“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)
Anyone who was around in the early 80s will remember the media’s hysterical response to AIDS and the ease with which it attributed it to gay men. It wasn’t labelled ‘the gay plague’ or ‘gay bug’ out of sympathy for us.
So it was unsurprising that, in these hostile times, gay community organisations were doing everything they could to put across a true picture of the emerging crisis. As attacks on gay men increased dramatically in light of perceptions that we had ’caused’ AIDS, an intelligent and cautious approach was the order of the day.
Or, alternatively, you could get yourself into the headlines and onto TV by claiming to be the leader of a non-existent gay organisation and making outrageous claims. Step forward Paul Dexter, self-proclaimed head of ‘the Gay Army’ in Sydney, an organisation that he claimed “represents the gay community more than others”.
Gay Army Gay ConspiracyIn May 1983 he appeared as ‘the gay community spokesperson’ on a Channel 9 report on AIDS. His credentials were never provided nor was it explained why his views were more important that an organisation like, say, the Gay Counselling Service. Indeed, no one even bothered to ask for evidence that an organisation with the ridiculous name of ‘The Gay Army’ even existed. Nonetheless, he was up there with leading AIDS doctors and commentators like Larry Kramer.
In June 1983 the Sydney Morning Herald – a newspaper that really should have known a lot better – quoted his claim that “left-wing elements” were responsible for the outcry against AIDS publicity. They didn’t even bother to explain just what that ridiculous statement actually meant.
And yet, in spite of the obvious absurdity of this man, his fictitious organisation and his groundless claims, the Herald turned to him again the following year. Under the headline Gay group slates AIDS statement, Dexter – now “official spokesman for the Gay Army” – declared that AIDS was far more infectious than health experts claimed. “The advertisement suggests that AIDS cannot be spread by sneezing, coughing, breathing or mosquitoes but according to Mr Dexter, medical experts can give no scientific assurance of this.”
Whilst Dexter was quick to challenge medical experts on their authority, he made no attempt to justify his own. And, yet again, no one asked him for any, nor evidence that his Gay Army actually existed.
But, yet again, this was to be a case of not letting the facts get in the way of a good story. Dexter, it seemed, was happy to say anything to stay in the spotlight and the media were more than happy to report it. Take, for example, another headline Call for homosexual to spot gay clients, in which the “spokesman for the Gay Army” argued that “A homosexual should be behind the counter of the Red Cross Bank to spot any gay blood donors…”
The entire article was farcical as Dexter claimed that he had seen a gay man give blood while he himself was in the Blood Bank (“Of course, I didn’t give blood…”). Dexter knew he was homosexual because “He had effeminate gestures, was wearing a bracelet and his key ring was in his right hand pocket – which is a sign of being gay.”
His statements would be hysterically funny is they didn’t have such serious consequences. After stating, “Of course, you wouldn’t be able to pick out every gay but a homosexual would have a far better chance”, he went on to reinforce the conspiracy theory that HIV+ gay men were deliberately infecting the blood supplies: “A homosexual behind the counter would also deter any resentful homosexuals from giving blood.”
It’s hard to say who is the most irresponsible here; Dexter for his blind self-promotion or the media for carrying stories about ‘conspiracies’ and health experts concealing the true facts when they didn’t even bother to do the most basic check on Dexter’s own credentials. When it comes down to it, they both share a huge amount of shame and blame.
In 1985, Channel 10 did a report titled “The Truth About AIDS in Australia” (https://youtu.be/UKiiY5JUUvU). The witch-hunt was now in full swing. Popular 2GB talj-back host Mike Carlton, joined others in suggesting that gays were deliberately donating contaminated blood out of spite! The 10 report investigated, and lent support to, accusations that gay men were deligerately spreading AIDS! The charge was made in an anonymous letter sent to a New South Wales parliamentary committee inquiring into prostitution. The author suggested that heterosexuals who had been infected vua blood transfusions were innocent victims of an “evil conspiracy” in which homosexual activists deliberately infected blood supplies, so that their calls for government funding to fund AIDS would be acred on. Furtgermore, gays were knowingly infecting other men in their community to “get even” with old boyfriends because “the gay community is notoriously bitchy” .
The letters author, a “King’s Cross Homosexual” was also angry that a “fringe group of radical homosexuals” – the NSW AIDS Action Committee led by Sydney academic Lex Watson – was claiming to speak on gehalf of the entire gay community. “They are establishing paper empires to get government funds and couldn’t care a stuff about their gay brothers and sisters” he wrote. While the Network 10 program acknowledged that it was impossible to prove these claims, it remarkably stated that it could ” prove that the AIDS blood plan was seriiysly considered” because homosexuals in America gad contemplated such an act of political terrorism, and the “intimate links across the Pacific ensured the American plan became pillow talk down under”. The report did not reveal how most American gay men regarded this terrorist actio, nor explain why Australian homosexuals would contemplate the plan when the Commonwealth and the State governments were already responding to AIDS with more urgency than politicians in the Unired States had shown during the first three years of the AIDS epidemic.
The claims made in the letter were extraordinarily similar submissions nade to the mainstream and gay press by Paul Dexter, self-proclaimed leader of the Gay Army, which, as far as other gay men were concerned, consisted only of himself! Those who knew of his antagonism towards the AIDS Action Committee, and those who had begun to view the program cynically, would not have been surprised to see Dexter soon introduced as a “spokeman for the gay community” to confirm that a fringe group of radical gays were indeed spreading AIDS. As an “unbiased” member of the gay community, he supposedly served the purpose of demonstrating that homophobia was not the basis for the program’s investigation into the “evil conspiracy”. To many Darlinghurst gay men in the audience, hiwever, his presence only confirmed their doubts about the authenticity of the letter.
It is interesting yo note that when a nan considered by Jenny Ross to be an inappropriate representative of the hemophilia community was interviewed by another television station, his comments were omitted from the program that went to air at the request of the Harmpholia Foundation. Despite the complaints of the AIDS Action Committee that Paul Dexter did not represent the general views of homosexual community, and that he was predisposed to making spiteful comments about some of its members, it was extended no such curtesy. Rather, Network Ten neglected to examine Dexter’s personal & political motives for accusing radical homosexuals of donating blood infused with HIV , just as the press had failed to challenge the factual basis of the doctor’s claims. Presumable, the print and electronic media would have been more thorough in their search and selection of their witnesses if they were to accuse National Party politicians or religious leaders into spiteful murder. Moreover, one can be certain that a public outcry would immediately follow if such accusations were made.
Paul Dexter was a small blip in the early days of HIV in Australia, but by setting himself as a self-appointed spokesman on the epidemic, and managing to gain as much exposure as he did, he created a lot of controversy, misinformation, and bias which in turn created its own problems. It is now difficult to even find any information on him…though like all bad history, he should not be forgotten!
Tim Alderman (2017)
- Gay in the 80s http://www.gayinthe80s.com/2014/07/1983-gay-politics-sydneys-mysterious-and-dangerous-gay-army/
Learning to Trusr: Australian Responses to AIDS – Google Books https://books.google.com.au/books?id=1trSx2c_pEYC&pg=PA62&lpg=PA62&dq=paul+dexter+%26+the+gay+army&source=bl&ots=kyGf7ZjoJ9&sig=HaTIJYsl4eDZAyjNRCxgzB-QB7I&hl=en&sa=X&ved=0ahUKEwjTs7TsnrLVAhUPNpQKHUuaAhIQ6AEIIDAB#v=onepage&q=paul%20dexter%20%26%20the%20gay%20army&f=false
Originally published in “Talkabout”, September 1999.
