in the hall of mirrors

Responsorial

Intermittently, over the past couple of years, I hear of the severe illness, loss of mental control, or death of a contemporary – not from HIV or related problems, but from, well, anything else, as it happens. As I am now in my mid-50s, this is becoming more and more a normal occurrence.

Unfortunately, at times I am slightly uncomfortable that my reaction – and by that I don't mean my own and real personal feelings, but my social, written or stated reaction – isn't stronger, more dramatically empathetic. I tend to give the impression of responding with, Well, so what else is new?

It's a weird side effect of nearly thirty years of HIV, HCV, etc.: this sense that illness and death are so unremarkable, so expected, that they are hardly real news, or cause for alarm. There are even the slightly bored semi-professional opinions that roll off my tongue to people who have been shocked at their own mortality – easy things like: make sure you write down all the medications, or: if you're in that much pain you should call and insist on an appointment today, or: oh yes, cremation probably is easier.

It must seem a bit eerie or heartless to my friends. I do know that at points over the past decade – most intensely with my sister Sandy's death, but also with the physical problems of other people as they pass by me – I have had a sense of irritation, of injustice: do you mean to say we, that is those of us with HIV, went through all of that, and we didn't win any points – any relief for the other people around us? You mean all of that just happened, and it wasn't any kind of redemptive... oh well, clearly an irrational underlying assumption that I don't take all that seriously. But it does pop up in the back of my head from time to time.

But then behind that irritation ('you mean to say that just anybody is going to go through all this, too, now? and it wasn't even particularly special that we all did it, so many years ago?') is this rather weak, disengaged response: ah well sorry you have a severe illness and might die in a year, and so how has everything else been going?...

It remains to be seen whether my responses, or at the very least my abilities to generate (real or apparent) social concern, will improve. Meanwhile, there is an odd sense of aging, illness and death catching up with the vast world of Other People Who Are Not Us, not members of this community of whom so many are gone; and also, probably, a selfish sense of being No Longer Special. Ridiculous, I know: but maybe it's only when these old attempts to make sense of things are exposed as nonsensical that we can really see, and let go of, them....

In the meantime, I guess I really should work on my ability to say the right thing at the right time. Hmm....

Globes

Working tonight on a program note for an old piece of mine – as it happens the final composition I ever wrote, in 1986 – Seven Last Haiku, which will have its premiere by the students in late March this year. One or two pianists are looking at it, and we have a cellist (Bennett is going to help me score a brief, light cello part within the original piano notes), and we'll get one of the young women with a clear, calm speaking voice.

Looking through the book of haiku translations, with their clarity and summary moments and lives, and remembering  what I was doing in the 1980s, among so much death and change and so many attempts to become one thing or another, all feels unexpectedly contained – as though the fears and losses and passions and striving of an earlier self are of course not gone, but have somehow shrunk, contained inside a glass globe, on a shelf among others.

This is, then, what it is like to look back on earlier selves – one takes a small globe from a shelf, holds it to the light, shakes it a bit to watch bits of glitter and snow swirl around... and then puts it back in its accustomed place, and walks away.

The dull world

So: the news from the doctor – the medication doesn't seem to be doing much; a final decision in another month or so, but probably this was all useless. Which was kind of expected anyway.

Annoyingly, since early December, and more so since Christmas Day (which was, itself, fun, at Michael and Andrew's), I am more trivially but sourly, tiredly, ill; the chain of colds and flus that everyone seems to be having (but I seem to be having more, rather than less, than usual); the unpleasant aspect of food, the tiredness of getting up... the sensate world seems dull and tarnished, a smeared mirror that won't wipe clear. I've thrown out several meals when they were cooked, because they smelled suspicious – which may well be just my distorted senses: I know I ate one bad meal last week, but in general many food smells seem unattractive at the moment. I try to come up with something to eat each time I am supposed to take pills... such a lot of food in the house, you'd think it would be easy; but nothing seems quite right.

