Monthly Archives: July 2024

A 40 Year Journey Into (And Out Of) Fear Part 1

I love history. Always have, and excelled at it at school. Not just local and world history in general, but individuals personal history as well. Though often distorted, edited to fit the times, world history is fixed. There is only one truth to it, no matter what narrators may say. Personal histories are quite a different thing. A hundred people will produce a hundred histories, each distinctly individual, never duplicated by anyone else. I have written much about my experiences with HIV over the last 25 years, most of it via “Talkabout”. Though personal, and often intimate, none have really gotten into the nitty-gritty of my personal, lived experience. This reflective piece is to rectify those omissions, giving both a factual and lived insight into a period in gay history that should never be forgotten. The recent Covid experience really drove home to me how HIV, its past, and still present history, was no longer of any consequence. Covid was being spoken about as though it is the only pandemic of recent time. It would be interesting to see where Covid sits in 40 years time. So this is my history with HIV/AIDS. It is more detailed, and more anecdotal than my previous writings…which also means it’s much longer. It is, with no strutting involved, a story of survival, but if survival is the gauge of one’s strength and tenacity, then I have come out at the end of it with flying colours, the glass half full, so to speak.

Over 40 years has passed since I sero-converted to HIV. I remember it well…I was managing a retail store in Sydney and was due to go on leave in August 1983. My last day before going off on my break was hellish. Temperature, diarhhea, extreme lethargy, disorientation…I couldn’t wait for the day to end. As it turned out…for the fortnight it went on for to end. I had only been out for 3 years…a late closet jumper…and I have to admit to being very trashy, making up for lost time as it was. I have wondered over the years, as have many, just who it was that infected me…and where! Was it that hot American boy who was staying in The Connaught in Darlinghurst, who picked me up one night just after my return from Melbourne (very likely!) or was it a Melbourne or Sydney local who had returned from a holiday in the USA, or, like me, gotten off with American boys (the flagour of the month) here. Of course, I’ll never know, but the speculation remains anyway!

Since that time, both as a writer, and as a 12-year public speaker with the Positive Speakers Bureau, I have told of my journey with HIV/AIDS. But the story has always had constraints…either in word length with articles, or time restrictions in talks. There is a lot more to the story than I tell in these…often done by rote…sessions.

I have just finished reading Cheryl Wares “HIV Survivors In Sydney – Memories Of The Epidemic”, an oral history project that I was part of, contributing a 21/2 hour interview with Cheryl when I lived in Gaythorne, Queensland in 2014. I was disappointed in the book, for as much as Cheryl wanted it to be a story of ordinary gay men surviving HIV/AIDS, and how it affected their lives both then, and now, it really came across as a voice for…and was hijacked by… HIV activists, rather than just us bar crawling gays-on-the-Golden-Milers. I was left feeling that both my contribution, and the contribution of others like me who weren’t part of the activist community was largely overlooked…again. I know it sounds like sour grapes, and mine is only one of a thousand survivor stories, but like many others I want there to be some sort of public record of many aspects of the HIV/AIDS survival story that doesn’t make it into many articles, or talks. The one thing Cheryl’s book did do was to invoke memories of so many personal experiences…and feelings…that made my personal HIV journey…MY journey.

This is not the first time I’ve contributed to interviews and photo sessions on HIV/AIDS survival, and either been left out in the cold, or had my story overshadowed by activists…or academics. But more on that as we go along. Because this is a personal transcript, I am not putting a word limit on it, so it’s going to be long. I want all this unknown or forgotten information to be in one article. It’s not a soul-cleansing, so don’t get me wrong. I see it more as an addendum to HIV history. I want it in writing before I either forget it, or confuse it in the fog of ageing. Luckily, I am a bit of a hoarder, so have copies of a lot of the things I will be referencing as the story unfolds. To make sense of it, I guess I need to go back to the beginning.