In May 1999 I had one of the scariest HIV-related experiences I have had since my encounters with CMV in 1996! I literally, for a brief period of time, lost control of my feet. Already having problems with peripheral neuropathy, this just added to the incertainty and conjecture surrounding the causes. Initially, I couldn’t walk a steaight line up a footpath, but staggered from left to right with no control whatsoever. It got so severe that I eventually had to resort to using a walking stick to get around! Cassie Workman was at a loss! Thyroid, cortisol, B12, folate, a CT scan, Gallium scan all done to negative results. It took a further MRI and lumbar puncture test to reveal that at some stage during my transition from one drug combination to another, the virus had crossed the blood/brain barrier and got into my brain! By the time it was discovered, the new combination had kicked in, and problem resolved itself. It was a scare I could have done without, as the symptoms were also indicative of some very serious – and deadly – brain disorders! HIV in those days was good at throwing curve balls!
The moral to this story is to never brag! I had been telling a work colleague of a rise in my weight to over 70 kgs, a record weight for me, and a record I was damn proud of. Within a few days of this, however, chaos had set in, and the treasured weight was going to have to be fought for.
This bloody virus just never leaves you alone! I stare at the magnetic scan images in my hand, and admire just how sneaky it can be. The pale grey ‘clouds’ that drift over the image of my brain are evidence of its brief visitation, the disorientation and fear it caused, all too recent to be forgotten.
It started so simply. As I have mentioned in other articles, I returned to work just 18 months ago. My health, including T-cells and viral load, had been excellent for this period of time. I guess I may have become a bit complacent, thinking good health was something I could now take for granted. As has also been mentioned in other articles, I have severe peripheral neuropathy in my feet. It is slowly progressing, and is about half way along my feet. When the staggering started, my immediate thought was that it was just another phase in the progression of the PN. I could not walk a straight line, and when walking up the street, staggered quite visibly from one side of the footpath to the other. At the time this was happening, I mentioned to people that I wasn’t feeling ‘right’, I couldn’t put a finger on what it was, it was just a general feeling that things weren’t as they are supposed to be. I was going through some changes to my combination therapy also at this time, and thought that may have had something to do with it. Well, it did! But not in the way I expected.
The next phase of the illness consisted of a feeling of chronic lethargy. It became an effort not just to get up in the morning, but to get dressed, and to motivate myself to get up the street to get to work. I lost my appetite, and libido. Then I started to drift off to sleep on the bus in the morning, this symptom extending to falling asleep at home as soon as I sat in front of the TV, both these things not being normal for me. It wasn’t until I nodded off to sleep in front of the computer at work that I realised something was going seriously wrong.
A series of tests was started. I had iron, folate, and B12 tests. They were all normal. I went to Albion St Clinic and had a test for a disease called Addisons (the symptoms for this disease were identical to what I had), and it also came back negative. I went and had Gallium and CT scans, and nothing showed up. By this stage, my walking had deteriorated to such an extent that I was relying on a walking stick to get around. It was thought I may have had bio-chemical depression brought about by returning to work and suddenly finding myself with the prospect of ongoing life, so I was, reluctantly, prescribed anti-depressants. My weight dropped to 58 kgs, and I literally had no appetite at all. My partner and I had up until then a very healthy sex life, and this dropped away (quite rapidly) to nothing. He started to get very concerned, though managing to hide it. Going out anywhere with me, especially with the walking stick, was a long ordeal. The only advantage to it was that I always got a seat on the bus.
My doctor eventually ran out of possible causes for my condition, and made an appointment for me to see a neurologist at St. Vincent’s Clinic. He put me through a long consultation, with a series of tests to check reflexes and responsiveness. During the consult, he asked me to do a number of simple walking steps like heel-to-toe, and I was unable to do them without losing my balance. His diagnosis wasn’t hopeful, telling me that it could have been one of several very nasty diseases, including one called PML (Progressive Multifocal Leukoencephalopathy). I don’t actually know what it is, but the look on his face said all that had to be said. There was a possibility of undetected Syphilis infection from years ago, but a test soon cancelled that option out. He wanted me to have a lumbar puncture, but rang me the next day to say I was to have a magnetic scan first, just to see if anything turned up. These scans are more thorough than CT scans, and more likely to show up problems.
If you are claustrophobic, don’t even consider these scans. You have to stick your whole head inside this small cylinder, with ear- plugs in, and foam wedges to hold you steady. The machine itself makes a noise like a pneumatic drill. I took one look at it, and said ‘no way unless you knock me out’. They did!
As mysteriously as all this started, it began to reverse. I returned to the neurologist a week and a half later, he being as surprised as I was to see I was walking again. He had received the scans, and they showed evidence of HIV infection on the brain, quite visible when viewing them.
To say this frightened the shit out of me is an under-statement. I have always been very good with my treatments, and consider myself about 95% compliant, which is pretty good, considering how long I have been popping pills and, at times, the quantity I have had to take. Somehow, the virus had used an opportune moment between combinations to cross the blood/brain barrier. Everyone on combinations take at least one drug to prevent this happening, so it shows you how persistent the virus can be. It doesn’t so much hide as sneak around, looking for opportunities to invade various parts of us that are not so well protected. If I ever thought there was an argument not to take drug holidays, this is it! What damage it could have done to my brain if left unchecked horrifies me, especially the prospect of Dementia. They seem to think that the anti-virals brought it under control, and for my sake I would like to think the same.i
A month after all this and I am back to normal – appetite, energy levels, libido, the whole works. I hope to return to work within the next month. It looks as though I will still have to undergo a lumbar puncture (they’ll have to knock me out for this one, too!), as they want to know what drugs I have become resistant to. Over the period of the illness my viral load did a rise, the first in almost two years. The frightening part is that within one week, it rose from 3000 to 19000. It is now back under control.
I have lived a long time with this virus Almost all my time as an active gay man has been spent as HIV+. I have put up with, and survived, a number of HIV related illnesses. I intend at this time to live a lot longer with it. If drugs and hope are the ways and means I will have to use to follow this intention through, then that is just what I will do.
Tim Alderman ©2000 (Revised 2017)
This article, recently resurrected, was originally written in 2012, as I sat in the loungeroom at Ashgrove (Brisbane) after a panic attack drove me from my bed at 5am. I have revised & reedited the piece to cover the period between then and now. The original was published in “Talkabout” in 2012.
I shouldn’t actually be alive! And if it had been any time other than when it was – 1996 – that would have been the outcome. However, timing and medicine are everything, or so it seemed in that period of huge leaps in HIV care and treatment. As a 42-year-old HIV+ gay man who was admitted to Prince Henry Hospital (now closed) at La Perouse in Sydney, weighing in at 48kg, with chronic CMV retinitis, chronic anemia, chronic candida and 10 CD4’s I guess you could say I wasn’t well, and the truth be known my thoughts were more attuned to the after-life than being given a future. So, blood transfusions happened, heavy dosing of drugs happened (curtesy of my current regimen) and gancyclovir injections into the eyes happened – but perhaps most importantl…the new protease inhibitors happened and in combination with my other drugs created miracles. My severely depleted CD4 count did a small, slow rise, and my 100,000 viral load slowlt dropped to 10,000. Though still very weak and sick, I walked out of Prince Henry a couple of weeks later, then spent the next 18 months getting my health – physical & mental – back on track.
