The harsh reality is that the only people really qualified to comment on long-term survival are – long-term survivors.
Being a HIV long-term survivor is a bit like being a Vietnam veteran…more often than not you feel delegated to the sidelines of history. Like the Vietnam vets, we fought a socially unpopular and unacceptable war, and like them, our continuing presence is a reminder of things that many would sooner either forget, or just not acknowledge.
That is a harsh – and raw – assessment, and I can see hackles rising already amongst those who choose to observe it through rose-coloured glasses. The harsh reality is that the only people really qualified to comment on long-term survival are – long-term survivors.
Yesterday (June 5th) was HIV Long-Term Survivor Awareness Day. I can’t say that I didn’t personally feel a certain…pride…not the right word, though I’m hunting for the right one…that at last there was an acknowledgement of my part in HIV history. I posted the event as a Facebook status update, and I’m truly humbled by the response from my friends, and at the same time reminded that there are others in my current social “circle”who are also chalking up survival terms equal to my 36 years. Yet despite the acknowledgement, the most telling word to me was”Awareness”! And perhaps that word, more than any other, takes us back to the start of this article. It is an important word, as it suggests – very strongly – that we are the forgotten, those of HIV “past”, and our very existence needs to have attention drawn to it; that there needs to be a reminder that we didn’t all succumb to the ravages of AIDS.
Reality hurts, doesn’t it! And that really is the reality of long-term survival. To be honest, I don’t think anyone knows what to do with us, apart from just leaving us alone to muddle through. On the general overview of HIV history, and considering the numbers of those who died – and continue to – as a result of AIDS, the numbers of us who have survived 20 years or more are small. We are now a disparate group, spread far and wide by the great diaspora that resulted from HIV diagnosis in the day. We are no longer concentrated in the areas of ground zero for the HIV/AIDS pandemic, and in many respects that is a major reason for our being in the background of modern day HIV.
I don’t want to call this “awareness” day tokenistic…but, recognition of the sheer tenacity of HIV long-term survivors has been a hell of a long time coming! Considering that those of us with early diagnosis, who were still alive in the late 80s/early 90s were already long-term survivors…it’s recognition that is – like so much in HIV – well and truly overdue!
I have attempted to convey the harsh reality of long-term survival in past articles, and in my talks when I was a speaker for the Positive Speakers Bureau (PSB). Myself, and other speakers, whose history went back to the key points of HIV in Sydney were always in demand, as we were the living history of HIV and AIDS, the harbingers of the tales of horror, stigma, discrimination, political and religious turmoil, and the community response to the pandemic. But over time – I was a speaker for 12 years – I saw this group slowly dropping away for various reasons, and by the time I chose to retire from speaking I was one of the last of these “history” speakers. By that time, I personally felt that HIV in its modern guise was leaving me behind, lost in its dust as it moved into new territory. A HIV diagnosis still came with its fears and insecurities, but it was no longer a death sentence.
To be honest, I don’t think anyone knows what to do with us, apart from just leaving us alone to muddle through.
So, who are these people who are having “awareness” drawn to them? I can only speak for myself; can only put a personal perspective on HIV long-term survival. Perhaps the reality of it has always been something I have downplayed, in an attempt to NOT come across as a victim! The true reality of the horror years was TERROR!
My CMV diagnosis in 1996 filled me with terror! It was the ultimate reality that I was now on borrowed time. But even before that time, it was terrifying to get what was a death sentence in 1985! It was truly terrifying to watch the horrendous deaths happening around me on a daily basis! It was terrifying to know that that was what could be in store for me! It was terrifying every time I visited the doctor, every time I had a blood test! It was terrifying to know that treatments were limited, and of short duration! It was terrifying to be subjected to the side-effects of huge dosages of same treatments – side-effects I still live with today! It was terrifying visiting friends and lovers in hospital, knowing each kiss could be the last! It was terrifying to find myself losing weight, and trying to hide the fact under baggy clothing! It was terrifying to find myself the figure of HIV discrimination in my workplace, and powerless to do anything about it! It was terrifying to realise I could no longer go on working! It was terrifying after a lifetime of independence to realise that I would need to go onto DSP, and housing subsidies! It was terrifying watching myself head towards alcoholism, chain smoking and life in the fast lane to deal with everything that was going on – uncontrollably – around me! It was terrifying to find myself in hospital for the first time – a collapsed lung! It was terrifying to lie there for 2 weeks, having Sandy from the Oxford Hotel visit another friend and suddenly stumbled upon me! It was terrifying to see – very briefly – the look in her eyes! It was terrifying to think I could be there for reasons of HIV – yet denying it…I would go home…life would go on…yeah…right! It was terrifying to live the 24 hours between my possible CMV diagnosis, and its confirmation! It was terrifying to know that this was a reality- AIDS! It was terrifying only hours after that, getting off a bus at Prince Henry Hospital at La Perouse, and wobbling towards admissions…and thinking…what the fuck! It was terrifying to realise the reality of your health status; 10 CD4 cells, 48kgs weight…could that be right? Chronic candida, chronic anaemia, chronic CMV retinitis! It was terrifying to realise I was dying! It was terrifying to lie again in a hospital bed with nurses, and drips, and medications…and wondering if it was all worthwhile! It was terrifying finding myself at POW the next day, having drugs injected directly into my eyes! It was terrifying that day…and every day after! It was terrifying to sit in that waiting room days later, holding the hand of another guy going through the same thing, trying to reassure him as he wept, a reassurance I didn’t feel myself! It was terrifying trying new drug combinations, not knowing if they would be successful, or in time! It was terrifying to realise I accepted my fate, and was not frightened! It was terrifying to be told the combination had worked, and I’d soon be going home! It was terrifying to realise that I felt robbed, felt that I didn’t deserve to be spared that which so many I loved had not been saved from! Terrifying to realise I was going back to a world I no longer knew! Terrifying to realise that in many respects, I was now a freak…someone who just didn’t fit in! It was terrifying to know that no one, no individual, no organisation, was prepared in any way for the return of the living dead! It was terrifying to sit at home…lost, alone, isolated, unsure, unknowing, afraid! It was terrifying to have the reality of ongoing life, of being whisked from deaths door! It was terrifying going through the panic attacks, the anxiety, the depression! It was terrifying to discover that every one was so unprepared for “us” that necessary help was not available when we needed it! Terrifying to be taking massive numbers of drugs – 3-4 medications, with anywhere from 4-6 pills for each medication, 3 times a day (with dietary and time compliances on them), plus prophylaxis, plus pills to control side effects! It was terrifying to find I needed medication compliance counselling, return-to-life counselling, peer support groups, weekly clinics, specialists! Terrifying that I felt myself useless, at a loose end, disconnected! Terrified to realise I wanted nothing to do with life as it had been – so few friends survived the ravages of AIDS, and those not infected had no point of connection with me, and where I now was. I cut back my drinking, stopped smoking, adopted a healthier lifestyle, decided I wanted my life to head off in different directions to that which it had been going in! It was terrifying to find that there was no one to help me do that, and despite being at the forefront of a needs assessment project concerning the return-to-work requirements of others like me, the reality was that help was a couple of years away! It was terrifying to have lost the sight in one eye, and a good deal of the sight in the other due to the CMV, and learning to deal with that, and its uncertainties! It was terrifying to fall flat on my face on footpaths due to lack of depth perspective; tripping over tree roots, or low street benches, or falling down steps because I could not see the edge; It was terrifying going through the surgery to have Vitrasert implants put in my eyes to negate the regular intraocular injections, then surgery to remove the cataracts caused by same! Terrifying to get the Deca-Dorabolin injections to help put weight back on! Terrifying to return to a normal job – albeit temporarily – knowing that it made access to doctors appointments and hospitals (for drugs) very difficult! Terrifying to find myself collapsing in a gift store, and unable to use my legs…and even more terrifying to find the store owner dumping me in the gutter under the illusion I was a druggie…and everyone else ignoring me – then finally managing to walk again, only to collapse in the middle of Bondi Road on my way home! Terrifying to find I was losing my ability to walk a straight line, but drifted all over the footpath…and no one knew why! Terrifying going through many tests and scans- with dire predictions of what was happening in my head – to finally ascertain that THE virus had jumped the blood/brain barrier and was resident in my brain! The terrifying wait for it to resolve itself! Terrifying to go out to a pub for the first time after an 18-month recovery period! Terrifying to know I knew no one in the pub! Terrifying to go home with someone despite a previous very promiscuous life! Terrifying to get into a relationship again!
