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-Story 1
I'm doing this story to remind me of where I've come from and to write some of my history.
When I was diagnosed in '89 I was living in the country. I wasn't a highly active gay man and I had to find my own way of surviving with HIV. This was hard because everyone around me told me I was going to die including my partner who I was living with at the time. That was really scary. I remember one of my doctors pulled out a book and showed me the graphs of what happens after five years and so on. There was not a lot of information and they were at the early stages of AZT. People had to rally together to survive and that's how PLWHA (NSW) came about. HIV was a life changing experience: my life and living were my concern.
I decided to throw myself into my spiritual health and seek out Buddhism, meditation and yoga. Because I lived in the country I had a healthier diet and lifestyle. I also decided to seek alternative treatments, but mostly, I managed my health through diet, meditation and exercise. I didn't understand what positive thinking was then or what it was to have negative thoughts. It dawned on me that I am in control of my life. The only trust I had at the time was in myself and my own strength. It was really through the power of my mind, listening to my thoughts, and not taking on board other people's attitudes towards me that helped me to get through.
With everyone telling me I was going to die I found it really difficult to be present in the moment and to think about a future. There was a lot of media information that focused on everyone dying from AIDS. If I let myself buy into the image of the dying AIDS victim and accepted that as my future it would have sent me into a downhill spiral. I never succumbed to that way of thinking. There was another road opposed to what the media and society told me. To survive I had to make choices. Managing my HIV meant I had to end a longterm relationship that was dysfunctional anyway. It also helped me to realise to survive I had to have a very strong spiritual belief, so I went to India and chased gurus.
Chasing gurus
My first trip to India was in '92. I didn't think I could go because I thought I'd be exposed to diseases that would damage my immune system. It actually gave me a lot of strength when I got to India to see the poverty and the hardship of other people's lives. I came alive and gained an inner strength. There were other people in the world who were doing it a lot harder than me. That challenged me to be more determined about my life. Then, I moved to England and stayed with some friends for a year and traveled back to India the following year. A positive diagnosis motivated me to do the things I wanted to do with my life at the time. things that were necessary for me to do in the moment rather than in the future. I always wanted to have that spiritual connection with India. I will always remember arriving at Bombay at 3 o'clock in the morning and getting out my Lonely Planet and looking up a place to stay: being excited about the fact I was in a strange country. I traveled around India for three months and then came back to Australia, re-settled and started to sort out my life.
Balancing act
I was very fortunate to meet someone that was doing alternative treatments which boost the immune system. I got really good results and I continued with that for six years: from about '96 to 2002. Even he would say go on treatments which I had chosen not to do. The only treatment available at the time of my diagnosis was AZT and everyone I knew who went on it died. Because treatments have changed over the past 10 years I moved on and decided to try them. My body was also telling me it was time to have a rest and that it was okay to do the treatments. I was also dealing with the fact that I was ageing as well. I am now in my 40s and my body is changing. It was the hardest decision to make because I felt I was giving up on everything that I believe in. At the same time I realised that I can incorporate both treatments and complimentary therapies into my life. I still meditate, do my yoga take my herbal medicines and take my antiretrovirals as well. So there is a balance between the both of them.
The difficult thing I've struggled with is the loss of finances and the loss of social skills. I took so much time and energy to look after my health, rather than seek out studies or a career. That period has vanished into thin air and what has it been replaced with? I don't have the resources most people have who kept working: that's a hard struggle. It's really hard to turn that around and go back to work and do something productive. We all want to do something productive but it's finding what's right for you.
So now it's about being willing to create new possibilities in life. I have ideas and I change them. Sometimes I want to work helping people, sometimes I want to work for myself but it always comes back to the issue of quality of lifestyle. Is it going to be too stressful for me to be working full-time? Is it going to be too stressful for me to put all that energy into creating a new lifestyle again?
Relationships
I left my long-term relationship because I couldn't deal with his issues as well as my own. There was a lot of denial, more so on his behalf, about my status. Being HIV positive gave me the opportunity to move on from that relationship. I had another relationship with a man about five years ago and he was negative. I found that difficult. I was working part-time and he was working full-time. I was doing my treatments and he never fully understood what I was going through. He never understood why I only wanted to work part-time and just enjoy the rest of my time.
Relationships today have a different meaning and sense of values. Trust and friendship play a role. If you're not working, studying, actively doing something, it doesn't create much interest for people to get involved with you. If you're feeling good about yourself you attract better company. I tend to hide away from relationships because I'm not working. Because I'm not working I haven't developed my social skills. I'm not engaging in conversation about my day.
I steer clear of positive/negative relationships these days. HIV negative guys tend to be complacent about positive guys. Some guys have no awareness and think HIV is manageable: it's not talked about. There's a sense that you go to the doctors, get some pills and get on with your life. What HIV means to negative guys has changed. They're not actually hearing people's stories about what it's really like to live with HIV.
Being positive for so long I feel I deserve to have time to rest. Like with negotiating safe sex: I get tired of having to tell guys to put a condom on and I get tired of disclosure and rejection because they can't deal with HIV. I'm always the proactive one: I'm the one telling them to put the condom on and I'm the one telling them to be cautious. I find most negative guys don't take into consideration that someone else could be HIV positive. It's quite interesting to realise they live in a time zone where HIV doesn't exist.
I was in a sexual situation recently and the guy said he couldn't believe I was positive. I had to get up and leave the room because I didn't want to deal with his anxiety and his annoyance because I was positive. When I told him I was positive he laughed at me and said: "You're joking aren't you?" There's a lot of unsafe sex that happens. Younger guys don't think they're going to be exposed to HIV. They assume if a guy is young he's not going to be positive.
New opportunities and new possibilities
When I was diagnosed there was little information and treatments were experimental, so having to find a way to "live" has given me strength.
PS - Today.It's a beautiful day and for every reason I am here to enjoy life, just as everyone else does. Reflecting on the losses and past memories, I am truly grateful to have gone down this road. To be able to notice my personal journey as a great opportunity. I am looking forward to growing wiser and seeking out new experiences. I look forward to opportunities and new possibilities within my community. It is wonderful to be able to share life with those going on this journey with me.
What we are today comes from our thoughts of yesterday,
And our present thoughts build our life Of tomorrow:
Our life is the creation of our mind.
The Buddha.
Photos: Jamie Dunbar
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