Yesterday, after I'd thrown out a pizza on the day after it was ordered, and some tired vegetables, Katya, the Bulgarian woman who cleans for me (and who has tended to become quite protective of me) brought some pieces of cheese pita – she didn't call it that of course (that's the Greek name for it) but I can't remember the Bulgarian name she used. (These foods cross a number of countries – the truth is, in the wake of thousands of years of Byzantine, Ottoman, and Muslim/Christian/Balkan/Slavic/Greek wrangling, it's impossible to disentangle the origins of foods, or of musics.) It was kind of her, and very well-timed – I heated it in the oven for a few minutes, and enjoyed it; it felt comforting and quite safe, compared to some of the weird and toxic auras that food around me seems to have developed.

Of course a part of all this is the fact that I've taken the medication without the usual required antidepressants – which actually kind of upset the HCV doctor, he looked surprisingly concerned when we informed him of that decision. But I've managed, and I prefer it – it's actually worse to have that wrapped-in-cotton feeling.

Apparently an unnecessary addition, after all the coughing and tiredness and weight loss, is some sort of bacterial infection – upper respiratory? – something opportune that popped up between viruses. This week it has given me even more, dryness, coughing, and a sour taste that won't go away no matter what tooth-brushing I do, no matter how much fresh water or juice I drink. Clearly an antibiotic is the answer – hopefully not one with yet more digestive side effects; or would I care? – but I missed going to the doctor today, and apparently they no longer hold weekend hours; and this certainly isn't worth an emergency room, so I'll go on Monday morning before class.

So: dull, the sensate world full of sour, metallic tastes and smells, and that oddly torn muscle in my right hand....

I have been re-reading, for the umpteenth time, Tanith Lee's Tales of the Flat Earth, the first two books of five – and I've moved from the malice, fairy-tale joys and tragedies of the first book to the more intricately grand tragicomedy of the second, where Death faces down those who have stolen the draught of immortality. The bitter ironies of this part of the tale suit my mood – once Simmu has valiantly made himself into a hero and stolen the dull, gray liquid of immortality, he drinks, and he and all the many grand and brilliant people he has gathered around him drink; but they are merely human, and ill-suited to immortality, so that their energy, their purpose, drains away. They become dull, bored in a gloriously silver city at the end of the world, where they can do anything... but care less and less about doing anything. They become dolls where the clockwork has stopped....

A cruel tragedy, and one that is brilliantly told, with satire and sensuality leading to a dark sense of what a 'dead end' feels like.

Although of course that battle between lives and Death has nothing (or little?) to do with these trivial illnesses, the tone resonates... the sense, in this strange winter of bad weather and dying birds and fishes, that misery is not grandiose: it is just, well –

a bit miserable.

Dying / not-dying

Feeling well today. Then feeling very tired, so went and laid down. Then well again.

And talking to Alfred, who has more success and fame than I ever will, and who is thirteen years older. After having been treated yesterday by Jambo, my acupuncturist, who is twenty-eight, full of life and presence and direction. I feel somehow bracketed.

I've spoken before of my bad habit, over the past twenty years, of expecting to be dead soon – of AIDS, of course, if not just generally... – but there is also my bad habit of having always-already given up on myself, of thinking of myself as older and more hopeless and resigned than I am, than I need to be. Alfred, for instance, is unavoidably and almost even annoyingly sturdier and more optimistic, more youthful, than I am... I actually allow myself to be, no, I make myself into an old man.

My dream several days ago was of a big, dark music conservatory, a place where I was a serious student of the clarinet, where it was raining. A serious, respectable dream, I thought at first. But John, my analyst, pointed out that, although the dream is very respectable and not shameful or unhappy, it is in its way pretty bleak – just as my current work, my research, my teaching duties, are all things I don't much enjoy, just things I feel obliged to slog away at. Indeed, as an analyst, he is quite different than Mitch was – if Mitch encouraged me in grimly facing the worst (appropriate in those years of short lifetime expectations), John wants to know why I'm not enjoying my life more. It's an annoying question, and I really can't answer it – at least I can't answer it and still sound intelligent, in charge, in control.

