Nearly 40 years ago today, Quest Founder and CEO Petrea King stood in Sydney’s Domain to take part in the first of many annual candlelight vigils held to remember Australians who had died with AIDS.
The ceremonies – held each December 1 from the mid-80s until well into the ‘90s to mark World AIDS Day – saw the Domain glow with memorial candles as the names of those who had died were read aloud.
“Each person would read out about 40 or 50 names,” Petrea said.
“I remember people made quilts in memory of someone they loved who had died of AIDS or AIDS related illnesses, and all of these quilts were stitched together. The combined quilts were probably the size of two football fields.”
On one level Petrea – then in her 30s – felt a common experience with people with the then life-threatening virus after facing her own mortality due to her acute myeloid leukaemia, which doctors had said she would not survive.
But one important difference Petrea observed was that HIV+ people and people with AIDS were horribly ostracised – unlike people with cancer – due to the immense fear and moral panic that surrounded the virus.
“I thought that these were my people, because like me, they lived in the ‘transit lounge’ of life. Like them, I was living in this very uncertain remission, but I couldn’t imagine being so terribly unwell with no one wanting to even touch you.
“Back in the mid ‘80s to late ‘80s, people were told they’d have 6 to 18 months to live once they’d developed AIDS. There was so much fear and so much that wasn’t understood and so much judgment. Meals were left outside patients’ doors for AIDS patients to retrieve themselves. It just broke my heart to think that people could be so sick and be ostracised.
“The government didn’t help with the Grim Reaper advertising campaign. That campaign was shocking, deliberately frightening, and completely unnecessary.”
To help people with HIV or AIDS, Petrea set up a support and meditation group at the Albion Street AIDS Clinic, which took place once a week for 11 years. She also created a voluntary massage program at St Vincents Hospital and the Sacred Heart Hospice at Darlinghurst and let people with AIDS and in need of support live in her own home at Crows Nest when they were suicidal or severely depressed.
“A lot of people didn’t have a soul in the world to help them, so I was often the one they’d talk to about their life, their death, their mortality, and everything in-between. It was such a tumultuous time, there was so much loss and so much grief.
“It took 6 months for me to get approval from the nuns at St Vincents to give those massages. They couldn’t understand why I’d want to touch AIDS patients. The very first person I massaged was Tony, a 17-year-old boy. He’d been kicked out of home at 15 because he thought he might be gay and was estranged from his family. I visited him when he was dying four years later at 21, and there was his mum – with him again, and massaging his feet. They were both filled with love.
“But many people’s close family members disowned them, and there were quite a number of funerals I went to where the family claimed their son or daughter died of cancer because they were ashamed of it being AIDS. There was this terrible stigma, and to a lesser extent, there still is.”
“In so many ways, with transmission rates being so much lower than they were and survival rates being so much better, we’ve come a long way. But in other ways, we haven’t come very far at all. There is still so much stigma for people living with both HIV and Hepatitis C – we still have a long way to go.”
During 1986 and 1987, Petrea also worked with prisoners with HIV and AIDS at Long Bay Correctional Complex who were demanding the same services provided to patients outside, including emotional support, meditation, and massage.
“Because I was providing those services on the outside, I was asked by corrective services if I would go into the prison and offer the same services to the prisoners.”
In large part it was the AIDS epidemic of the 1980s that prompted Petrea’s formation of what is now the Quest for Life Foundation. All through the ‘80s and ‘90s, Petrea ran retreats for people with both cancer and AIDS to come together at Canyonleigh in the Southern Highlands and confront their mortality together.
“Basically everyone I knew in the ‘80s had a life threatening illness, whether it was AIDS or cancer.
“There was a lot of love in those groups – and a lot of black humour too. We held beautiful ceremonies to acknowledge the people we’d loved and lost. Some of the people who came to those retreats were on oxygen or in wheelchairs. It gave them a place to feel like not just a patient, but a human being.
“I’ve still got photos of me standing with 25 men from that time and I’m the only one still alive, but there are also survivors, people who contracted HIV in those days and are alive today. The medical treatments have vastly improved.”
The groups included up to 50 people with life-threatening illness – cancer or AIDS – whose shared experience brought previously disparate people together, including a young opal miner from Lightning Ridge who was very homophobic before his change of heart before his death from melanoma at 24, and whose story is shared in Petrea’s book Sometimes Hearts Have to Break.
World AIDS Day is held on 1 December each year to raise awareness about the issues surrounding HIV and AIDS. In 2022, the red ribbon event focuses on the goal of zero transmission and celebrates improvements for people living with HIV since the first recorded infections. However, it also focuses on the idea that while HIV and AIDS do not discriminate – people still do.
The AIDS crisis began in Australia in 1982 when the first case was diagnosed in Sydney. By the following year, 3000 HIV infections had been recorded in Australia.
Since that time, the transmission and survival rates improved significantly. In 2019, there were 901 new HIV diagnoses in Australia, the lowest number of diagnoses since 2010.
Read More about Quest for Life
The history of Petrea’s work with people suffering from AIDS in ’80s and ’90s Australia is covered in several of Petrea’s books, including:
- Up Until Now – a autobiographical memoir by Petrea that details her journey through the early traumas in my life, living through the challenges of her brother’s suicide, her illness with leukaemia, to meeting partner Wendie Batho, the formation of the Quest for Life Foundation and finally establishing the Quest for Life Centre in Bundanoon.
- Quest For Life – In September 1983, Petrea was diagnosed with acute myeloid leukaemia and told she would not see Christmas. Quest for Life is a best-selling book that offers a beacon of hope for others living with cancer and other life-threatening illnesses and for the people who love them or care for them professionally. Petrea draws on her knowledge and experience as a naturopath and meditation teacher who has worked with over 80,000 people facing health challenges.
- Sometimes Hearts Have to Break – sometimes it takes a lifetime to bring us to our full glory. And sometimes it takes a life-threatening illness. The events of our lives, however tragic, can be a catalyst by which we shed all that stands in the way of us feeling deeply alive and at peace.