Terrifying! Terrifying! Terrifying! I could go on and on with the lists of terrifying experiences over this period, but the word count would be astronomical! Suffice it to say – terror had a name…HIV/AIDS! No one diagnosed these days will – I hope – ever have to go through it.
Survivor guilt was something that came later, after all the pandemonium of getting my health back on track quietened down, and left me with time to think, to mull over the events just past. It felt so unfair that I was still here! Felt unfair that, having prepared myself to die, it hadn’t eventuated, and I was left to continue mourning for those gone, continuing to live thanks to the hoped for medications that others hadn’t managed to hang around for! It was unhealthy thinking, but it happened anyway! More counselling to reconcile that!
So – has the terror stopped? For me, not really! A detached retina, and complex surgery to replace it in 2013, and the removal of the blind eye -it is now a prosthetic – in early 2015 has reduced what was bad vision even further. I joke that every time I walk out onto the street, I take my life into my hands…but it is, in reality, no laughing matter! It is quite frightening! It restricts what I do in some respects, but I deal with it. However, the fears of further detachments – I had one scare recently – or anything else that may affect what little vision I do have is always there.
However, it hasn’t all been terrifying over the last 22 years. I’ve taken control of my own health, I’ve reeducated myself, and fulfilled a few frustrated ambitions. I’ve reconnected with some old mates through social media, and it pleases me to know that not all disappeared like many did. I’m in a happy place as far as everyday life goes.
I hope this gives those that bother to read it an “awareness” of what long-term survival is really about. It would be fulfilling if something could be set up to make us more visible, less confined to the sidelines of HIV. I don’t have an answer to that conundrum only to say that it should have nothing to do with sitting in a circle, knitting and discussing HIV! Now that is a truly terrifying thought!
Tim Alderman © 2018.
“Adolf Hitler was my God. He was sort of like my Fuhrer, my leader. And everything I done was, like, for Adolf Hitler.”
As part of my writing degree from the University of Technology in Sydney (2001) I studied a subject called Contemporary Cultures. Subsequently, I find the study of sub-cultures and “aberrations” within the Gay and Lesbian community a fascinating subject. However, occasionally a subject comes along that I find particularly disconcerting, and gay neo-nazi’s is one that confounds me! How a gay man could attach himself to the insidious writings and philosophies of one of the twentieth centuries greatest tyrants – especially one who condemned thousands of gay men and women to the ovens of the concentration camps – leaves me confused, and wondering…have they really studied what this movement was all about, and if they did, how could they be so dispassionate about it! Perhaps we can be reconciled to them by the fact that even they realised the contradiction, and gave up this somewhat insidious belief. However, the question remains – why? To be honest, and to be contradictory myself, I find the photo below a bit of a turn-on! Not the singlet…that is just wrong…but the man himself – oh yeah! There is an ultra-masculinity about him that is very sexy…and perhaps we should just leave it at that! The photo, and the man himself, are two different things!
Nicola Vincenzo Crane was born on 21 May 1958 in a semi-detached house on a leafy street in Bexley, south-east London. One of 10 siblings, he grew up in nearby Crayford, Kent.
As his name suggests, he had an unlikely background for a British nationalist and Aryan warrior. He was of Italian heritage through his mother Dorothy, whose maiden name was D’Ambrosio. His father worked as a structural draughtsman.
But from an early age Crane found a surrogate family in the south-east London skinhead scene. He was the British extreme right’s most feared streetfighter. But almost right up to his death, Nicky Crane led a precarious dual existence – until it fell dramatically apar
“ I hate the fact that’s cool to be black these days. I hate this hip-pop fuckin’ influence on white-fuckin’ suburbia.”
“You think I’m gonna sit here and smile while some fuckin’ kike tries to fuck my mother? […] fuckin’ forget it, not on my watch, not while I’m in this family. I will fuckin’ cut your Shylock nose off and stick it up your ass before I let that happen.” Derek Vinyard, American ing movie X
The similarity in thinking between Derek Vinyard in the above aggressive, frightening movie, and Nicky Crane has one major difference – the former is scripted.
The skinhead gang marched in military formation down the High Street clutching iron bars, knives, staves, pickaxe handles and clubs.
There were at least 100 of them. They had spent two days planning their attack. The date was 28 March 1980.
Soon they reached their target – a queue of mostly black filmgoers outside the Odeon cinema in Woolwich, south-east London.
Then the skinheads charged.
Most of them belonged to an extreme far-right group called the British Movement (BM).
This particular “unit” had already acquired a reputation for brutal racist violence thanks to its charismatic young local organiser. Many victims had learned to fear the sight of his 6ft 2in frame, which was adorned with Nazi tattoos. His name was Nicky Crane.
But as he led the ambush, Crane was concealing a secret from his enemies and his fascist comrades alike. Crane knew he was gay, but hadn’t acted on it. Not yet.
A boy stands in front of a poster featuring Nicky Crane
“When you’ve come from a tough background, when you get that identity, it’s a powerful thing to have,” says Gavin Watson, a former skinhead who later got to know Crane.
The south-east London skins also had close connections to the far right. Whereas the original skinheads in the late 1960s had borrowed the fashion of Caribbean immigrants and shared their love of ska and reggae music, a highly visible minority of skins during the movement’s revival in the late 1970s were attaching themselves to groups like the resurgent National Front (NF).
In particular the openly neo-Nazi BM, under the leadership of Michael McLaughlin, was actively targeting young, disaffected working-class men from football terraces as well as the punk and skinhead scenes for recruitment.
Crane was an enthusiastic convert to the ideology of National Socialism.
“Adolf Hitler was my God,” he said in a 1992 television interview. “He was sort of like my Fuhrer, my leader. And everything I done was, like, for Adolf Hitler.”
Within six months of joining the BM, Crane had been made the Kent organiser, responsible for signing up new members and organising attacks on political opponents and minority groups.
He was also inducted into the Leader Guard, which served both as McLaughlin’s personal corps of bodyguards and as the party’s top fighters. Members wore black uniforms adorned with neo-Nazi symbols and were drilled at paramilitary-style armed training weekends in the countryside.
“By appearance and reputation he (Nicky Crane) was the epitome of right-wing idealism – fascist icon and poster boy,” writes Sean Birchall in his book “Beating the Fascists”, a history of AFA.
They were also required to have a Leader Guard tattoo. Each featured the letters L and G on either side of a Celtic cross, the British Movement’s answer to the swastika. Crane dutifully had his inked on to his flesh alongside various racist slogans.
By now working as a binman and living in Plumstead, Crane quickly acquired a reputation, even among the ranks of the far right, for exceptionally brutal violence.
A young Crane shows off his tattoos with another skinhead
In May 1978, following a BM meeting, he took part in an assault on a black family at a bus stop in Bishopsgate, east London, using broken bottles and shouting racist slogans. An Old Bailey judge described Crane as “worse than an animal”.
The following year he led a mob of 200 skinheads in an attack on Asians in nearby Brick Lane. Crane later told a newspaper how “we rampaged down the Lane turning over stalls, kicking and punching Pakistanis”.
The Woolwich Odeon attack of 1980 was described by a prosecutor at the Old Bailey as a “serious, organised and premeditated riot”. After their intended victims fled inside, the skinheads drilled by Crane began smashing the cinema’s doors and windows, the court was told. A Pakistani man was knocked unconscious in the melee and the windows of a nearby pub were shattered with a pickaxe handle.
In 1981 Crane was jailed for his part in an ambush on black youths at Woolwich Arsenal station. As the judge handed down a four-year sentence, an acolyte standing alongside Crane stiffened his arm into a Nazi salute and shouted “sieg heil” from the dock.
Crane’s three jail terms failed to temper his violence. During one stretch, he launched an attack on several prison officers with a metal tray. A six-month sentence following a fracas on a London Tube train was served entirely at the top-security Isle of Wight prison – a sign of just how dangerous he was regarded by the authorities.
Nicky Crane’s legendary status escalated even more when he was featured in the cover of the album Strength Thru Oi! (1981), a compilation of crude songs of a popular punk sub-genre among skinheads. He appears grumbling, kicking to the camera’s direction. His violent attitude became an insignia of British Fascist movements. His image was printed on posters and t-shirts that were particularly popular among Neo-nazi followers.
In addition to his prominent membership in the brutal Nazi world, Crane was also a head of security of the band Skrewdriver, whose lyrics and music clearly evidenced their Fascist ideology. Craned developed a bond with Skrewdriver’s vocalist, Ian Stuart Donaldson, and together they founded the skinhead racist organization Blood & Honor.