At this stage I could crap on endlessly about all the strategies that I used, the anabolic steroid therapy to treat Wasting Syndrome, the fears and uncertainties, the sheer strength of will needed to reconnect with life, not to mention the huge mental shift that drove my life off into uncharted territory and resulted in the man I am today. Blah, blah, blah!So instead of boring you with all that, I want to concentrate on the one aspect of all this that is still impacting my life today – the CMV retinitis.
Say CMV to most people these days and you will just get a blank look. It is an insidious disease, and one that was greatly feared in the era of rampaging AIDS infections. It is a virus that pretty well everyone has present in their body, but is usually only activated in immune-suppressed people. In its retinitis form it attacks the retina, and can spread to the macula by slowly destroying the cells. It is painless, though can be evidenced by a greying of vision and the appearance of floaters. If untreated it will eventually lead to blindness. By the time it was detected in my eyes a lot of damage had already been done, and I was aggressively treated with intraocular injections of gancyclovir…yes, that does mean injections directly into the eye. What fun! At the time this was going on, they were looking for guinea pigs to trial gancyclovir implants – called Vitrasert implants – in each eye. I volunteered, had two operations to insert them, then found that the 4% chance of developing cataracts turned out to be 100%, so back for another two operations to remove them, and replace the lenses, plus some laser work. The end result of all these operations and expectations for me was that they hadn’t caught it in time in the left eye, and despite a tiny sliver of vision I was effectively blind in that eye. Despite a lot of scar tissue, the majority of sight was saved in the right eye at that time.
It takes ages to adapt to changed vision, especially when one eye is effectively blind, so over the next 12 months I became accustomed to having accidents, including several falls thanks to tree roots bulging through pavements and bus seats that were just out of sight range. It gets to a point where you no longer get embarrassed. Both eyes appeared to stabilise, I adjusted to the changed vision and in some respects life went on. Apart from the falling over, other negative issues included an avoidance of crowds and busy places, and 3-D cinema was a total waste of time. You do adapt strategies, but it is not yourself that you need to worry about, but other people. There have been a number of occasions where I thought a tee-shirt emblazoned with the words “Vision-Impaired Person” would have been handy.
It was 2008 before I had any further problems, and that was with my blind eye. It developed what I thought was a grain-of-sand-in-the-eye irritation, so off to the ophthalmologist at RPA hospital, who then passed me onto the Sydney Eye Hospital. When specialists start passing you on to other baffled looking specialists you know you have a problem! Evidently the blind eye didn’t realise it was blind, and decided to start creating a new system of blood supply to the eye, which in turn was in the wrong places as well as increasing the pressure in the eye. There was a new injectable drug around called Avastin which cuts off the blood supply to cancer tumours, and it was decided to inject this into the eye to stop the new blood system developing. So, off for another intraocular injection. It did the job, but I was also told that the interior of the eye was collapsing, and that in time it would change colour. Oh joy of joys. Over the next 18 months it changed from a normal looking eye that just had no vision to this oddly coloured eye which made many people think I had two different coloured eyes (a genetic variance). And this is how it still looked until 2014.
However, this is good old HIV we are dealing with here, and it doesn’t like being ignored. Just as you think the worst of your problems are over it throws another bit of shit at you. I had been told previously that with the amount of scar tissue present in my good eye that there was a real chance of the retina detaching. So, shortly after moving to Brisbane, when the good eye started swapping between clear and blurred vision and finally settling on blurred, I knew something was wrong. A visit to A&E (on ANZAC day 2012) resulted in no clear result, so off to the RBH Eye Clinic the following day. The retina was off, and floating around, and there was a scare, with them thinking the CMV had reactivated…hard to believe seeing as I wasn’t immune suppressed, had a high CD4 count and an undetectable viral load – and another scare when they realised that I had highly toxic implants in my eyes (though long inactive, as they discovered). Instead of collecting some eye drops and toddling back home as I expected, I was put straight into a ward, and within 24 hours was in the operating theatre. A bad recovery room experience with an Asian Nurse Ratchet, whereby they weren’t informed that I was blind in my left eye, and leaving me to come-to in total blackness, occasioning a major panic attack is something I could have done without. The ongoing problems of anxiety and panic attacks (and this article being written at 5am) is something I am slowly getting over thanks to counselling and a letter to RBH formally requesting they look at the procedures and communication in the recovery room. My vision is now officially classified as blind. Glasses help a bit, but it is now a matter of me adapting to a low-vision life and devising some new strategies to deal with it. I can still read, though the font is huge, obviously I can still write though currently using huge fonts to do it. In 2013 I attended Southbank Institute of Technology to do the Certificate III in Fitness. I am not only the first 59yo to do the Certificate…I am the first severely vision-impaired person to do it. Threw TAFE into a panic, as they had to develop strategies to deal with me, and make sure tutors were on-board and up to speed. As much as I loved the experience, and the youngsters around me were absolutely wonderful, I came to realise that I was way too slow at moving around a gym to be a PT, so went no further. Atthe same time, I had done white cane training, and though finding the canes handy in certain circumstances – like whacking my way through the city – it is, as a general rule, more a hindrance than a help. However, it is great for getting seats on public transport!
In early 2015, after ongoing problems with my blind eye, and not wanting to go on infinitum with drops, I opted to have my blind eye removed. Unlike the old days, they now put an artificial ball into the socket, and attach the muscles to it, so it moves like a real eye. I had a prosthetic fitted, and to date no one has detected that it’s artificial.
However, my vision in general is now very severely impaired. Every trip outside my front door is a potential suicide mission – not to nention ducking and weaving around two Jack Russell Terriers at home…but I still challenge the risks, and get out and about under my own steam as often as possible. If anyone wants to date me…I’m a high maintenance date these days. Being night blind, I need to be guided around, and I move very slowly and cautiously. However, it has been pointed out to me that I can still spot a hot butt from some distance away! Some Gay traits over-ride everything!
As for the future… who knows. I am trying to develop the “living in the moment” way of my dogs by just taking each day as it comes. I have had a lot of help and support, and despite whatever may happen that will always be there.
As they say, there are none so blind as those who will not see! I still walk my dogs every morning, I still read & write, still do my genealogy and my DJ mixes, go to gym, do the shopping, get around to local restaurants and cafes so I can’t complain. Life should always be an empowering experience, and the best way to achieve that is to own your disabilities – instead of letting both HIV and disabilities rule your life…YOU rule your HIV and disabilities! That is the road to freedom!
Copyright 2012 © (Revised 2017)
I discovered this older article recently while rummaging through my article archives. I present it here with some edits and newspaper inclusions. HIV & AIDS (note the separation of the two) has an intricate, but morbidly fascinating, national & international history. I watched “The Normal Heart” again only a couple of days ago, and the hospital scene where Felix is in the hospital ward with the meal sitting outside the door of his KS infected friend, and being told not to go in without contagion gear raised a whole plethora of unpleasant memories with me. To understand where HIV is now, you need to understand where it was!
