Positive: Living with HIV/AIDS

By David Menadue

This is an uplifting story of resilience, activism, optimism, and the ability to take things day by day. Journalist David Menadue, who was one of the first people to be diagnosed with HIV in Australia and has been living with AIDS for longer than almost anyone else in the country, shares his 20-year struggle with the disease and his inspiring efforts to lead a positive life.

• Language: English
• Publisher: Allen Unwin
• Release date: Apr 1, 2004
• ISBN: 9781741153330

Book preview

POSITIVE

DAVID MENADUE

POSITIVE

ALLEN & UNWIN

First published in 2003

Copyright © David Menadue 2003

All rights reserved. No part of this book may be reproduced or transmitted in any form or by any means, electronic or mechanical, including photocopying, recording or by any information storage and retrieval system, without prior permission in writing from the publisher. The Australian Copyright Act 1968 (the Act) allows a maximum of one chapter or 10% of this book, whichever is the greater, to be photocopied by any educational institution for its educational purposes provided that the educational institution (or body that administers it) has given a remuneration notice to Copyright Agency Limited (CAL) under the Act.

Allen & Unwin

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Web: www.allenandunwin.com

National Library of Australia

Cataloguing-in-Publication entry:

Menadue, David, 1952– .

Positive.

ISBN 1 74114 064 1.

1. Menadue, David, 1952–. 2. Gay men – Australia – Biography.

3. AIDS (Disease) – Patients – Australia – Biography. I. Title.

306.7662092

Text design by Chong Weng-Ho

Typeset by Pauline Haas

Printed by McPherson’s Printing Group

10 9 8 7 6 5 4 3 2 1

For Bridget and Colin

CONTENTS

Preface

Acknowledgements

Prologue—No Visitors Allowed

PART ONE

1 A Secure Place

2 Testing Times—1984

3 A Soulmate

4 Panic

5 Turmoil

6 Leaving Work

7 Living with a Prognosis

8 Attitudes to Death

PART TWO

9 Sandpits and Building Blocks

10 Bullies

11 The Golden Nine

12 Secrets

13 Lucky Breaks

14 Love and Lust

PART THREE

15 Celebrations

16 AIDS Politics

17 New Hope

18 Education

19 Support

20 Positive

PREFACE

Being positive about being HIV-positive has been one of my saving graces over the last twenty years. While I don’t subscribe to the view that you can defeat something like AIDS with affirmative thought alone, taking an optimistic view about your prognosis is an important ingredient in survival.

I have lived with HIV since the early 1980s, through a period when people were stigmatised by the media, right-wing politicians and church leaders, among others. Even some people in my own gay community, where I expected support, were frightened and unsure how to treat those of us willing to admit we were positive.

There were trying times in the late eighties and early nineties, when so many friends were dying from AIDS that it seemed we were experiencing a holocaust, our own private war, with hundreds of our friends being cut down.

I developed my first AIDS-defining illness in 1989 and was given two to three years to live by my doctors. I have managed to survive for many years beyond this prognosis. Incredibly, I am now one of the longest-surviving people with AIDS (as opposed to HIV) in the country.

There may be factors in my life and character that have helped in my approach to adversity. Certainly I think it has helped that I have been out as a gay man and person with HIV. There is a stigma around HIV/AIDS, and I have sometimes wondered if this was a factor in the deterioration in the health of my positive peers.

But I don’t have a particular answer to explain my survival. I believe that a fortunate mix of luck, medical expertise and improved treatments, support from friends and family—as well as an almost blind optimism on my part—has helped me to stay alive and tell my story.

HIV/AIDS remains a problem in Australia today, with a recent small but significant rise in infections perhaps pointing to a sense of complacency about the disease. In many countries around the world, it has become an epidemic of catastrophic proportions. Only a massive change in political will can change the path of what is already one of the most devastating epidemics in world history.

I like to think that the stories of positive people will play a role in overturning the ignorance and bigotry often associated with HIV/AIDS. If in some way my story can help to keep the issue alive, or help others with their way forward in understanding or living with the virus, then it will have been worth the effort.

ACKNOWLEDGEMENTS

Bridget Haire and Colin Batrouney inspired me to write about my experiences of living with HIV/AIDS in the magazine Positive Living. Without their initial encouragement, I would not have got this far.