Skrewdriver was founded in 1976 in Poulton-le-Fylde, a small town in Lancashire, England, by frontman Ian Stuart, who’d previously fronted a Rolling Stones cover band called Tumbling Dice. Skrewdriver began as a punk outfit, but quickly adopted the skinhead uniform: Bic-ed heads, white T-shirts, Levi’s, and “boots and braces” (steel-toe Doc Martens and suspenders). They weren’t overtly political at the outset, but they soon drew a strain of rabid fans sympathetic to radical politics, and drifted ever rightward. In the late 1970s, the group was dropped by their label, Chiswick Records, once their message became overtly violent; clubs throughout Britain refused to let them play.
But, though marginal, there was support for Skrewdriver and their ilk. The National Front, a far-right political party which was experiencing sharp growth throughout the 1970s, saw in Skrewdriver an opportunity for propaganda, and started its own record label, the cleverly named White Noise, on which the band released five early singles. Skrewdriver maintained an allegiance to a range of far-right groups and causes in the UK, including the National Front and the British Movement (BM), a neo-Nazi group founded in the late 60s and known for violence. BM wasn’t just lip service, either. The group had a trained elite, the Leader Guard, who spent weekends doing armed, paramilitary-style drills in the countryside. They regularly attacked members of racial minorities with broken bottles, clubs, or simply their fists.
Nicky began roadie-ing for Skrewdriver in 1983, and his association with the group boosted their reputation for brutality. Crane and Ian Stuart started Blood & Honour, a still-active, neo-Nazi political and social club, together in 1987. Crane, known for his temper and for leading ambushes against unsuspecting minorities (one judge called him “worse than an animal”) was living a double life, however. He was outed as gay after it was reported that he frequented Heaven, a London nightclub.
The outside world continued on without the presence of Crane. Groups against Fascism began to emerge, such as the Anti-Nazi League (ANL) and Anti-Fascist Action (AFA). Without their leader, Neo-Nazis could not counteract the destabilizing attacks of these new clicks. They also weren’t prepared to learn the truth about their hero. The possibility that Crane was homosexual would have never never crossed their minds, even though he secretly frequented London gay bars. Given his savage behavior and hatred towards groups that went against Fascist ideologies, no one was prepared to accept Crane’s sexual orientation.
Unbeknown to his comrades, however, a very different side to Nicky Crane was emerging.
Crane was aware of the contradictions that he embodied and was burdened by his status as one of the most prestigious icons of Fascism. To preserve his reputation, he would make public appearances with skinhead girls who pretended to be his girlfriends. Nonetheless, Crane attended a gay pride rally on 1986 and appeared in gay amateur pornography videos.
The anti-fascist magazine Searchlight was, despite its political leanings, required reading for activists on the extreme right. Each month the publication would run gossip about the neo-Nazi scene, and fascists would furtively buy it to see whether they had earned a mention.
In April 1985 it ran a feature on Crane. It mentioned the GLC concert, the south London attacks and the jail sentences he had served. The magazine revealed it had received a Christmas card from him during his time on the Isle of Wight in which he proclaimed his continued allegiance to “the British Movement tradition” – that is, violence.
The Searchlight report ended its description of Crane with the line: “On Thursday nights he can be found at the Heaven disco in Charing Cross.”
Even a neo-Nazi audience might have been aware that Heaven was at this point London’s premier gay club. Nicky Crane had been outed. And homosexuality was anathema to neo-Nazis.
But the response of Crane’s comrades to the revelation was to ignore it.
A number of factors allowed Crane to brush off the report, Pearce says. Firstly, homosexuality was indelibly associated with effeminacy by the far right, and Crane was the very opposite of effeminate.
Secondly, no-one wanted to be seen to believe Searchlight above the word of a committed soldier for the Aryan cause.
Thirdly, on the most basic level, everyone was afraid of being beaten up by Crane if they challenged him.
“I remember it was just sort of furtive whispering,” adds Pearce. “I’m not aware that anyone confronted Nicky. People were happy for things to remain under the carpet.”
Sightings at gay clubs were dismissed by Crane.
Donaldson claimed Crane told him that he was obliged to take jobs at places like Heaven because the security firm he was employed by sent him there.
“I accepted him at face value, as he was a nationalist,” Donaldson told a fanzine years later.
For his part, Heaven’s then-owner, Jeremy Norman, says he does not recall Crane working on the door: “I would imagine that the door staff would have been supplied by a security contractor and that he would have been their employee but it is all a long time ago.”
Rumours circulated that a prominent football hooligan and far-right activist had hurled a homophobic slur at Crane, who in response had inflicted a severe beating which the victim was lucky to survive.
Word of this spread among the skinhead fraternity, too.
“My mate had a shop in Soho,” recalls Watson. “People would come in to say, ‘Have you heard Nicky’s gay?’ He would say, he works around the corner, why don’t you go and ask him? Of course they never did.”
Just as some in the gay community refused to believe that a gay man could be a neo-Nazi, others on the extreme right were unable to acknowledge that a neo-Nazi could be a gay man.
Searchlight reported in October 1987 that “Crane, the right’s finest example of a clinical psychopath, is also engaged in building a ‘gay skins’ movement, which meets on Friday nights” at a pub in east London.
Crane’s sexuality might by now have been obvious to any interested onlooker, but the neo-Nazi scene remained in denial.
While his right-wing colleagues studiously ignored the report, AFA took an interest. Its activists put the pub under surveillance.
The anti-fascists didn’t care about Crane’s sexuality, but were concerned that the gatherings might have a political objective. “Here were gay skinheads wearing Nazi regalia,” says Gary. “We could never get to the bottom of it – whether it was purely a sexual fetish.”
The gay community had, by this stage, begun to take notice of Crane, too. He was confronted by anti-fascists attending a Pride rally in Kennington, south London, in 1986.
The campaigner Peter Tatchell recalls a row erupting after it emerged Crane had been allowed to steward a gay rights march. The organisers had not been aware who Crane was or what his political affiliations were.
But now they were, and Crane must have realised he would no longer be welcome in much of gay London. The gay skinhead night may simply have been an attempt to carve out a space for himself where he would not be challenged either for his sexuality or his politics.
While his status in the far right was secure, he was being pushed to the fringes of the gay community. The double life he had been maintaining was beginning to erode.
After the Bloody Sunday march, there is no record of Crane taking part in any further political activity. He had begun drifting away from the extreme right.
Friends say he had begun spending an increasing amount of time in Thailand, where his past was not known and he could, for the first time since Strength Thru Oi! was released, be anonymous.
It was until 1992 that the ruthless Neo-nazi leader publicly accepted his homosexuality in a TV documentary called Skin Complex.
The Channel 4 programme was called Out. It featured a series of documentaries about lesbian and gay life in the UK. The episode broadcast on 27 July 1992 was about the gay skinhead subculture. Its star attraction was Nicky Crane.
First the programme showed recorded interviews with an unwitting Donaldson, who sounded baffled that such a thing as gay skinheads existed, and NF leader Patrick Harrington.
And then the camera cut to Crane, in camouflage gear and Dr Martens boots, in his Soho bedsit.
He told the interviewer how he’d known he was gay back in his early BM days. He described how his worship of Hitler had given way to unease about the far right’s homophobia.
He had started to feel like a hypocrite because the Nazi movement was so anti-gay, he said. “So I just, like, couldn’t stay in it.” Crane said he was “ashamed” of his political past and insisted he had changed.
“The views I’ve got now is, I believe in individualism and I don’t care if anyone’s black, Jewish or anything,” he added. “I either like or dislike a person as an individual, not what their colour is or anything.”
The aim of the program was to explore homosexuality in different subcultures like the skinhead movement. The revelation attracted considerable press attention. The Sun ran a story with the headline “NAZI NICK IS A PANZI”. Below it described the “Weird secret he kept from gay-bashers”.
Crane reiterated that he had abandoned Nazi ideology. “It is all in the past,” he told the paper. “I’ve made a dramatic change in my life.”
The reaction from his erstwhile comrades was one of horror and fury. Donaldson issued a blood-curdling death threat on stage at a Skrewdriver gig.His appearance turned him into the object of scorn of various Fascist groups and also people who once were his friends, like Ian Stuart Donaldson, who declared with frustration:
“He’s dug his own grave as far as I’m concern. I was fooled the same as everybody else. Perhaps more than everybody else. I felt I was betrayed by him and I want nothing to do with him whatsoever.”
