Tag Archives: Lazarus syndrome

A 40 Year Journey Into (And Out Of) Fear Part 7

February 23, 2026Article, biography, Gay Interest, History, HIV/AIDSAIDS, Gay, HIV, HIV/AIDS, Lazarus syndrome, long-term survival, return to worktimalderman

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

A 40 Year Journey Into (And Out Of) Fear Part 5

June 15, 2025Article, Autobiography, Gay Interest, Health Information, History, HIV/AIDSAIDS, CMV, Cytomegloviris retinitis, HAART, HIV, HIV/AIDS, Lazarus syndrome, Prince Henry Hospital, Prince of Wales hospitaltimalderman

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!