I can’t believe it has been about thirty seven years since we first started hearing about HIV/AIDS. I find it even harder to believe that I have been infected for thirty five years. Over half my life has been lived with this virus! In personal retrospection, I could say that compared to the bad, bad old days of 1981, life is a bed of roses today. But then I am aware that quite a lot of people would still not share that sentiment, so out of respect to them, I will avoid such romanticism.
I was living in Melbourne at that time, and I believe that HIV/AIDS got its first mention in the gay press a little earlier than 1981, though I could be wrong. There were only snippets, overseas briefs if you like, of a strange STD that seemed to be selectively attacking the San Francisco gay community, or more specifically, those members of that community who frequented the baths and back rooms of the famous city. I know that no one here was particularly concerned. We thought it was just another of ‘those American things’, or just a mutated form of the clap. Nothing that a pill wouldn’t fix! By the time I returned to Sydney in 1982, we had started to think quite differently. Some of us were getting very scared!
The media began drowning us in information, mainly from the United States. There was the dramatic scenario of ‘Patient 0’, from whom it was assumed the whole epidemic had spread like an out of control monster. The USA and France argued over who had discovered the virus, and made the link between HIV infection and AIDS (watch “Dallas Buyers Club” for an inkling of what this was all about!). A debate raged as scientists tried to decide what to call it and which acronym to use. We had GRID (Gay Related Immune Disease) and HTLV 1 & 2 (Human Transmitted Lymphoma Virus – if memory serves me well). They eventually settled on HIV for initial viral infection, and AIDS for any subsequent illnesses that resulted from the breakdown of the immune system. The original Center for Disease Control (CDC) classification system for the various stages of HIV and AIDS progression was so complicated that you really needed a university degree to be able to decipher them. To make things more manageable they finally settled on four classifications.
Then came ARCs (AIDS Related Conditions) but that was considered politically incorrect, so we settled on OIs (Opportunistic Infections).
The argument over names and classifications wasn’t half as frightening as the reality of the disease itself, which started to hit home in 1985. Official testing began in that year, and is still the earliest date that medicos will accept as a point of diagnosis with HIV. Any date earlier than that is declared to be a ‘self-report’. Like many others, I assumed I was HIV+ long before testing started. Virgin and chaste were not words to be found in my life resume. Sydney’s Albion Street Centre was the first here to begin testing, and it was done very discreetly and anonymously. We all used an assumed first name, and were issued with a number to identify who we were. (In 1996, when I needed to tap into my first HIV test results done at Albion Street, they were still there.) Counseling was atrocious. You were given your HIV+, or HIV- (if you were lucky) status very bluntly, then quickly shunted over to a counsellor before the shock had a chance to set in. You were also told, almost apologetically, that you probably had about two years to live. That was HIV diagnosis circa 1985.
A number of our conservative politicians, and some of our outraged Christian clergy started to say that they wanted us placed in quarantine. It was very specifically a gay disease, according to them, and they truly believed that fencing off the gay areas of Sydney and leaving it to run its course could contain it. These people wondered why we got tested anonymously!
By 1985 people were starting to die. There were no dedicated HIV wards in any of our hospitals, and patients were shuttled between temporary beds in wards and the emergency department. Reports started to filter through of hospital staff wearing contagion suits around patients with HIV. Worse still, meals were being left outside the doors of rooms, and would often be cold by the time the patient managed to get them. Cleaners refused to clean the rooms. There were scares of infection by contact with everything from a toothbrush, to a glass, to cutlery, so patients were offered very disposable forms of hygiene. Even mosquito’s copped some of the blame.
Then, of course, we had the living daylights frightened out of all of us with the “Grim Reaper”television ads. From 1985 to 1995, death lived with us on a daily basis. If you weren’t visiting sick friends, lovers, or partners in hospital, you were visiting them at home, or attending their funerals and wakes. Most of us lost the majority of our friends, and for most of us those friendships have never been replaced.
Around that time, the gay community took charge of what was quickly becoming an out-of-control situation. Tired of seeing friends dying in emergency wards, and getting only the minimum of care at home and in hospitals, we established our own care, support and advocacy groups. Out of the pub culture grew groups as diverse as BGF, CSN, ANKALI, ACON, and PLWHA. Maitraya, the first drop in centre for plwha was founded, and we raised the first quarter of a million dollars through an auction at “The Oxford” Hotel to start to improve ward conditions at St. Vincent’s Hospital. The gay community can forever take great pride in itself for bringing about great changes, not only in the care of plwha, but in the way the disease was handled, both politically and socially..
The Department of Social Security streamlined people with HIV/AIDS through the system and onto Disability Support Pensions, and the Department of Housing introduced a Special Rental Subsidy so that those on a Pension, and unable to wait interminable amounts of time for housing, were able to live in places of their own choice, at greatly subsidised rent. Home care became available through CSN, which, at that time, was not a part of ACON. By 1992, there was a perceived need for improved dental services for HIV patients, especially considering the high incidence of candida. The United Dental Hospital led the way with a HIV Periodontal Study, which at last provided reasonable dental care to plwha.
The first vaccine, p24VLP, was trialled with absolute zero results. There were quite a number of scares with HIV contaminated blood, and screening of blood donors was tightened. Discrimination reared its ugly head in the Eve van Grafhorst case, which forced this poor little girl to not only leave her school because of the hysterical reaction to her HIV infection, but to flee the country with her family.
In 1987, the first therapy for AIDS – azidothymidine (AZT) – was released in the USA, and its use in patients with HIV/AIDS was fast-tracked through the approval process here. In France a huge trial called ‘The Concord Trial’ was conducted – unethically – and its findings were found to be inaccurate. The resulting announcement that AZT was ineffective in the control of HIV, and the drug nothing more than ‘human Rat Sak’, caused a universal outcry. The damage was done. Many had no faith in the new drug at all, and local activists and proponents of alternative therapies tried to encourage people not to use the drug. Many of us chose otherwise. True, the effects of AZT were short-term only – maybe six to twelve months – but many saw it as a way to keep the wolf from the door long enough for some other drugs to come along. And come along they did. AZT was quickly followed by what are referred to as the ‘D’ drugs – d4T, ddi, ddc, and the outsider 3TC. However, these were all drugs from one class called Nucleoside Analogues and all had short effectiveness. Some doctors tried giving them in double combinations, but the effectiveness wasn’t much better. Despite their short life span, these drugs were being prescribed in enormous doses, which resulted in problems such as haematological toxicity, anemia, and peripheral neuropathy. We needed a miracle! Add travel restrictions in many countries, blood transfusion infections, and some babies dying as a result of this and things weren’t looking good!