I have written a lot on my family, the dysfunctionality of my growing up, in my blog (http://timalderman.com), so I am not going to rehash already told stories here. In a nutshell, I was born in St. George Hospital, in Kogarah (NSW) on the 18th January 1954. I had one younger brother, Kevin, who was born in 1959. My childhood was pretty uneventful until I was 11, where with my mother deserting the family home, when my brother and I were at school. My father was a difficult man, trapped in a past that had long gone! Yet, he managed to find the housekeeper from hell…to this day I have no idea where he found her, though her move from the bed in the sunroom of our Sylvania home to the bed in the master bedroom occurred within a week, so I am left to wonder… entering our lives. Her persecution of my ADHD brother was relentless, and led to the death of him, at my father’s hands, in the waters below the cliff top known as The Gap. This blew my innocence all to the shit. My knowledge of “being different” at age 9, and my eventual coming out after my father’s suicide are also on my blog, so let’s move it all along.

1980 finds me in Melbourne, where I had just come out as a 26 year-old. A HIV story begins. Little did I know that both my life as a gay man, and my life as a HIV+ man were to walk the same road.

So what was it really like in 1982 to be reading snippets in our local gay press about this mysterious illness (KS, or Kaposi Sarcoma), rearing its ugly head in the gay ghetto’s of America, that seemed to be targeting gay men who frequented the saunas, and quickly killed them? Well, cynicism and disbelief to start with, and the surety that within a short period of time they would find an antibiotic to clear up yet another STD. However, the snippets were to become columns, the columns pages as the mysterious and deadly virus…originally labelled as GRID (Gay-Related Immune Deficiency (Gay plague/Gay syndrome) in 1981, it was followed by HTLV-3 in 1083…human T-lymphotrophic virus type 3…leapt from the shores of America and found its way into the gay scene here. The panic and fear began!

Our response was mixed. The first case of AIDS was reported in Sydney in October 1982 by Dr Ronald Penny. In July 1983, the first recorded Australian death from AIDS-related causes occurred in Melbourne.. The most notable death in these early days was Bobby Goldsmith (1984).We had our usual ratbags who yelled and screamed about “God’s vengeance on the evil, sick and perverted gay lifestyle”…obviously a different God to the compassionate, all-forgiving one that Christians liked to rant about…the most vocal and notable being the Rev Fred Nile MLC and his Festival of Light, and Call To Australia affiliations, the advocates of hate and intolerance who demanded quarantine for all infected persons, and those of the citizenry who either quietly or vocally wished that we would all die or just go away. Mind you, we did have our fun with them. I vividly recall one early Mardi Gras…back then, joining the parade was a very informal process…where the Festival of Light were protesting at the parades starting point. Myself and some friends, dressed in leather chaps with our bare backsides hanging out of them, deliberately stood in front of them, shaking our booty, much to their horror and disgust.

There is no watering it down…discrimination and stigmatisation was rife. It was frightening!

Thankfully, common sense eventually prevailed and both the government and the grassroots gay community combined to put both AIDS Councils and NGO programs in place. Our quick response was instrumental in Australia always being at the forefront of HIV/AIDS care. Within 2 years every state had an AIDS Council under the national umbrella of NAPWA (National Association of People with AIDS), and the formation of support organisations such as The Bobby Goldsmith Foundation (BGF), Community Support Network (CSN) PLWA (which was to become PLWHA), ActUp, and Ankali. Without these organisations life would have been grim for those infected. They provided financial, emotional and spiritual support for those who, quite suddenl found them selves with a death sentence hanging over their heads, along with the fear of unemployment and homelessness in the midst of the hysteria going on.

I digress! In 1985 testing was introduced. It was a bit of a strange affair in the early days. Due to the hysteria, discrimination, and fear of being dragged off to quarantine…a genuine fear… no one wanted their personal details on a database, so at clinics like the Albion St Centre you chose a fictitious name, and the clinic then issued you with a number that then became your ID. Mine was Peter 3080. When things cooled down, the fictitious name was dropped, and replaced with your real name. You had a blood test, and waited for two to six weeks – talk about high anxiety – to get your result. At the time of my HIV test, I already suspected that I had sero-converted and was going to come up HIV+. I was right. Counseling? Oh yeah, we had a lot of that back then. “You’ve got about 2 years to live”. Shrug shoulders “Okay”. And off we went knowing the inevitable was rapidly approaching! The initial window periods were reasonably long, but got much shorter as time progressed, and the virus mutated. That I did not get seriously ill with AIDS until 1996…though their were other factors in play…I always put down to getting infected early in the history of the virus, thus getting a much weaker mutant of the virus than what was to come. I was in a relationship at that time, and my partner came up HIV-…already the juxtaposition between positives and negatives had begun. The strange thing was that I felt no need to hide my status. I turned up at the Oxford Hotel and said to friends…oh well, I’m positive. Of course, I was far from being the only one.

