issue 250 - December 1993
The ache of sensuality...
The writer Edmund White discovered he had HIV in 1985.
The years since have sharpened his vision of life as, with ennobling
honesty, he has faced death, our last great taboo.
People are so afraid of dying that they’ve now decided that only those with Aids will die. There’s a line in a decadent French novel: ‘As for living, our servants can do that for us’. The new version seems to be: ‘As for dying, all those strange, marginal “at risk” groups can do that for us’.
We are all at risk. Those with HIV are not just crowded into the margins but are also inscribed in what printers call the ‘body text’, the main blocs of type in the book of our lives. Living with HIV we are disabused of our ready-made clichés, those mental pictures in which we never appear.
How to live in the present is something that I have thought a lot about. My lover (who is French) has Aids and I’ve been HIV positive at least since 1985, the first moment when the test to detect the virus became available. Soon after he was diagnosed at the end of 1989 we moved to the United States for a year and while we were there he was unable to work as an architect (no jobs to be had). He took up a new career as a cartoonist. Since he’s a perfectionist he worked night and day on his drawings for a year before he showed them to anyone. With amazing rapidity he evolved a style of his own, but he was constantly anxious, partly because he’s always been consumed by self-doubt despite his remarkable successes, but also partly because he knew he was on a very tight schedule. His life expectancy is far from brilliant. Yet despite the demands of his elegant style and his high standard, he’s managed to do one book of cartoons and is now planning another. I wonder how many of his laughing readers realize that many of these drawings were done while he was blind in one eye from herpes or fighting to regain his mental sharpness after a terrifying, disorienting bout of toxoplasmosis.1
His real courage is to have taken up a new artistic pursuit at all. Naturally on some level of awareness everyone knows all human efforts are futile or at least evanescent, but most of us manage to bury that appalling reality beneath the drudgery of work or the habitualness of daily life. The person with Aids, however, sees through necessity to the end of all needs, death. That vision neutralizes everything that is cozy, familiar, automatic. Someone once said that we couldn’t go on living if we knew the moment of our death. Aids gives us that tragic certainty, and if we go on living it’s out of courage or purest folly – certainly in spite of an acute awareness of existentialist absurdity.
Just as medieval monks contemplated human skulls in order to remind themselves of what lies in wait for all living creatures, in the same spirit the man or woman or child with Aids never forgets for long the imminent approach of mortality. Periodic crises and the death of friends are potent reminders.
But what to do with this awareness? When my best friend died of Aids I watched him in his last days juggle with two different senses of time, as though he were keeping two different sets of books on future accounts. He was intermittently lucid and knew all his efforts would soon be cut short; he wrote his will, saw friends, eliminated fools and finished his last book. At other times, however, he’d forget about his imminent death and would talk as most people do about projects five, ten, fifteen years hence. He was performing a delicate balancing act – fooling himself just enough to remain cheerfully engaged with the future while being honest enough not to miss a second of the present, of what may be the only heaven we’ll ever know – the heaven of friendship, of natural and artistic beauty, the ache of sensuality, the ennoblement of love, the taste of raspberries and cream.
I am reminded of all those unexpectedly joyful instants afforded by Aids: the permission to be as different from the others as one always longed to be; the courage to comfort the ill, even in the cold heart of institutions (prison, hospital); the inspiration to devise new ways of expressing faith or grief or to return to those consecrated by tradition.
Aids is a lonely thing. The body is alone and fearful when one awakens at three in the morning, sheets drenched through with night sweats. Aids is a despairing thing.
It is a slow decomposition rather than a mercifully sudden surcease; it’s a way of wearing down moral resistance, the devotion of friends, funds, resolutions to be optimistic. Aids may be opportunistic, but it usually comes inopportunely to cut short lives that have yet to be fulfilled.
Nothing can eradicate this suffering but some organizations help – with legal, medical and financial counsel, with information about treatment or resources, with everyday tasks such as shopping, cleaning, dressing, going out for a walk. Aids is happening to us all.
I long for a miracle to eliminate the need for so much help but barring that I hope everyone will contribute money and time to those organisations that care.2
Edmund White has written several novels including, A Boy’s Own Story, and the biography Jean Genet. This essay appears as an introduction to the forthcoming collection of photographs to be published by Cassell called Positive Lives: Responses to HIV (see Worth Reading).
1 An infection which can cause jaundice and brain lesions.
2 See Action.