There I was. On top of the world, well almost, 1999, on the top of a ladder picking bananas when I got that call telling me on the phone that I had tested HIV positive. I wasn’t surprised about the result, but didn’t expect to be told on the phone. I had unwisely delayed testing, driven at last to the inevitable by hearing that my then-partner was HIV positive.
Down from that ladder and back to earth with a bump. It took a while to sink in. I was one of the more aware ones. I had been involved in HIV work for about 5 years already. Yet it still happened to me. And so began my slow journey of disclosing. It took me a year to begin sharing with close friends and another year to begin telling my family.
What started as a small ripple became a flow of giving and receiving support, of discovering a new circle of friends bound together by experiencing life with HIV. I decided that I was living with HIV, and was not dying from AIDS. This was an era when we had to create our own supportive environment. We were not going to be given that by a government that denied the existence of HIV and access to antiretroviral (ARV) treatment for the thousands of people needing ARVs to survive.
I integrated living with HIV as one part of my life. I am passionate about people. I love the laughter and company of friends. I rely on the anchor of my family members who are also friends. I love music, reading, sport and travelling. I jog to keep fit – running frees my mind and gives me creative thoughts at times when my head feels asleep. I consciously look after my mental and physical health, and have been on ARVs for 7 of my 11 years with HIV. I have discovered too that it is possible to find love, and to give and receive love, as someone living openly with HIV.
Self-acceptance is the key to positive living with HIV. I embrace the words of Oscar Wilde: “learning to love yourself is the beginning of a lifelong romance”. I promote the idea of positive language – thinking, talking and writing about HIV using sensitive non-stigmatising language. I will never allow myself to be a “sufferer” or “victim”. I am a person first and I will live my life to the fullest accompanied by HIV as a companion.
I have been inspired by many other people living with HIV, who had the courage long before me to test and to disclose living with HIV. In 2004, the idea of making the paths of others easier motivated the setting up of a collective of people living with HIV that I am a part of – Openly Positive. Our aim is to help create a more supportive environment for people living with HIV to live positively and disclose when they feel ready.
In 2007, we formalised ourselves into a non-profit public benefit organisation called The Openly Positive Trust. Besides doing awareness-raising workshops and talks, our main project is a series of personal stories of living positively with HIV. We try to pioneer a visual style of story-telling, with features such as personal handwriting, photographs, posters, press clippings, poetry, and interactive lessons and questions for personal reflection and discussion.
My book Clouds Move shares my life journey until June 2007. I compare coming out as a gay man in my 20s to disclosing my HIV status in my 40s. I share the stories of friends I have lost through lack of access to treatment and the effects of stigma and denial. They were not able to tell their stories. My aim was to inspire more open talk, and to encourage and mentor others to tell their stories.
My Openly Positive colleague, Elaine Maane, published her story Umzala in 2009 – a heart-rending woman’s story of overcoming loss and tragedy, and finding a recipe for living with HIV as a cousin (umzala), who will always be part of the family. We are currently working on the third book in our Openly Positive series – a collection of diverse short stories from South Africa and the African continent about living with and being significantly affected by HIV, together with other issues such as violence against women, homophobia and xenophobia. Please see www.openlypositive.com to read more about our books and for an update on our short story collection, due to bepublished in March 2011.
I am also passionate about plain language – writing and speaking in language that everyone can understand. This is the main focus of my freelance writing, editing and training work. For example, I turn legal, health, environmental and other documents into a user-friendly structure and style that enables people to understand and claim their rights. To enjoy our place in the sun, we need to build a human rights culture to protect all our rights as human beings living with HIV and facing other challenges in our lives.
I live at the sea in Kommetjie near Cape Town and have always felt a deep connection to the mysteries of the ocean. In 2009, I celebrated turning 50 and my 10th year of living with HIV by becoming a Positive Hero to lend my voice to a diverse range of people saying: “we are here, we are everywhere – let’s break the silence and stigma around living with HIV!