JEFFREY Robertson, 53, knows a lot about waiting. His own life has been tainted forever by the desolate impatience of it all.
When his body started showing the first signs of illness 20 years ago, he spent years waiting while doctors tried to figure out what was causing his growing exhaustion and those persistent coughs and colds that seemed to linger too long.
It was a wait that lasted until 1994, when he was correctly diagnosed with HIV. His status as a heterosexual male had confused the local medical fraternity still growing accustomed to what was thought of then as a gay man’s disease. Robertson says he “isn’t sure” how he got infected. “I’m not in the high-risk categories, so it must have been through a sexual partner.”
The six years without proper treatment was too long for his fragile immune system, and with the diagnosis came the news that he had already developed an AIDS-defining illness (an infection or disease that demonstrates the patient with an HIV infection has AIDS).
And then came the news that he probably had just six months to live. He had a wife and two very young children to tell.
“That 15 minutes driving home to them was the worst 15 minutes of my life,” he says.
It took nearly a month for his family’s test results to come back. They were clear of the disease. Other things, though, proved beyond hope. His wife uneducated about the realities of HIV/AIDS made him wear latex gloves when he was around the children. He was too sick to do much about it at the time, but it was the first sign that their marriage would not be strong enough to withstand his illness.
By 1996 his family had left but, with available medications already proving more effective in their management of the disease, Robertson was still alive. It was, he says, a kind of sickly limbo.
His career as a chef fell by the wayside; there were no plans he saw as worth making. In 2000, when he lost his mother to illness and then his daughter from his first marriage to a car accident, he decided it was time to stop waiting.
“I tried to kill myself,” he says. It didn’t work.
In the rehabilitation centre, counsellors tried to help him get his head around the fact he wasn’t actually dying.
“It was a huge shift,” Robertson says. “I was waiting to die. They showed me that I was living with HIV not dying from AIDS. Then I educated myself about how medications were helping people live longer, have ambitions.”
Now, despite a massive stroke caused by the high cholesterol levels of the medication that prolongs his life, Robertson has, he says, retrained his brain to pick up this new version of his life. It is, admittedly, a long way from the person he once was but, he says, “I’m happy”.
“My biggest problem during that time was that I felt I’d lost everything. I’d lost my will to live. I’d also lost my family, lost my ability to provide for my family, lost my ability to look after myself and never grieved (for) any of it. I just sat in this deep, dark depression for many years.”
Now, with the acceptance of more years of living shaping what can now be a future, Robertson volunteers part-time as a peer support counsellor for Straight Arrows, a support service for HIV-positive heterosexuals and their families.
“Twenty years on, I think people need to know: you’re not going to die. There are things you can do to help yourself if you don’t give up. Some people don’t even go on medications for 15 years because your system can cope with it if you are healthy,” says Robertson. “It’s not a death sentence; it’s a chronic illness.”
It’s a message Michelle Wesley, 43, is also keen to share.
She was 24 when she was diagnosed with HIV in 1989 and, with what she thought was just four years to live, put her plans to continue her tertiary studies in sociology on hold.
A couple of years earlier she had deferred from her Melbourne university to do what so many young Australians do travel and work overseas.
But the idea of exploring uncharted waters took a more dangerous turn when, along with new friends she made in Italy while working in a restaurant, she began experimenting with intravenous drug use.
She eventually left Italy for the safety of extended family in Britain and the hope, she says, to “get back on track”. It was too late.
“I developed a cold sore that wouldn’t heal,” she says. “I went to a GP and then, eventually, knowing my history of intravenous drug use, I was tested.”
The diagnosis was devastating.
“I wanted a career. I’d hoped eventually to have children, a partner, a house I just assumed it would happen. You go to uni, you get your career, you meet someone it all just happens,” Wesley says. “I didn’t know what to do.”
A determination that she would find out all she could about her illness (she was diagnosed as having AIDS in the early 1990s) and perhaps “be the one to prove them wrong and live” kept her going despite painful, recurring sickness. After a couple of years, though, the thought that she really was going to die had taken over.
“And then all I wanted to do was come back home to Australia,” she says.
With the care and support of family, and regular medical check-ups, Wesley says the eventual realisation that she was not going to die presented unique problems.
“I thought, ‘My God, I do have a life what am I going to do?’ I had no career, no plans. It’s been a step-by-step process that I’ve come to slowly.”
As her health has improved, her ambitions for her future have grown stronger.
“It is a positive place to be but it’s bitter-sweet. I often think, career-wise, if I had got my degree in the first few years and then started working, where would I be?” she says.
“Not having children is my biggest regret.”
As for the future, Wesley is hoping that her part-time work with support group Positive Women continues to allow her to help others find their own future.
“That can be just as mind-blowing as getting diagnosed,” she says.
For more details or support, contact
Straight Arrows: straightarrows.org.au
Positive Women: positivewomen.org.au
Victorian AIDS Council: www.vicaids.asn.au