Ingeborg van Teeseling

About Ingeborg van Teeseling

After migrating from Holland ten years ago and being warned by the Immigration Department against doing her job as a journalist, Ingeborg van Teeseling became a historian instead. She endeavours to explain Australia to migrants new and old at her website, and runs, telling people's life stories.

Life after HIV – Living beyond a death sentence

Approx Reading Time-10AIDS and HIV experts announce AIDS battle finally over in Australia. So how does it feel to live with what used to be a death sentence?




Good news! The age of AIDS is over. Or at least, in Australia it is. The rest of the world is mostly not as fortunate, and even here we’ve got 1,000 new cases of HIV every year. An estimated 25,000 people are living with HIV in Australia, and the new cases are mostly young people who were not born yet when the Grim Reaper killed 34 million people worldwide. They are fortunate, because they can’t remember the time when this diagnosis was a death sentence. Mick can. He also has vivid memories of his friends, and how they succumbed to the illness. But that is not his biggest problem. Mick survived. He was supposed to die fifteen years ago, but he hasn’t. And although living is great, it is the non-dying that still messes with Mick’s head.

Mick is 56 and has been HIV positive for more than 25 years. It was the early 1990s and gay London was in the grip of the AIDS epidemic. Mick ran a bookstore then, together with his partner Alphons. They had saved for years to buy the shop and it was going well when Alphons got sick. The couple had been practicing safe sex, but apparently that had not been enough to prevent the worst from happening. Alphons went downhill quickly: in a year, he lost most of his body weight, developed rashes and sarcomas everywhere and then he went blind. Mick ran the store downstairs and took care of Alphons upstairs. At the end there was a roster, with friends helping the terminally ill man go to the toilet and the shower. Alphons died in September of 1990, the third of their friends in that month alone. What Mick had not told his partner before he passed away, was that he himself had been diagnosed with HIV as well.

He made his peace with death. He was ready for it. And then it didn’t come. He feels he has overstayed his welcome. Around him, the world is moving forward…he doesn’t feel that has anything to do with him.

Mick remembers that the verdict had felt like a relief rather than a sadness. Everybody was dying; why not him? It felt right somehow. A liberation. Soon all this suffering would be over. So he sold the shop and took the cash to go travelling.

Of course, he was running away. But what else was he supposed to do? Sit and wait for death, while watching his mates go gaunt and brittle and fade into nothingness?

Not a chance. He took a plane to Brazil and stayed in Latin America for over a year. There was sunshine there, and people he didn’t know and, yes, he has to admit, unsafe sex as well. It was like dancing on the volcano, the last laps of life, sucking it dry for all it was worth. When the year was over and his money ran out, Mick returned home. There wasn’t much left of it, though. While he was away, eight more of his friends had died. The shop was run by somebody else and his rental flat was gone too. For a few months, he slept on his brother’s sofa, but that was fine, because he was going to die soon and then nothing like this would matter anymore.

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When he still felt okay after six months, he went back to his doctors. They did some tests and found out he was still HIV positive, but that it hadn’t turned into AIDS yet. There were medicines as well. Experimental, but promising. Mick was put on his first course of anti-retrovirals and although there were side effects, mostly he did fine on them. So fine, in fact, that months turned into years and years into decades. And now it is 2016 and he is still here. It sounds ridiculous, of course, but he isn’t certain that that is a good thing. It is not just that he is one of the last ones standing and that there is hardly anybody left with whom he can share memories. It is also not just that in selling his business and spending all his money, he has had to start from scratch. Or that he lives in a tiny flat in a not-so-good neighbourhood on a disability pension. That is all important, but not vital. The issue he can’t seem to get his head around is the fact that he is still alive. He had made his peace with death. He was ready for it. And then it didn’t come. Now everything is empty somehow. He feels he has overstayed his welcome. It is difficult to explain: like he lives in a parallel universe to everybody else. Around him, the world is moving forward, into tomorrow, the future. He doesn’t feel that has anything to do with him. He is alive. But not, somehow. Surviving a death sentence. It isn’t easy.


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