We had been forewarned! Told that the new antiretrovirals were game changers. That people who were on the brink of death could be reprieved, could, like Lazarus, be brought back to life. The community organisations were given time to prepare for a change in how HIV/AIDS was handled! Did they listen? From my perspective…no!

I was discharged from Prince Henry Hospital on the 19th June 1996, after ten days in hospital. That was how quickly things were turned around. It was winter. I weighed just under 50kg, and I really felt the cold. I got a taxi from the hospital to Bondi Junction. My first port of call was Target for a new duna, and warm clothing, then home.

And so began a period of self-imposed boredom. For those of us who survived the final ravages of AIDS, we were, for a time, in a no-mans land. Caught between recovering from something we thought would be our end (and under earlier circumstances would have been), and having to mentally and physically readjust ourselves to an ongoing life, with minimal support services, not knowing what to do with ourselves, and realising that nobody else knew what to do with us either. It was a new world for all of us!

For anyone who thinks that surviving something as devastating as AIDS would send me back to my old life…think again! For the next 18 months, life became an often tiring and frustrating round of clinics, doctors appointments, specialists, support services, support groups, and pharmacy trips. When not doing that, I was stuck in front of the television watching “Days of Our Lives” and other trash daytime television. I ruminated on, and disected my previous life, as it was now a pre-AIDS, and post-AIDS existence…as that is what it was! It wasn’t a life! Change was going to be essential!

So reality started setting in…where exactly was I going from here? Taking vast amounts of antiretrovirals came with its own problems. In these early days of HAART, compliance was drummed into you. The drugs came with both dietary and time constraints. You often couldn’t eat fatty foods prior to dosing, or they had to be taken on an empty stomach. This both restricted eating out with friends, or involved rising at ridiculous times to conform. Likewise, doses had to be eight hours apart, so you were often getting out of bed in the early hours just to take pills. So I was often tired, and cranky! Added onto an already heavy pill burden were prophylaxis drugs like bactrim, dapsone, ketaconizole, clarithromycin, and the list goes on, which were often taken a couple of times daily. Then we have side effects…mainly diarrhoea and nausea. I was getting scripts for Imodium as I was buying fifteen by five boxes (yes, 75) at a time. If I was lucky, they’d last one month. They often didn’t! A bucket of Napisan was permanently in the bathroom for soiled underwear. It was a nightmare, and I often wondered if I had survived AIDS, to die of organ failure from all the drugs I was taking! It sounds like an exaggeration when I tell people that initially I was taking around 340 pills a week…but just look at Imodium, where I was taking a staggering 140 pills a week, or more!

Help came from the wonderful, empathetic Pene Manolas, and her “Calao” Project. Caleo was a treatment management program, whose sole purpose was to encourage and empower those attending to remain compliant despite the burdensome load of pills we were taking. Over the 6 (or 8) weeks of the program you were given tools to help you achieve that aim. It was incredibly successful, and lasted for 2 years, then ceased due to funding. It was not my last encounter with Pene.

At the outpatient eye clinic at Prince of Wales (POW) hospital in Randwick, I was still attending on a monthly basis, and continued, at least for a time, to get the ganciclovir injections directly into the left eye. In 1998, Professor Patrick Versace asked me if Ivwas willing to participate in the Vitrasert Implant trial. The tiny implant was inserted into both eyes, and leached ganciclovir into the eyes over a 9 month period. The chances of developing a cataract were estimated at 4%. I was a more than willing participant in this trial, knowing how stressful it was having the intraocular injections. So, two operations to insert the implants, which were held in place with a stitch. The 4% chance of developing cataracts became 100%, so then another two operations to remove the cataracts, and insert new lenses. The whole sad part of this was, that with HAART proving so successful at keeping opportunistic illnesses away, they were never needed, despite their success. It is still present in my right eye.

Then the panic attacks started. I would wake up during the night and feel like my bedclothes were suffocating me, and had to throw them off. I’d get claustrophobic in underground trains, and stopped getting them. I had a panic attack one Sunday night, home on my own watching television. A gay lifeline had been established by one of the community groups… can’t remember who. I rang the line, needing someone to talk to, only to find their phones weren’t manned on Sundays…just an answering machine. They rang me the next day to apologise, but it would have been a bit late if I was suicidal!