But according to Pearce – who by this stage had made his own break with the NF – it was Crane’s disavowal of National Socialism, rather than the admission of his sexuality, that proved particularly painful for Donaldson.
“I think that Ian would have been very shocked,” says Pearce. “He was deeply hurt. But it had more to do with the fact that he switched sides politically.
“Nicky didn’t just come out as a homosexual, he became militantly opposed to what he previously believed in.”
British Nazism had lost its street-fighting poster boy. For the first time in his adult life, however, Crane was able to be himself.
Watson recalls catching a glimpse of Crane – by then working as a bicycle courier – shortly after he came out. “I saw him riding around Soho in Day-Glo Lycra shorts,” remembers Watson. “I thought, good for you.”
Certainly, after coming out, Crane always described himself as gay rather than bisexual.
Nonetheless, his relationships with women, coupled with rumours that he had fathered a son, allayed any initial suspicions his comrades might have had. So too did his propensity for racist violence.
On 8 December 1993, Byrne took the train to London. He had arranged to meet his friend Nicky Crane at Berwick Street market, just a few yards from his Rupert Street bedsit.
Byrne was looking forward to having “a good old chat” about skinheads they both knew. But Crane didn’t turn up.
When Byrne got home, he found out why. Crane had died the day before. He was 35. The cause of death was given on his death certificate as bronchopneumonia, a fatal inflammation of the air passages to the lungs.
He was a victim of the disease that had killed so many other young gay men of his generation.
“He didn’t tell me about his problems with Aids,” says Byrne. “He didn’t talk much about it really. I thought it was a shame.”
Word had got around that Crane was ill, however. Gary recalls his shock at seeing his one-time foe looking deeply emaciated, waiting on a platform at Baker Street Tube station. Crane’s stature was such, however, that even at this point fellow passengers were careful to keep their distance.
Those who suffered as a result of his rampages may have breathed a sigh of relief that he was no longer able to terrorise them.
But his death marked more than just the end of Nicky Crane.
It also coincided with the passing of an era in which the extreme right hoped to win power by controlling the street with boots and fists.
In 1993, Crane was dead, Donaldson died in a car crash and the British National Party (BNP) won its first council seat in Millwall, east London. The various factions of the NF had by now all but withered.
The following year, BNP strategist Tony Lecomber announced there would be “no more meetings, marches, punch-ups” – instead, the intention now was to win seats in town halls. The party would try to rebrand itself as respectable and peaceful – a strategy continued, with varying success, under the leadership of Nick Griffin. Streetfighters like Nicky Crane were supposedly consigned to the past.
The broader skinhead movement was changing, too.
Watson, like many other former skins, had by the time of Crane’s death, abandoned boots and braces for the rave scene. His skinhead days already felt like a different age.
“The skinhead stuff was washed away by rave and it’s, ‘Oh yes, Nicky’s out of the closet,'” Watson says. “It’s the story of that side of skinheads, isn’t it?”
By contrast, the presence of skinheads in gay clubs and bars was no longer controversial. Shorn of its political associations, the look was by now, if anything, more popular in London’s Old Compton Street or Manchester’s Canal Street than on football terraces or far-right rallies.
Two decades after Crane’s death, says Healy, the skinhead is “recognised as a gay man unambiguously in London and Manchester”. He adds: “If the Village People reformed today there would be a skinhead in the group.”
He may be an extreme case, but Crane reflects an era in which people’s expectations of what a gay man looked and behaved like began to shift.
“Everybody always knew gay people, but they just didn’t know it,” says Max Schaefer, whose 2010 novel “Children of the Sun” features a character fascinated by Crane. “The neo-Nazis were no different from everyone else.”
It’s unlikely Crane reflected on his place at this intersection between all these late 20th Century subcultures. He was a man of action, not ideology – a doer who left the thinking to others, and this may be what led a confused, angry young man to fascism in the first place.
As he lingered in St Mary’s hospital in Paddington, west London, waiting to die, a young man named Craig was at his side. Craig was “one of Nicky’s boyfriends”, says Byrne.
According to Crane’s death certificate, Craig was with him at the end.
- Cultura Collectiva https://culturacolectiva.com/adulto/gay-neo-nazi-almost-tore-england-apart/
- Nicky Crane: The Secret Double Life of a Gay Neo-Nazi http://www.bbc.com/news/magazine-25142557
- This “white power” band has been the soundtrack of racist punk for 40 years https://timeline.com/skrewdriver-white-power-skinhead-70a54a99ee77
Let’s get one thing sorted right from the start – that is not Ross’s real name! His actual name is Parrish Charles. Why the change? Who knows!
The Ross – he’ll always be Ross to me – I’m about to write about here is not the Ross I knew in Darlinghurst in the 80s and 90s. That Ross was a handsome, funny, sometimes insecure man, with dark hair, and big, dark eyes. That Ross was generous, giving, fun-loving, even after he moved to Melbourne. If you visited there, his home was always open to you, and he looked after you. That Ross I wanted to have wild sex with, yet never did. He had a brief relationship with an ex of mine – who shall remain nameless, and will never forgive Ross for what he did! His anger and disappointment is implacable!
I am not so unforgiving. Even though this Ross is one I did not know – and probably wouldn’t have liked – I know that somewhere inside this lost soul is the Ross I used to know. I guess I sound like I’m making excuses for him, though it is probably more that I want to know that outside this, he is not lost.
I had my own battles in the 90s with ill-health, so lost contact with many. I got such a shock when I found out about the following incident.
So, to April 29, 2008…
The police issued the following Media Release on the morning of the attack:
“Man Arrested After Clifton Hill Stabbing Attack
Release date: Tue 29 April 2008
Last updated: Wed 30 April 2008
A 45-year-old man from Alphington has been arrested and remanded after a stabbing attack in Clifton Hill earlier this morning.
Parish Charles of Bennett Street, Alphington was arrested at his home at 7.30pm and has been charged with attempted murder by Yarra CIU detectives.
Detectives believe the attack on a 23-year-old Indian student, working as a cab driver, occurred sometime around 3.00am, possibly in Hodgkinson Street near Wellington Street.
The taxi driver was located lying on the footpath by two men who were walking along Hodgkinson Street about 5.30am.
He was treated by paramedic’s members at the scene before being conveyed to the Royal Melbourne Hospital where he remains in a critical condition.
Mr Charles has appeared before an out of session’s court hearing and has been remanded to appear at Melbourne Magistrates Court on Wednesday 30 April.
Senior Constable Leigh Wadeson
No one seems able to pinpoint the reason that saw him drive to the Alfred Hospital about 1.40am on April 29 that year (2008) and walk towards the emergency department without going in.
Charles hailed a taxi an hour later and asked the driver, Jalvinder Singh, to take him to a former address in Clifton Hill. When Jalvinder Singh pulled over at the address, Charles produced a hunting knife from his pants and stabbed him five times in the stomach and chest before driving off in the taxi, which he crashed nearby. “While he was stabbing me he was holding me from behind around the neck. I was in shock. I felt like I was fighting for my life,” Mr Singh said later in a statement.
Mr Singh lay bleeding in the gutter for three hours before a passing truck driver discovered him and called for help. A surgeon later described Mr Singh’s survival as miraculous.
Police later arrested Charles at his home at Alphington, where he was getting ready to go to the Alfred for some tests. Considering the sheer savagery of the attack – described as “random, unprovoked and frenzied” by Justice Curtain at the 2009 trial – it is a pure anomaly that not only does Charles not remember the attack, but cannot even come up with a reason for it! Stranger still are the possible reasons – all health related – that are given as possible causes for the attack.
At his Supreme Court trial in 2009, Justice Curtain said Charles had been diagnosed as HIV positive in 1986 and at the time of the attack he was depressed and unhappy about his treatment at the Alfred Hospital.
He claimed to be suffering from blackouts and said he could remember little of the incident.
But in a series of reports from psychiatrists and psychologists to the Supreme Court there was no evidence Charles was psychotic or suffering from a mental illness that would explain his behaviour.
At the time of his appearance in the Magistrate’s Court, just after his arrest in 2008 “Charles’ lawyer, Rob Melasecca, told the court his client had contracted HIV 20 years ago and had recently begun taking new medication.
Mr Melasecca said Charles had no memory of yesterday morning’s events.
His client had no criminal history and was horrified about what had occurred.
“He’s very much someone who is out of his comfort zone … does not know where he is, does not know why he’s (here).”
Mr Melasecca said Charles had been planning to attend The Alfred hospital for treatment when he was arrested.