An obvious problem – one that I'm seeing for what is not entirely the first time, although John insisted that I look at it a lot more than I have, more than I am comfortable doing – is my fatal, miserable willingness to be older than I am, more hopeless, with less to do, less before me, less hope. And, of course, why would I have hope, if all my tasks and work seem so mundane, if everything I set myself to do is essentially so boring? Even in these pleasant summer days, warmer than usual at these latitudes, I fret, I look backwards, I sigh at my usual despair and diffuse, uncaring use of the hours of the day. Frankly, who would want another twenty or thirty years of that?

I was reading Edmund White on various older writers and artists (Art and Letters), and it's true that many of them seem younger, more hopeful, than I am. A few are admittedly more hopeless... but those are the ones we know were seriously messed up (Bowles, Genet, Kafka, etc.). I'm neither of those – neither really deranged (okay, that is good, right?) nor particularly optimistic....

So, I can look at: my dreams. My thoughts. Me: and the limitations of my not very successful life, now dwindled to that of an academic living alone in a small foreign city. But, when viewed from outside, it seems so – well, silly: that I would turn those limitations into a good reason to truly, seriously give up, to cut off my hopes and stop living.

Unfortunately, I don't really know how to be a person who is not dying; or even, and this seems to be what John, and Jambo, want me to be, one who is, at least more thoroughly, living....

For Vanessa: Reflections on Rubinstein

[A memorial concert was held for Vanessa Knights last Saturday, May 3, a bit more than thirteen months after her death at the age of 38. I gave the following speech, which includes excerpts from a book first published in 1985 and translated in 1989.]

If you'll allow me, I'm going to tell you about a book I like very much, which I shared with Vanessa, who told me that she liked it too. It’s by the famous Renate Rubinstein – someone you’ve probably never heard of: Rubinstein was a Dutch political columnist in the 60s, 70s and 80s, well known in Amsterdam and a feisty opponent in any argument (and it is clear that she loved arguments). When she was in her thirties, she was diagnosed with multiple sclerosis; after seven years of refusing to talk about it in public, she wrote this short book, Take It and Leave It: Aspects of Being Ill.

Rubinstein was evidently a tough, strong, even an aggressive person; there’s a lot of pride, frustration, and anger in this book – she doesn’t like being sick, doesn’t like being weakened or unable to do everything she plans to do, doesn’t like being patronized or helped or avoided or supported, or practically anything else it seems. But there’s also a lot of intelligence here, and when she finally reaches a kind of truce with her illness you believe her, because the insights are so hard-won.

This chapter is about her cat (this was, of course, a page Vanessa especially liked):

"In my movements, I have become a stranger to myself. I just cannot accept it as normal that they have slowed down so. The only one who really finds it perfectly normal and not worth bothering about is my cat. She used to run up the stairs ahead of me, with her tail in the air in the Siamese way. Now she climbs three stairs and sits down, awaiting my arrival. Then a further two, another wait, and so on until we have covered the sixteen stairs to the top.

I have the impression that she does not find this at all strange. She does not want to be alone; she wants to be with me. Like a human being she cares more about attention than about food, and she prefers my attention to that of the nice uncles and aunts who visit the house. This slowness of mine, which I find so disconcerting, makes no difference to her. To cats, human beings are probably just lumbering creatures who can't run. Only in the Cat Academy of Sciences should they be able to measure the difference in speed between one human being and another. The ordinary cat does not notice the difference and adapts without a sound." [p. 97]

This chapter, late in the book, is about ‘The Advantages of Being Ill’:

"It has come as a bit of a relief that limits are imposed by the superior force of my labor-intensive disease. The day is no longer an endless time span, but a modest capital that needs to be managed carefully: about four or five hours of activity in the morning, an afternoon in bed, then dinner and a short evening at half strength. Everything you do costs calculable energy: preparing food, eating food, writing letters, visiting your friends, going to a film, the garage, the hairdresser, the dentist, the dressmaker. I have my work cut out to keep things moving. Time is no longer the monster that must be killed; it has become a scarce commodity, a piece of good fortune to do something nice with. And there is much promise of pleasure: books, newspapers, television, records.... In short, my time, that is my life, has become precious....