I had a transition period getting used to bad vision, and only one eye. I had a couple of serious accidents. I was on my way to the POW eye clinic one week day, and got caught in this crush of people rushing to get a bus on Crown Street. There was a wooden bus seat just out of my line of vision, and my knees hit it, and I went for a sixer. Took the skin off my knees and shins. Only one guy stopped to help me! One! He checked me over, and despite how serious the wounds were, I told him I was on my way to the hospital anyway. He saw me onto the bus, and the nurse in the eye clinic patched me up. The second time, on the opposite side of Crown Street, I tripped over some tree roots which had pushed the asphalt up. This time the skin was off both knees. I then realised that I had no perspective in my one working eye…the footpath looked flat to me. I started slowing down my walking from that time on. My peripheral neuropathy was setting in at this stage as well, moving from my feet to my ankles and lower shin. This caused me to stagger when I walked, and was responsible for getting me banned from three gay hotels over time. I wrote a letter to the Star Observer about it when the bouncers denied me entry to the Colombian Hotel on the night of my 50th birthday, and refused to get a manager or supervisor for me to speak too. The Colombian apologised in a return letter, saying the bouncers had been out of line.

The most serious falls happened in Bondi. I went to visit a favourite gift store down there, and while wandering around the store, my legs just gave out on me and I collapsed on the floor. The shop assistant, who had been talking to the owner, helped me up. Five minutes later, it happened again. Thankfully I didn’t break anything. But this time, with a frustrated look on their faces, without asking me what was wrong (in retrospect, I should have requested an ambulance) and assuming I was either drunk or drugged, just grabbed my arms, ushered me out of the shop, and sat me on the footpath up against their window. I was in a pretty serious state of shock, not knowing what was going on. I sat there for over an hour, not game to try standing again in case the same thing happened. When I eventually tested them, they seemed to be fine. I started walking home…we had moved from Penkivil Street to Ocesn Steet at this time…up Bondi Road. Deciding to visit a cafe on the other side, I crossed at an intersection that had both lights, and a small pedestrian crossing. I crossed through the lights fine, but on using the crossing my legs just gave out again, and I collapsed on the road, hitting my head on the gutter. Thankfully there was no turning traffic, and a guy sitting in the window of a nearby pub rushed out, grabbed me and helped me to the footpath. I eventually got upl had a coffee in the cafe, and walked home. The gash on my head was serious enough to go to hospital. It never happened again, though I suspect it was a precursor for what was to come!

Feeling a bit lonely and outcast at this time, I decided to try a personal classified in the Star Observer. I was quite open about my HIV status, and that I was damaged goods (yes, I really did say that!) from AIDS. I received about 10 letters in reply…I still have them…all from HIV+ guys. I met a number of them, though none really compatible except for about 3. One was a serial replier to classifieds whom I had been warned about. He was a bit of a problem, so dropped very quickly. Had a one-nighter with another (I’d had no secxual encounters for about two years at this time), and I liked him, but he didn’t want anything further. Then I met Michael, who lived at Rose Bay. We started a bit of a “thing”, though I think it was more a matter of us both being lonely, more so than being compatible, and we both had someone to go places with. Having had a number of bad experiences through the classifieds, the first thing he said to me when I knocked on his door was “Wow…you’re actually good looking!”.

Between 1996, and 1997 antiretrovirals started being pumped out at a staggering rate. Over this period, I must have been, in HAART combinations of three or four drugs, on every drug that was released (thank heavens for the PBS, who approved them very quickly). These included AZT, 3TC, Indinavir (a high dosage caused nausea), Nelfinavir (caused chronic diarrhoea), Saquinavir, Neverapine, Retonavir (more on this shortly), Combavir (AZT+ 3TC)l Efavirenz, and Abacavir. The quick approval of drugs, due to their efficacy, had its drawbacks. Long term side effects often popped up as time went on, for example it was found that Indinavir could cause kidney stones. For me, with both AZT and 3TC still being included in my combinations, my peripheral neuropathy got worse (even now in 2025 I have totally numb feet, which now affects my balance).

In early 1998, through a mutual friend I was out with one Sunday night, I met David in the bottom bar of the Midnight Shift. I was in a casual relationship with Michael, and he was in a relationship as well. We finally surfaced a couple of days later, both deciding to end our current relationships. David and I then went on to be in a relationship for 16 years.

Nelfinavir was the worse drug of all as far as diarrhoea went. David and I were both on it, and it was a nightmare. We were both scared to go out for any length of time, as we would inevitability be caught short. Nelfinavir gave you no warning (and it over rode any amount of Imodium) so you were often caught out grocery shopping, at a movie, or on a walk. We discovered that public toilets were disgusting! There were often underwear changes several times a day. I got so fed up with it restricting my life, that I just charged into Cassy’s consulting room, and demanded she change it! She did! Shortly after, David was also taken off it.

However, despite all this, my viral load continued to, initially, drop, then maintained itself at undetectable. My CD4 cells continued to do a slow, but constant, rise. Probably the only reason we put up with what we did.

But even more changes were coming!

Tim Alderman ©️2025