Staying Negative

In 1972 I moved to Melbourne and got a retail management cadetship and a very privileged position. I was trained in financial management, retail buying and training other staff. The area I worked in was right next to the window dressing department but the window dressers were quite effeminate with their behaviours and voices. There was no one that I could relate to and say, “I’m like them.” I was outwardly masculine, dressed in a suit, covering up my own same-sex attraction so I was internalising my own homophobia. (Internalised Homophobia)

Some male staff asked me to come along to the Woolshed bar which I didn’t realise was a gay bar. When I walked in, I found an amazing environment of other guys that were more like me. It was all a bit underground though. There were lots of private parties and secret gatherings happening back then. I did have some sexual experiences with guys but all I could think was it was a criminal activity and it really inhibited me.

When I was 21, I met another sales rep. on my travels around Victoria who made it a point of meeting up and having dinner. He’d start asking me all these leading questions about what I liked and about sex. I was completely ignorant and naïve to the fact that I was being cruised. One weekend I stayed at his place and he offered me a massage and I thought innocently, ‘oh, I love massages.’ He then really started to arouse me and I let go of my inhibitions and just went for it.

We ended up having sex but the minute we stopped he said, “you can’t tell anybody about this, we’ll lose our jobs. This has to be a secret between you and I.”

Here I was making the decision to just let go for once instead of resisting, only to become fearful again.

It all got a bit strange as he became a stalker with numerous phone calls, late night visits and really weird stories just to try to see me and have more sex with me. It got so bad that I told him if he didn’t stop harassing me, I’d go to the police. It did stop after that but it was very manipulative behaviour and confronting for someone who was so naive.

After that, I was having a few sexual experiences with guys here and there. It was amazing and liberating. I felt a wonderful sense of freedom and sexual expression. At the same time there was an older woman who was the office manager where I worked.

We were all out for drinks one night and she said in front of the other staff, “I’m going to get you tonight and I’m going to fuck the living daylights out of you.”

I was mortified but also titillated. She ended up demanding sex regularly which I suppose was part of my exploration of sexuality. It ended up being a manipulative situation again. She had a strong personality and I felt like I was being led astray with her and the sex just didn’t really do it for me.

During this time, I met guy who worked nearby and one thing led to another. I ended up in bed with him and the sex was amazingly affirmative. I thought, ‘this feels right, this is what I want.’ Within two weeks, I told the older woman that I had met a guy I was interested in and I wanted to cease the sexual relationship with her. I said, “I am starting to identify with who I am and I need to grow up and face that. From now on, I am a gay man.” (Coming out)

My relationship with this guy was for three and a half years - my first boyfriend. He was masculine and a lot more sexually experienced than I was. I think my discriminatory thinking about effeminate behaviour drew me to his masculinity. In that time, I had met a whole lot of new straight and gay friends some of whom were male strippers and waiters. There was a whole new level of liberation sexually and I got right into partying, drinking and casual sex. This resulted in my boyfriend leaving me and for four years I had heaps of fantastic sex and intense short term relationships.

Waiter at a male-stripper venue

In the 70’s and 80’s there was no understanding about using condoms. My first partner took me to a really good sexual health practitioner who was a gay man himself. I got a lot of sex-ed. about gay sex through my regular check-ups with him. The first notion I had about HIV was in ’82 and ’83 where a VAC volunteer came up to me whilst I was at a gay bar and said, “look guys, we’re talking about something we think is really serious. Whilst we don’t know that much, we have a strong feeling it is affecting gay men everywhere around the world. We suggest you wear condoms for all sex from now on.”(HIV AIDS and safe sex) It was during a huge gay liberation period when homosexuality was decriminalised, when we were in command of our bodies and we knew how great sex is. Most of us didn’t want to think about HIV and I continued having heaps of unprotected casual sex. I thought that mostly being a top would protect me. I didn’t take HIV seriously and I thought that it couldn’t happen to me.

During ’84 and ’85, things changed a lot and there was a sense of disconnect.

Some nights when we were out people would point and say, “don’t go near him, he’s got AIDS.” It was terribly discriminatory.

In that time, people were literally disappearing because they were sick or had died. There was the dawning realisation that the gay community was in deep trouble and there was a lot of fear and stigma.

