One of the major problems that concerned both my doctor and myself was my weight. Having dropped to 48kg when admitted to Marks Pavilion, and being of slight build, I was having trouble putting it back on. Fortunately for me, the Albion Street Clinic started running a Deca-Durabolin (an injectable anabolic steroid) trial at this time to attempt to counter the effects of Wasting Syndrome, a common problem within the AIDS demographic. I’m not sure this far down the line of it’s duration, but I think it was 6-8 weeks, with a weekly injection, and weigh-in. What I do remember about it was the drastic change to my eating habits. For the period of the trial, I was obsessed with eating! From the moment I woke up, to the time I went to bed…all I thought about was food! I was continually planning my next meal, my next snacks! The (successful) end to this was a meteoric weight gain in a very short period of time. My usual weight was around 64kg…by the time the trial ended I was at 84kg. On going out for dinner with friends I hadn’t seen for a while, one guy exclaimed “What have you done…you look like a teddy bear!”. To be honest, I was thrilled to have put so much on, especially seeing how I had seen myself in the low, and scary, weight range. I’m thankful to say that after the trial ended, my weight dropped back to my usual range.

There is a big problem with surviving AIDS, and spending 18 months recovering and keeping busy with doctors, clinics, hospitals, peer groups, and treatment compliance sessions…and having a lot of same either end, or become more spread out…BOREDOM! Sitting at home watching “Days of Our Lives” and “The Bold and the Beautiful” daily is not a fulfilling experience! But what to do was the big question. Not fit enough to return to full-time work, and not wanting to return to my old profession in retail. As frightening as the whole AIDS experience had been, its lasting legacy was the overwhelming desire to change my life direction. It made me realise how much of my life I’d wasted doing work I hated, and never being brave enough to take the leap to follow my dreams, to step into the unknown with confidence! This was the point where everything changed, where I finally found enjoyment and fulfilment in my life’s choices.

But the question still remained…how to take the first step? I had been receiving “Talkabout” for some time, and recollected that I had seen an ad for volunteering at the…then…PLWHA office in Darlinghurst. A phone call, and a meeting with another volunteer in the Oxford Street offices…and I found myself on the reception desk, initially one day a week, but it was a fun office to be in, so I started turning up daily. This was also my first encounter with computers (other than my experiences in the 80s with owning a Commodore 64). This pushed me to do courses in basic computing, and the Microsoft Office Suite. Around the same time I did a Peer Group Facilitator course with ACON, brought about by me having done a HIV/AIDS survivor group with them. I went on to facilitate some groups.

After around 6 months on reception, Jo Watson…the then Research Officer…asked me if I’d like to work with her as an assistant research officer. The office manager (Ryan McGlaughlin) interviewed me and I got the job. It was here that I wrote my first article for “Talkabout”, a quite humorous piece on my doctor, Cassy Workman. Though not named, it was obvious (by those who knew her, or were patients) who it was about. From this point I became a regular contributor to Talkabout, and 28 years later, I’m still writing for the magazine…with occasional breaks! I also became a member of the Talkabout Working Group. Like many occasions in community groups, funding dried up, and I had to move on.

It was just after this that I was informed that a research position was opening up with another community-funded project called Positively Working. Having survived AIDS, and now being in a position to orientate myself to new work experiences…outside what I had been doing post AIDS… it was a position I slotted into quite neatly. At Positively Working, we were compiling a report (I was working with Sonia Lawless) on the return-to-work needs of guys like me who had survived AIDS, and we’re now faced with the very real situation of…what do I do now; and where the hell do I go now! I personally interviewed a number of the guys, and it was quite eye opening! Once again, after six months the funding dried up. We got the report out, and once again I was faced with what to do!

There was one very interesting…and disturbing…occurance that resulted from my time there. Several of the guys I interviewed mentioned that they had used the “services” of a supposed HIV/AIDS employment service on Oxford Street called “Options”. Evidently Options had been using guys attending there as a free workforce in the office under the guise of “work experience”. I was very angry to hear this, and decided, as a writer for Talkabout, to investigate and expose this issue. I approached the office as a return-to-work client. Not only were they using their clients as an unpaid workforce, they were also not providing the services they were touting, to help guys break back into the workforce. Clients were being placed in front of computer screens with the usual run-of-the-mill employment services, and told to find a job. Contrary to their name, Optoons provided no options.

I wrote a scathing article on them for Talkabout. The editor forwarded the draft onto them, basically saying this is about to come out! Well, didn’t the shit hit the fan! The manager, Peter somebody, demanded to see me. I turned up at his office, and he tried the good old sweet talk! Naw, didn’t sway me. The threats came next, to sue Talkabout, the editor, and me! I was amused! Anyway, to calm the waters, and ensure no action was taken, the editor did a rewrite. I wasn’t happy about it, but at least wanted Options thrown into the spotlight, so allowed a very, very watered down piece to be published. Several months later, Options closed. I just smiled!

