Tag Archives: virus

Sacrilege: Living HIV Outside The Square!

“Sacrilege” may seem like a strange word to use in relationship to ones life. Its religious connotation is “the violation or profanation of anything sacred or held sacred” thus by a very loose expansion of the meaning – a human life, as it is, in many respects, regarded as sacred. Stretching definitions even further – and many would not be surprised that I don’t take it literally – infecting it with HIV could be considered a sacrilege, be it intentional or unintentional. The sacred has been violated! Also, as a HIV+ man, it is expected that I will follow a set of “rules” as dictated by various community groups, doctors and specialists! To totally ignore the expected, and go off down your own path would be considered by many to be sacrilege!

I can’t contemplate continuing to live with HIV without viewing it within the framework of my life! No war is without its battles, without its dark times, yet still seeing the light at the end of the tunnel! If I had to use a word to describe myself, belligerant comes straight to mind – but then I think to myself “That’s a bit harsh!”. Okay…cantankerous is one that has been used by those close to me, so that’s sort of acceptable, and it’s true! Curmudgeonly… a word I love, but I’m not really surly enough! So I’ll just stick with stubborn! I could claim that it’s a Capricornian trait, but it goes deeper than that.

At 12-years-of-age, my stubborn streak was already settling in. Though unrecognised by me at the time, it was a survival mechanism that was to serve me well for most of my life. It is only when I look back to 1965, that I realise what a testing ground it was: my mother left my father; a bitch of a housekeeper who was to forever change our family dynamics; and my father jumping over The Gap with Kevin, my brother – resulting in my brothers death – would have sent a less resilient person into dark depths that they may never have risen from! Considering the lack of psychological & emotional support available at that time, to have come out of that year relatively unscathed had to show a stoicism way beyond that normally expected from one so young. By digging my heels in, ignoring all the negativity around me, and just “getting on with it” – a philosophy I still embrace – I was to set in place a mental tenacity that was to impact my life for decades to come!

There was no love lost between my father & myself! Even prior to Kevin’s death, I had seen – and felt –  a violent streak in his nature; almost a need to punish those who had a life contrary to his. He could be a right royal cunt! The only way I could establish my own independence – which had flowered rapidly after Kev’s death – was open defiance! He told me not to smoke…so I smoked; not to drink…so I drank; to get a trade…I went in every direction but; and to get my hair cut…I left it to grow – despite a threat, after an argument about it, to “knock my block off”! He even denied me a 21st birthday celebration, because he had been at war when his fell due…I organised it myself. My grandmother left me a small inheritance, and just after my 21st, I moved out of home, into my own apartment. After he remarried and moved to Vincentia (on the south coast of NSW), we had little contact. After his suicide via carbon monoxide poisoning in his car in 1978, I never cried a single tear – but just let out a massive sigh of relief! I was free! As the ultimate act of a true prick, he left me nothing in his will – it all went to my step-family! Just to show that they were all tarred with the same brush, directly after his death his sisters indulged themselves in a game of telephone harrassment against my step-mother. I was glad to walk away from them all!

As soon as the old man died, I came out! It is the one time my usual defiance was kept capped. I had seen what he wss capable of with my brother, and my survival instinct whispered to me to be  quiet about this issue. Again, I had witnessed him & his mates yelling “poofter” out of the car window to some poor guy who did nothing more than wear a pink shirt! As I said – they were pricks! Stubbornness does not necessarily equal a death wish! Then, having stepped out of the closet, I megaphoned my life choice to all and sundry, including my employees. No one seemed particularly surprised! There were some in my workplace who were not impressed with my sexual preferences, and made no secret of it! My pure indifference to them was reward enough. My decision to desert the security of a regular job had nothing to do with my detractors…it was based purely on a desire to break free of a life I wanted to leave behind. But the curve balls were to keep coming, with no inkling at that time of the odd parallel path that both being gay, and being HIV+ were going to lead me down!


Even as I was coming out in Melbourne in 1980, snippets about a lethal cancer, that was killing gay men who frequented the saunas in the USA, were appearing in the local press here. I read them, and like many others, though not panicking, was left with a feeling of unease. That unease turned to immense consternation over the next couple of years, as the reports became more alarmist, and HIV crossed the ocean to our shores. By the time they developed a test in 1985, I for one was already stacking the odds – and not in my favour! In retrospect, this may have been a defence mechanism against coming up HIV+…that if I did, I was already prepared for it, and if I didn’t I could just breath a sigh of relief. The former proved to be true!

Back in the day, there was a severe lack of counselling, and given the sheer volume of testing results coming in at that time, was cursory at its best. When I went to get my result – and I don’t know why I made the presumption I did – the positive result was not a shock. These were strange (ethereal?) times, and for those of us admitting to our – then – death sentence, it was almost like belonging to a select club.