My 27th birthday

In 1984 I met a guy at a beach in Gippsland who ended up being my partner for the next ten years. We were monogamous for most of our relationship and he talked about using condoms but we didn’t. He moved to Melbourne and in 1987 we bought a property together in St Kilda to renovate and sell. During this period, I had developed a rash so I went to see my gay doctor, who immediately said it was shingles. And “we are seeing more of it associated with being HIV positive, so I want to do an HIV test on you.” I responded with, “What’s the point? There is no treatment anyway. You can do it but I don’t want to know the result.”

I didn’t even understand that I could pass HIV on, I was in total denial.(HIV the basics)Even though I didn’t want to know the results, he still insisted that I do three monthly tests. He was supportive in not telling me, but also ensuring I was monitored.

In 1988, we purchased another property in Elwood. It was a real mess but lots of potential. My partner and I had a house to finish, life was fantastic and HIV was just not a part of it all so I didn’t tell anybody about my tests – a typical “head in the sand” approach even though deep down I think I knew.

During 13-year relationship

The next time I saw my doctor he said, “the blood tests are not good. I’m not sure what it means but I just need to monitor you more closely.” I ended up going home and telling my partner and he said, “If I’ve got HIV I don’t want to know about it and I’m not going to go and get a test.”

In September of ’88, I felt really unwell and thought I had a bad respiratory infection. My doctor admitted me to Fairfield Hospital immediately. He said “I think you’ve got pneumonia and it’s a particular type associated with HIV.” I didn’t want to be admitted to hospital but he said if I didn’t, I would die. (Living with HIV)

It suddenly hit me, I thought, ‘I am HIV positive, I have pneumonia, an AIDS-defining illness. I am probably going to die.’

When I told my partner I needed go to hospital, that I had been diagnosed with AIDS, he was pretty non-supportive. I suddenly realised what sort of relationship I’m in, that my partner didn’t want to acknowledge how serious this. I was treated in hospital for several days and I basically fooled the doctors saying that I was feeling great and I was discharging myself. I didn’t feel fine but I needed to be out of that environment. The wards were full of dying men and it was extremely confronting, especially when I was 33 years old and felt I was at the peak of my fitness even though I was so sick and my CD4 T cells were below 50.

Mum found out I was in hospital and insisted she come down to Melbourne and help me move into the new house. She had been a nurse and was very intuitive, so when she saw the way I looked she was mortified. I hadn’t even told my mum that I was gay, let alone that I was HIV-positive and with an AIDS-defining illness. When mum arrived, she immediately started cleaning the new house, made the bed, insisted I get into bed then asked, “Right, what’s going on?” I told her everything and she said, “Max, I’ve always thought that you were gay but what you do in the bedroom is no-one’s business except yours.”(Coming out late)

Then she asked me, “Why haven’t you told us you were gay?” I said, “I’m really worried about dad rejecting me.” A few days later she told dad and he called me to say, “Mum has just told me what has happened and I all I want to say to you is how I love you and that if I could take this virus away and give you as normal life, I would.” I just bawled and it still gives me goose bumps thinking about it. “Dad, thank you, I so appreciate your support and your understanding. I always felt that you might reject me.” He said, “never, you’re my son.” That was the foundation of the support I got from my family, it was pretty intense.

As I got off the phone I broke down and my partner’s response was, “if you’re going to react that way when you tell somebody you’re HIV positive, don’t do it again, I don’t want to hear you do it again and don’t tell anybody else.”

I said, “you can’t tell me to do that!” He got really, really angry and I suddenly saw the other side of his personality that was very confronting. I started to doubt myself and whether I made the right choice with him. Would he support me through this? I insisted he got an HIV test as well because if he was going through it too then I would be there for him. His results also came back positive and his attitude was, “if I get AIDS, I’m dying then.”

I went back to full time work. I decided to get back into a health regime of fitness training, swimming and bike riding with a focus on really good food. I was put onto AZT which was the first drug around and it had the most awful side effects. All the foods I used to love I suddenly didn’t like.

