“If I take myself back to when I first acquired HIV 43 years ago, never in my wildest dreams could I have imagined that I would not only being living my best life – but also working in a field that I am so passionate about. As the Coordinator of one of the State’s busiest Needle and Syringe Programs (NSPs), I am honoured to hold such a privileged position at ACON.
Remembering back in the early days of HIV, we had absolutely nothing. No technology, no information, other than conspiracy theories and fearmongering, there were no treatments available. But the saddest part… there was no hope… and it’s hard to live without hope!
I remember the day I was diagnosed, and after being given the news, I asked my specialist “So, how long?” His reply was quite shocking when I think back. “3 to 6 months… we just don’t know.”
And that was it.
Sadly, over the next 10 years, I lost all my friends. I was so busy working, doing grocery shopping, cooking meals, visiting friends in Ward 17… and attending funerals. That was my life.
When the last of my friends passed in the early 90’s, I became lost. I had no purpose. All the bright lights of Oxford Street became grey, and the city was shrouded in deep, deep sorrow. So much so, that I had to leave the city, as it was too painful.
I moved out west to start a new life, became a Nurse and ended up working in the Maximum-Security ward at Rydalmere Hospital for several years, then worked as a Social Educator, working for an organisation who assisted people transition from Institution into community living.
In the mid 1990’s, we got the first of what was to become many antiretrovirals and protease inhibitors. I remember taking up to 30 tablets a day, which was a nightmare. You had to set your alarm several times per day, and some medications had to be taken with food… and some not. Then we got combination therapies, where three to five medications were put into one tablet. That was a real game changer, as then I was down to taking about four or five tablets per day. Now, I take one tablet per day. My, how far we have come!
In 2010, I was living with my two new gay best friends and was living on a pension, due to becoming quite unwell with the many medications I had taken over the years. I realised that I had to find some purpose in my life, as being on a pension, felt like treading water… not really achieving anything.
I happened to be reading an article in the Star Observer about a social group for long term survivors, called ‘7 to 9’, run by Positive Life.
I have to admit that it took a couple of months to summon up the courage to attend a meeting, as the thought of going into the city and meeting a group of strangers, was quite daunting.
When I attended my first meeting, I was greeted with such warmth and a sense of belonging, that evening changed my life. That is also the night I met my partner, Andrew (who was co-facilitating the meeting).
We walked to the station together and he offered me a volunteer position at ACON’s NSP in Sydney. Which brings me to the here and now, where I have now been a part of the ACON family for over 14 incredible years.
So, you see, there is life after diagnosis. I remember a conversation I had with our CEO, Michael Woodhouse, and we were talking about ACON’s evolution over the years, to become the incredible organisation that it is now… and Michael asked me if I wanted to say something, as I was in deep thought. I replied… “I was just thinking, how different my life might have been, if ACON as we know it now, was there when I was first diagnosed.” I will never know… but here l am… living my best life.
There is a quote that my mum would recite to me from a very young age and I have carried it with me my entire life. In a lot of ways, it has helped shape the person l’ve become. It was written in the early 1800’s and the Author was Stephen Grellet.
“I expect to walk through this world but once! Any good therefore that I can do, or any kindness that I can show, to any fellow creature, let me do it now. Let me not defer or neglect it… for I shall not pass this way again.”