Those of us who had managed to survive to 1996 were starting to give up hope. Most of us were on a pension, had cashed in and spent our superannuation and disability insurance, had a declining health status, and didn’t hold out much hope for a longer survival time. Prophylaxis for illnesses such as PCP, CMV, MAC and candida had helped improve most people’s lives, but they didn’t halt the progress of the virus. The first of the Protease Inhibitors, Saquinavir, was introduced that year, and evidence started to emerge of the effectiveness of combining the two classes of drugs into what came to be known initially as ‘combination therapy’ and later as HAART (Highly Active Antiretroviral Therapy). The results were astounding; those close to dying suddenly found their CD4 counts rising, accompanied by a return to reasonable health. Viral Load testing was introduced and people were finding not just a raising of their CD4 counts, but a drastic lowering of their viral load, often to the point of its being undetectable. This became known amongst doctors as ‘the gold standard’. Ganciclovir Implants to assist with the control of CMV retinitis were trialled the same year, and Albion Street Clinic started a trial using decadurabolane, a steroid, to assist in controlling Wasting Syndrome. The new drug combinations (NNRTI’s – Non-Nucleoside Reverse Transcriptease Inhibitors – a third class of drugs, were introduced shortly after) were not without their complications and problems. Most combinations still required huge quantities of pills to be taken daily, not just of the HAART drugs, but also prophylaxis and drugs to help control side effects such as nausea and diarrhoea. Their use required time and dietary compliance. Other problems such as lipodystrophy, lipoatrophy, and renal problems appeared, but we were, despite any drawbacks, a lot better off than we had been ten years, hell even two years earlier.
People’s health changed drastically, and suddenly new services started to take prominence. Some people required lots of counselling to help them reconnect with the life they thought had been taken from them. Others went to peer support groups or turned to treatment management groups, and some to the larger range of support services being provided by The Luncheon Club, The Positive Living Centre, NorthAIDS and other similar groups. There was recognition that there was a need for services to assist people with an improved health status, as some of them were contemplating returning to work. Despair had, to a large extent, been replaced by hope. Organisations concerned with people’s changing needs reassessed and changed their services to meet the demand. Those that changed have survived, and are still prominent in our community.
The war is far from over. New generations require new strategies, and while everyone seems happy that infection rates for HIV have remained steady in Australia (despite rampaging out of control in Third World countries), many feel it is still not good enough that, at this stage of 37+ years into HIV/AIDS, countries like Australia with high levels of education and accessibility to media and information should be seeing a decline in infections. Remembering my own youth I find it difficult to comment on the attitudes of young people. I grew up through the very worst that HIV/AIDS had to throw at us, and the lessons it taught are not easy to forget. I have to ask myself had I not had that experience, how would I be viewing it? It is no longer just the responsibility of the gay community to guard against new infections. Responsibility also rests with the straight community, and the IDU community, as infection rates remain at their current level. Some scaremongers have ventured forth theories of a ‘third wave’ of infection, but I trust we are too wise, and too educated to allow that sort of irresponsibility to happen.
Many of us (certainly not all) are going on to lead relatively normal lives. Many have returned to work either as volunteers, or in casual, part-time or full-time employment. Many like myself have returned to tertiary education, determined not to leave this world without at least fulfilling some gnawing ambition. However, we are not living in a ‘post-AIDS’ world, and to think so would be foolish. Even if the battles have been won at home, they still need to be fought elsewhere. We still need new drugs, and we still need people to trial both the emerging antiviral and opportunistic infection drugs and the immune-based therapies. We now have a fourth class of drugs in the form of Nucleotide Analogues. Many medical practices have adopted a holistic approach to medicine, and this can be judged to be a direct spin-off from the HIV/AIDS wars. Hopefully, soon please, a new vaccine will appear.
I really don’t know how much longer I will live now. Certainly with the standard of health care I get, and the close monitoring, I may live out whatever my allotted time was to be. Time will be a better judge of that than I will. For me, HIV/AIDS has been a two-edged sword. It has taken good health from me, I have permanent disabilities from AIDS, and I have seen far too many friends, lovers and partners die from this hideous disease. At the same time, it has presented me with opportunities I would never have grasped if it had not come along. I am re-educating myself, taking myself off along strange paths. It has given me a whole new understanding not just of HIV, but of disabilities in general, and a great respect for those who overcome difficulties and recreate their lives.
At a university tutorial last semester, a young woman asked me if I thought every day about having HIV. I don’t! It may have taken thirty five years, but it is now so integrated into my life, that I have trouble remembering the time when I didn’t have it. The pills are just pills now (and thankfully a lot less of them than even 4 years ago), and most of my current medical problems have more to do with ageing than with HIV.
I can tell you, that really gives me something to think about!
Many have gone before me
Just a few remain.
Stories of hopes and dreams
Of fun and laughter
Bravery and love.
Stories to be told,
Lives that have lived and loved,
Entwined into mine and yours
Inextricably binding us together through time.
Yet I remain.
Am I the storyteller?
Am I the one who remembers
And holds together
All these peoples lives?
Who holds within my heart their love?
Am I the one
Who lives out their dreams?
For indeed dreams they had and held
Before the thread was broken.
Am I he who tells the tales
Of hopes, and bravery
Of fun and laughter
Some people just can’t let the past go, or have an inability to see when something has passed it’s use-by date! I have too many friends who keep reiterating that they wish the Sydney gay ghetto was still intact and functioning.
Let’s have a look at the (unspoken) history behind the formation, growth and death of the gay ghetto in Sydney. Historically, Kings Cross and Darlinghurst have always been protective enclaves for the dispossessed, eccentric, minority groups and the unclassifiable citizens of Sydney. Perhaps, initially, because of its foundations in working class and poverty-stricken populations, and later on the underworld, gangsters and prostitution – including transgender – it has always had its roots in notoriety!
In the 70s and early 80s in Sydney, the gay citizens were looking for a space to band together, to avoid the illegalities of being homosexual, and the social stigmatisation that happened at that time as we became more brazen and outspoken about our sexuality. I remember visiting there with a female friend in the 70s – before my own coming out – and the roots of the community were there already with nightclubs and cafes, though homophobic attacks and vitriol were prevalent as well. It was a wall-less ghetto in the making.
By the time the 80s rolled around, it was firmly established as a gay ghetto, ambling along Oxford St and its immediate environs, from Elizabeth St through to Paddington. The legalising of gay rights in 1982 brought around a boom in the area. The ghetto formed very much as a means for us to squeeze out the undesirables by a sheer force of numbers…and it worked. Any straight troublemaker coming onto our turf would have immediately felt threatened, and though violent attacks did occur, they were rare.
At its height, you could live within the ghetto and never move outside it. We had our nightclubs, pubs, cafes, restaurants, newspapers, magazines, bookstores, supermarkets, small businesses, doctors, dentists, optometrists, saunas, post office, houses, apartment buildings. A night out would involve a meal in a local cafe or restaurant, a visit to your pub of choice – about 9 in its heyday – then off to your nightclub of choice. In the early hours of the morning you could either stagger home via your favourite takeaway, or do a trip to your favourite sauna or backroom without ever being harassed. The ghetto was a security blanket.
