The period of the Great Denial was about to begin.

I have copies of many of my medical records from around 1994 through to 1999. Included are correspondence between my GP and specialists, information on trials, pathology, viral loads, hospital discharges, along with my own notes giving a chronology to all that was going on. I haven’t actually looked through them for many years. Perusing them now is a very scary process. How I ever survived all this I do not know! There are some frightening prognosis, and the word “enigmatic” appears more than once as my medicos tried to work out just what the hell was going on with many of my symptoms, and test results. If I was religious, I’d say it was a miracle! But I’m not religious! This was pure stubbornness, nothing else!

Ever since having pneumonia, I’d had ongoing problems with anaemia, and though possibly just because I was HIV+, it was later acknowledged by Professor Dwyer, from POW hospital, that there was a distinct possibility it was caused by AZT. I do remember how tired it made me feel. Everything was an effort! I used to walk from Darlinghurst to the then Redfern Mall in Surry Hills to do my groceries…Clancy’s in Darlo were scandalously overpriced…and it was a slow, exhausting walk.

Everything started to decline. For most of the two years between 1994 and 1996, I was put on, and taken off AZT. My CD4 counts dropped to 160, and continued on a slow downhill slide from there. My weight started dropping! In one letter from a specialist to Marilyn McMurchie, it was stated that my weight was 52kg! Considering that for many more recent years my weight was stable at 68kg, and that I now try to maintain it at between 74kg and 76kg, find it hard to visualise myself at 52kg! During my recovery years of late 1996/1997, drinking mates at The Oxford informed me, scarily, that despite wearing baggy clothes to try to disguise it, they could tell I was rapidly losing weight, and speculated on when I would just…disappear, like so many others!

Yet despite all the signs of a rapid decline towards the inevitable end, I went into full denial, and carried on as if nothing was happening. By 1995, the Stronghold Bar had closed, though I continued to DJ at the Oxford Hotel, and for the Dolphin Motor Club at the Midnight Shift. A couple of close friends died which utterly shattered me. Stuart and Don, both whom I did my gutter drag stints with, both passed…Don from stomach cancer, Stuart from AIDS. With them gone, all the wind went out of my sails, and I threw a large party at my apartment…still shared with Tony…and sold off all my costumes and drag. An era had come to an end! The other thing that ended around this time…though in some ways substituted by copious amounts of alcohol…was my sex life. Always pretty healthy up until this time, I just lost interest, and, I gues with my weight dropping at the rate it was, I just didn’t want to be seen stripped down naked!

In early 1996, Tony and I decided to move from The Dorchester in Darlinghurst, to an apartment in Penkivil St in Bondi. It was here that things took a turn for the worst. Initially, I started complaining to Tony about how dark the apartment was…it wasn’t! Then stepping out of the shower one day, I caught sight of myself in the mirror. Who was that person, that emaciated skeleton in the bathroom with me! It was a horror show! Skin stretched over bone! I often went to the French patisserie on the other side of Bondi Rd from the end of our street. Just crossing Bondi Rd was an effort. A couple of years later, I ran into the woman who used to serve me there. She told me she would watch me crossing the road, always fearing I would collapse midway, I was so thin and frail looking. She was astounded that I had survived that period (all that I said was that I had a viral infection on my brain…not quite the truth, not quite a lie…I didn’t go into detail!).

In early June 1996, I collapsed on the footpath outside my apartment building. I could hardly breathe, and had this heavy weight in the centre of my chest. My immediate thought was that a heart attack was going to spirit me away before AIDS got me! It could be a blessing! With no one around to help, I got myself into my apartment, and rang Tony to get me to St Vincent’s. It was a collapsed left lung! Thankfully neither the cardiac problems, or PCP I was suspecting.

I was in St Vincent’s Ward 17 South (the AIDS ward) for 2 weeks. Despite my vision greying out, I kept insisting that I just needed new lenses in my glasses. I saw Dr David Cooper, but although questioned regularly about my eyes, I insisted they were fine! Talk about denial! It is a period of stupidity I’ve never forgiven myself for! To my thinking, having gotten though 13 years of HIV relatively unscathed, it could not possibly get me now! My care at St Vinnie’s could not have been better, despite a massive cut to hospital funding that occurred at this time. Our HIV nurses were walking miracles. I was still on the Oxfords DJ roster at this time, though I remember the shocked look on Sandy’s face (a manager at the Oxford) when, on visiting someone else there, she realised I was in there as well. It probably looked obvious I wouldn’t be returning to the mix-decks anytime soon!

I was discharged at the end of two weeks. It is at this point where I am about to make a decision that would save my life! Feeling that Marilyn had too soft an approach to HIV, and desiring a more aggressive approach to my health care…I had my rather scary discharge papers sent to Dr Cassy Workman! Perhaps more importantly, despite being told it could take three-plus months to get in to see the tee-shirt wearing, chain-smoking Cassy…a week later her receptionist rang to say she wanted to see me…urgently!

