HIV/Aids 40 years on: ‘Almost everyone I knew who died was in their 20s or early 30s’

Often parents discovered their son was gay the same day they learned he was dying

The numbers continued to rise until the mid-1990s when new drug therapy transformed HIV from a deadly illness into a manageable condition.  Photograph: iStock

The numbers continued to rise until the mid-1990s when new drug therapy transformed HIV from a deadly illness into a manageable condition. Photograph: iStock

 

In Andrew Holleran’s novel Grief, a character recalls life in New York as a gay man at the height of the Aids crisis. “I used to think that the 1980s were like a very nice dinner party with friends, except some of them were taken out and shot while the rest of us were expected to go on eating,” he says.

When I arrived in West Berlin in 1985, the dinner party was just getting under way and it was still possible for my friends and me in our early to mid-20s to imagine that we would all get through it unharmed. Although the number of cases in Europe was starting to rise, the disease was still seen primarily as an American problem, concentrated in the two big gay cities of New York and San Francisco.

An enclave in the middle of East Germany surrounded by the Berlin Wall since 1961, West Berlin attracted young gay men from West Germany partly because they could avoid military service there. It was so cheap to live that you could get by comfortably working just two nights a week in a bar and the university system allowed you to study indefinitely, taking exams only when you chose to.

The freedom we enjoyed to live openly gay lives was won by earlier generations in the 1960s and 1970s to whom we felt scarcely any attachment and shamefully little gratitude.

We thought at first that Aids was their illness rather than ours and when safer sex guidelines arrived, along with testing for the virus that caused the disease, it seemed to be an avoidable danger. The German government worked with gay groups to spread the word about condom use within the community and most people practised safer sex, most of the time.

There were more than 50 gay bars in West Berlin, some with darkrooms for sex, three saunas and a number of porn cinemas with cruising areas. There was no official closing time for bars or clubs and although most venues did not get busy until after 1am, it was easy to find quick, fairly anonymous sex somewhere in the city at any hour of the day or night.

We could see men only a few years older than us who had become frail and rake thin, sometimes walking with a stick as passers-by swerved or looked away

Most of my friends did not have boyfriends – or not for long – but sexual partners would often become friends once the initial excitement wore off. We went out almost every night, either together or, as my Italian friend Giorgio used to say, “alone, like a homosexual”, on the hunt for love or, failing that, some action.

Inevitably, there were slips in discipline as condoms broke or were forgotten in a haze of drink or drugs, and as time went on we all understood how dangerous these lapses could be. By now, we could see men only a few years older than us who had become frail and rake thin, sometimes walking with a stick as passers-by swerved or looked away.

Those who were worried about a risky encounter could take a test which would show if they had been exposed to the virus, but many chose not to. There was no effective treatment and knowing you had the virus could bring its own psychological burden as you waited for the apparently inevitable decline and death.

One argument in favour of knowing your status was to protect your sexual partners, but the prevailing view was that we were each responsible for our own behaviour and that the wisest approach was to assume that everyone you met was infected. And the stigma attached to being infected, even within the gay community, was so immense that many of those who knew they were HIV-positive kept the information secret.

It was the late 1980s before people I knew started to die, often far from West Berlin in the towns and villages in West Germany from which they had come. The opportunistic infections associated with Aids were numerous but the most ominous sign was the appearance of dark skin lesions caused by Kaposi’s sarcoma, a rare form of cancer.

The numbers dying were so great that Berlin’s gay magazine carried pages of death notices every month, alongside ads for undertakers

Once those lesions appeared, more problems were usually around the corner, sometimes including blindness as well as various infections, including a specific form of pneumonia. They were often the trigger for people to go home to their families and it was common for parents to discover for the first time that their son was gay the same day they learned he was dying.

Quite often, the family would not want to hear from their dying son’s friends, whom they sometimes blamed for what had happened. Before widespread mobile phone use and the internet, the only possible forms of contact were by letter or landline and both routes were easily blocked.

By the early 1990s the numbers dying were so great that Berlin’s gay magazine carried pages of death notices every month, alongside ads for undertakers. The numbers continued to rise until the mid-1990s when new drug therapy transformed HIV from a deadly illness into a manageable condition.

Almost everyone I knew who died before then was in their 20s or early 30s and their short, unremembered lives ended in great anguish before they got going at all. Like me, they spent their youth in pursuit of pleasure rather than professional achievement, putting their energy into fun and friendship and leaving nothing behind to commemorate them.

In a cemetery in Berlin where some of them are buried, a memorial to those who died from HIV and Aids carries the words of St Luke: “rejoice, because your names are written in heaven”

Listen to Denis Staunton on The Irish Times In The News podcast here where he discusses the HIV/Aids anniversary.