I would also like to express my gratitude for the inspiration and guidance given to me by the late John Iremonger from Allen & Unwin. Without John’s patience and direction, I would not have persevered with this book. A big thanks also to Sophie Cunningham, who took over the publishing task so adeptly after John’s death, and to Bruce Sims for his intelligent and sensitive editing. Thanks also to Rachel Lawson and Sandy Webster for their help with the final editing process, and Chong Weng-Ho for the book and cover design.

Thank you to my friends Rosemary Noble, Bridget Haire, Tony Keenan, Sandra Gregson, Max Niggl and Greg Horn, who all read the manuscript and provided me with feedback. Thanks to Gary Jaynes, Graham Willett, Helen Pausacker, Jamie Gardiner, Peter McEwan, Richard Fuller and James Spence for their help with photographs and research. Thanks also to John Sharp, Jenny Brown, Lyn Harper, John Andrews, Ian Edmondson, Paul Attard, Allan Stewart, John Henshaw, Dale Withers, Alan Mayberry, Peter Carroll, Marjory Gardner, Louise Merryweather, Ed Brumby, Barry McKay, John Daye, Kevin Guiney, Mike Kennedy, Jo Watson, Leslye and Fred Thiess, Graeme Brewer, Darren Gaut, Dr Jonathan Anderson, Dr Jennifer Hoy, Eric Timewell, Richard Walters, Dennis Muir, Barry Horwood and Jim Hyde. And thanks to my sisters, Julie and Lyn, and brothers, Alan, Phillip and Trevor, and their families, for their support.

The research findings quoted in Chapter 20 are from Steven Cole, ‘Accelerated Course of Human Immunodeficiency Virus Infection in Gay Men who Conceal their Homosexual Identity’ in Psychosomatic Medicine, 1996, Vol. 58, No. 3, pp. 219–31.

PROLOGUE

NO VISITORS ALLOWED

I am told that I have AIDS at Fairfield Hospital in early 1989. I am not all that surprised. I tested HIV-positive in 1984 and have spent five years watching friends get sick and die from this virus. But as I lie in my hospital bed and wrestle my first serious AIDS illness, I am unprepared for the mental turmoil.

There it goes again. Banging and thumping noises that keep me awake at night. They’re coming from the room opposite. Is it the hospital morgue? There seems a lot of activity over there—maybe they drag the bodies there, after they die from this horrible plague. The corridors must be awash with blood. The cleaner must try hard to keep the floor clean. But the blood keeps coming back, filling the ward with a never-ending tide of death.

And it’s all my fault. Since I was admitted, people have been falling like flies. I hear a groan or a sigh in a nearby room: oh yes, another one’s gone. I’ve brought death into this place and now no one can control the madness.

I can kill people just by looking at them: one glance from my little eye and people—nurses or friends—are in mortal danger. I cannot be trusted and cannot even trust myself. I must not make eye contact with anyone.

The hospital will have to get rid of me. One night three or four nurses stand around my bed and stare curiously at me. I am not put off by their kind smiles: they have come to get me. One of them has a hypodermic behind their back and wants to inject me with a lethal dose. They need to get rid of me, to let the hospital return to peaceful times.

The doctors say that I have AIDS—and I know this means I am going to die soon. It might be tonight. I cannot go on much longer. I pray to God that I be lifted to Heaven in a peaceful, dignified way. I levitate, lifting up to meet my Maker.

But no, I must see my family one last time. The hospital has set up barricades outside the ward, with police and firemen to stop my relatives from getting in. I’ll beat them somehow.

Then a miracle—a closed-circuit television has been set up for me in a corner of the room. In my last moments on earth, I am able to see each of my brothers and sisters, and my mother and father, one last time before I die.

This madness is embarrassing to reveal. But it shows the level of physical and mental distress I was experiencing. Physically I was suffering from a serious, AIDS-defining illness called pneumocystis carinii pneumonia (PCP) and was being treated with huge doses of the antibiotic Bactrim. Strange mental reactions can happen to people who take what is a fairly toxic amount of this drug. But the highly paranoid and bizarre thoughts that were going through my head were also founded in deep psychological scars about having AIDS.

Friends come to visit me and are shocked at my disturbed mental state. ‘How did you get through all the bodies in the corridor?’ I say to Graeme, who has just arrived at my bedside. His look of stunned disbelief doesn’t really register with me. I’m sure there are bodies out there, but even a good friend like Graeme has obviously decided not to talk to me about it. We continue our conversation about what he and his partner, Darren, have been up to over the last few weeks. Another friend of ours is very sick with AIDS and we talk about him as if there’s nothing particularly wrong with me.

