Sunday, 1 December 2013

Reflections on the Occasion of World AIDS Day

John’s groans had become almost whispers. Every time he stopped breathing we all sat upright holding our breath. ‘John, you’re tricking us,’ Lois said.

This went on for some time, his breathing becoming shallower, quieter. He began blowing saliva bubbles. His mouth filled with saliva which started to run down his chin. Bob grabbed a tissue and started to wipe it. There was the sweet smell of faeces in the air. Not a lot of dignity in death, eh?

John stopped breathing.

He was dead.

I walked out along the colonnade. The sun was shining. Such a beautiful day.

Then I was hit by grief. The tears came and kept coming. Snot ran out of my nose as though it was being wrung out of me. I wish you were here to help get me through this. I’m not going to see you again, am I?

A pigeon was startled by me and took flight. Was that John? I wish you were here. I shut my eyes and felt him put his arms around me from behind. I wanted to lean back and put my head on his chest but he wasn’t there. The feeling had been so strong that I wasn’t sure it hadn’t happened. I put my arms around myself and started crying again.

A family walked past me. A little girl asked her mother, ‘Has someone died?’

‘I think so.’

That’s from the book Holding the Man, and it’s Timothy Conigrave describing the death of his lover of 15 years, John Caleo, on Australia Day 1993, over 20 years ago.

It’s now 30 years since the first AIDS-related death was reported in Australia.

That’s a generation ago. Australia can be proud that our response was swift, thorough and honest, perhaps the most effective in the world, emerging from bold and decisive bipartisan leadership rarely seen these days. For many, the Grim Reaper TV ad is forever seared in the mind. Many lives were saved. And many have been lost, including, of course, those of Tim and John.

Deaths from AIDS-related illnesses in Australia will reach 7,000 over the next few years. That’s a small portion of the 25 million who have lost their lives to the disease worldwide, but it's still a figure that causes ache and reflection. There are around 35,000 people living with HIV in Australia at the moment. That's a small portion of the 35 million worldwide, but it remains a cause of concern.

There is still no vaccine or cure for HIV or AIDS. Without treatment, HIV infection remains a death sentence. With treatment - just one tablet a day - people can lead normal, active, healthy lives, with a life expectancy similar to those don't have HIV.

We face new challenges. There were 1,253 new HIV diagnoses in Australia in 2012, an increase of 10% over 2011, and the highest number of new infections for 20 years. For some men in their 40s, decades of safe sex practices can lead to fatigue-driven complacency. However, most of those new diagnoses were young men in their teens and 20s.

I guess that ignorance is more powerful than fatigue.

Tim battled against both these things. He was determined to write his book, his great love letter to John, and it was written with a superhuman strength against the fatiguing effects of grief, toxoplasmosis, PCP, depression, a threatening dementia and a handful of 25 tablets a day. His friends knew he would die when the book was finished. And he did, just a few months later.

The book was also a warning against ignorance. Tim believed that information was power.
He was involved in many of the early campaigns and even before he was diagnosed with HIV, he set about making a difference. He instigated the first theatrical response to HIV/AIDS in Australia – the play Soft Targets at Griffin Theatre Company. Later, he worked for both Fun and Esteem and Twenty Ten, organisations for gays and lesbians under 26 that still exist but were then in their infancy. He worked the phone lines at ACON. He gave up his career as an actor so that he could help save lives. Few of us have such selflessness.

Tim’s book is the great diary of those times. In 2005, when Tommy Murphy and I began work on a stage version of the book, we didn’t know whether it was a good idea, but it was a revelation as audiences filled theatres everywhere, from the tiny Stables Theatre to the Sydney Opera House to London's West End.

For some, seeing the play has been an act of personal remembrance. For others it’s been a journey of wide-eyed discovery of things they never knew. For most, we hope, it’s been a communion with one of our great love stories.

One night, a circle of older men hugged on stage after the show, remembering loved ones in a tender act of repair. Behind them, a twenty-something man and a woman looked on, fixed to their seats with wonder and terror. At other times, groups of schoolkids, not even born when the Grim Reaper hit our TV screens, would watch in shock as the story of these two remarkable men unfolded. They left the theatre, we hoped, with a new understanding of what it was like back then and with a new attentiveness to the fragility of their lives.

We hope that the play has continued the work of Tim’s beautiful book. We hope that it’s allowed us all, young and old, to know a little more of what people have been through. We hope that it’s encouraged us all to be vigilant once again against a disease that threatens, in some parts of the world, to bring down whole nations. We hope that it’s shared a story of unconditional love and of superhuman endurance.

In part, the play itself is an act of remembrance, just as many make today, and such acts are important.

For an act of remembrance is also an act of resistance - because in remembering we immortalise lives lost and perpetuate love.

It is also an act of renewal – because in remembering we discover new meaning in present lives.

It is also an act of revelation. Thirty years ago AIDS was an astonishingly visible disease. You could see it. Ghostly men walked the streets, and Ward 17 at Sydney's St. Vincent's Hospital was visited regularly, by many. But now, because of new medications, the disease, while still present, is not visible. It’s hidden. So the act of remembering is a way of making sure that we still see the disease, still know it to be real.

Remembrance, then, is our shield, our nourishment, and our spotlight.

And so I remember the poem Tim read at John’s funeral:

Death is nothing at all
I have only slipped into the next room.
I am I, and you are you:
Whatever we were to each other, we are still.
Call me by my old familiar name;
Speak to me in the easy way you always used
Put no difference into your tone;
Wear no air of solemnity or sorrow;
Laugh as we always laughed
At the little jokes we enjoyed together;
Play, smile, think of me.
Let my name be ever
The household word that it always was.
I am but waiting for you,
For an interval, somewhere, very near
Just around the corner.
All is well.

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