There was a two year window given at that time, between diagnosis and the advent of AIDS, leading, so they thought, to an inevitable death. Some didn’t make it to the window period, and my first friend, Andrew Todd, died at the end of 1986. I made it to the two year point…and was still very healthy. By then, the window for those diagnosed in 1985 had been expanded to five years, so the waiting game for many of us continued.  Up to 1990 is a very convoluted journey, and I don’t want to rehash history that has already been covered in many writings, and is really outside the parameters of this article. I decided to make this a useful period, and did a number of trials. It was better than just sitting around and waiting. This was a time when I made my one bad decision regarding my healthcare – I allowed my doctor to – after a najor ethical battle with her – to put me onto AZT! There has been much written about AZT, and its history as a drug…which was not exclusively formulated for use with HIV. I am not a conspiracy theorist, but my thinking on HIV has always been a bit radical, and I, along with others, gravitate to the thinking that HIV and AIDS – despite our use of them as co-joined conditions – are separate illnesses, and HIV doesn’t necessarily lead to AIDS, but AIDS as an independent condition, brought about by the deterioration of the immune system. 

So, I had a diagnosis of HIV, with no related conditions that would have rated a diagnosis of AIDS. Even with a CD4 count on the decline, I still had good health – which admittedly may have been a lot better if I wasn’t knocking myself around by chain-smoking, and chronic abuse of alcohol – until…I started AZT! Many of those still around from that time will acknowledge that the decline in their health status is directly parallel to starting AZT. It wasn’t nicknamed “human Rat-Sac”for nothing. It’s negative affects from then up until now are also well documented. Damaged nerves, liver & kidney problems, the leaching of calcium from bones, and other neurological problems can all be traced back to AZT usage. I wish I had stuck by my guns, and refused to use it! There is no evidence that it saved one single life. I wouldn’t have refused trestment with other drugs that came along shortly after – I didn’t have a suicide wish – but I have no doubt that if I had refused AZT, some ongoing problems I have now would not have happened. I have an undisguised hate of Big Pharma, and its tactics, and lack of ethics where it comes to flogging a drug, and how they went about flogging this incredibly toxic drug to a desperate and unsuspecting demographic is truly horrifying – more on this shortly.

So, dispite heavy smoking, alcohol abuse, long work hours, and a shit diet…I made it to 1990, and with my health still okay. I won’t say I was unscathed, as the relentless list of those who died over this time, with many more to come, was physically, mentally, and emotionally destructive. I am by nature – and experience – a stoic in the face of death. I accept the reality, and inevitability of it – but any sign of the existance of God in this obliteration was missing – no just, loving God would ever allow this! My conversion to Atheism was complete. However, the combination of all that was happening was starting to wear me down, and encountering on-the-job bullying by an Area Manager brought about my decision to leave the workforce in 1993, and go onto disability, and get a housing subsidy. It was a forgone conclusion back then that this was the road to take because – after all – none of us would survive for all that long. At this stage, under the most positive of thinking, I gave myself two more years. 

I actually got to mid-1996 before it all started to come undone. I have written about the circumstances surrounding all the events that happened at this stage, so won’t repeat them here, but will give you an intimate insight into my thinking on my situation when I was finally admitted to Prince Henry Hospital in June, 1996. Given that I was already close to death when admitted, with a plethora of conditions that really should have killed me earlier, and that I really thought I would never leave there any other way than via a wooden box gives a good indication of how serious things were. It was in Mark’s Pavilion there that my stoicism, my acceptance of reality, possibly should have been tested, but instead gave me a calmness, an acceptance of my own potential death that I had pondered about prior to this. I was chronically ill, I was tired and in some respects, if other factors hadn’t intervened, death just seemed like such a pleasant, restful reality, leaving all that was happening behind, joining all those that I had loved and lost over the last 10 years. It was an acceptance of death that I wasn’t expecting to be quite so complete, so easy, so without fear. 

But I picked my moment, didn’t I! Big changes were happening in the treatment of AIDS, and shortly after being admitted, not going down the road of death, that I expected to go down, I walked – well, taxied – out of Prince Henry. I exited that taxi into a world that was in no way prepared for the living dead of HIV. If I ever thought my battles were behind me, I could not have been more wrong. The next couple of years – a long period of recuperation – were intense. There was a seemingly neverending period of specialists, doctors, clinics, pharmacy, counselling, peer support groups, drug compliance groups, massive – and I mean massive – amounts of medication, side effects, dental work, anxiety and panic attacks, and drug trials. It was a time where one wanted to initiate great change in the direction of ones life  – with no one there to assist. Change had to be fought for, had to be forced. All these community groups gathering money and prestige, sitting in meetings and forums, listening to the likes of me yelling about what we needed…and just turning deaf ears! It was a frusteating period where everything was years behind where it needed to be, and if you wanted to get on with your life without being trapped in the system, you had to do it under your own steam! So I did!