My partner was quite controlling when it came to money. The renovation of the house was according to his budget and if I went out and bought something, I was in trouble and he’d lose his temper. I thought, ‘this is just not sitting well with me.’ But life just went on though.(Relationships) I remember my 40th birthday, we had 40 friends coming over for a party at home and a good friend of mine was doing the catering. My partner hadn’t bought me a birthday card, hadn’t wished me happy birthday and we were in the intense preparation stage for the party. He had made some nasty comment which I fired back too. He picked up a plate of hors d’oeuvres and threw it at me, all over everything and screamed abuse at me. I finally realised he wanted the attention upon him and any attention towards me seemed to fuel his anger.

That was the biggest wake-up call, being treated this abominable way. I picked myself up, cleaned everything up and he said, “now I’m going to go and buy your fucking birthday card.” As the guests arrived he turned on the charm as if nothing had happened! I felt like I didn’t have any self-worth, was still shaken and that he was dominating me. I took weeks to get over that. Looking back, I understood physical abuse but didn’t realise he was being psychologically and financially abusive towards me.

Around the same time I also ended up losing my full-time job because my boss disclosed my HIV status to staff without permission. They were very fearful. I was furious at his betrayal of my confidentiality even though he and his wife were the first people I told in 1989. So I started up two little businesses for myself determined to never allow an employer to do that to me again.

In 1994 my partner came down with his first AIDS-defining illness and was really sick. He was admitted to hospital. He received a death and disability payout from work for having AIDS. He then had a succession of AIDS-defining illnesses – at one point he had three concurrently and didn’t leave hospital for six weeks. I watched him get thinner by the day and noticed he was being affected psychologically and cognitively.

He ended up getting CMV retinitis and went blind in three months. Not only did he have HIV and AIDS, he was blind so I became carer, cook and cleaner plus trying to work at the same time. It was a very challenging time for us both, but with the support of VAC volunteers and the RDNS nurses, I assembled a care team for him. His mother who he had a tempestuous relationship with offered to help care for him once a week which allowed me to continue part time work.

Watching him go through this and caring for him, I couldn’t help but think, ‘is this going to happen to me?!’ The last six months before he died were really intense and he died at home - a graceful death with the support of our doctor. Back then, euthanasia wasn’t talked about but he was given enough morphine to kill a horse.

As he was dying and struggling to breathe, I lay beside him, hugging him gently and saying, “it’s alright, you have my permission, you can die. You don’t have to hold on any longer.”

When he died there was actually a sense of relief because there was an end to the suffering and he did suffer, as most did with AIDS-defining illnesses back then. You are confronting your own mortality, you are confronting AIDS, you are confronting stigma and you are confronting the fact that you’ve lost everything that you wanted to do in your life. The whole community seemed to be grieving for so many including me.

My approach to my own health after his death revolved around holistic things like natural therapies, kinesiology, naturopathy, massage and meditation. I was slowly trying to rebuild my physical and psychological strength, so I returned to bike-riding, swimming, walking, gym, meditative practice along the beach with the dogs and all of these things seemed to wash the grief out of me. Using that as a healing process and having two jobs that were getting bigger and bigger gave me a new sense of future especially when in ’96 the new HIV drugs came along and people stopped dying. We saw our CD4 T-cells starting to rise, our viral load starting to come down and suddenly there was a glimmer of hope.

HIV is just a part of me; it’s not all of me and never will be.

That same year I was diagnosed with anal skin cancer and had radiotherapy. After a six month recovery, I had two long trips to Europe to see all the places I had dreamt of.

Coming back to Melbourne in 1998 I started dating again with no success. With the new medication, the exercise regime and feeling a lot fitter and healthier I started doing beats again. I had lots of casual sex but something was still missing in my life. Deciding I didn’t want a partner and being more liberated, I looked for a sex buddy – not just for sex but friendship and fun. As luck would have it, one of the first guys I met I fell in love with and we were together for 13 years. He was six years older and was incredibly loving. I learnt so much about relationships and life from him. While I insisted on a monogamous relationship at first, a while later we opened up the relationship. It was a mostly a good experience but when others guys showed too much attention to me he was left out and it wasn’t good for either of us. We negotiated some rules so that he could have casual sex but for some reason I only did so occasionally. In that time, I experimented with drugs and found a whole new world. Realising I had an addictive personality it was something I tried to control and avoid but was still drawn to.

Then in 2004 the cancer came back and I had to have quite significant surgery which resulted in six weeks in hospital and quite a few months of recovery. My partner was incredibly supportive. During that time I was working for Living Positive Victoria and they were fantastic about a gradual return to work. It gave me the motivation to get out of bed.