Then the horror stories started! The disgusting treatment of young Eve Van Grafhorst is something for all Australians to be ashamed of. Born in 1982, she was infected with HIV via a blood transfusion. When she attempted to enrol in her Kincumber pre-school in 1985, parents threatened to withdraw their children due to the (supposed) risk of infection. The family was literally hunted out of town, and forced to leave the country and go to NZ. I will never forget the sight of this poor, frail girl on her way to the airport. I, like many others, was horrified that this could happen in Australia. Thankfully, her NZ experience was quite the opposite, and she lived a relatively normal life until her death in 1993 at 11 years of age. Her parents received a letter from Lady Di praising her courage

To be continued

Tim Alderman ©️ 2024

HIV Long Term Survivors Awareness Day Reflection

In early 1994, I had a huge 40th birthday party at the Stronghold Bar, in the basement of the Clock Hotel in Surry Hills. At the same time, I dumped the beautiful man who had been my boyfriend.

With declining health, I thought it would be my last big birthday party.. I hoped I might get another year…maybe 2. I did not want my boyfriend to be lumbered with the care of a dying man. There were others better equipped to do that. At that stage, I had no inkling that my guess would almost come to fruition, and that within those two years, HAART (Combination Therapy) would appear. It whisked me…literally…from the arms of death. Battered and bruised from my encounter with AIDS, I was thrown unceremoniously back into society.

Even at that stage I was already, along with others who walked similar though divergent paths, a long term survivor. According to the statistics, I should have departed this life around 1987. Four years would have been considered a good run, let alone thirteen! That I had survived that long…longer than most of my social circle…filled me with a strange mix of guilt, thanks, and hope. Having been given a second chance, nothing was going to be the same again! And it wasn’t!

Now at 70…way past the self-imposed 40 deadline…and as a 41-year long term survivor, the trepidation of those earlier days is way back in the dark past. Though I still get a jolt when I fully realise the implication of those two figures…70…41! It seems surreal. I did grab the opportunity, and reinvented myself…a university degree in writing, and two TAFE degrees in both cooking (chef), and fitness have positively changed my life direction.

As a long term survivor…and I wear the badge with modest pride, having beaten the odds…the other significant aspect of having been where I have, is the knowing that I have lived…and continue to…through the entirety of a pandemic. What irks me is that, as a valuable historical resource, my knowledge is overlooked, pushed into the background of history. Covid was nasty…and still is…but was treated as though it was the worst thing to happen to mankind. Yet only 40 years earlier, one of the worst pandemics of modern times had started to run its course, and over 40 million people have died as a result of it.

We have short memories!

Tim Alderman 2024.

That Crazy Weird Old HIV Guy

Let’s get one thing straight…I’m NOT a conspiracy theorist! I would like to think I weigh things up before coming to a conclusion. I’ve seen…and heard… a lot over the last 41 years of my life with both HIV, and AIDS! Some good, some not so good. Many will not agree with me on some, or all of these points, and that’s fine! But there are also a lot who will! There will never be a Royal Commission, not even a dissection of how HIV was handled “back in the day”. There was a thinking that drastic times called for drastic actions, and thus everything was acceptable, despite any damage it caused. I’m one of those who begs to differ, even if it makes me out to be a crackpot! Oh…and another point I need to make…yes, I AM suspicious of Big Pharma! Both their intentions, and practises!

So…why am I defending myself? Well…I have some “outside-the-square” theories/thinking on how the HIV community has been used by the drug companies over the decades. Of course, they are BIG, so have a lot of clout, and nobody ever seems to question their intentions.

I have always considered it a bit odd that there have been investigations into how Covid was handled, federally and on a state level, but nothing into the handling of the HIV pandemic. As stated already, it is almost like there was an “anything goes” attitude towards issues regarding HIV. As long as an action could be justified, it was okay!

In 2018, I had a chapter dedicated to me in the “HIV Book Project” publication of the same name. Over the decades, I have had many interviews by media, including Good Weekend, and a segment on the television series Healthy, Wealthy & Wise. Apart from a very cringy article in The Bulletin in 1987, back when we knew fuck all about HIV treatment, and survival rates, my story, as interesting as it is, as told in interviews and photographic sessions, had never been published in the mainstream media. This has always appeared to be the domain of activists, HIV “hierarchy”, and academics. So much for the voice of the HIV guy on the street!