He said his client needed help otherwise there would be “two victims”.
“His mental health is a very big question mark,” Mr Melasecca said.
The cab driver injured in the attack was in an induced coma, he said.
“The difficulty is the victim in this matter is in an induced coma, so he’s not able to tell us what happened,” Mr Melasecca told the court.
Charles, who was sitting side on, facing the public gallery, as he sat in the dock, was wearing blue rubber gloves, as was the security guard who sat next to him.
He had a shaved head, a goatee-style beard and appeared hunched over during the hearing.
Charles said he had been suffering severe head pain, which he compared with an “electric shock”.
Mr Melasecca asked that Charles receive blood tests while in custody, as he was due to attend an appointment at The Alfred today to be tested for meningitis.
Mr Martin ordered that Charles be remanded at Melbourne Assessment Prison, where he would be assessed to see whether he should be transferred to St Vincent’s for more intensive treatment.
Police would allege that Charles attacked the taxi driver while they were travelling in the vicinity of Wellington Street, Clifton Hill.
He then dumped Mr Singh in the street and took control of the car before crashing it into a power pole, police would allege.
Mr Melasecca said his client did not dispute the police version of events, but said his client’s state of mind would be key to the case.
“He’s in a terrible condition,” he said. “This is not going to be a case about anything other than about his intent and his state of mind.”Outside court, Mr Melasecca said police would allege that Charles caught a cab outside The Alfred hospital after driving there – but not entering the hospital – in his partner’s car.”
In a victim impact statement, Mr Singh, 24, said he tried to return to taxi driving in a bid to overcome his fears following the attack, but found he was too anxious to continue. He said he had trouble with memory and concentration, and was considering dropping out of his hospitality course as a result. Mr Singh also said he stopped playing cricket because he had trouble breathing.
Prosecutor Susan Borg said the defence had not established any direct link between Charles’ depression and the stabbing.
Justice Elizabeth Curtain extended Charles’ bail but warned she was likely to jail him at a sentencing hearing on September 30.
Throughout all this, never has the obvious question been asked – or answered – in any of the reports on this case – why did Charles leave home with a hunting knife secreted in his trousers! Doesn’t that sort of imply intent?
At his Supreme Court trial, Charles pleaded guilty to intentionally causing serious injury and theft. He was sentenced to nine-and-a-half-years jail, and will be eligible for parole in six-and-a-half-years.
The attack on Jalvinder Singh in April2008 prompted a mass blockade of city streets by taxi drivers and led the State Government to introduce better safety measures.
And, of course, one cannot ignore the terrible implications of all this on 23-year-old student, Jalvinder Singh, who was driving the cab as a way to earn money, and was an unfortunate innocent victim to this very savage attack. A fortnight ago he made what his doctor describes as a “miraculous” recovery after his heart stopped on the operating table for more than 10 minutes.
Royal Melbourne Hospital cardiothoracic surgeon, Alistair Royse, said he was amazed Mr Singh survived the attack, in which he received four major stab wounds to the chest.
“A knife wound to the front of the chest went through his breast bone and luckily missed his heart by a centimetre,” Mr Royse said. “Another went through his rib – his lung was penetrated causing five litres of blood to bleed into his chest but also an inability to breathe causing a loss of consciousness.”
When doctors opened up Mr Singh’s chest to assess his injuries, his heart stopped, forcing them to perform open heart massage for about 15 minutes. He required 25 units of blood and the medical team treating him debated whether to continue trying to save him, fearing he had been left unconscious for several hours so his brain injuries would be too severe.
He was kept in an induced coma for nearly a week.
“On Sunday we reversed the sedation and he woke up normal. It’s remarkable, so therein, I think, lies the miracle of what’s happened,” Mr Royse said.
“On paper he had no prospects of survival but not only has he survived, I believe he will make a full and complete recovery once his wounds have healed, and (he will) have a normal life expectancy.”
Mr Royse said Mr Singh’s youth, fitness and resilience helped save him.
The part-time taxi driver and hospitality student yesterday thanked the medical team who treated him before he was discharged from hospital.
“I am very glad I was treated here by the doctors and staff who have given me a new life,” he said.
He said he was looking forward to resuming his studies and had not ruled out driving taxis again. Mr Singh said he had spoken to his mother in India only once since the attack but told her he was fine.
“She doesn’t know the reality, she only knows a little bit about the injuries,” he said, adding he had no plans to tell her.
“She’ll be worried and I do not want to make her worry.”
Mr Singh said he was happy new taxi safety measures would be introduced.
But he admitted not knowing that Public Transport Minister Lynne Kosky was introducing safety screens for drivers, pre-paid night-time fares and other measures.
“The leaders know what should be done, but after this and all kinds of accidents I think improvements should be done,” he told reporters today.
“I am very glad I was treated here by the doctors and staff who have given me a new life.
“Most Australians are very good and have sent me cards. Staff from Carrick (the Melbourne institute where Mr Singh studies hospitality) have visited me daily.”
Mr Singh remembers being stabbed and collapsing but little else.
He said he would stay in Australia and continue his studies but was undecided about resuming work as a taxi driver.
So what of Ross/Parrish? If he served his time, and received parole, he would have been discharged from jail sometime in 2015. I wonder if his partner stayed the course, or was so horrified by the events that he went his own way! I have no idea where he is, no any means to contact him. I do want him to know that despite the horrifying details surrounding this event, and by no means condoning it, that as an old friend, I have not deserted him. He has admitted to the crime, has done his time, and I hope that in some way he has managed to resume his life. If we are all condemned for our past actions, then there is little hope for any of us! Be kind to yourself, my friend, and take care!
Tim Alderman (2017)
- Herald Sun, November 13, 2009 http://www.heraldsun.com.au/news/parrish-charles-jailed-over-knife-attack-on-taxi-driver-jalvinder-singh/news-story/25bcf1f3953ddca4c9bb869c9be47a0f?sv=4c30e3d48710c08b15680b250a01ff38
- Sydney Morning Herald, September 17, 2009 http://www.smh.com.au/national/guilty-plea-in-taxi-driver-stabbing-20090916-froh.html
- ABC Net 10 May 2011 http://www.abc.net.au/news/2008-04-29/jalvinder-singh-was-driving-this-taxi-when-he-was/2433442
- The Age, May 13, 2008 http://www.theage.com.au/news/national/drivers-miraculous-recovery/2008/05/12/1210444339492.html
- The Age, May 12, 2008 http://www.theage.com.au/news/national/stabbed-cabbies-miracle-recovery/2008/05/12/1210444329075.html
- Sydney Morning Herald December 8, 2008 http://www.smh.com.au/national/stabbed-cabbie-feared-he-would-die-20081208-6twy.html
- ABC Net 13 December, 2009 http://www.smh.com.au/national/stabbed-cabbie-feared-he-would-die-20081208-6twy.html
- The Age, April 30, 2008 http://www.theage.com.au/news/national/accused-has-no-memory-of-taxi-stabbing/2008/04/30/1209234918624.html
- Victoria Police Media Release, April 29, 2008 http://www.police.vic.gov.au/content.asp?Document_ID=15269
- India Voice, April 30, 2008 http://www.india-voice.com/joomla/index2.php?option=com_content&do_pdf=1&id=204
“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 written in 2001. This article has never been published.
I have come to realise, perhaps a bit late in life, that you spend far too much time bending in the general direction of things instead of sticking up for yourself and saying no, this is not what I want, or the way I want things to go!
I have decided to sue a local hospital. That I have chosen to do this has come as a tremendous shock to me, though those around me seem to have been waiting for me rectify what has been, for me, a life changing event.
By 1996 I had accepted that sooner or later, AIDS was going to get me. What I hadn’t counted on was that St. Vincent’s hospital was going to assist in my chances of survival! – and in the one ward they had where I always felt I would be safe – Ward 17, the dedicated HIV/AIDS ward.
It was a sudden change in health status that delivered me to the A&E department. I had collapsed outside my apartment building, gasping for breath, clutching my chest, thinking that a heart attack was going to beat AIDS to the crunch, or that PCP had finally caught up to me, as it seemed to do to all in my state. It turned out to be neither – I had a collapsed left lung, though being HIV, they moved me into Ward 17 after inserting a tube to keep the lung inflated. Most of us assume that we go into hospital to be cured of health problems, or at least receive a better standard of medical care to assist you to a slightly higher standard of health than you have when you enter. Well…I have to tell you it doesn’t always happen that way!