During the HIV/AIDS epidemic of the 80s and 90s, it was a true blessing. Once again, you could live as a HIV person within the ghetto and be safe and protected. Within the boundaries of the ghetto were established our hospital and hospice care, our HIV/AIDS specialists and GP practices, our support groups such as ACON (AIDS Council of NSW), BGF (Bobby Goldsmith Foundation), CSN (Community support Network), ANKALI (emotional support), and the Positive Living Centres, as well as our advocacy groups such as PLWHA (People Living With HIV/AIDS), NAPWA (National Association of People with AIDS), our funeral directors, our church. We did our own fund-raising, and we supported each other through our pain and sorrow. Once again, it was a safety zone where the emaciated frames of those luving with AIDS could wonder without fear of derogatory remarks, hatred and harassment. In that zone we mourned, held our wakes, and looked for material and emotional support. Those religious groups such as the Festival of Light, who preached and promoted hatred towards us learnt the hard way about the strength and communication within the ghetto.
Fred Nile’s Cleansing March in the80s was a good example. Thinking his band of supporters would march unchallenged up Oxford St, he and they were in for a rude shock! From early in the morning on the day of the march, protestors, the gay community and its supporters started lining the length of the march. By the time the Rev Fred – with his cross-on-wheels – started marching up there, the footpaths, awnings and buildings along the route were packed to capacity with his detractors! The march, from his prospective, was an overwhelming humiliation, and failure! I remember seeing a car full of Tiwi Islanders who had evidently not been warned about how unpopular their beloved reverend was. They looked terrified for their very lives, overwhelmed as they were by the booing and vitriol of the massed ghettoites. I actually felt sorry for them!
However, in the midst of all this, other changes were taking place that were to instigate the downfall of the gay ghetto. Anti-discrimination laws came into play and all-male/female venues became – temporarily – illegal. Nightclubs like the Midnight Shift had to start letting women in, and once they started bringing their boyfriends and other straight male friends, the ambience of the clubs changed forever! And not in a good way! Many ghettoites who had been in the centre of the HIV/AIDS bonfire scattered to other states or to the far north of NSW. Indeed, by the time highly effective HIV antiretroviral regimes started in 1996, it was very much a decimated community, though the epidemic itself had moved on to the straight community, to drug-users and those that had the double-whammy of HIV and hepatitis. The myth of the “gay plague” was laid to rest for good!
But perhaps the greatest enemies of the ghetto was generational changes, social acceptance, and a movement away from the boundaries of the ghetto, a realisation the we no longer needed the safety and protection of the ghetto to live our lives. We dispersed to Newtown, Enmore, Erskinville, Camperdown, Leichhardt, Annandale, Alexandria, Pyrmont, Zetland, Moore Park, Surry Hills, Redfern and Summer Hill. We transformed areas into “Trendy” and moved away, in our hordes, from Oxford St. Yet, some pieces of our lives remained there – a few pubs and nightclubs, a few medical practices, but all-in-all, we moved on.
Darlinghurst and much of Paddington are now mere shadows of their former selves. A stroll down Oxford St now will reveal dozens of empty businesses, and those that do remain struggle for customers during the day. The nightclubs and pubs are now the enclaves of straight people, and a general feeling of desolation, violence, uncomfortable vibes, and unrest permeates the air. It is now, once again, a place where unsolicited violence can occur irrespective of your sexuality.
So the ghetto has outlived its usefulness, and is, to all intended purposes, dead! I can understand nostalgia, even fleeting yearnings. What I don’t get is an inability to accept the ravages of time, the changing dynamics of an area, the growth and development of populations, indeed diaspora! To those who wear blinkers, want the past to live on, the “good old days” to be a mantra for days gone by, I say…let it go! Enjoy the memories, but don’t wish for them to return. To deny yourself the insights of living in the “now” is to root yourself in a past that can never be repeated. Allow the ghetto to be swallowed by history, to takes its place in our memories as somewhere that we lived and enjoyed IN ITS TIME…and leave it there! Never let your yearning for the past, cause you to overlook the reality of now.
This year marks, for me, 33 years of living with HIV/AIDS…though now it is just HIV. I consider it a landmark, as back in 1996 I was admitted to Prince Henry hospital with chronic CMV retinitis, chronic candida, chronic anaemia, wasting syndrome (48 kg and going down), 10 CD 4 cells, and no immune system, and was not supposed to leave…at least not under my own steam. I did, thanks to advances in medications at that time, very aggressive treatment and a lot of will power. I don’t give a fuck how negative many HIV+ guys are about life with HIV. For me, this was the great singular event of my life, a pivotal point that resulted in life-altering decisions, a mental overhaul, and the knowledge that there was a hell of a lot more to life than HIV. It altered the course of my life, and for better or worse I have never looked back.
I was a speaker for the Positive Speakers Bureau for 12 years before realising that when you continually tell a story you start doing it by rote. The time came to opt out before it becomes totally meaningless. I have also written for “Talkabout” magazine (the flag ship publication of Positive Life NSW – formally PLWHA NSW Inc) for 15 years, as a features writer and a columnist. I also spent many years on the Publications Working Group. As a writer I see my role as not only to inform people, but to provoke debate, at times to be opinionated, to raise questions, to address abuses and unfairness and to be, when required, controversial. Unfortunately, my time with “Talkabout” taught me that to get published in a HIV publication you need to walk the safe road. To be controversial is to be tolling your own death knell. Mind you, this censorship has nothing to do with the editors who, in my experience, have been nothing but supportive. Community Health and a certain AIDS council provide funding to the magazine, so to poke your nose into sensitive areas will ensure your censure and non-publication.
As a HIV+ person writing about HIV issues I have always found my hands tied. I have written two extremely controversial articles on HIV Issues over the years. One, on Options Employment Services using HIV clients as a free work force in the guise of “work experience” was so watered down after threats of suing PLWHA, the editor and myself (I truly wish they had) that by the time of publication was a mere shadow of its original fiery tirade…despite the fact that I had evidence of this going on.The manager even took me aside and “suggested” that I quieten down my opinions as they were providing a service to the HIV community. Shortly after, they went broke and disappeared. The second article was amongst the best pieces I have ever written, and covered the controversial area of bug-chasing (HIV- guys who deliberately have unprotected sex with HIV+ guys in the hope of contracting HIV). The magazines working group deemed that by writing about bug-chasing I may have been promoting it amongst a certain sector of the community. Considering that the practice is well documented, is acknowledged and exists I failed to see how being informative about it was in any way promoting it…oh shit! I forgot that community health and certain HIV organisations wanted to keep their heads buried in the sand about the issue…and they held the purse-strings. Censorship is alive and well within the HIV community and always has been. Want to tell the truth about what is going on or want to expose something? Not on their watch!
But despite this I continue to write, though I keep it to the more nondescript these days. I do enjoy being published! Since moving to Brisbane I have been phasing out my writing for “Talkabout” (which after 15 years of being published in pretty well every issue, has gone unacknowledged by the organisation itself, though not by the editors), and have started writing for QPP “Alive”, the magazine of Queensland Positive People. Same story, different place as far as funding goes, I’m afraid. Nothing controversial will be coming out of here either.