I undertook Positive Speaker Bureau training in 1998. My first gig was to a group of nurses at the Albion Street Centre. At the end of the talk, I opened the floor to questions. The final question floored me, as training hadn’t prepared me for this one…did I have survivor guilt? I did…after a long pause…give an answer. Yes, I did! I spent 12 years as a PSB speaker, being quite in demand with community groups, universities, and nurse training talks. I had no problems filling an hour. I was also on the PSB working group.

Two of our major community groups instigated return-to-work groups, but in many respects they missed the mark. The Positively Working report pointed out that one of the major requirements of AIDS survivors contemplating how to move on, or approach a return to the workforce, was choices, be it returning to their previous profession, or taking up education or training, or a myriad of other options such as opening a business, or moving a hobby to a business. What they were finding in the groups that were set up was a repeat of information that wasn’t new to them, or of no use at all. There needed to be more options than resume writing, or interview techniques. One project that did have a different approach was “Reconstruction”, a group facilitated by Pene Manolas. In my own time, I did a number of talks at these group meetings, encouraging guys to follow dreams and desires to find more fulfilment in lives now “reset to zero” and going off in new directions.

In 1999, I was on a very unpleasant…understatement…liquid protease inhibitor called Retonavir. It was very effective, but disgusting to take. Cassy Workman supplied her patients on it with gel capsules and a dropper. Putting it into the capsules made it a lot easier to take. I made an appearance on a popular television series at the time called “Healthy, Wealthy & Wise”, who were doing a segment on HIV and it’s impacts. I can be seen sitting in a park in The Rocks, and filling gel capsules with Retonavir. I guess that was my 15 minutes of fame!

Also in 1999, following my stint with the Positively Working project, I briefly returned to my old retail career…but as a cash office supervisor this time, with Angus & Robertson booksellers in the city. The manager there had a large group of gay friends, so when, during my interview, I explained a long absence from employment on AIDS and recovery, she understood exactly what was going on. It wasn’t why I got the job, but my long retail background on cash handling.

1999 was another busy, and scary, year. I noticed I was having problems walking a straight line up the footpath. It wasn’t neuropathy, as at that stage it wasn’t as bad as now. As I walked, I drifted to the left of the path, and had difficulty getting myself back to the centre. Over a few weeks, it got progressively worse. At one stage I was using a walking stick to maintain balance. Cassy sent me to see Bruce Brew, a well known neurologist at St. Vincents. He was baffled, as was Cassy. At one stage he sent a letter to Cassy saying he suspected it may be PML (Progressive multifocal leukoencephalopathy is a rare, severe, and often fatal viral brain infection characterised by progressive white matter damage. It is caused by the JC virus (JCV), which lies dormant in most adults but activates in individuals with severely compromised immunity. Common in HIV/AIDS, cancer, or patients on specific immunosuppressants, it causes rapid neurological decline). A very scary prospect! AIDS dementia was another possibility.For her part, Cassy ordered up a raft of tests…iron, folate, B12, cortisol, thyroid, CT scan, gallium scan, Addison’s disease. The last resort was an MRI! And there it was! THE VIRUS…on my brain! It could frightened be seen in the scans! During a drug combination change, it had picked a small opportunity when the new combination was starting to kick in to cross the blood/brain barrier, and up into my head. The solution was actually very simple…when the new combination kicked in, it kicked the virus out.

I was at A & R’s for about 4 months…and encountered the difficulties other guys had of obtaining meds from hospital pharmacies during lunch breaks, and fitting in doctors appointments…when I got a phone call from Bill Whittaker (now deceased) to help out doing data entry for the AIDS Research Initiative, which was run out of Cassy’s medical practice in Little Oxford Street (called Ground Zero Medical, as it was on the site of the original Club 80). So I returned to Darlinghurst!

It turned out to be a double job. On days I wasn’t working for the ARI, I was doing reception work in the medical practice. It was here on a working day in the practice that I developed excruciating pain in my back, in the kidney area. Cassy diagnosed Indinavir sludge, a build up of Indinavir in the kidneys. I was told to drink a lot of water…it didn’t help! I spent a good part of the day in the nurses station with Janice (the practices nurse) unable to keep still because of the pain, which just wouldn’t let up! Cassy checked on me a couple of times, but didn’t suggest I go to A & E. By mid afternoon, Janice took it upon herself to call a taxi to take me to St. Vincent’s. I needed to have a stent inserted in my kidneys to drain the sludge.

I was so disappointed that Cassy had been so blasé about it that I quit her practice. And her as my doctor!

A new relationship started with Dr David Austin, at Holdsworth House Medical Centre.

Tim Alderman ©️ 2026