Two months after the 1982 Mardi Gras, I developed swollen lymph glands in my groin and under my arms. I didn’t attach much importance to them because when I showed them to my doctor at the time, he said it was probably a transitory infection and not to worry too much.
Two years later, they were still there, and we also had more information about a mysterious “gay cancer virus” which had claimed lives in US cities since 1981. So, I attended the Melbourne Sexual Health Centre just in case there was some connection to my symptoms.
I was lucky to meet a switched-on doctor there, David Bradford who arranged for me to take a new test (then called the Human T-cell leukemia 3 test, the forerunner of the HIV test) which came back positive.
David said that the conventional medical wisdom was that only one in 10 people would go on to develop AIDS.
I felt reassured. I was feeling healthy and strong, had a secure job and a great life, and could live with those odds. As the eighties unfolded however, the experts started to say that maybe close to 100% of people might develop AIDS-related conditions and many would die.
Tragically, this is what happened to so many of my friends for the next two decades — and which began my own challenges to keep well and stay alive.
“There were no HIV treatments until 1988 when the experimental drug AZT came out which I jumped at the chance to take. It’s a wonder the drug itself didn’t kill me because it was later found to be given at four times the required dose and was causing massive muscle wasting to people’s arms, legs and faces. The virus was also doing this and by the end of the decade people like me were looking like scarecrows from the damage to our bodies.”
So, the Federal Government’s 1987 Grim Reaper advertising campaign—with a scarecrow image coming into people’s lounge-rooms for three weeks—couldn’t have been worse timing for those of us trying to live with the stigma that the virus had already brought into our lives.
In 1984, several babies had been transfused with HIV-infected blood in Queensland and even though the accused gay men had donated not knowing they were infected, the media had a field day and we positive people became the subject of a hate campaign by some.
I thank my HIV activist friends who together established PLHIV organisations around the country, including our peak organisation NAPWHA. Through these organisations, we were able to educate HIV+ people about how they could protect others from catching the virus, get better treatments and learn how to live well with it.
And thankfully, now with today’s life-saving treatments, we cannot pass it on to our sexual partners.
Some memories remain crystal clear: the name and face of the newsreader, the imposing AIDS acronym in uppercase. But the year? Was it ’83 or ‘84? That would make me nine or 10. Seeing that story and noticing it had something to do with me. The arrival of HIV would get very personal. And now, I can’t begin to imagine how my life would look without it.
My sero-conversion took place in those years or earlier, but I have no memory of it. Nor can I recall being tested or told that I had acquired HIV. I do remember how it felt to hear people, especially adults, joke about AIDS. The hollow feeling of laughing along with them, to reveal nothing, and how their language suggested a fate worse than dying. How would they react to knowing HIV was so close? As close as me?
“Forward seven or eight years, mid-final year high school, and time to commence treatment. AZT three times a day meant swallowing pills at school. Not easy without being seen but I managed to hide that act obsessively. And I decided: if I was going to die, I would make a statement in defiance of HIV. I would pass my High School Certificate.”
But would I have time? When would the beginning of the end arrive? But I didn’t fall ill. I just kept going. And the pills did their job.
Several treatment regimens later—well before the current era—lipodystrophy set in. What a drag. The medications were supposedly better but they gradually and permanently sucked the fullness from my cheeks and moved the fat from my limbs to my belly. I still grieve that loss.
But hey, youthful beauty is fleeting, anyway. I now try to wear my body’s battle wounds with pride. They reflect where I’ve been and who I am. My partner jokes that I have a tiny bum. Lucky for both of us, she likes it.
For years, I worried about running out of treatment options. It’s not that long since I gave myself permission to accept that I might actually grow old.
The arrival of the concept: “treatment as prevention” worked wonders for me. And more recently, U=U in its glittering brilliance.
I couldn’t vocalise the words “AIDS” or “HIV” until 1994; when at 20, I squeezed them out as I forced myself to tell my siblings. That was perhaps the best single thing I could have done for myself at the time.
Something shifted, allowing the fear, stigma, and shame inside me, to start to dissolve, clearing the way for healing. Slowly, over a long period of time, I more freely and frequently entrusted others with my secret, and each time I shared, my fear shrunk a little.
It amazes me and fills me with joy and hope, that something I hid for so long and regarded with such shame, can now be connected to feelings of pride and personal worth. And the meaning, satisfaction, and belonging I derive from working alongside others living with HIV.
Positive Women Victoria was founded in 1988 by me and Deborah Gillies because of the isolation we both felt following our HIV diagnoses. The late, great, and very funny Sonja Ristov, and many other women living with HIV, were also an inspiration during this period.
From 1992, when positive women finally got funding, we had a board that was made up of all positive women. I served as chairperson for ten years when there was no limit of tenure.
It was a time of urgency and grief as women were getting sick and dying as there were no combination treatments then.
“Most of the women on the board were not out as HIV positive because of the stigma and discrimination they faced. Consequently, there was only one or two of us who would talk to the media. Sometimes under a different name. Sometimes in shadow for confidentiality reasons.”