33 years ago at the start of the HIV shit fight, people never questioned anything about treatments, definitions, philosophies, or courses-of-action. We were in crisis mode and anything was better than nothing. We let a lot happen that in more sane times, in more accountable times, would never have been allowed to happen. This far down the line it is time to start asking questions, time to demand investigations and redefinition into many aspects of treatment, time to look back at some of the historical record and say “we were wrong”, and set the record straight. I no longer allow my doctor, or the HIV establishment, or the drug companies to dictate my path to health for me. I follow my own path, which is dictated to by knowledge and experience. 11 years ago I made a decision to halve my daily medications, and dose myself once a day only. Considering the negative impacts of huge amounts of HIV medication on the body I decided to take a risk. Well, this far down the line my health has never been better (though diet and exercise also contribute to that), my viral load has remained at undetectable, and not only has my CD4 count remained stable, it has in fact risen considerably. In fact, on my blood tests all other readings – except CD4/CD8 – are within range. Considering the recent emphasis on drug regime “compliance”, and considering my own circumstances, I am forced to ask – controversially, naturally – if the compliance issue is being driven by HIV specialists, or by the drug companies who stand to make a fortune out of HIV drugs. I will leave that question in the air for you to mull over and answer for yourself. This is a personal opinion, and one I am entitled to.
With the release of the brilliant “Dallas Buyers Club” the truth about AZT is finally out there. Pressured by my doctor to go on it in the latter part of the 80s, it is the one decision of my HIV care that I regret. I had read the report from the “Concorde” study in France, I knew it was described as “Human Ratsac”, yet I still finally gave in, and witnessed the immediate decline of my health as it bashed my immune system into submission. Needless to say, the long-term affects are disabling, and were not worth the risk. I still hear those who work in the HIV “Industry” – as indeed it was and still is – banging on about how it kept the wolf from the door – it didn’t! It poisoned and destroyed our immune systems, and left us vulnerable to opportunistic infection! It effectively killed many of us. As a drug to assist with maintaining CD4 counts it was a total and complete failure! And I am not the only one to say so! Ask any one who survived AIDS their opinion on AZT! Minor control of HIV did not start AZT situation. How the FDA in America handled the AZT situation and allowed wed the drug companies to dictate treatment options, block other drugs put out by rival companies, and chose to ignore or acknowledge research from overseas was a disgrace.
Even now in 2014 ignorance lives on. I continually hear, read and see HIV being described as AIDS! It is NOT AIDS – it Is HIV or HIV+! For fuck sake get your facts right! HIV is a viral infection, and AIDS are as the initials infer – Acquired IMMUNE Deficiency Syndrome! They are infections contracted by a breakdown of the immune system! The two do not necessarily go hand in hand, and you can have one without having the other. People undergoing aggressive cancer treatments which knock the immune system around are left vulnerable to the same infections triggered by AIDS in the plague years. Drug addicts also.
There are – and I am not being unkind nor ungrateful – those who have worked in the HIV Industry for too long. They are burnt out, and out of touch. If you only wander in HIV circles, you will only know that singular perspective. These people are indoctrinated, lacking in vision, and single-minded in their approaches to HIV and its management. They are blinkered, and only ever spiel forth statistics and the same information that we have heard for the last 30-odd years. They seem incapable of acknowledging different perspectives, new ideas, or revisiting and re-evaluating the old philosophies and education. Without an insurgence of new blood, HIV is in danger of stagnating and just at a dead end. Their current publicity of “Ending HIV” is a fantasy, and they know it. As long as HIV is in Africa, and in countries like Russia and China where education is almost non-existent or played down, HIV will never end. Empty words to seem to appear to be doing something, is just a waste of money. The HIV Industry seems to be very good at this. Always about 2-years behind actual need – just look at the employment needs of AIDS survivors in 1997/98 – when services were introduced they were way off course. You can only have so many programs that teach you how to write a resume, or attend an employment interview. Every single return-to-work session I went to do talks at had the same people in them. They just moved from one group to another, never putting the teaching into action. Where was the advice for people who wanted to be re-educated, or start a business, or upgrade a hobby,or buy into a franchise? It was non-existent. These people were the ones who fell through the cracks for lack of support and services. This has always been an ongoing problem. Naturally, the lack of funding is always blamed – though enough money to pay huge salaries – when really it is a lack of foresight, and imagination. Of course, everything is now wrapped up under the umbrella of Community Health, so any hope of imaginative thinking is now out the window. Those who hold the purse-strings control everything. It is a sad state of affairs. Groups like “Positive Life” no longer acknowledge their roots, nor do they move in the directions set down by the original founders. They are out of touch with their memberships, are indeed losing them. In the race to save money they are dropping resources that keep everyone active within the group. Even Positive Speakers Bureau inductees are now told what to talk about, and bang on about the same old messages and sprout the same old statistics. The trouble is…no one gets sick any more, so there is nothing to talk about for an hour. Perhaps it has outlived its use.
If one has to be totally frank, service delivery, information and services are no better now than they were 20 years ago! In many cases, they are worse. One friend of mine complains of the lack if easy access to HIV meds, and he has to spend a lot of time travelling to obtain them. He also comments on how he and his partner feel isolated and-reclusive due to no social groups to mingle with, and the constant heed to continually go through your medical record every time you change providers. Pretty sad state of affairs considering he only lives in Canberra.
Being my 33rd anniversary of life with HIV, and with World AIDS Day approaching I have written a personal retrospective of that period hopefully for publication around that time. It is 2,500 words long…not a lot of words for 33 years. If you are interested, follow the link. Not quite as controversial as this!
For information on the Concorde Trial – http://aidsinfo.nih.gov/news/5/concorde-trial
This article was written in 2001, but the sad thing is that HIV quackery, cons and bogus inventions are still going on. There is no end to the lengths some low-life’s will go to to make money, and it is not just the HIV community they target. This is a few of the rorts going on back when this was written.
Type the query “HIV/AIDS+hoaxes” into the Yahoo search engine and see what comes back. You may be surprised to find that it will come back with 187 matches, and that is just for HIV/AIDS.
To follow all these links, or only to select a couple for investigation takes you into another world. You can look into fraud on a one-to-one basis by people who are simply unscrupulous, treatments and therapies that are on the verge of frightening, an underground antiretroviral drug trade, suspect complementary therapies, internet and email chain letter HIV/AIDS hoaxes, and urban myths.
The home page of the ‘Texas AIDS Health Fraud Information Network’ (TAHFIN(1)simply states that “The HIV epidemic has created business opportunities for many people. In many cases, people and companies pursue these opportunities with the sincere intention of helping while staying within the bounds of the law and maintaining fiscal integrity. The same motives can sometimes lead to harm even with the best of intentions. In some cases, the motive is to simply make a buck regardless of the consequences to those affected. The latter is what opens the door to fraud.” The Quackwatch site expands this further by saying that “The fact that HIV causes great suffering and is deadly has encouraged the marketing of hundreds of unproven remedies to AIDS victims. In addition, many companies in the ‘health food’ industry have produced concoctions claimed to ‘strengthen the immune system’ of healthy persons…many of the expert quacks in arthritis, cancer and heart disease have now shifted into AIDS” and that “…every quack remedy seems to have been converted into an AIDS treatment.”(2)
To explore all these areas, and the much vaunted question of ‘Does HIV cause AIDS?” debated on sites such as ‘Nexus’(3), ‘Is AIDS man-made?’ and the hoax of a new air-borne strain of HIV would require a lot more than the word allotment for this article.