Some volunterr work, some work in the community sector, a flowering writing career that demanded and exposed…when I eas “allowed” as one didn’t question the system – led to a brief period of full-time work – that didn’t help my health at all – then onto university & TAFE to experience at last that which gad been denied me in my youth. This led to an interesting period of experiences, from spending 12 years talking about the HIV experience through the Posituve Speakers Bureau, to 15 years writing for “Taljabout” magazine and various other publications, starting several businesses – the most recent of which was destroyed by the GFC, to where I am now – happy, balanced, and reasonably fulfilled.

However, the last few years haven’t been without its challenges, and my mental tenacity, combined with a fairly laud-back approach to life, have seen me get through things without any apparent negativity. I do health care on my own terms these days, because if one just relies on mrdico’s, one would rattle like a pill bottle. I want less pills, not more! About 15 years ago, I halved my HIV medications. I have been waiting for some red-faced, fuming doctor to lecture me about it (has no one realised how rarely I get scripts?) but no one ever has. In the interim, my blood readings get better and better, with CD4s on the rise, and an ongoing undetectable viral load. Okay, I no longer smoke – gave that up in ‘96, drink bugger all, have turned vegetarian, and exercise daily, but nothing else. Big Pharma be fucked! Your drug resistance tests – a farce! You just don’t want people on old drugs! Over-prescribing? You bet you do…big time! I wouldn’t trust you as far as ai could kick you! 

Have I mentioned my shit vision? Whoops…overlooked that. Blind in one eye thanks to CMV (also covered in articles on my blog), and almost blind in the other. The most major decision over the last couple of years? Having my blind eye removed voluntarily, and replaced with a prosthetic. Does it stop me getting around? Not fucking likely! I might be slow, but I get there! I have a white cane (laughingly called my whacking stick), but rarely use it. I walk the dogs, do the shopping, get to gym! It might be done with a slight feeling of nervousness, but it gets done.

I don’t hold any grudges. What has been, has been! In a way, I thank my father for the rough younger years. It gave me a set of survival tools that have served ne well – and still do – throughout my life. Maybe I was born in an auspicious astrological period, or maybe my natural survival instincts are genetic, endowing me with stoicism and mental tenacity! Whatever it is, it has seen me through nicely! Life is to be enjoyed, and despite the occasional downs, it should be lived to its fullest. Just step outside that square, and do it on your own terms!

Tim Alderman (©2017)

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Bug Chasing – A HIV Phenomenon

Bug Chaser: A person who seeks to become infected with HIV.
Bug Chasing: Actively engaging in sexual activity with the goal of acquiring HIV.
Gift: HIV.
Gift Giver: A person who gives the gift of HIV to an HIV negative person.

In February 2003, Gregory A Freeman wrote an article on bug chasing for “Rolling Stone” magazine. It was a highly controversial article, and any Googling of the term “bug chasing” will bring up endless results from the piece. So I will not rehash old ground, especially 3-year-old ground. “Carlos”, the gay guy he uses as his interview subject is a self-obsessed, hedonistic guy who truly needs to get a life, as distinct from trying to destroy it, which he seems hell-bent on doing. The article appears, at least to me, to be a bit dodgy, both in its emphasis on the opinions of one extremist, and its ability to distort the statistics of experts. However, it does raise some interesting issues.

For starters, are we to make the assumption that “bug chasing” is going on? I dare say that if it was happening in 2003, it is happening now. If we admit that barebacking is a reality, then we have to admit also for “bug chasing”. In Andrew Barkers article “Bug Chasing” (1), he states that “Not surprisingly, the stigma and fringe quality of bug chasing is something that very few people would admit to doing. Of course, people were saying the same thing about bareback sex a few years ago, and now the term – and the activity itself to a lesser extent – has become a normalised, if not accepted, part of gay culture”.

So, if we accept that it is happening, we have to ask why! Not for one single moment, as a HIV+ man, could I ever condone the practice of bug chasing. However, having said that, when I read these articles I can sort of understand where these people were coming from. I was amongst the first people officially diagnosed with HIV in Sydney back in the early 80s. At that time, I had a HIV- partner, and though our relationship broke up shortly after this, we remained as flat mates further down the track for 10 years. These were the bad years in HIV, when just about everyone in our group of friends was infected, and many died. My flat mate remained negative through all this time, and still is. However, he stated to me on one occasion that he wished he was HIV+, as it would be easier for him to deal with the situation, and he would not always feel so “left-out”. Needless to say, he never turned into a bug chaser, but you can see the thinking behind it. Other underlying causes for people to take up this fetish – and I use the word loosely – are various forms of abuse like drug and alcohol use, poverty, lack of social supports, homophobia, low self-esteem, poor mental health, perceived invincibility and survivor guilt. In his article “Bug Chasing:
Why Some Men Want to Become HIV Positive” (2), Ashley Shaffier says “Those who seek HIV are called “bug chasers” and like most people they want to be involved in something that separates them from the rest of humanity. A few find something special by becoming infected with HIV – Not everyone has the virus, which makes those who are positive different. They are also not alone. “They see those living with HIV as a cohesive group that welcomes its new members and receives vast support” (Freeman). Freeman goes on to say that “The sense of being my brother’s keeper is never discussed in the gay community because we’ve gone to the extreme of saying gay men with HIV can do no wrong. They’re poor victims, and we can’t ever criticise them.” Another reasoning behind bug chasing is that some do it for the thrill of it, getting their kicks from the danger element, the “will I get it this time, or do I get to try again” attitude. “Many people engage in socially acceptable extreme sports for the rush, knowing that they’re risking their lives jumping from planes or free-climbing a rock face. And many do lose their lives. They are heralded by some as adventurous. One could argue that bug chasers are seeking a similar risky thrill” (Barker).