The same thing happens when John, a friend for more than twenty years, arrives the following day. All I can think about are the barricades I believe are stopping my family from entering the hospital to see me. They are elaborately constructed steel and wooden fences guarding the stairs to Ward 4. Policemen ask individuals for ID: if anyone connected to me is identified, they are banned. They can’t come in. ‘So how did you get past the barricades?’ I say to John, wondering how he slipped past the authorities. He mumbles a reply but clearly has no idea what I’m talking about. My brain then steadies itself, and John and I chat on as if everything is relatively normal.

The melodramatic scenario with the nurses and syringe might indicate that I watched too many Alfred Hitchcock movies in my youth. But I had also never gone through such trauma in my life. I can remember every bit of this experience, this temporary madness. During the worst period, my behaviour had led staff to place a sign on the door of my ward, NO VISITORS ALLOWED.

My recovery is slow, with the treatment taking about ten days to finally conquer the infection in my lungs. When I am put on a reduced dose of Bactrim, some of the delusions and madness begin to subside. I feel like I’ve been through a psychological marathon, where mental demons have tried to drown me in fear and paranoia.

When I am lucid enough to understand and trust the opinions of my doctors (no more fear of hypodermics), they tell me that I have suffered a ‘temporary psychotic episode’. It is not the beginnings of AIDS-related dementia or a sign of some serious problem with my brain. I am in a precarious health situation now, they say, and will have to take great care of myself in the future. When pressed about my prognosis, the nervous young registrar stutters out a response. ‘Well, on current figures, you might have two to three years to live. But there may be new treatments on the scene soon, so you can never be sure about these things.’

Two to three years. And I know that is optimistic: the current average life expectancy for someone after suffering PCP is eleven months. Why should I be any different? My close friend Michael has just spent three months getting over a second bout of the pneumonia himself, and is still very weak. He’s been in and out of hospital on a constant basis, and a doctor has told his mother that he probably has only a few months to live. If this is true, and Michael is to die, my friends must be thinking, It will be David’s turn next.

Of course I am feeling scared. I am a 36-year-old man with a good life, a career in children’s publishing, a large, supportive group of friends, and lots of reasons to live. I don’t want to die.

I’ve thought a bit about death and dying since the diagnosis, but the reality has never confronted me so starkly before. In many ways, I realise, I have lived in denial, thinking I would be one of the lucky ones who would somehow be spared from developing AIDS. I would remain asymptomatic. While the shock of having this delusion stripped away explains some of my distress, it isn’t the only reason I had gone through such mental torture.

I have been worrying about being ‘an agent of death’. I can only interpret this as evidence that I have internalised the social stigma of being HIV-positive. Clearly there is still an acute concern lurking in the back of my mind about my ability to pass the virus on to others. I have been particularly concerned about the risks of passing it on during sex, even when using condoms, and at times over the past few years I have chosen celibacy. Rejection from friends unable to cope with the idea of knowing someone with HIV has hurt me deeply, as have rejections from sex partners.

I have also spent years listening to negative messages from right-wing journalists and church leaders about AIDS, claiming it was a scourge visited on homosexuals and other sinners with ‘promiscuous’ lifestyles. For fundamentalist preachers like Fred Nile, from the Festival of Light in NSW, or Jerry Falwell from the Moral Majority in the USA, AIDS has been truly manna from Heaven. Moderate church leaders are far more compassionate and reasonable, but this negativity has affected me. Maybe this disease is an indication of God’s wrath and a sign that I should reject my lifestyle. My rational mind knows this is nonsense. But my vulnerable, neurotic side is not so sure.

For the media, this disease is newsworthy, guaranteed to provide sensational headlines. It has everything a shonky tabloid journalist dreams of: sex, gays, prostitutes, drug users, moral outrage and innocent babies infected by blood transfusions. The government gets in on the act, too, with its prime-time AIDS awareness campaign screened on television in 1987. A faceless, hooded Grim Reaper bowls balls at a little girl in pigtails to convey the wake-up message that ‘AIDS is here’. As a positive person watching this, I feel like I am the Grim Reaper, the harbinger of disease, the agent of death.