Besides, there is something mysterious that happens despite yourself. After a period of grieving over what you can no longer do, you begin to emphasize what you can do. All the literature for the handicapped recommends this attitude and when you first read it, you think: what nonsense, how terribly sad all this is. But if you are lucky, the change comes about of its own accord and then it is of course not at all sad. I can still stand on my feet, I think, I can get up from my chair. I can get off my [electric wheelchair] and look at a painting in the museum standing up. And that fills me with an unjustified but gratifying pride....

Perhaps, I think, anything is better than nothing. Perhaps a moment arrives when only breathing is enough joy to want to continue living. Living." [pp. 120-2]

The last chapter of the book is called ‘Death’:

"Life is unjust, nature is unjust, all that is important is unjustly parcelled out (love, health, beauty, money). How fair death is in comparison. For one thing is certain: everybody dies. It is not as if you were the only one who will have to go, while all the others stay. Or, what would be even worse, a lottery, and some have a ticket with 'mortal' on it. With our acute awareness of the injustice of it all, we could have believed it. But it's not so, everybody lives for a while and then disappears forever.

True, some people live to be eighty and others don't reach thirty. But even those who reach eighty find that their lives have passed too quickly. Those thirty, eighty, hundred years, how little it all is in retrospect.... Once you realize that, you don't demand so much of the short time you are here, look around and disappear. You have taken it while it lasted; in the end you will leave it. It was all pure gain." [pp. 123-4]

All pure gain…

Of course, Vanessa wasn’t so cantankerous about her illness, about being too weak to do some things, about not feeling well, or about the prospect of living a shorter life than she should have. But she understood at a young age that it was ‘all pure gain’ – well before I first met her, now six years ago – she knew her prognosis ten years before her death, at the age of 28, even before she met and married David. It was clear that in her energetic approach to her work, her devotion to her marriage, her enjoyment of travel and research and dancing and food, her strong connections to her family, friends, colleagues, students, and even to her beloved cats, that she had already understood this most important thing. It might seem hard for us, because of course we can’t help but resent how short her life was – but then think how terrifically successful her life was, too. It really was, all, pure gain.

Thank you.

Foolish scientists

Last month, when I was reading a lot of science fiction writer Greg Egan (in between visits to V. in the hospital), I was getting caught up in his characters – and not always agreeably: as Egan has a lot of interest in 'hard' science, his people tend to disdain the humanities, religion, emotion, and idealize science as All. I kept trying to parse this in a way that would either make Egan foolish or wise, but his writings remain in-between – he knows how confused his scientists get when they try to impose their scientific training on the more difficult aspects of the universe around them, but he also seems to think that any 'cultural' response to the world is simply outdated. Or almost, anyway; it's ambiguous territory in his work, and I suspect he is still (after five or six novels and a lot of stories) working out his position on all this.

It's related to that silly Dawkins book on atheism – which was so sharply parodied in episodes of South Park last fall – the absurd pretension that, not only does a modern scientist know better than anyone the depths of the universe; but also that, even within the limitations of modern scientific training, one can somehow pretend to know the 'real' truth behind all sorts of absolutes. It's the true absurdity of atheism – although I do tend to be uncomfortable with institutional religion, as well as with people who are certain enough of their beliefs that they need for me to agree with them, the certainty that there is 'nothing out there' is of course the most ridiculous belief of all.

I know all of this is fairly obvious, but – I'm always particularly amazed by the part of scientific reasoning where one goes through the process of saying: we can only know what we perceive under modern, accepted conditions; and we can only accept what we can extrapolate, both forwards and backwards, inwards and outwards, from those conditions; and therefore everything not extrapolated from those (obviously culturally limited) conditions is not merely unknown, but by definition nonexistent – which always seemed like the most ridiculous myopia, the most incompetent kind of thinking, especially indulged in by people who pride themselves on their ability to think. It divides the world into Mulders and Scullys – either we are so desperate to believe something that we distort everything we see to support that belief, or we are so skeptical that we distort our perceptions just as much to exclude any discourse that doesn't fit the basic tenets of our undergraduate textbooks in chemistry, cosmology... and, of course, medicine.