Another reasoning behind bug chasing is safe-sex fatigue some 24 years after AIDS first emerged in American cities. Many who have practiced safe sex for this long a period of time crave to have sex “the old fashioned way”, without the use of condoms, good old skin-to-skin sex. Normal sex is seen as being almost unattainable, something from the past that will never be revisited.

Whatever the reasoning behind it, it remains a very scary phenomenon. Some of the statements made by “Carlos” in the “Rolling Stone” article send a chill down your spine: “I know what the risks are, and I know that putting myself in this situation is like putting a gun to my head”; “When I have sex, I always like to make it special, a really good time, something nice and memorable in case that is the one that gives it to me”. Carlos feels that living with HIV will be a minor annoyance, that HIV is not such a big deal anymore. “It’s like living with diabetes. You take a few pills and get on with your life”. I think quite a few of us may have something to say about that. I also feel that there is a general lack of empathy for many HIV+ people, and a lack of acknowledgement that many of us were infected in the very early days of the epidemic when very little was known about it. I don’t like to use terminology like “innocently infected”, but for some of us, that is the fact. Given a greater scope of information, and an acknowledgement of just how deadly HIV was going to be would have been a wake-up call to many of us. The playing-down of information in the early days was a bad move, a disservice really, though that cannot be used as an excuse today. Given the amount of available information, and given the anecdotal stories of those who survived to now, one has to wonder how they come to the conclusion that bug chasing is a good thing.

Even the language itself is scary, the use of words like “gift”, “gift giver”, “bug chaser”, “conversion (from negative to positive)”,and “bug juice”. Doug Hitzel, a former bug chaser who is now HIV+ says, in Freeman’s article “Bug chasing sounds like a group of kindergartners running around chasing grasshoppers and butterflies…a beautiful thing. And gift giving? What the hell is that? I just wish the terms would put some real context into what’s going on. Why did I want to say that I was deliberately infecting myself? Because saying the word infect sounds bad and gross and germy. I wanted it to be sexualised”.

The internet itself has helped in the spread of bug chasing, with sites dedicated to it and its followers. I have to admit to not being able to find any to aid in my research, though I’m sure they are there, possibly linked into barebacking sites.

Freeman interviewed Dr Bob Cabaj, a public official working in San Francisco in psychiatry. Cabaj admitted that statistics were hard to come by, and he estimated that at least twenty-five percent of all newly infected gay men fall into the bug chasing category. Naturally, “Rolling Stone” took this figure literally, and on-board, and calculated that of the then 40,000 new infections in the United States every year, around 10,000 were attributable to the more liberal definition of bug chasing. This figure caused such a huge furore that Cabaj denied giving Freeman any specific percentages, and he wrote a letter to “Rolling Stone” asking for a clarification to be printed, which then stated that only a “certain percentage” of new HIV infections may be deliberate – but that this figure was “probably more than people wanted to think”. I think common sense would say that the figure wasn’t accurate, despite a lack of actual data on the subject.

Naturally, the religious right then had to get into the picture – no show without Punch – and have their two cents worth. Of course, they didn’t come up with anything original. The Rev. Louis B Sheldon, Chairman of the “Traditional Values Coalition” stated on traditionalvalues.org that “With bug chasing, barebacking and Russian Roulette parties (3) was part of the homosexual lifestyle (sic), it is not surprising that HIV infections are on the rise. And with sexually depraved individuals like Keith Folger and Vince Gaither (4) overseeing how Centre of Disease Control AIDS dollars are being spent, it is unlikely that this epidemic will decline any time soon…”. On altermedia.info David Mullenax informs us that “My wife and I discussed the issue of “bug chasing” at length over freshly brewed coffee and Italian biscotti. Each of us had difficulty in describing exactly how we felt about such insanity and madness…Homosexuality would not be a trendy alternative if it weren’t for a Jewish-controlled media that glamorises and insists that gays are the same as everybody else. To be gay is to be exotic, and thus revered. The many stories of death, some by infection and others by suicide, are never told on MTV…As the media promotes homosexuality as a hip and fashionable lifestyle, the anger is reserved for them….This is why gays should be pitied, and the anger reserved for the alien minority who run the majority of our news and entertainment outlets…Recruitment and outreach programs prey on the weaknesses of many of our young ones…Without (that) mental preparation, the gay lifestyle would be rejected by many vibrant and innocent White (sic) children who have become victims to this scheming…” etc etc, I’m sure you get the message.

