture.
4. Always disagree with everything so that everyone gets totally confused.
5. (I forget what no. 5 is.)
6. That is not funny.
7. All parodies of Dennis Cooper should be introduced as such, to avoid the embarassment and confusion of others thinking you actually want to write like that.
8. There are no ideas but in things.
9. Blame it on the virus.
10. If you know what an objective correlative is, just keep it to yourself.
11. It’s not a matter of opinion, you’re just wrong.

Explaining Nachiketas

I probably need to explain the previous poem, and the story of Nachiketas, and my own connection with it. I'll tell all this from my point of view... which might seem a bit roundabout, but if you're patient I'll get to it.

In the late 1980s and early 1990s, there were three powerful forces keeping me going after I was diagnosed HIV+; they included my brilliant Jungian analyst Mitch Evans, my equally brilliant writing teacher Terry Wolverton (who was running an HIV writing workshop), and Ma Jaya Sati Bhagavati. Ma Jaya, as she is known, is a spiritual teacher with an ashram in eastern Florida, about midway up the coast; she is an amazing and extremely dramatic woman – just one of her many facets is a powerful focus on AIDS activism. In the late 1980s one of her gurubais (or disciples), who also happened to be my AIDS Project LA 'buddy' (i.e. the guy who checked on me, talked to me, saw that I got my groceries, etc.), brought me to meet her on the first of a series of visits she made to Los Angeles (and later San Francisco). Although I am not a particularly religious person – I've never done any formal practice in relation to the ashram – Ma and many of her gurubais are close friends, and an important part of the past eighteen years of my life.

One thing Ma typically does is give people a spiritual name; such names are usually taken from the Hindu pantheon and legendary figures, or related names associated with their qualities or strengths. After I'd known her for a year, she still had not given me a name – as far as I knew; she called me 'Poet' (a real honor of a name, of course!) but nothing else. When I finally asked about this, she admitted that she had a name for me but was concerned that I, and in fact her gurubais, might find the name kind of alarming. When I insisted, she said my name was Nachiketas – and that he was the boy who made friends with Death. I was, and am, frankly proud of the name – it indicates a certain toughness, a certain unafraid quality, that I've discovered in myself over the years, underneath the layers of oversensitivity and complaining that are probably more obvious.

The story of Nachiketas? Well, it was first explained to me by Thomas Byrom. Thomas was a gay Oxford scholar of Sanskrit, who was dying of cancer while living at the ashram; he published translations of the Dhammapada (a major Random House edition, still in print) and the Ashtavakra Gita (which he titled The Heart of Awareness – Shambhala, 1990). He also made a translation of the Katha Upanishad – the most famous and important of the Upanishads – which was unfortunately unpublished on his death, but I have a bound copy. I don't know if it will ever be possible to publish it, but it seems quite good to me – sophisticated but quite readable. In any case, the Katha Upanishad is the story of Nachiketas. Thomas told me all this over the telephone, in the course of several long conversations in those years; we unfortunately never met face to face, because when I finally visited the ashram he had died, in October 1991; he has a beautiful memorial bench along the river near the ashram.

***

Nachiketas was a boy, the son of a Brahmin; his father was making a holy sacrifice, but frankly it wasn't much of a sacrifice – old, skinny oxen, quite unimpressive really; and the boy, who (as we shall see) didn't have much tact, said so. The father, in a rage, told the boy to go to hell: literally hell, to Yama, to the lord of death. Well, the boy was not only direct, he was also extremely literal-minded, so... he went.

And in Hell he stood before Yama's house, but the servants didn't know what to do with him, since Yama was away and this was a living boy; so they left him outside, where he waited for three days. When he returned, the Lord Yama was shamed, as this went against all the laws of hospitality. So Yama offered the boy three boons, whatever he wished to ask. The first wish the boy had was that his father would forgive him; and that was easy enough. The second was that Yama would teach Nachiketas the ritual fire, which he did (I don't understand much of this passage, it's extremely Vedic and archaic, but fortunately fairly short). The third, however, as is right in any good tale, is The Clincher: Nachiketas asks Yama, What is the secret of death?

Yama is not at all pleased at the question, which he says not even the gods are supposed to know; he argues, expostulates, offers the boy riches, anything he wants, and so on. But we have already seen that the boy is rather pig-headed (remember, this is the character I am named for); and finally the god of death has to give in, and he admits: the secret of death is the secret of life.

The story thus leads into the vast explanation of reincarnation which is the main body and heart of the Katha Upanishad. And now you know enough, certainly, to understand the poem – and the name, and what the name suggests. Except – and I almost forgot to say this – its literal meaning, which is: he is just going to wake up.