In the eye of the storm

14 December 2021 | Posted In: #141 Summer 2021,

2022 marks the 40th anniversary of the first Australian AIDS diagnosis. A new book explores the crucial role volunteers played at a time of disaster.

David recalls the uncertainty in his circle of gay friends when “AIDS hit Sydney” and how the individual responses to this uncertainty differed “before we actually knew that it was the HIV virus and the discussion and negotiation around what constitutes safe sex”. As he looks back on those early, uncertain days of the epidemic, David suspects that “there was probably a lot of fear”.

Gay men had good reason to be scared. Don Baxter — a leading political figure in Sydney gay life recently recalled the fear and anxiety of those days: “There was the prospect that the whole community would be decimated.” To prepare for the worst, the Sydney-based NSW Gay Counselling Service established an AIDS Support Group in mid-1983 with a brief to provide emotional support for the ill.

In 1984, following discussions with the Gay Counselling Service and the Metropolitan Community Church, nurse Peter McCarthy set about establishing a network of volunteers to offer home care for those with AIDS. The group called itself the Community Support Network (CSN) and its first training course ran over ten weeks in late 1984.

Spruiking the network, McCarthy declared: “We need people who can be good listeners and non-judgemental, as well as face up to the reality of death and dying.” As writer Nick Cook outlined in his history of NSW AIDS organisations — Fighting for Our Lives — the level of home care varied depending on need. It could range from “an occasional popin to cook dinner . . . through to 24-hour care for somebody who was bed-ridden and wanted to die at home”.

David joined CSN after attending the community forum on AIDS and hearing the call for volunteers: “I was probably one of the early volunteers.” Held in inner-city Sydney, the CSN course was an intense experience, both in the accelerated training and the emotions it evoked. “Obviously, you go through a whole pile of practical stuff on how to deal with people who are dying. You go through a lot of emotional stuff about doing it. But that sort of stuff happens on the job.”

In many ways, volunteering for CSN did become a job for David. As Dennis Altman observed of individuals who became involved in the HIV/AIDS crisis during the 1980s, a short-term intensive commitment often became an ongoing one. Self-employed, David had flexible hours, his own transport and, perhaps most importantly, a deep and steadfast commitment to caring for those who were dying of AIDS. “Once I started caring it pretty much became my life for a couple of years.”

Free during much of the day, David remembers that in the early years of CSN, as the organisation struggled to manage the growing case load of sick gay men, he became “pretty much a full-time carer because I had the business at night and had a car. So I was useful. I could pick people up and take them to hospital and doctors’ appointments, therapy and so forth.” The word that recurs as David describes these hectic years of full-time caring is “confronting”. He explains the detail:

“People who had HIV in those days, the time from infection to death was minuscule. When I first started caring, it was horrific. People’s average life span was under 12 months. Kaposi’s sarcoma was rampant. Going to the clinic at St Vincent’s was just a horror story. They would have certain days where people with HIV would present and there would be 20 or 30 people there with various forms of Kaposi’s sitting in wheelchairs. It was a very different disease in those days to what it became. It was very confronting.

Perhaps it is no surprise that David can easily recall the first man — or ‘client’ as they were described in CSN terminology — that he was assigned. “I can remember where he lived. I remember going there; it was a night shift. I actually walked past it the other day. He had an amazing apartment in Kings Cross. It was an olde art deco theatre. He was pretty sick. He didn’t last much longer; he was in the final stages. There were quite a few like that.”

David recalls of this client and others: “A surprising number of people chose to die at home. I think in those early days there was so much stigma. Even hospitals were not particularly welcoming places in those very early days. It took them a while to set up the AIDS wards and for the hospices to kick in and become a viable alternative. I think a lot of those early people died at home because that was the only safe place for them.”

For the best part of ten years, David cared for dying men in Sydney. As the epidemic in Sydney worsened, David began caring for friends as well as clients allocated by CSN: “When my friends started getting sick, I was the person they turned to.”

The blurring between formal and informal volunteering was not uncommon as more gay men became ill with AIDS. Men and women deeply embedded in Sydney gay life during the epidemic might move from caring for friends to formal volunteer groups and back again, or in David’s case, concurrent forms of care.

David muses on the deaths he witnessed during the epidemic, he says flatly: “Clearly there are good deaths and there are bad deaths.” From his experience during the AIDS crisis, what is a bad death? “It’s such a messy business. People assume the pain can be managed. Often it can’t. Often it can be extremely distressing and ugly.”

David became accustomed to caring for the dying and providing unobtrusively for them as they failed. He has his own philosophy of what the dying need from those around them. “You need to know what the boundaries are and the fact that there is often nothing that you can do. You just have to accept the situation . . . You need somebody who is not going to talk all the time. You need somebody who can just be there with them in the moment. People expect that [the dying] are going to ask you profound questions about the meaning of life, but that doesn’t come up when you’re dying, very rarely. What you can be is practical — that is the core of caring. It is being that practical person who cleans up the shit and does the feeding and all that kind of stuff.”

When I question David about the main challenges he faced as a volunteer, he returns to the stresses of caring. “I guess, on reflection, maintaining some sort of emotional equilibrium, psychologically, was something you didn’t really think about, but obviously it had an impact on you.”

However, there were, David maintains, rich and profound benefits to caring for the ill and dying. “It is the old cliche that you get far more out of it than what you can ever put in. That is absolutely true. It is such a privilege to be with people at that point in their lives and to be with their families. People open themselves up to you, put their trust in you; it is an extraordinary privilege. It is incredibly rewarding. I cannot think of a greater reward than being able to help somebody and be there for them.”

  • An edited extract from In the Eye of the Storm by Robert Reynolds, Shirleene Robinson and Paul Sendziuk. Published by UNSW Press
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