A video was made of the phenomenon, called “The Gift”, and has been shown over here at one of the Queer film fests. In it, a young redheaded San Franciscan man tells the tale of how, at 19 he set out to become infected with HIV. “I thought being positive was a positive thing”, he says. “I thought I was just going to have a lot of promiscuous, unsafe sex. I didn’t know I was going to change (to HIV+) so fast. No one told me”.

In January this year, British editor Mary Wakefield, writing in the Sunday telegraph (5) describes her shock at discovering the underworld of bug chasing among homosexual males. Her investigation was fuelled by the funeral of a young man who recently died after deliberately becoming infected with HIV. The young man had invited his HIV+ boyfriend to live with him, and though being aware of the dangers of HIV, soon developed the disease and brain cancer. His HIV+ friend had also infected a previous partner and that man had died not long ago. After reading the article in “Rolling Stone”, Wakefield stated that “I remember being skeptical at the time – it seemed too creepy. After tens of millions have died of AIDS worldwide, after billions spent on medications, how could anyone seek it out?” This in turn led her to seek out the bug chasing underground on the internet. She observed “…there was a darker side, the romanticising of AIDS itself. Google led me underground, to gay clubbers with ‘HIV Neg’ tattooed on their biceps as an invitation to others to infect them, to online chats about HIV-spreading sex parties, talk of ‘conceiving’ the virus like a pregnancy and the intense intimacy of infecting a partner. “It offers a kind of permanent partnership, a connection outside time” stated the editor of a gay newspaper.”

So, it would seem that we cannot bury our heads in the sand and pretend that bug chasing doesn’t happen. I would like to think it was not widely practiced in Australia, but if time has proved anything, if it is happening on the gay/HIV scene in America, it is happening here. This article was prompted by an article I received last week from queerplanet.com.au, by Charlie Parker. He states in his article “Bug Parties” that “The Russian Roulette bug party. This is where a group of gay men have ‘no condoms allowed’, unprotected sex and no one’s HIV status is revealed. This type of party is treated like a game by the participants. The guy who becomes infected is the winner.”

I felt that if he thought it still relevant, then perhaps we needed to revisit the subject, rather than pretending it doesn’t exist, then in twelve months time or so, it will suddenly raise it’s ugly head again, possibly due to someone being infected this way, or someone dying, then with people saying “Oh, I always knew that was going on”.

Perhaps I should leave the last word to Carlos. As sad and pathetic as he appears, you can’t help but hope he wakes up to himself. When asked what would he do if he found out he was HIV+, he says he would move on to become a gift giver. “If I know that he’s negative and I’m fucking him, it sort of gets me off. I’m murdering him in a sense, killing him slowly, and that’s sort of, as sick as it sounds, exciting to me.”

I have goose bumps crawling up my arms.

Tim Alderman
Copyright 2007

References

1 Living + Magazine, November/December 2002
2 AssociatedContent.com
3 AUTHOR’S NOTE parties specifically intended to assist people get infected with HIV
4 AUTHOR’S NOTE San Francisco AIDS activists
5 15/1/2006

FOOTNOTEs:

  • CNN interview on Bug Chasing movie, July 2007 https://youtu.be/Bo_n0IPsC7g
  • Article in Sydney Morning Herald April 21, 2007 ‘HIV chasing’ a trend in gay communityApril 21, 2007 – 6:09AMA Melbourne man who fantasised about contracting HIV before actually being infected by the virus has spoken of a gay subculture in which infection is seen as “desirable”.The 20-year-old man, who does not want to be named, told Fairfax newspapers both complacency about the virus and the wish to have unprotected sex with an HIV-positive man he was in love with led him to become infected.”I wasn’t actively seeking it, but maybe there were parts of me, dark corners, that wanted it, that were thinking, ‘Let’s just do it and get it over and done with and then it won’t be an issue’,” he said.The young professional is the first to speak out about “bug chasing”, a behaviour in the gay community in which men seek to become infected with HIV.The phenomenon was highlighted at the recent committal hearing for Melbourne man Michael Neal. Mr Neal was accused of deliberately spreading the virus.A HIV-positive man said in court that “bug chasing” was “a big thing out there” and that he had been pursued on the internet by a man wanting the bug.”I just kept reminding him that it was not glamorous,” a witness told the court.Dawn Wilcock, of Positive Women Victoria, a support group for HIV-positive women, said the reaction showed a need for Melbourne’s gay community leaders to stop dismissing claims of the subculture as an urban myth.”There’s a lot of defensive and protective behaviour going on that is not addressing the potential repercussions of this,” Ms Wilcock said.”It’s a real problem. We know that 75 per cent of Victorian women infected with HIV are contracting the virus from long-term male partners, so the health campaigns targeting gay men need to target others in the community who would never publicly identify themselves as being gay, too.”The HIV-positive man said some men going to group-sex parties with HIV-positive men might want to “join the club” and have unprotected sex more freely.”I have had an extremely intoxicated person claim that he wanted it once,” he said. “I fobbed him off and he never came asking for it again.”
  • © 2007 AAPArticle in The Age 21 July 2007 “Gay subculture in ‘bug chase’ sees HIV as desirable Julia Medew and Karen Kissane

