When my brother Ross was in the advanced stage of Acquired Immune Deficiency Syndrome (AIDS), caused by the Human Immunodeficiency Virus (HIV), I used to leave Melbourne every month and go to Sydney to be with him for a week, give and take. I always stayed with Alexandria. She was my brother’s informal counsellor, power of attorney and main support. I would bring her a bottle of whiskey as payment.

Alexandria herself had spent her life in and out of cancer remission and was a hypnotherapist.  She managed an art gallery, used to be a fashion model, and previously had owned a laser lighting business for big name rock stars touring in Australia including Howard Jones and David Bowie. She told me that David Bowie had stayed the night at her house, talking till dawn about spirituality! And she had also been hypnotist to the Sydney Swans. What an amazing life she had had. She was in her 40’s at the time, and full of life and youth, though her own condition would waver. And during the AIDS epidemic in Australia, she supported people with AIDS to live quality lives. She was my first mentor.

Alexandria’s focus for those facing terminal illness was on ‘quality of life’ as opposed to quantity, and she had many ideas which were new to me about self love and self worth, which were the foundation of her support. She also gave practical support; negotiating services, housing, health and family- many who were unaccepting and unsupportive of their adult children during this crisis.  Including my parents, who unfortunately were unaccepting and did not know how to support my brother.

I adored my brother. He was 9 years older than me and I looked up to him so much. I had witnessed him be bullied as a child and not accepted by my parents for his sexuality, and I knew he was an incredibly brave person who had followed his own path regardless. I had so much deep admiration for him. But at the same time, he and I had a very fraught relationship because of the impact of family trauma. Sometimes I felt bullied by him as he lashed out at me. Some of the medications he was on had strong psychological side effects, adding to the impact of past trauma, on top of facing terminal illness with all the complications and alienation that came with AIDS at that time. He would say that ‘no one in the family ever cared for him’, and that I was ‘always treated better than him’. He was frequently angry with me for seemingly small ‘missteps’. And he was quite controlling, demanding to know my every move sometimes. To be frank, I was scared of him, my older brother, at that time. I was scared of making him unhappy.

I tried my best in the circumstance to support him. I am not sure if I did a good job. But I was very thankful to have Alexandria support me through this minefield, and give me a welcome safe home to stay and reprieve so that I could support my brother in the best way possible. She encouraged me to stand up for myself in the dynamic, but never interfered or judged my brother or my family. For people who didn’t have family support at that time, who had been ostracised by their families, she was a lifeline. And the way she supported me, as the only person in my family to support my brother and being so young, was phenomenal and will forever be an inspiration.

Alongside this, her lifestyle opened up many experiences for me. There was never a dull moment at Alexandria’s house. In between visits to hospital and supporting people, many gathered there. Mostly people who she was supporting, their friends and allies. There were parties, and sometimes we partied hard! The first subculture I was introduced to was the ‘gay scene’ through my brother, from the age of 14, so I was comfortable in this setting, though negotiating the world of HIV/AIDS with all it’s ups and downs, the sorrows, the love, the creativity, the physical and psychological impacts, and the politics, in my early twenties, was a very new world. I felt honoured and blessed to be there. Indeed it was such a formative and impactful time for me.

There were several people whom Alexandria supported, apart from my brother, that I became close to during that time. One of those was Milan. Milan’s preferred pronoun (before people really used this term) was He. He had been a costume designer, and wore elegant dresses and crowns which he designed and made himself. Milan was a father to two adult children from his ‘previous life’ in New Zealand. He was quiet, observant, self-possessed and in fairly advanced stages of AIDS.

One night I dreamt that Milan and I kissed. I was surprised, because I had never considered him in that light, in fact we had barely spoken. But it awakened in me an attraction to him, as kissing someone in your dreams often can. I told Alexandria about it. “Oh yes” she said. “Milan is a very sensual man.”

Alexandria must have told Milan about my dream, because the very next day, what do you know? He visited. Not to see Alexandria, but to see me. At that time I often wore a black wool men’s suit I had found in an op shop. And Milan, in his long white dress, sat next to me on the couch in the lounge room, and held my hand.

I was terribly shy, and didn’t know what to say. So I said nothing. We sat there in silence holding hands in the dim room.

It was actually very awkward.

But also super sweet.

A side note: I tried to generate the image of Milan and I sitting together using AI in Canva. But no matter how many times and in how many different ways I entered the instruction ‘A man in a dress sits next to a woman in a black suit’ it continued generating men in black suits and women in dresses. I even tried it on different AI image generators, but all of them still generated a man in a suit and a woman in a dress.

In the end I reported the images for being biased.

But anyway, I digress. Back to the story.

When Milan got tired, I walked him home to his commission flat in the high rise. It was a fairly long walk and we walked slowly. Milan was very frail. I accompanied him safely to his door, then once he was inside I boldly strode home in my men’s suit back through the dark streets of Redfern, to Alexandria’s house in Surrey Hills.

Another person I admired who was often at Alexandria’s was Ricky, otherwise known as Marlene. Ricky/Marlene’s personal pronoun depended on which name he/she was using in the moment and everyone seemed to mix it up when referring to him/her. Ricky/Marlene was the most sharp-tongued and quick-witted person I had ever met. He/she had a smart reply for everything, often leaving me in shock or in stitches because of her refreshingly brutal and shameless honesty. I was in awe of her, and pretty shy around him too.

One night after a party Ricky/Marlene and I sat up together drinking and smoking and he/she told me that when he/she was young, he/she was beautiful, so beautiful that everyone wanted him/her. And anyone who wanted him/her could have him/her. Many who went on to die of AIDS. Yet he/she for some reason never became HIV positive. ‘Only people who don’t love themselves get AIDS’ he/she claimed.