My interview and photography session for the HIV Book Project took place in Sydney Park, with an ex, and my dog, Benji tagging along. When they decided to include me in the book, I was, to a point, surprised! My opinions were controversial, and my actions to handle my HIV drug treatments my own way must have raised many an eyebrow. After all, compliance had been rammed down our throats for over 20 years, and that someone like me dared to defy the norm was, to say the least, foolhardy! To my way of thinking, our doctors didn’t decide our medication dosing…the drug companies did!

After being on one regime or another…extending back to the days of mono therapy…for over 25 years I was greatly concerned about how these drugs must have been knocking my body around. At that time, I was on a regime of three drugs twice a day. Over a 7 year period, I had made the very personal decision to halve my regime to once a day. This effectively cut out side effects I was experiencing at that time. It also gave my body some respite from the continued battering of long-term drug dosing. To make things worse…I was also taking a drug holiday every weekend. So these views and actions were published in the book. I had never admitted to anyone that I had taken this action. Not even my doctor!

After publication, I read the other stories in the book. Comparing my story to theirs, I actually felt as though I had come across as a bit of a weirdo! Perhaps to my own detriment, what I hadn’t explained was that when I started this action, my intention had been that if by halving my dosing my viral load climbed, or my CD4 count dropped, I would resume the prescribed dosing. Yet after 7 odd years of doing this, my viral load was still undetectable, and my CD4 count continued to climb! So much for the need for compliance! I’m not advocating that everyone on HIV drug regimes should do this…but it is food for thought!

And it doesn’t stop there! I openly defied those who love to claim that AZT was beneficial, and kept the wolf from the door! This was an incredibly toxic drug! Having failed as a cancer drug due to its toxicity, it was suddenly hailed as a breakthrough drug in the treatment of HIV, despite trials such as the Concorde trial (Britain/Ireland/France) labelling it as “human rat sac”. Anyone who saw “Dallas Buyers Club” would be familiar with the disdain in which the drug was held. Its side effects…and we were dosed massively with it…were horrendous, including liver and kidney damage, peripheral neuropathy, knocked the immune system around (immune suppression), and anaemia. On a HIV forum many years ago, I posted that I personally held AZT responsible for the sudden decline in my CD4 count, and the immune suppression that brought about my run in with AIDS. I thought I would cop a slamming for expressing such an opinion, only to find in the comments that many agreed with me! Like me, many regretted taking it!

I also question…please note that word…the ethics behind the pricing of HIV drugs! At one time, the actual retail price of the drug…usually in the many hundreds of dollars…was printed on the pharmacy label. Anyone on three or four drugs would never have been able to afford to buy them every month, especially anyone on a pension. One has to wonder that, without the PBS, would the drug companies have just allowed us to die…or would we also have had to run buyers clubs!

Which brings me to resistance testing…another drug company instigated test, and one I have always been…vocally…doubtful about. Excuse my cynicism, but if a drug company is developing and pushing a particular test, there has to be something in it for them!Has anyone noticed…and I’m sure you must have…that pretty well everyone who had a drug resistance test was taken off the older drugs (despite them still working) and placed on the newer drug regimes! Logic decrees that, considering the costs of research and development, Big Pharma would prefer us all to be on the newer drugs, considering that they would have the highest financial outlay! I reckon we were really duped on this one, especially considering that currently those who are experiencing weight gain…another point worth raising…from the newer drug regimes are requesting a return to the older drugs…which at some stage they would have been told they are resistant too. Interesting, that!

So call me a weirdo, or a ratbag! To be honest, I really don’t care! For no reason has the term HIV Industry been coined! Someone is making money from it, and undoubtedly keeping the shareholders happy…and it’s not US! I would rather be called a whacko…at the least, after 41 years being HIV+…that I’ve experienced enough, indeed seen enough, to know that if you are not one of the sheep who just goes along with the flow, if you are someone who thinks for themselves with a moderate dose of cynacism, you are always going to be attacked and slammed.

I have broad shoulders. I can handle a bit of criticism.

Tim Alderman ©️ 2024