When I first started working at Living Positive Victoria I found it really challenging because I actually had to think about disclosing my status more openly after 11 years living with HIV. It was part of my job to re-establish the Positive Speakers Bureau. I thought I’d be a fraud not disclosing my status if I was going to be training HIV Positive speakers. There was definitely some internalised HIV stigma within me. But over time I have found lifting the secrecy and being open about my status became very self-affirming.

In 2005 I was diagnosed with depression and put on anti-depressants but there was no change. I tried other medications but nothing worked very well. All I wanted to do is cry and I just felt so hopeless. (Depression)

Eventually my GP referred me to a psychiatrist. I had resisted counselling and support for so long but I had started some informal counselling support from the counselling team at the Victorian AIDS Council. Seeing a psychiatrist helped me address some work-based issues as well as many personal issues. I thought I’d get it all over and done within six months and be over the depression. Three and a half years later I finished my sessions with the psychiatrist. It was incredibly intense and we addressed so many issues, how I compartmentalised everything away into boxes. Each of the boxes had to come out and be unpacked - from bullying at school, to coming out, the death of my partner, to challenging HIV, to losing my job and a whole range of stuff about family and work and my relationships. Why I responded the way I did to these situations in life’s journey? I was trying to rebuild my emotional intelligence and overcome depression and it finally worked.

Me exploring Kakadu

I would like to use my own story to emphasise that counselling and support is critical in the decisions we make about our lives and it is up to us not to blame others. It opens up a world of possibilities and allows you to address the issues and not let them simmer. The longer you let them eat away at you the bigger the impact, which is what happened to me. It’s the best thing I ever did because it enabled me to not just see things in black and white, but see the shades of grey in-between which made me calmer, have more empathy and I stopped giving myself a hard time as an over achiever.

I still go through challenges whereby people ask me, “What’s it like having AIDS?” “Well, I don’t have AIDS, I have HIV”. (Living with HIV)Then the other question, “so I can’t have sex with you?” I’d explain, “Well yes you can, because we have condoms and lube, treatment as prevention and now we have PrEP, you can take responsibility for yourself; it’s not entirely my responsibility. Besides it would be your loss not mine if you decide not to have sex with me or another positive guy.” That negative-positive divide got bigger and bigger a while back. The stigma and discrimination against positive guys was really bad, we were responsible for everything and the anger that would come about if we hadn’t disclosed was palpable. Knowing how effective HIV treatments are and being undetectable for 10 years gave me back a lot of confidence about sex. I believe everyone is responsible for their own sexual health and wellbeing. It’s so important to educate people so they can make informed choices, minimising risk and looking after themselves.

In 2012, after 13 years, I ended my relationship. I realised I didn’t love my partner anymore and wasn’t having sex with him. A hugely challenging time with lots of emotion as we separated but I had a light bulb moment deciding I wanted to be single, happy and find the true me again. The sense of freedom, fun and enjoying life and sex started all over again. Over a few years I started doing PnP and it was euphoric, wildly intense and fascinating where I further explored my fetishes. (Party n' Play) I was fortunate having some really experienced PnP sex buddies and we looked after each other. (Party drugs) If things got out of control we were there for each other. Some buddies became severely addicted and it was a wake call for me as I tried to support them realising it could happen to me – just like HIV did. It was like a red flag warning to be careful about usage quantity and combining other drugs, to not allow it to impact too much on me and managing the recovery time. I was one of the lucky ones in a way.

Happy in my new relationship

Even though I had decided to be single, two years ago I had the most wonderful experience of meeting a guy who is caring, smart and sexy but with a calmness and wisdom about life. He sorted out all his crap in his early twenties whereas I didn’t. The relationship is so much fun, full of love, respect and compatibility. I feel completely satisfied - intellectually, emotionally, sexually and physiologically.

It is the most extraordinary and cathartic thing to have happened to me regardless of all my past relationships. I’m pretty privileged in having these experiences and learning about life, love and sex all the time but more importantly, I now have a greater sense of wisdom, an absolute confidence about myself. Living with HIV for so long I’m really out about it, even at my local cafe and some of my neighbours. Life is damn good at 62.