I firmly believe that some people go into health care because they truly believe in what they are doing. They truly believe they can make a difference, that they can benefit people who are ill or are disabled. These people are not professors of medicine, do not have a fancy examination room with a prestigious address, and are not heads of departments. The well-heeled medico’s who share these attribute have strings of initials after their names. They do ward rounds with a string of nose-in-the-air arse lickers and sycophants. St Vincent’s at this time had more than its fair share of the latter, and unfortunately, some of them were in HIV medicine!
Now, I don’t want to give the impression that I was just in hospital with a collapsed lung – it was more complicated than that. I was in the midst of changing doctors, so didn’t actually have a GP when I was admitted to Ward 17. My scripts for AZT had just run out, I had chronic anaemia, chronic Candida, and weighed in at about 48 kilos. In other words, I was a very sick boy. Now, under normal circumstances, with a CD4 count of about 10, they would test and examine you for ALL AIDS related illnesses – PCP, CMV, MAC, neurological and psychological problems. For some unknown reason. Sure, they treated – and eventually repaired – the collapsed lung. They tested me for PCP – negative result – and gave me a blood transfusion, but that was it. No eye examination, no dietician, no occupational therapist – no, that’s a lie, I did have one session with an OT, and though she promised other sessions – she never quite madeit back.
So I lay there for 10 days, drifting in and out of sleep, as you tend to do when you are in this bad a condition, suffering in silence the daily ward rounds with a professor who seemed more interested in prestige than care, with his little band of sycophants, who seemed to assume that this was what was expected of theM. No one seemed to particularly care, so I was thankful for friends, for without them I think I would have gone mad.
Death seemed pre-ordained at this time I felt I had outlived everyone else anyway, and that my time was drawing to a close. I had predicted 2 years when I quit work to go on the pension in 1993, and had managed 3, so in many respects I felt I had survived beyond expectation, and short of a miracle, I was going through the final stage of my life. I was, to all intended purposes, fulfilling expectation.
So, with a repaired lung, a couple of pints of fresh blood, and some Candida medication, I was discharged 10 days later. No HIV medications, no doctor. I had my discharge papers sent to a local HIV GP, who I didn’t know from a bar of soap, hoping that she would feel sorry for me, and rush me through the waiting list. Thankfully, she did just that!
Two days out of hospital, and her receptionist rang to say my discharge papers had arrived, and that even though they didn’y know who I was, the doctor wanted to see me. I would like to think, in hindsight, that this was almost like some sort of sign, as having my hospital discharge sent to her was an act of providence that probably saved my life.
As soon as I mentioned to her that my vision had been ‘greying over’ for a couple of weeks, she was immediately on the phone to the Prince of Wale’s Hospital Eye Clinic at Randwick. They promised that somebody would stay back at the end of clinic until I arrived to have my eyes checked. They thought at that stage that I had CMV retinitis, but could not be certain enough to confirm the diagnosis. I had to travel to Hurstville the next day to see a leading ophthalmologist, an expert in CMV. He confirmed the diagnosis, and by the time I arrived home that afternoon, their was a message to ring the doctor. She wanted me admitted to Prince Henry Hospital straight away.
Prince Henry added other health items to the list St Vincent’s had. On top of chronic anaemia and Candida, and my 10 CD4 cells, they added chronic bilateral CMV retinitis, and Wasting Syndrome. Pandemonium was about to strike, but at least this time I felt as though people cared. Prince Henry was much more grounded in reality than St Vincent’s, and whatever my prognosis may have been – mortality was never discussed – they went out of their way to help me. Sure, I had a drip in both arms, was being transported to Prince of Wales twice a week for intraocular injections of ganciclovir, and I was a bit of a guinea pig because of my condition – medical students must love people like me, as we become a living text book – but they did care. I had a dietician who planned meals and snacks for me, and nurses on hand to help me during my night sweats. I even had a reporter from Japan interview and photograph me, as he was doing a piece to be published in Japan. After seeing me, he was concerned that the Japanses ‘head-in-the-sand’ attitude to HIV/AIDS was something to be seriously concerned about.
To be honest, the two weeks in Prince Henry gave me a different perspective on many aspects of life. There was the guy in the room next to mine – I had a huge room to myself in Marks Pavilion, and the windows looked out over Beauty Bay – who had terminal cancer. Not once, despite whatever he may have been going through, did I hear him complain or whinge about his lot. He virtually lived in the hospital, and even had his own stereo moved in with him. And the young guy who was at the opposite end of the ward to me. He also had CMV, but fuck, he was so young, so innocent! We sat together in the eye clinic one day, and he grasp[ed my hand, cuddled up to me, and cried. I wanted to give him some hope, but I would have felt like such a hypocrite. I didn’t know if their was hope for me at that stage, let alone try to give it to someone else who I knew was worse off than I was.
Well, they saved my sight – sort of! The injections, and eventually $10,000 worth of ‘Vitrasert’ ganciclovir implants managed to save the sight in my left eye. As for my right eye, the optic nerve was damaged by the CMV, and despite efforts on everyones part, I lost 80% of the vision in it, and the impact on my life has been…disconcerting. I have regular checks every few months now, and I have to be careful not to bump my head hard on anything. The scar tissue in the left eye is so dense that they are concerned now about me ending up with a detached retina. I’ve also had two operations to remove cataracts caused by the implants. They originally estimated a 4% chance of cataracts from the implants, but 12 months later this prediction was upgraded to a 100% chance. Some odds you can’t beat.
But this has been the least of my worries. Sure, my right eye has, in some respects, compensated for the loss of vision in my left, but not entirely. It took me twelve months to adjust, but that twelve months was not without incidents, such as tripping over some tree roots in Crown Street, and landing flat on my face in front of some people coming in the opposite direction. I also tripped and stumbled a great deal as my vision tried to compensate for a change in everything, including perspective. Stairs with contrasting edging strips became ramps – at least from my perspective – and ‘I’m sorry!’ became part of my everyday vocabulary as I bumped and staggered my way around. That is something that even 5 years down the line, I have never quite gotten used to. This would not be the first time I have stated that in some respects, it would have been easier to have ended up completely blind. At least that way, I would have a white cane, or a dog, and people would know I was definitely blind, and not give me condescending looks every time I run into someone. For some unknown reason, it has always ended up my fault. I just accept.
Rules of our household – don’t leave anything sitting low on the floor, or hanging to my left when I don’t know it is there. When walking down the street, keep to my right. If you don’t keep to that side, expect me to keep moving to ensure you are there. Go into the city? Not on my own these days. As much as I love the city, and love to watch it grow, it is a place for people in a rush, not a place for people who are visually impaired. Too many people, too many doorways for them to rush out of, and too many people crushing into confined spaces. I miss it very much, but it is not a place for me anymore. I shop locally, and that is hazardous enough for me. Do anything during the peak hour rush? Not likely these days. I had to meet David at 6.00 at the Entertainment Centre, to attend a couple of concerts. I actually mapped out a way to get there that would have a minimum of people that I would have to avoid. I go to daytime lectures and tutorials at UTS to avoid travelling too and fro during peak hours. I’m also trying to get them to contrast edge-strip the black granite stairs in the Tower Building, so that visually impaired people can see where the stair edges are. That is one fight I may yet win. Oh, and I shouldn’t forget that I kick small children.
David, who is my partner, and I went for a walk down Hall Street, leading to Bondi Beach, for one reason or another – we were probably looking for somewhere to eat breakfast. Sure enough, for a split second, I wasn’t watching where I was going and the next thing I knew, this kid had run straight onto my foot as I took a step forward. He just came out of nowhere, as kids do, and I managed to literally lift him into the air with the forward motion of my step, and launched him off to the side of the footpath. Thankfully, he landed in the grassed area around some trees growing on the footpath. I would hate to think what may have happened if he had landed on the footpath itself. I don’t know who got the biggest fright – the kid, myself, the kid’s father, or David. The father came running as I picked the kid up to make sure he was okay, but the look on the father’s face said it all – It was my fault, and I should have been watching where I was going. Even an explanation that I was partially blind, and hadn’t seen the kid coming didn’t seem to sit well with him, nor did a multitude of apologies. Now, I dare say the kid probably forgot the incident 10 minutes after it happened, but It is still a nightmare with me. Whenever I think about the state of my eyes, that is the one instant that comes straight to mind. It’s not just the incident with the kid – I’m aware of that. It is that in some way, these sorts of things happen to me everyday, though fortunately with larger adults, not small kids. Despite all my precautions, despite taking my time getting around, despite walking metres up a street to use crossings or lights, despite great care at intersections I feel it is only a matter of time before I either seriously hurt somebody, or they seriously hurt me.