April 21, 2007
Dance with death
A MELBOURNE man who fantasised about catching HIV before he contracted the virus has spoken out about a gay subculture in which infection is seen as desirable.The young professional, who does not want to be named, told The Age a combination of complacency about the virus and the wish to have unprotected sex with an HIV-positive man he loved led him to become infected.”I wasn’t actively seeking it, but maybe there were parts of me, dark corners, that wanted it, that were thinking, ‘Let’s just do it and get it over and done with and then it won’t be an issue’,” said the man, who is his 20s.He is the first to speak publicly about taking part in behaviour that is known in the gay community as “bug chasing” — seeking to become infected with HIV. The phenomenon was described by witnesses at the recent committal hearing for Melbourne man Michael Neal, who was accused of deliberately spreading the virus.One HIV-positive man told the hearing “bug chasing” was “a big thing out there” and that he had been pursued on the internet by a man who wanted to catch the virus from him.”I just kept reminding him that it was not glamorous,” the witness told the court.Dawn Wilcock, the director of Positive Women Victoria, a support and lobby group for HIV-positive women, said yesterday that such accounts confirmed the need for leaders of Melbourne’s gay community to stop dismissing claims of the subculture as an urban myth.”There’s a lot of defensive and protective behaviour going on that is not addressing the potential repercussions of this,” Ms Wilcock said.Her organisation was extremely concerned about other kinds of HIV recklessness, including the behaviour of heterosexual men who have sex with other men and do not tell the women in their lives. Such men do not think of themselves as gay or even as bisexual.”It’s a real problem. We know that 75 per cent of Victorian women infected with HIV are contracting the virus from long-term male partners, so the health campaigns targeting gay men need to target others in the community who would never publicly identify themselves as being gay, too,” she said.The HIV-positive man said that some negative men who attended group-sex parties with positive men might want to “join the club” so they could have unprotected sex more freely. His own intermittent desire to catch the virus was more about wanting intimacy with his partner than a “tribal membership or a rites of passage sort of thing”.life for HIV-positive people was now reasonably good, and that contracting the virus “wouldn’t be as catastrophic as it might have been 10 years ago”.While it was difficult to tell how many men who fantasised about the virus actually tried to get it, he said, some men certainly advertised for it on the internet and asked for it during sexual encounters.”I have had an extremely intoxicated person claim that he wanted it once,” he said. “I fobbed him off and he never came asking for it again.”Many gay community leaders and spokespeople for HIV and AIDS lobby groups last month dismissed claims of “bug chasing” and “conversion parties” — group-sex parties where positive men have unprotected sex with negative men to give them the virus — after the concepts were aired during Neal’s court case.Mike Kennedy, the executive director of the Victorian AIDS Council — the peak body representing gay men living with HIV and AIDS — this week again told The Age it was an urban myth.”You will find one of everything you look for,” Mr Kennedy said. “But the notion that this is a big scene, absolutely not. The language of ‘gift givers’, ‘bug chasers’ and ‘conversion parties’ — it’s something that’s come off the internet.”An HIV worker who did not want to be named said there was a party line offered to the outside world on the issue of reckless HIV behaviour in Melbourne’s gay community.”The party line is that it’s not happening — ‘What? Us?’ ” the worker said.The worker agreed with Ms Wilcock that heterosexual men who had illicit sex with gays were the conduit for the virus into the wider community. The worker said that when such men were diagnosed with the virus, they rarely started using condoms with their long-term female partners, “because she’s going to say, ‘What’s this?’ “Ms Wilcock said that gay male organisations were not doing enough to confront this and the “bug-chasing” issue

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Getting On With It! A 33-Year Retrospective of Life with HIV/AIDS

The challenge of writing about 33 years of living with HIV/AIDS isn’t so much to write tomes about what actually was witnessed over that period. That is easy to do, and I could ramble on forever about it. The challenge lies in being objective and succinct, to tone down the schmaltz and sentimentality and cut to the chase. Not as easy as one may think, as these were the most challenging, relentlessly ruthless and heartbreaking period of my life. But if survival is the gauge of ones strength and tenacity, then I have come out at this end of it with flying colours. Indeed, the cup is half full!

So what was it really like in 1982 to be reading snippets in our local gay press about this mysterious illness in The States that seemed to be targeting gay men who frequented the saunas, and quickly killing 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. Soon the snippets were to become columns, then pages as the mysterious and deadly illness leapt from the shores of America and found its way here.

