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Susan's Story

I've been a member of Positive Women (Vic), my local support group for women living with HIV, since shortly after my diagnosis in 1991. Before that time I had been out in the world, actively involved in trying to create change towards a more equitable society. My diagnosis made me shrivel up in many ways. Like most people, my self-esteem was shattered and it has been a long, slow and often painful journey to get to where I am today. For almost a decade I lived a double life. I became increasingly active in the global response to AIDS yet was unable to come out as a positive woman in my local area.
Since early after my diagnosis I started talking to kids in school, health workers, etc, about living with HIV, as I believe the personal perspective is a powerful education tool. From 1996-99, I held the elected NAPWA position of Australian representative on APN+, the Asia Pacific Network of People living with HIV. I initiated the first regional documentation of AIDS-related discrimination, and I wrote the manual and training module, "Lifting The Burden of Secrecy", for HIV-positive people who want to speak out in public. The manual has been based on research I conducted towards my Ph.D. at the Key Centre for Women's Health in Society at The University of Melbourne, which examines the role of people living with HIV in AIDS education.

At the same time as evolving into an AIDS activist, I lived with the fear that my son would suffer shame and ridicule from his peers if my status was publicly known. He had known I was a "positive woman" since he was 3 years old and came on his first Candlelight Memorial March. For some time he had equated "being positive" with my (not always) optimistic disposition. I think it was the best way to ease him in to it. With time he asked more questions. (How grateful I am that a test indicating the presence of HIV is called a "positive" diagnosis.) He also uncannily understood the stigma associated with AIDS and when he was 6 years old asked me not to go public about my status. We made a compromise. I could be open outside Melbourne, but not in my home city.

Healthwise I was good for several years. Then in 1997 I really burnt out whilst I was overseas, doing interviews for my thesis. I returned to Melbourne with a heart problem, plummeting T-cells and spiralling viral load. But I was a stalwart about not using toxic drugs. I continued to believe I might be able to regain my health with complementary therapies, which had kept me so well for so long. I went right to the brink and looked over the edge. If you are afraid of heights, start medication before I did!

For the last half of 1999 I moved to a rural area whilst I started the writing of my thesis. I hoped that the pure, clean air would also help my health. But, I eventually realised I was, in fact, at the end of the road. I'd had a viral load of over 750,000 copies per ml for over a year, and only had 50 T-cells left. My face was falling off, I was eternally tired and my major coronary artery was in spasm daily. The only part of me that continued to function effectively was my mind (thank the goddess). I arranged to start medication and had to wait for 6 weeks for the HIV clinic to come to town. That was a scary 6 weeks and it is only as I look back I realise that I lived in terror of being struck down with an opportunistic infection.

I am one of the lucky ones. I have responded optimally to medication, with no side effects. I know this does not happen to everybody and I know 95% of people in the world who have HIV will never get access to these drugs. I have been given a second life - I am in fact Susan Paxton the Second. And every day I thank whatever lucky stars are shining on me for this opportunity. My body is no longer fighting a raging battle every night and I have energy to do all sorts of things that "normal" people do, like cook. I look back on the last few years, at how I dragged myself around with so little energy, and I don't know how I managed as a fairly isolated single mother. But I did, thanks to my amazingly supportive son.

At the end of 1999 my son showed interested in my research findings. After hearing me say that all the 75 openly positive people I had interviewed around the world had gained enormous benefits from speaking out, he suddenly and surprisingly announced that he didn't mind how open I was any more. Then I was selected to carry the Olympic Torch in the lead up to the Sydney 2000 Olympics . So, I double-checked with my mother and my son and with their blessings took the plunge and finally "came out" in the media. It really is a huge relief. Scary, but such a relief. And for me the timing was right. My son was safe and secure in his last year at primary school and faced very supportive responses from people about my disclosure. He had lived through many years of fear about my health, and it was great that we could celebrate my new lease on life in such a positive way.

Since the Olympic Torch Relay, I completed my PhD and have continued the never-ending advocacy work to gain respect, dignity and access to treatments for all people living with HIV. I am co-recipient of the Australian Government’s inaugural Jonathan Mann Memorial Scholarship for research into health and human rights. I have also established "Positive Response", an HIV/AIDS consultancy utilising an international team of HIV-positive facilitators, trainers, researchers and consultants. I enjoy my "post-doc" life. I have no idea when the lease runs out but I am certain I will not squander it in burnout or workaholism, as Susan Paxton the First did. I rejoice in what I have now.

When I passed on the Olympic flame, I did so on behalf of all positive people, as a symbol that a positive diagnosis need not be the end of the road, that there should be no stigma associated with HIV and that I am only able to do so because of drugs which are available to so very few people on this planet.

Susan Paxton Member of Positive Women (Vic) Story updated 2002.


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