Seeing The Fountain, a movie from 2006 where Hugh Jackman and Rachel Weisz are tracked through three story lines in different centuries, brings all of this up again. The movie is a lovely poem of pictures; it's also unfortunately a rather silly tangle of ideas – the future images are interesting, but the story set in 1500 where Isabella is besieged by the Inquisition, and sends an unknown conquistador to find a tree/fountain of life, gets exasperating in its counter-historic clumsiness. Oh well, too bad, another oversimplified fantasy.

But the part of the story that occurs in the present, where a scientist is trying to find an instant cure for brain tumors to save his dying wife (yes, okay, quite nonsensical on its own – he's going to find just the right drug for this kind of tumor in the few days that are left before she dies? – the stuff of oversimplified daytime television movies) keeps Jackman stuck in a predictable but rather two-dimensional position – he is so frantic to get back to the lab to operate on monkeys, so that he can discover his miracle cure, that he doesn't actually spend much time with his wife, nor is he willing to listen to her when she talks about dying.

Okay, sure: obsessed with a cure, he's also really really bad at facing reality, and almost petulant in the face of the obvious need to simply spend time with her. It makes sense to some extent, but is so utterly childish – and quite stupid, really: it's not only his insistence on being the Enlightenment-style master of reality (mankind as in charge, surgeon as savior) but much more the fact that he doesn't even seem to realize how much of reality, of time, of love, he's missing out on: because he doesn't want her to die he doesn't want to face her dying, which means of course he misses out on all that there is left of her life.

Aargh. Stupid scientists.

When I turned from working on the sciences to go to the arts – around when I was sixteen – I did it for different reasons: actually, I did it because I wanted to work in an area where things seemed more mysterious, where I didn't feel I could find answers easily. I've always dug into places where I wasn't already able to intuit the final outcome (avant-garde, graphic scores, maps of time and perception); had I stayed in the sciences I might have had a better financial time of it, because frankly I would probably have been more skilled at my job; but I think I might have been a bit bored, especially with a daily world that had a visible 'end' to it.

But worse, far worse, if I had ended up being one of those guys who simply Didn't Get It – who simply couldn't accept that the universe is big and complicated and impossible to quantify, who thought that death and people and feelings could somehow be reduced to something manageable....

I'm so glad I spent that time with V. in the hospital. I'm so glad I don't think I know for certain where she is now, or if she is anywhere at all – and so glad I don't know where Reid is, and Jay, and Bill, and all the others. And so glad I don't think I know where I'm going, after I die, either.

Such a relief....

The Expert

Today I returned V.'s library books to the university library; chased by a student who wanted to chat, I just pulled away and said it was a difficult day.

Difficult especially because one of our first-year students committed suicide last night; a sweet kid, one who had had problems with depression and anxiety, but who hadn't shown any signs of them in class or his work lately. I was supposed to meet with his family today – they cancelled at the last minute, clearly too overcome to discuss the matter with any more strangers.

I suppose I am, have even practically presented myself as, a kind of expert on illness, death, loss: Nachiketas, the boy who makes friends with death. I do know the right things to say, what to do, I can fairly dispassionately see what people are going through and carefully maneuver around it, handle whatever shock or pitfall they are on the verge of at a given moment. A bit like a doctor, not quite like an undertaker.

Of course what's silly here is that I haven't learned for myself the best and most direct lessons from death. V. had clearly learned them – that people die, things go wrong, so: you work with what you've got and put energy into each day, because you won't have all that many of them. I, unfortunately, tend to indulge my tendencies towards laziness and passivity – even knowing that there is really nothing for me in life but getting work done, I still coast, leave it unfinished, leave projects in their fantastical unwritten but imagined states.

Ah well. At least I'm an expert at something....