Our response was mixed. The first recorded case of HIV at home was 1982, and the first death in 1983. 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 I had heard about), the advocates of hate who demanded quarantine for all infected persons, and those who either quietly or vocally wished that we would all die or just go away. Not that easy folks! Thankfully, common sense 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, Community Support Network (CSN) and Ankali. Without these organisations life would have been grim for those infected. In 1985 testing was introduced. It was a bit of a strange affair in the early days. Due to hysteria and discrimination no one wanted their personal details on a database, so you chose a name, and Albion Street Centre issued you with a number that then became your ID. You had a blood test, and waited for two weeks – talk about high anxiety – to get your result. I had a mystery illness in 1982, a flu-type illness that wasn’t the flu, and 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, and it was time to PARTY!!! What else could you do? However there were horror stories. 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.

Meanwhile, the Australian nightmare was well and truly hitting home. My first close friend, Andrew Todd, died in 1986. At that time there was no dedicated AIDS ward, and Andrew was shifted between wards as beds were needed for other cases. He died on Boxing Day in A&E at St, Vincent’s. I had the sad duty of ringing all my friends at a party to tell them the sad news. Party pooper recognition acknowledged! Ward 17 at St Vincent’s eventually became the dedicated AIDS ward, and for the next 10 years was never empty. Palliative care was through The Sacred Heart Hospice. Hospitals such as Westmead hit the headlines for all the wrong reasons; full contamination clothing for those working with HIV people, rooms not being cleaned, meals left outside doors. Even the poor old mosquito copped a hiding as a means of contamination, along with toothbrushes, glasses, cutlery and crockery. An advertising campaign featuring the Grim Reaper bowling down poor people created an apocalyptic vision of HIV that scared the life out of everyone. It was quickly withdrawn. In the interim, my 2 years became 4, which became 6 followed by 8. My life became a haze of alcohol and cigarettes, not shared alone.

In the 80’s I held a lot of parties with anywhere from 40- 60 friends attending. By 1996, if I had tried to hold a party I would have been lucky to have dug up 10 friends to attend. In the blink of an eye my social circle was effectively wiped off the face of the earth. Hospitals, hospices, funerals and wakes became the dreaded regular events. It was death on a relentless and unforgiving scale. The Quilt Project became the focus of our sorrow, and it’s regular unfoldings and name readings were tear-filled times of remembrance and reminiscence, along with the yearly Candlelight Rally. I attended until I became so empty that I could no longer bear it. I submitted my names but no longer attended. In the early 90’s four friends died close together – two from AIDS, one a heart attack and one cancer. This was a particularly heavy blow as two of these friends had been regular “gutter drag” partners, and that part of my life effectively ended. In a perverse way, it seemed strange that the Big A wasn’t the only thing stalking our lives.

Despite its reputation for being human Ratsac (the Concorde Study in France named it such, after conducting an unethical trial; turns out they were correct!) I started taking AZT when my CD4 count started to take a dive. Hard work, long hours, heavy drinking, chain smoking, a shit diet and emotional turmoil didn’t help. Pub culture became lifestyle. Did several drug trials – D4T, which was sort of successful, though the same class of drug as AZT. Also p24 VLP (Very Light Protein) which proposed that stimulating the p24 antigen may help control HIV. Total waste of my time. It did nothing. We started alternating drugs – 6 months on AZT, 6 on D4T, 6 on DDI, 6 on DDC. Perversely it seemed to keep the wolf from the door. Dosage was huge. Everyone on it ended up with kidney problems and peripheral neuropathy. Prophylactics added to the drug burden. In the meantime there was no HIV dental service and our teeth rotted or fell out due to bouts of candida. I left work in 1993 after being seriously knocked around by viral pneumonia which should have killed me…but didn’t. I was shuffled onto the pension, and given rent subsidised housing by DOH. The subsidy seemed like a good idea at the time. After all, weren’t we all eventually going to be killed by the Big H, so no one would be on it for that long? Famous last words! My alcohol consumption and chain smoking increased, if that was possible! Was losing weight at an alarming rate, and naturally no one noticed because I took to wearing baggy clothes to disguise it. Nothing quite like being delusional. Moved from Darlinghurst to Bondi. Nothing like moving away from the scene to help your health…not! Collapsed in the street, and admitted to St Vincent’s not with PCP as suspected but a collapsed lung. Two weeks later and a change of female GP’s saw me back in the doctor’s rooms while she read my hospital discharge report. Had they tested me for CMV retinitis? No! Was I having trouble with my vision? Yes, but I do wear glasses. Guess what? We’re sending you for a little holiday at Prince Henry Hospital (now closed). I was a little bit sick. Chronic CMV retinitis, chronic candida, chronic anemia, had 10 CD4 cells and weighed 48 kgs. Mmm, prognosis was not good. Well, it had been a good life. I was certainly joining a band of party people. But no! Life hadn’t finished with me yet. Protease Inhibitors had come along at an auspicious time, and within a fortnight I had been stolen from the arms of death. Mind you, that fortnight had been no picnic. Ganciclovir injections into the eye, Deca-Durabolin injections to help put weight back on, blood transfusions, and enough finger prick blood readings to last me the rest of my life. And the problems had just started for this return-to-lifer. Not dying when you are supposed to really fucks up your head space.