So I’m not just going to sit back and cop it sour anymore. Somewhere along the line, in a hospital, on a particular time on a particular day, somebody, for whatever reason, decided not to do something, and now I’m paying the price. Well, it’s time for someone to pay for their oversight, and the time to pay is NOW! My health is as good as it’s going to get at the moment, and with it being unlikely that I will ever return to full-time work, or to any job that requires me to get stressed, it is time to take action. I’m not going to ignore it anymore, or pretend that it just didn’t happen. It did, and my life has never been the same since.
Personally, I think that they, like Prince Henry, and certainly me, never expected me to live, so just doing a minimum of care in 1996 may have been acceptable practise, especially in an area of medicine that has always been cash strapped. But I didn’t die! I am well and truly alive, and the time for revenge is at hand. I hope that at the end of the day, they will learn several lessons. Never assume anything; never underestimate the strength of the human will, and mind; and never think people are just going to forget about it! We Don’t!
Copyright ©2001 (Revised 2017)
P.S: despite the solicitor instigating an action against St Vincent’s, and doing this pro-bono, I was expected to pay the bills for photocopying and incidentals. I received a bill for $1,500 from them to cover this…and being on a pension, this was the beginning, and the end, of the action. Justice never was served.
Originally published as “Not Who They Knew” in the August 1999 issue of “Talkabout” magazine.
“Easygoing”, “Always Smiling”, “A Strong Shoulder to Lean on”, “Outgoing” may all be phrases that you are familiar with, especially if you have been pigeon-holed with them, as I have over the years. This is not to say I am not all these things, just that it puts a set of expectations upon my shoulders of how I will appear to people, irrespective of my true feelings.
Towards the end of 1996, at the end of chronic illness, I had a major emotional and psychological problem on my hands-ME. I had been on the DSP for three years, I was not exactly 100% healthy, but I was certainly no longer ill. My viral load maintained itself at undetectable, my CD 4’s were stable. Combination therapy had moved the word ‘death’ quite a way down my vocabulary list. I had always had a group of peers for support years ago, but HIV had decimated that group. I felt alone, outcast, surviving with nowhere to go. I could not see a future with me in it.
Depression is a hard word to define. Ask twenty people, get twenty different answers. To me, depression was not that dark, down twisting spiral into oblivion that it is for many. Nor was it an ongoing thing that kept re-occurring over time. It was a period of intense self-doubt, a losing of self-worth, and my own values as a functioning member of the community I moved in. I wanted so much to return to life, not the life I had known, but an entirely new one, free of all the dross I had been dragging around with me, the frustration of unfulfilled dreams, and directionless yearnings.
I started (unknown to all, except by those close to me) to have black, brooding moods, periods of long silence where I would not communicate with anyone. I had panic attacks in bed at night, and developed a fear of the dark. I could not stand to travel in the subway, and avoided crowds. I saw a black future of pensions, and struggling to get by, ageing on my own, loneliness, and pills, pills pills. I remember that late one day I really needed to talk to someone desperately. I rang two of our HIV counselling services, to be told that noone was available-would I like to make an appointment for another day! I ended up ringing a friend and frantically dumping on him.
I do not like antidepressants. This is a personal thing, I have nothing against them in general, nor the people who need to take them. I already shovel enough tablets down my throat (at the time of all this happening, around 300 per week), and have no desire to add to the load. I am also, by nature, one who is capable of intense self-analysis. I knew I had severe problems, I knew I needed help. But where to start?
The major problems, ones I have had all my life, were impatience, and wanting to do everything at once. I was aware that I needed counselling. This was not an easy self-admission. I had never believed in them. I rang Albion St, and arranged an appointment. The first meeting almost justified my misgivings about them, being a rushed affair whereby I felt time limitations were more important than my need to talk out issues. Following appointments were not so. I then did three of the beneficial things I have ever done with my life. I started volunteer work at the offices of PLWH/A (NSW) Inc, and started group work through both the ACON HIV Living Unit, and the Coleo Project. The ACON HIV Peer Support Group put me in contact with people going through similar experiences to mine. It gave me an outlet to voice my opinions, and to gain the advice and knowledge of other people to handle these panic situations. The Coleo project taught me the value of self-motivation, and the management of long-term treatment taking. They also encouraged me to take up writing, it being a good outlet for emotions-published or unpublished. This led to me joining the Positive Speakers Bureau, which has been, for me, one of life’s most fulfilling experiences.
In 2012, I had a bad experience after eye surgery at Royal Brisbane Hospital. I had some very serious surgery on my right eye…the left was blind (and is now a prosthetic)…and they fully covered the right eye after the operation. Coming out of vety heavy anesthesia, I thought I was blind, had a massive panic attack and attempted to pull the dressing off. A young Malaysian nurse, seeing this happening, started yelling at me, just making things worse. They eventually xalmed me down, and readjusted the dressing to admit some light, but the situation wasn’t good. At home, I started having attacks of anxiety & further panic attacks. I wasn’t sleeping well, was waking up with a start at around 4-5am, and had to get up as I couldn’t stand staying in bed. In bed, I couldn’t wear jewellery, or tee-shirts with tight necks – I felt they were choking me! This went on for about 6 weeks, and I was getting to the point of dispair. I contacted an Anglican support service (non religious, otherwise I wouldn’t have) on the advice if a HIV service. They, in turn, then kept in regular contact with me, helped via some counseling, and introduced me to Acceptance & Committment Therapy (ACT), and through the meditation sessions, and breathing, I eventually, over a couple of weeks, worked my way through it. I also put an official complaint into the hospital, and just doing something affirmative about the cause of this problem helped with the process of returning to where I had been before the operation.
Then, in early 2015, just after my return to Sydney from Brisbane, I had another period of both anxiety & panic attacks. 2014 had been a year from hell! I had a dreadful 60th birthday, followed by the breakdown of my 16 year relationship. Some financial oroblems followed on from that, then my ex-partners (we were clise friends after the breakup) parents both became serioysly ill; I had a very serious, debilitating dose of Shingles; Ampy, our longest surviving dog at that time, died; then in early 2015 I had my blind eye removed. This had all been bottled up, and on my return to Sydney – a move I really didn’t want to make – everything crashed in! The difficulty sleeping, getting moody, feeling that everything was getting on top of me, a severe drop in my libido, and Restless Leg Syndrome in bed at night all pointed to a return of the black dog. So off to the doctor, a psychological evaluation, and some antidepreeants & a drug to settle my restless legs. I went back to ACT, and within a fortnight we returned to a more normal state.
But I know the capacity for anxiety & panic attacks is there, and that I need to ensure that I deal with issues as they come along. I consider myself lucky in some respects that it never gets worse that this. I don’t get cyclic deep, dark depression, nor do I get pushed to the point of suicide…but it is still a disturbing, disorientating and horrible place to be. Depression in any ofits forms is not a pleasant place to be in.
This is a very different person sitting at this computer today. No longer scared of the future, or what it will hold. Confident that I have both a place, and direction to move in. I cannot give answers to others going through what St. Therese called ‘the Dark Night of the Soul’, except to hang on. There is, and must be, light at the end of the tunnel.
- Black Dog Institute https://www.blackdoginstitute.org.au
- Beyond Blue https://www.beyondblue.org.au
- Lifeline https://www.lifeline.org.au
Tim Alderman ©1999 (Revised 2017
First published as “The Impossible Ask” in Talkabout December 2000/January 2001. Impossibilities…should that be a question, or a statement? Perhaps both, I feel! A bit dated now, though it does capture the mentality at that time. I still dislike the terminology of the time, and despite my opinions on some issues changing over the last 17 years, there are points here that are still relevant!
If you are newly diagnosed for HIV, and have just started treating, this article will not interest you. If you have been taking antiretroviral for up to two years, it may pique your curiosity. If you have been treating since the days of AZT monotherapy, you will not only find it interesting, you will probably relate to it.
Treatment failure is a terminology I intensely dislike, almost as much as being informed that I have ‘advanced disease’, that I am not being ‘compliant’ – read ‘you are a naughty boy and should be caned’ – and that people with Lipodystrophy have ‘Buffalo Hump’. How rude is the latter! But unfortunately, treatment failure does exist, it is a problem I am currently groping with, and I can’t think of another term for it except ‘forgetfulness’ or maybe ‘I’m Over It Syndrome’. How long have you been shovelling pills down your throat for? 10 years or more, probably. How’s your viral load and CD4 count going? The big nowhere, undoubtedly! 10 years of pill taking for nothing more than year after year of the same blood results.