There are some people who have a natural immunity, but I would never say it’s because they love themselves more than anyone else. Maybe she believed it, maybe she didn’t. Ricky’s closest friends were HIV positive, which is why he was always at Alexandria’s. And Ricky/Marlene was pretty drunk. Either way, I am not judging anyone here.

It got very late and Ricky asked if he could crash out on the mattress next to me. I agreed, and was ready to sleep. But then while laying next to me, Marlene started to become very affectionate. I froze. I was laying on my back staring up at the ceiling, while she cuddled me and tenderly caressed my face. I could feel his intensely alert eyes boring into the side of my face as I stared ahead unresponsive, hoping he would turn over and go to sleep. Which eventually she did.

The next day, many people came over for breakfast, celebrating something or other with vodka and campaign. As we were sitting around laughing and talking, Marlene suddenly announced loudly to the whole room, pointing towards me:

I slept next to her last night. Cold as a fish!

AI prompt: A man lays in bed next to a fish.

Everyone laughed. My brother Ross, who had recently got out of hospital again, rolled his eyes and said to me, “You be careful, you hear” before lighting another cigarette.

Alexandria never seemed to take anything too seriously, and there was always so much laughter. I guess having gone through so much in her own life, she knew to be selective about what to focus on. She allowed people to have their own journey. Otherwise she wouldn’t have been able to support so many people in the way that she did. But she was serious and present, and would always speak up if needed. And always, with her focus on choosing quality over quantity, even when so much of our world, including the medical world, screams the opposite.

She supported my brother, and our family, right to the end of his life, encouraging him to make empowered medical decisions as things progressed. In the end he elected to not have a certain very painful medical procedure again, even though it meant he would not live much longer. We all supported him in his decision even when the doctors put pressure on him (and on me) to change his mind. He was ready. At the age of 31 he made the incredibly brave decision to not have any more interventions.

I last saw Ricky/Marlene and Milan at my brother’s wake, immediately following his funeral. It was held in the back room of a Sydney pub.  Ricky/Marlene seemed unusually subdued, even for a funeral. But in the end, he joined me in dancing.

There’s photos somewhere, (which I cannot find) of Ricky and I dancing together. Marlene is wearing a suit, with a wide bottomed neck tie with an image of Marilyn Munro on it, worn especially because my brother loved Marilyn Munro. I am wearing a flowing purple and green dress with red ribbon pinned to it. We are dancing together to Abba, which was my brother’s favourite all time music. The Visitors album. We danced and danced and I swear we felt the spirit of Ross, who used to call himself ‘The Dancing Queen’, (or ‘Frida’) dancing with us.

In lieu of the photos, I tried to generate an image of a man with a Marilyn Munro tie dancing with a woman in a purple dress wearing an AIDS ribbon but Canva AI would not have it. It said that Aids might violate it’s policies!

Aids may result in content that doesn’t meet our policies? Come on!! The AIDS red ribbon is a universal symbol of hope and unity. Why?

Ok, whatevaaaar.

Instead, I got these images. A bit of a confusing confluence of dancing, necktie and Marilyn Munro.

It doesn’t look like him/her, but still, this one below somehow captures a sense of how I remember Ricky/Marlene at that time:

I noted to Alexandria later that eve, after the wake, that Ricky/Marlene had seemed subdued, and she told me that a fortnight earlier Marlene and Milan had had a drinking binge together, and they had started arguing. Milan, in a drunken dramatic moment, smashed a glass and cut himself. Blood went everywhere. Marlene, who was drunk, ran around panicking in her bare feet and stood on the glass covered with Milan’s infected blood, cutting himself. The window of detectability at that time was 3 months, so he/she had to wait to see if she had been infected.

I couldn’t help remembering Ricky/Marlene’s assertion to me only a few months earlier, that ‘only people who don’t love themselves get AIDS.’

Oh gosh 🙁

I never heard the outcome of Ricky/Marlene’s test, as after my brother died I stopped going to Sydney, and shortly after that I started going to University.  Alexandria, knowing my family background, had actually helped me to get in to Uni through ‘special admissions’ by writing me a letter of support, confirming that I had left home early thus not finishing high school.

It was a big thing for me to study again, and it took a lot of focus. We rarely used email then, and this was prior to social media. In a sense, I think I just needed to let it all go and move on into a very new phase of my life.

It was only a couple of years after this, that medications finally came in which meant people who were HIV positive could live long full lives. Indeed, I know a couple of people who were infected from around this time and are still alive now. The epidemic continued around the world though, with countries with limited access to healthcare and good information suffering the most, and it still continues.

I used to often think of the beautiful family and community that surrounded me, in the wild and bustling city of Sydney, in that last year of my brother’s life. I still do occasionally. I wonder what happened to Ricky/Marlene. And Milan. Often I have thought of my brother. Years later I found Alexandria on facebook. But I didn’t get the sense that she wanted to connect too deeply, so I didn’t ask her about anyone. Perhaps she too had needed to let go and move on. Still, the lessons of strength and resilience I learnt from her continue. The tenderness at times with which we all beheld the virus. Learning to love and accept and behold all things. Everyone learning to love ourselves, regardless of everything. And to value quality, not quantity.

If you are interested, Henry, my mentee who I spoke about in my previous blog post, showed me this youtube clip, talking about AI not being able to generate images that bend apparent cultural norms. AI has trouble with interracial love, especially an asian man with a white woman! AI, do better.

In loving memory of all those who were around at that time, whether or not they still walk the earth.

Names (except for my brother’s name) have been changed in this story to protect people’s identities.

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Thank you for reading.

Sandra