We had annual retreats and at each one, we didn’t know who would be alive the following year. It was scary times. Funerals were commonplace. Who would be next?
The night before receiving my diagnosis was the last time I read my own Tarot cards. No matter how I dealt them, the cards kept giving me the same message: “Worse fears realised.”
I suppose I knew anyway. I felt sick. My throat was so sore it was agony to swallow. I had a strange rash on my torso.
It was 1991 and my partner at the time was positive. We always played safe. Except for one time two weeks prior. We didn’t know about viral loads back then. Oral sex was still bandied about as “pretty safe”. But in our case, that time, it clearly wasn’t.
“I had been working in the sector for a couple of years. And the shame I felt for succumbing to a virus I thought I understood was overwhelming.”
My doctor reassured me that more treatments were on the way; that seroconverting now was better than if I had five years ago. I asked for valium and lived on them. I saw a psychiatrist and spent our entire first session in tears.
I went on AZT immediately as part of a seroconversion trial. But the side effects of high dose AZT on top of everything else was too much.
And at some point I stopped taking them.
Huge handfuls of pills that made me so sick I spent most of the time in bed. Or on the toilet.
I practiced yoga and took Chinese herbs, partied, and played with drag. I decorated boxes with sequins and got a dog.
Those years are a blur. I find it hard to put things in sequence. But at some point, I started to feel better. Perhaps this was around the time when combination treatments started to work.
Or perhaps it was when I returned to work in the sector in peer support.
I certainly remember telling someone who was distressed about his own seroconversion that things do get better.
And yes, I know that’s not recommended.
But it was true for me.
And I believe it helped him, too.
I was diagnosed with HIV in London on 14 September 1995. No one ever forgets their date.
I wasn’t sick or even feeling a little unwell at the time. I had the test as a requirement for a three-month Russian visa. I’d enrolled to study Russian at the Moscow University over the winter of 1995/1996.
It was all part of my world motorcycle journey with Russia and the Silk Road the second leg, following my ride through Africa.
HIV was a death sentence back then, so my HIV diagnosis came as a complete shock. It was a year before the discovery of protease inhibitors. Yes, I’d had one moment of unprotected sex with a gorgeous man in Mali, North Africa. And I didn’t have condoms and neither did he.
The elderly doctor at a GP clinic in outer London near where I lived, told me I had five years to live but added ‘scientists are finding new treatments all the time’. He advised I return to Australia to my parents and that our healthcare system had more money than the NHS. He also gave me a brochure for a support group for women with HIV.
I didn’t believe the result and had a second test at a HIV clinic at London’s Chelsea Westminster Hospital. I remember waiting at the HIV clinic, which was packed with emaciated young men, their eyes filled with fear and sadness for their young lives lost. I was the only woman.
When I was given the positive result again, the doctor advised, because I was still healthy, not to take AZT. I’d read AZT would kill me faster than HIV. Instead, I went on a journey searching for hope in alternative therapies. I spent a small fortune on ozone therapy, energised water, crystal therapy, and bucket loads of vitamins, minerals, and herbs.
I also went on a journey down the rabbit hole of recreational drugs in search of answers, too. This was London.
It was not until I went to a Positive Women’s support group, where I met several women who had been positive for five years or more and looked fabulous, that I knew I had a chance. I packed my motorcycle and headed across Europe, Central Asia, and China. But before leaving, I went back to the HIV clinic to find out what the HIV was doing and when I would get sick.
“It was November 1996 and while protease inhibitors were saving many people with AIDS, no one told me.”
I was left without hope and with no access to information that we have today via the internet. I had no way of finding out for myself. Instead, the HIV clinic doctor told me about a new test called a viral load test, but I had to pay for it. The test cost £80. He also gave me a good supply of Bactrim, an antibiotic used as a prophylactic for PCP (pneumocystis pneumonia) saying if I got PCP it could be fatal. And despite having a bright red face for many months (which I covered with tinted sunblock), the Bactrim saved me during that journey along the Silk Road.
However, by the time I reached Vietnam, I had AIDS. I knew I had to get to a hospital, so after storing my motorcycle in Hanoi, I took the next flight to Cairns in Queensland. I was so very lucky to have Dr David Bradford as my treating doctor at the Cairns Base Hospital. It was late 1997 and protease inhibitors as combination therapy had by now saved thousands of lives. Within ten days, these meds had saved mine too.
I was out of hospital on Christmas Eve, just in time for a surprise visit to my parents who were none the wiser. It was another two years before they found out. I was in the second year of my journalism degree at the time. They were devastated until they realised I was not going to die.
Today, I am a mother of three teenage boys, and the author of two published books (Ubuntu and Timeless On The Silk Road). I am also the new Communications and Engagement Coordinator with Positive Women Victoria.
I am loved. I am happy and healthy. And when my boys are old enough and I can leave home, I look forward to embarking on the third leg of my world motorcycle journey from South to North America and beyond.
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