So a few days later, I turned up at her (then) Surry Hills surgery. Her consults were far from normal, something patients were thankful for as the casual setting put them more at ease. It is not even a point of despute that Cassy was one of the most knowledgeable, most radical, most aggressive HIV GPs in Sydney at this time. Those under her care adored her. The very first thing she did when I got in was to check my eyes. She immediately suspected CMV (Cytomeglovirus retinitis). She rang Patrick Versace (a leading Sydney ophthalmologist) and arranged for me to visit him at his Hurstville eye clinic the next day. A friend drove me there the next morning. He confirmed the diagnosis. By the time I got back to Bondi Junction, I received a phone call from Cassy to say I was to get to Prince Henry hospital, at Little Bay, IMMEDIATELY! They were waiting for me!

25th June 1996! So, a very scary bus trip to Prince Henry, without even a stop-over at home. It was coming on nightfall when I got there. As promised, the nurse in triage was waiting for me. It was not a healthy boy who turned up that night. Weighing in at 48kgs, I had chronic anemia, chronic candida, chronic bilateral CMV retinitis, and 10 CD4 cells. They didn’t need to tell me prognosis was not good! I was admitted to Mark’s Pavilion (the AIDS ward) that night, then followed 2 weeks of blurred memories…life went into fast-forward! Hooked up to blood, and saline drips. Hourly blood sugar tests…my finger tips were so sore from the pricks! In my mind, this was my final pit-stop. I remember vividly how reconciled I felt about that. Not scared at all…just very much at peace at such an…inevitability!

But the twist was coming!

The ward on the floor above us in Marks Pavilion was for the HIV/AIDS Tuberculosis guys. My first morning there, I was piled into a mini van with other patients from both floors who required care at Prince of Wales (POW) hospital in Randwick. The eye clinic there was to become a very familiar place over the next couple of years. And so my first experience with the very scary ganciclovir intraocular injections. Trust me on this…no matter how necessary it may be, our eyes just don’t want needles poked into them. And will go to any means to avoid it. Trying to keep your eye still when you know a needle is heading towards it…they have to try every trick in the book. The weird thing is that it doesn’t hurt, it’s just the eyes defensive function. Anyway, we got there, and this had to be done quite a few times a week until the CMV became quiescent. Both my eyes were full of the cloudy formations typical of CMV, though my left eye was more severely affected, with only a small window of vision left in it. The optic nerve was severely affected. I was lucky…it never got into my nervous system…a very scary way to die.

There was one very touching incident that happened. One of the TB boys and myself often attended the same eye clinic. He was a good looking lad, and appearing to have little support from family and friends, I sort of took him under my wing. I consider myself to be a pretty tough guy…I’ve had enough hard strikes in my day to make me so…my friends say they admire my pragmatism. I can’t remember the guys name, but we were sitting together in the waiting room and started discussing our situations, our fears. I put my arm around his shoulder, and it was like a trigger…we both ended up in tears. Such a brief, intimate encounter, and it was the last time I saw him, but I’ve never forgotten it. The lonely guy and the tough guy sharing an instant in time. I hope he survived his TB and eye encounter. I hope his fight coontimued.

Under Immunologist Professor Dwyer I was started on a combination of old and new drugs…AZT, 3tc and the new kid on the block…the protease inhibitor Indinivir! This was the start of what was to become known as HAART (High;y Active Antitetroviral Therapy). Viral load counts were started around the same time…my initial reading in Prince Henry was 500,000! The initial high dosage of Indinivir caused nausea, so dosages were modified. I also had a bone marrow biopsy to explore how much AZT was present there. The very nervous male nurse gave me Pethidine. I was so high…an amazing experience. The biopsy was done at the rear top of my thigh, and his first sample wasn’t sufficient. Upon asking my permission to go in again for a better sample, I was so off my face I told him to do whatever he liked! There was a very nice bruise there after,

I was in Prince Henry for 2 weeks. As I stated earlier, most of it was a blur. I’m sure I had visitors, but don’t ask me who! It was all medical…including 8 trips to POW for the ganciclovir injections. At the end of the two weeks…thanks to the new drug regimes, my CD count was doing a slow rise. Handing me over to the care of clinicians and my GP, was a logical step.

So I was discharged from Prince Henry on the 9th July 1996. I got a cab home. One would think…gee this is a really good outcome! And it should have been! I’d survived AIDS! But it was just the start of an 18 month recovery nightmare.

Thrust back into a world that was not prepared for me…for us! We became the HIV worlds Lazarus syndrome survivors! No one knew what to do with us! We were left flailing in the winds of change!

Tim Alderman ©️2025