Unfinished business with my family has also come to the surface amongst all this madness in hospital. Perhaps the ‘police’ that stopped my family from visiting are a device my mind has invented to protect me from my fear of their rejection. My brother Alan has been visiting me regularly. But the fact that he has managed to break through the barricades does not register with my screwy mind. The rest of my family, most of whom live in northern Victoria, quite a distance away, have been contacting the hospital and enquiring about my welfare. And they’ve been told that I am not seriously ill. This is true in one sense because I have responded to the treatment. But they haven’t been told about the mental anguish I’ve been going through. Later, they’re upset to learn the truth.

There is something cathartic about what has happened to me during this stay in hospital. I’ve heard others say that coming face to face with your own mortality can have this effect. You look with harsh, savage eyes at the life you are living and resolve to make the best of the time you have left, if you can be allowed the luxury of a few extra years to fulfil your plans. Around me, I see an urgency creep into the lives of friends once they have an AIDS diagnosis: they rush out and try to complete as many life projects as they can, before their health deteriorates.

I’m not saying that I’m in a flat panic about imminent death as I leave Fairfield Hospital in February 1989. But I’m pondering my life, how I will adjust to this new illness. And how I will survive into the future.

PART ONE

CHAPTER 1

A SECURE PLACE

In early October 1982, I was celebrating my thirtieth birthday with some of the staff from the Publications Branch of the Victorian Education Department, where I worked. Ann James, one of the artists I worked with to produce colourful magazines for schoolchildren around the state, had made an ‘Over the Hill’ cake to mark our joint birthdays and the fact that it was all downhill from here.

I reflected later that I was over the hill in a positive way. My thirtieth birthday was a milestone—I could confidently say that I was as happy and secure as I’d ever felt. I had a job that I adored and a supportive work environment, including a gay boss and a remarkably liberal bunch of fellow workers. I was a lot less neurotic than I had been during most of my twenties, when I was coming to terms with being gay, trying to find the right career, learning how to be a confident and successful individual. During my nervous, awkward adolescent years, I had spent much of my time avoiding bullies who wanted to bash me up or taunted me for being a ‘poof’. My family life was finally starting to sort itself out, after my parents’ divorce and the trauma of several nervous breakdowns suffered by my mother.

My personal life had been relatively settled since the break-up of my first meaningful relationship. In late 1981 I had purchased a house in the inner-west suburb of Kensington. A large, four-bedroom Edwardian weatherboard, it was soon filled with friends looking for accommodation, and I was establishing what was to become a fairly close-knit and amiable household. There was something exhilarating about owning my own property. Along with the satisfaction of having a material asset that would hopefully help to give me some financial security, it was also good to establish my own roots and build the kind of security I once felt about my family home.

I enjoyed the company of my housemates immensely. John Sharp was an incredibly funny, easygoing friend who I had met in a sharehouse in Kew after he had been picked up by one of my housemates. Danny Vadasz was my first-ever boyfriend, who I’d met in the mid-seventies. Like many of my ex-romantic partners he was now a good friend, and involved with me in gay politics, including the group that produced the activist newspaper, Gay Community News. How some gay men are able to form close, ongoing friendships with former lovers, without too much jealousy involved, surprised a lot of my heterosexual friends. But it often worked that way for me.

Megan McDonald was someone I met through my work, when I visited the NSW School Magazine staff in Sydney. An incredibly tall woman with a deformed spine and overly large features, she had a condition called giantism, which affected her health and her confidence in public. She did look intimidating to people who had not met her before, but in the short time I worked with her, I saw that she was a charming, witty, highly intelligent and loyal individual who I could happily live with. She was coming to Melbourne in early 1982 to start a year’s placement with the magazine I worked on.

When Megan turned up one morning to move in with us, she must have got a bit of a shock. I hadn’t told her that I was a gay man. As the doorbell rang, people ran everywhere to put their clothes on. John was entertaining his teacher boyfriend, Michael, visiting from Adelaide. I’d also had a visitor for the night, a train driver who I had picked up at the Laird Hotel in Collingwood.

‘Oh Megan, I forgot to mention that we’re all gay here,’ I spluttered out.

‘Yes, well, I’ve worked that much out,’ came her reply.

The train driver left with a promise that whenever he was driving a train past our house, he would give a big toot to let us know he was thinking of us. It became a household joke that