The ‘cures’ observed on the Quackwatch site have included processed blue-green algae (pond scum), BHT (an antioxidant used as a food preservative), pills derived from mice given the AIDS virus, herbal capsules, bottles of “T-cells,” and thumping on the thymus gland. There is also Autohemotherapy – a worthless procedure in which a sample of the patient’s blood is withdrawn, exposed to hydrogen peroxide and then replaced. Add to this the entrepreneurs who have marketed covers for public toilets and telephone receivers with claims that this will prevent you from contracting the AIDS virus, and you have some idea of exactly what to expect.
Over at the “Educate-Yourself”(4) site, you will find yourself in for a real education. There are articles on ‘low voltage electricity’ to make HIV inactive. Dr Bob Beck designed the blood electrifier. The site claims to have seen laboratory reports and Institutional Review Board studies that seem to clearly support claims made by Dr Bob Beck that his blood electrification device has caused ‘complete spontaneous remission’ in literally thousands of AIDS patients, cancer patients, and chronic fatigue sufferers, to name just a few. There appears to be a lot of ‘claims’ and no documentation to support them. The two methods used to treat AIDS patients consist of either removing a small amount of blood, electrifying it then returning it to the body, or sewing a miniature electrifying power supply along with two tiny electrodes directly into the lumen of an artery. The small unit had to be moved every 30-45 days, as scar tissue and calcification occurred around the implant unit, and could lead to artery blockage. The site also reports that hundreds of HIV sero-positive patients have been converted to HIV sero-negative with the use of ‘Ozone Therapy’. “Help is available to AIDS patients right now but the medical establishment is ignoring it” the site informs us. It does state, however, that ‘no evidence for the claims exists in RELIABLE scientific literature.
On December 22, 2000 the FDA(5) issued a safety alert on unapproved ‘Goat Serum Treatment” for HIV/AIDS. This unapproved product, produced in goats as an antiserum against HIV/AIDS, was already the subject of a ‘clinical hold’ by FDA, prohibiting its use until previously existing safety questions are resolved. (Since researching this article, this hold has now been lifted, and the Goat Serum Treatment is undergoing clinical trials).
In 1999, the FTC (Federal Trade Commission)(6) issued a warning about bogus Home-Use Test Kits for HIV. The kits were advertised and sold on the Internet for self-diagnosis at home. The kits showed a negative result even when testing a positive sample. The kits could give someone who was actually HIV+ a false impression that he/she was not infected. Some of the ads stated that the World Health Organisation and the FDA had approved the kits for use.
As far as AIDS urban legends go, the one about ‘AIDS Mary’(7) is probably the most famous. The legend is that the morning after a one-night fling, a man walks into his bathroom and finds the words ‘WELCOME TO THE WORLD OF AIDS’ scrawled on the mirror in lipstick. The legend is also known as ‘AIDS Harry’ (obviously depending on who is telling the story), and it was begun back in 1986, and basically expressed the fears surrounding HIV/AIDS at the time. This legend was actually used as a defense in a criminal trial in 19908. Jeffrey Hengehold murdered Linda Hoberg after sleeping with her, then being told by her that she had AIDS. There was no evidence to support the allegation, as Hoberg had been cremated, and Hengehold had never tested positive. In a similar vein, a 1998 Internet urban legend stated that AIDS-infected blood is being injected into unsuspecting moviegoers and young people dancing in bars or at raves(9). Somebody’s (no name mentioned) co-worker went to sit in a seat at the cinema, felt a prick and found a needle poking up out of the chair with a note on it saying “Welcome to the real world, you’re HIV POSITIVE”. “It’s all false,” said Sgt.Jim Chandler, a Dallas police spokesman. “This has not happened, and we would ask people to stop forwarding this message to their friends because it’s creating situations where police departments and emergency personnel are having to respond to inquiries about this hoax.”(10) Other reports of needle sticks at bars and raves were investigated, and found to be false.
Even the seemingly innocuous world of email communication has not been spared its share of AIDS hoaxes. On the 7th December 1995, the following email chain-letter was sent to J.Beda(11) by several of his acquaintances. It had an email address at SYR.EDU, and in the SUBJECT: aids.
>For a class project, I was wondering if this could be passed on to prove
>a point. In my human sex class, we learned that if somebody has received
>the HIV disease, and they don’t know about it, they could pass it onto
>people who they don’t even know.
> Could you all pretend that I have HIV, and I gave it to you.
>Then could you pass it onto your friends? Let’s see if the entire
>email population could get infected by me alone.
> Please remember that this is a lab experiment. I have to say that I am not intending to offend any one in any way.
> By the way, don’t erase this or the forwards from your computer.
People pointed out the parallels between receiving this sort of email and having nonconsentual, unprotected sex with a knowingly infected partner. This is commonly known as rape, and potentially as murder. The recipient pointed out to the sender some of the faults of the project, not the least of which is that chain-letters are a BAD THING no matter what the cause. The project also had problems with its implementation in other areas. It never ends. When is the school project finished? It contains no instructions on where to look for more information. It contains nothing indicating who was responsible, or who to contact if there are problems. It does not offer any education on HIV/AIDS. Apart from anything else, sending out this sort of email is against the terms of service of every computer system ISP.
Generally, emails of this type take one of two forms: those that promise/threaten good/bad luck, and illegal pyramid-scheme letters that promise to make you lots of money.
The most recent scam is one to come out of Thailand, and notified to all TAHFIN(12) subscribers on 27th August 2001. It tells of 5,000 HIV-stricken people sitting a soccer stadium for several hours to collect a drug called V-1, a supposed cure for HIV/AIDS. Unlike conventional HIV/AIDS cures, it works on the digestive system instead of within the blood stream. The apparent food supplement is distributed free. There are a reported 755,000 AIDS patients in Thailand, which is one of the major reasons the scam has managed to succeed in a country where the average earnings are $2,000 per annum. Distributors are touting the cure as ‘an oral vaccine’. The Thai Ministry of Public Health tested the drug on 50 people, and found it to have no effect whatsoever, positive or negative. V-1s creators rebuffed Ministry officials who requested the drug be tested by the CDC in the USA. It is feared that soon V-1 will be marketed in other emerging nations who are being overwhelmed by AIDS, and have few resources. It is felt that if governments are put under pressure by the mass-hysteria these sorts of cures create, they will just allow nothing to be done to halt the distribution. Salag Bannag, the distributor of the little pink pill claims that over 100,000 people will have received the drug by the end of this year.
Now, we haven’t touched Low Frequency Sound, Induced Remission Therapy, Colloidal Silver, Bio-Engineering, T-Up or a plethora of other products available on the internet, and through quacks masquerading as practitioners. This article is not attempting to stop people trying alternative therapies. What it is saying is please be careful! Do not part with your precious money for anything unless you have investigated any claims thoroughly. Don’t be taken for a sucker. In Australia, any drug or item that is promoted for use by the general public must not only contain details about what the product actually does, but also what side-effects it can cause. The most blatant element of a lot of the products that are advertised on the Internet is that they only state the positive effects of the drug or devise, and that no side-effects are reported. This sort of situation should automatically make you think twice about the efficacy of a product.
In an attempt to tighten up legislation, and make people aware of their responsibilities when promoting drugs or gadgets, in 1998 the FDA proposed to issue new regulations pertaining to the dissemination of information on unapproved uses for marketed drugs, including biologics, and devices.
Of cause, this only becomes relevant if you are caught!