So started the next round of therapies. Peer Support groups; counselors; Caleo (a treatment management group who help you maintain the impetus to take the billion pills a day we were taking); clinics; dental care (now up and running); volunteer work (to keep one sane). What started out as volunteer work at the then PLWHA (NSW) Inc (now Positive Life) turned into paid employment as a research assistant. I started writing for “Talkabout” magazine, joined the Positive Speakers. Bureau, and learnt to use a computer. A couple of stints back in full-time employment made me realise that big changes needed to be made with my life. By this time my health was pretty well back together. A couple of nights out pushed home just how few people I knew, however did lead to meeting my current (now ex) partner. A brief encounter with Indinivir sludge in my kidneys (which involved having a stent inserted then removed) also made me aware that for HIV+ people the unexpected can happen at any time. Yet another change of doctor. Self-empowerment had become an important issue, and I wanted a say in my health management, as distinct from being dictated to. Big changes were about to happen.

In 2000 David and I did a big (and expensive) holiday to the Red Centre. It was an amazing experience. Before leaving Sydney I had applied to the University of Technology in Sydney to do my degree in writing. Shortly after arriving back home I was informed that I had been accepted. Ah, the advantages of mature age AND disability. So spent three years doing my Graduate Certificate in Writing, was office- bearer for the Special Needs Collective…in fact I WAS the Special Needs Collective, and discovered I hated having to deal with the moronic “radicals” who called themselves the Student Association and did nothing except rant and rave, and waste student money. I was glad to leave uni. Towards the end of 2004 I decided to get my chef’s credentials from East Sydney TAFE, and crammed a 12-month course into 6 months. As much as I hated uni, I really loved TAFE and found it more grassroots and honest. David and I started Alderman Catering, a top-end catering business though it only lasted about 2 years as I found it very exhausting. I then sort of returned to my retail roots by opening a web site called Alderman Providore to sell Australian made gourmet grocery items. The site proved successful, and within 4 years I was opening my second site, this time specialising in tea, coffee and chocolate products. I got involved in a trial using Goat’s Serum to treat HIV, but again another waste of time. I did manage to get a skin rash from it, and managed to score a $1,000 for participating. In late 2009 the GFC hit, and online shopping took a major hit. After a disastrous Christmas that left me severely out if pocket, I decided to sell the business and put it behind me.

More eye problems followed, this time involving my blind eye. Back to the regular rounds at the Sydney Eye Hospital, and an injection of Avastin into the blind eye to stop it creating new blood supplies to an eye that couldn’t see. By this time, the interior of the bad eye was collapsing, and it took on an unnatural colour. Before this I hadn’t looked blind. Now I did!

The next step, which sort of brings us up to date, was a major move. Plans to move north had been on the agenda for 10 years – in 2011 it finally happened, though we did jump the border which wasn’t in the original plan. Recently my retina detached in my one seeing eye…or rather was pushed off by all the scar tissue present from my original CMV infection. An emergency operation to scrape down the scar tissue, and replace the retina and fluid (called a vitrectomy) has seen my sight degenerate even further and I am now the proud owner of a white cane curtesy of Guide Dogs Queensland. It has become obvious that our two Jack Russell’s are not, despite their best of intentions, good seeing-eye dogs. I can see, though very poorly. A lot of life is a blur these days.

However, I am not going to complain. I have always enjoyed a challenge, and this presents yet another one. I gave up smoking 15 years ago, and drink only lightly and socially these days. My partner and I both adopted a healthy diet and exercise program 8 years ago when we both started getting unattractively over-weight and inactive. We have both turned our lives around by adopting this course of action. In 2013, I obtained my Certificate III in Fitness from Southbank TAFE. It proved both a challenge for me, and for the TAFE, as they had never had a student with severe visual impairment do the course before. And finally, at the beginning if this year, I had my troublesome blind eye removed. I now have a very life-like prosthetic that I dan do drunken party tricks with.

33 years eh! OMG where have those years gone? Despite all the discrimination, stress, anxiety, illness, deaths, survivor guilt and despair, there have been moments of great introspection, illumination, strength and enlightenment. That over-used word “empowerment” springs to mind and that is perhaps the one word that sums all those years up. Victim? No way! Survivor? Not in my words! And I have never been one to wallow in self pity. You just need to grab life by the balls, and get on with it. I trust that is what I have done.

Tim Alderman

Copyright 2012, 2015

AIDS Quilt unfolding in Government Pavilion, Sydney Showground circa 1988. L-R Peter McCarthy, Peter Gilmore, Bevan, Steve Thompson, Tim Alderman
AIDS Quilt unfolding in Government Pavilion, Sydney Showground circa 1988. L-R Peter McCarthy, Peter Gilmore, Bevan, Steve Thompson, Tim Alderman