“Results look really good” says doctor, “ nothing to write home about but they are really stable, which is really great news.” Well I’m sorry Doc, but it’s not really good! It’s bloody frustrating. Years of fabulous promises and unbelievable adherence (don’t like that word anymore than compliance), for the absolute minimum quality of life. No, that is not an exaggeration. You can never return to full-time work. You never know when the next illness is going to strike. Energy levels that run out mid way through doing something (even during sex). Depleted libido, side-effects, more blood taken out of you than the Blood Bank could ever dream of having, living with the left-over effects of any AIDS related illness you may have had, and a total lack of knowledge on long-term side-effects. This is not a high quality of life!
My doctors pretty good, I have to say. We have talked about these issues, and he is genuinely trying to help. I know I am no longer one hundred percent compliant, like I was, say, two years ago. And at that stage I was pushing 350 plus pills per week down my throat. There are days where I just forget, even days where because of it being such a regular habit I can’t remember if I have taken the bloody things or not. But now, there are days and times when I just can’t be bothered. If I see another 8000 viral load, or another 170 CD4 count I’m going to scream. It has been like that for years now, and is the main reason that occasionally I can’t be bothered. Doc calls it ‘Pill Fatigue’, and that sounds as good as anything to me. As he says, pills and people just don’t go together. You got it right there, Doc!
Ah, but what to do? This is the major problem. A structured treatment break (Drug Holiday sounds like more fun) has been mentioned, and I have to admit I’m tempted. God, imagine getting up in the morning, or going to bed at night without having to remember pills. Imagine being able to have a few drinks, knowing that because you are pill-less, you won’t get a grumbly stomach ten minutes after getting into bed. Imagine not having to line up in the hospital pharmacy once a month. Imagine no dietary considerations, no side effects, no trying to remember on the bus in the morning whether you took the damn things or not. Imagine heaven. Tempting, isn’t it?
We’ve discussed other options as well. Counseling or a HIV psychiatrist is one way to go. I don’t really mind, as long as I don’t have counseling that involves mothering, or having to relive my childhood AGAIN! It is so irrelevant as far as recent events go. I’m thinking about that. The trouble is, of cause, that I want either a treatment change, or to go onto a trial that may at least show some results. I always thought the end point of treatment was to show a result, not just maintain minimalism. I realize that changing treatments brings us back to the old furfie of adherence, and that getting onto a trial often means being on combination therapy of some description, and not having had AIDS. Find me someone who needs therapeutic trials who hasn’t had AIDS, and I will show you a walking miracle!
Well, I’ve got this far through this article, and I haven’t given any conclusive answers yet, have I? Frankly, I don’t think I’m going to be able to, because I don’t know what they are anymore than you, or my doctor does. In my more depressive moments years ago, I used to think it would have been easier to take the way out of most of my friends, and just die. It certainly would have been a lot less lonely doing it that way, and I wouldn’t be left feeling like a (sometimes) freak. But I don’t really see that as an answer anymore. There are more battles to come, and I don’t know why all of us in this situation fight them, but I know we will. It’s the human spirit isn’t it? To quote an Olympic cliché, it’s ‘the fire within’.
And the hope of once a day dosing, with one pill!
Originally published in the September 1999 issue of “Talkabout” under the title “Dream Chasing”. The intro below is a 2017 addendum!
This is an ongoing problem even now, but this particular rant is from around 1999! I had received an email from Pene Manolas to say that, due to funding cuts, the Colao Project was to be wound up! Our only treatment management service was closing! I was furious! In the early days of HIV, ACON provided helpful and necessary services, giving peer support to those fighting the hard battle with HIV, helping people transition onto pensions and housing subsidies, legal services, some counseling, and supporting services such as MAG (Mature Age Gays). But as time went on, they became greedier and more controlling. They hated not having control of the whole sector (along with Community Health…they were both tarred with the same brush!), so if a service wasn’t being offered under their own roof, the service would suddenly find itself without funding, so matter how well used and useful it was! Colao provided guys who survived AIDS, and found themselves on the new antiretroviral treatments, strategies for coping with their situation, how to remain compliant with the huge pill intake they had (in the day), and ways to get their lives back on track! At this time, ACON was not providing this service, and there were only vague rumours of them starting up a similar progeam! So, in the interim – providing another service was to start up – the guys who would have benefited from a service like Colao…had nothing! Once again, as so often happened in those days, they were left to fall through the cracks! The HIV sector here were always well behind in service provision, and took excessively long periods of time to grt things up and running – if they happened at all! There seemed to be plenty of money to pay excessive numbers of staff, impressive CEO salaries, and advertising campaigns that were often off the mark, irrelevant or flogging tired and long dead practices…but for the clients, the guys on the street fighting the real battles, there was little to nothing! When I was spewed out of Prince Henry hospital mid-1996 after a life-altering near death experience…nothing had been established to help me deal with a return to the world of the living! No 24-hour counseling services, no treatment management services, no one to advise me on options regarding work or education choices, housing needs etc. Considering that there were always knowledge of what was to come, our service sectors were never prepared for it, and again…by the time some of the needed services were established, many had – again -fallen through the cracks, left floundering to sort shit out for themselves. Even when services were eventually established, they often just repeated the services already covered by then defunct groups (probably also defunded!). Return to work services were a good example, with the several incarnations of these not really helping people to make choices regarding future life supports, but rehashing the old resume writing/interview techniques/how to dress for an interview scenarios! The only way I got yhe sdvise I wanted to help establish a business was to put my foot down, and demand it…there was no one set up to help me through the process! No, ACON saw themselves as the one-stop-shop for HIV services, and went to great lengths to draw needed, working organisations such as BGF & CSN under their umbrella…only to see those organisations strictly controlled, and no longer providing the much needed services they originally provided. My dislike of ACON is no secret, and yes…I put the boot in at every opportunity! They have never really provided what we heed…only what they want! Here is my rant regarding the closure of Colao:
I just love the current ACON campaign, to stop people taking drug holidays. No, I’m not kidding! It really is a smart campaign. Shame we don’t have a treatment management course to go hand in hand with it, which is really making it a waste of advertising money…again!
The closure of the Colao Project, done with little fanfare via the local press, is in actual fact a major disaster for the HIV/AIDS community in Sydney. Though sponsored by drug company money (the drug company keeping their noses out of its running), it provided the only treatment management workshops in Sydney. I was in the very first group run by Colao, in fact the group that was partially responsible for the project becoming the success it was. We were the group from which all the ‘bugs’ were ironed out.
Yet it was from this group that I learnt how to manage long term treatment taking, stress management, and self-motivation. My whole life from that point up until now has been influenced by what I learnt from Colao, and what they motivated me to do, especially in regards to my writing career. Apart from this, both personally, and through peer support, I have pointed many people in the direction of Colao.
We have to question, in the light of its closure, why in the face of a responsible, working model of treatment management did no-one else take up the banner. ACON, being an AIDS council, and doing a major campaign on how to manage treatments, should perhaps have thought doing treatment management themselves.
It’s not that I don’t personally approve of drug companies supporting, and putting money into these ventures. After all, they make the drugs that we have to take, for better or worse, to try to improve our lot in life. What concerns me is that, having put their own money into it, if they can’t see anything of value to them coming out of it, at the end of the day they will withdraw the money! Some of our lobbying groups should also have taken up the banner, and lobbied for a community take-up of treatment management. One has to ask “why was the whole lot dropped only in Colao’s lap?”.
Now let’s not confuse issues here! We are talking treatment management, not treatment support. For the latter, we have many takers-peer support groups, counsellors, and places such as the Luncheon Club, the Positive Living Centre, and NorthAIDS. I’m sure all these do a perfectly good job at support, but they can’t teach you to manage the problems. Long term management of treatment (read drug) taking is of vital importance to PLWHAs. We are not doing a weeks course in antibiotics here. We are taking hundreds of tablets every week, and are expected to do it, at least at this stage, indefinitely. This involves being able to motivate yourself to get up every day and take these tablets.
The end result of such compliance is stress, and a loss of motivation, a feeling that you have lost control, and the drugs are running your life. For those who are hale and hearty as a result of this compliance, returning to the workforce can be a major issue, with concerns centred around compliance, and side affect issues, in the workplace. To this end, Colao was invaluable, and will be sorely missed by many.
Tim Alderman ©1999 (Revised 2017)