Category Archives: HIV/AIDS

Sacrilege: Living HIV Outside The Square!

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

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

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

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

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


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

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

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

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

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

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

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

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

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

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

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

Tim Alderman (©2017)

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Australian Gay History: Paul Dexter & The Gay Army


1983. Gay Politics: Sydney’s Mysterious (and Dangerous) ‘Gay Army’Posted on July 21, 2014 by Colin Clews

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)

References

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

    Reality Check: The Politics of Blindness

    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!
    Tim Alderman

    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.

    Black Dog Rising! A Journey Into – and Out of – Depression!

    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.

     Links

    Tim Alderman ©1999 (Revised 2017

     

    Impossibilities?! 

    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!

    Tim Alderman ©2000 (Revised 2017)

    All By Ourselves: The Death of HIV Services! 

    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)

     

    Viral Games!

    Originally published in “Talkabout”, September 1999.

    In May 1999 I had one of the scariest HIV-related experiences I have had since my encounters with CMV in 1996! I literally, for a brief period of time, lost control of my feet. Already having problems with peripheral neuropathy, this just added to the incertainty and conjecture surrounding the causes. Initially, I couldn’t walk a steaight line up a footpath, but staggered from left to right with no control whatsoever. It got so severe that I eventually had to resort to using a walking stick to get around! Cassie Workman was at a loss! Thyroid, cortisol, B12, folate, a CT scan, Gallium scan all done to negative results. It took a further MRI and lumbar puncture test to reveal that at some stage during my transition from one drug combination to another, the virus had crossed the blood/brain barrier and got into my brain! By the time it was discovered, the new combination had kicked in, and problem resolved itself. It was a scare I could have done without, as the symptoms were also indicative of some very serious – and deadly – brain disorders! HIV in those days was good at throwing curve balls!



      The moral to this story is to never brag! I had been telling a work colleague of a rise in my weight to over 70 kgs, a record weight for me, and a record I was damn proud of. Within a few days of this, however, chaos had set in, and the treasured weight was going to have to be fought for.

    This bloody virus just never leaves you alone! I stare at the magnetic scan images in my hand, and admire just how sneaky it can be. The pale grey ‘clouds’ that drift over the image of my brain are evidence of its brief visitation, the disorientation and fear it caused, all too recent to be forgotten.


     It started so simply. As I have mentioned in other articles, I returned to work just 18 months ago. My health, including T-cells and viral load, had been excellent for this period of time. I guess I may have become a bit complacent, thinking good health was something I could now take for granted. As has also been mentioned in other articles, I have severe peripheral neuropathy in my feet. It is slowly progressing, and is about half way along my feet. When the staggering started, my immediate thought was that it was just another phase in the progression of the PN. I could not walk a straight line, and when walking up the street, staggered quite visibly from one side of the footpath to the other. At the time this was happening, I mentioned to people that I wasn’t feeling ‘right’, I couldn’t put a finger on what it was, it was just a general feeling that things weren’t as they are supposed to be. I was going through some changes to my combination therapy also at this time, and thought that may have had something to do with it. Well, it did! But not in the way I expected.

    The next phase of the illness consisted of a feeling of chronic lethargy. It became an effort not just to get up in the morning, but to get dressed, and to motivate myself to get up the street to get to work. I lost my appetite, and libido. Then I started to drift off to sleep on the bus in the morning, this symptom extending to falling asleep at home as soon as I sat in front of the TV, both these things not being normal for me. It wasn’t until I nodded off to sleep in front of the computer at work that I realised something was going seriously wrong. 

    A series of tests was started. I had iron, folate, and B12 tests. They were all normal. I went to Albion St Clinic and had a test for a disease called Addisons (the symptoms for this disease were identical to what I had), and it also came back negative. I went and had Gallium and CT scans, and nothing showed up. By this stage, my walking had deteriorated to such an extent that I was relying on a walking stick to get around. It was thought I may have had bio-chemical depression brought about by returning to work and suddenly finding myself with the prospect of ongoing life, so I was, reluctantly, prescribed anti-depressants. My weight dropped to 58 kgs, and I literally had no appetite at all. My partner and I had up until then a very healthy sex life, and this dropped away (quite rapidly) to nothing. He started to get very concerned, though managing to hide it. Going out anywhere with me, especially with the walking stick, was a long ordeal. The only advantage to it was that I always got a seat on the bus.


    My doctor eventually ran out of possible causes for my condition, and made an appointment for me to see a neurologist at St. Vincent’s Clinic. He put me through a long consultation, with a series of tests to check reflexes and responsiveness. During the consult, he asked me to do a number of simple walking steps like heel-to-toe, and I was unable to do them without losing my balance. His diagnosis wasn’t hopeful, telling me that it could have been one of several very nasty diseases, including one called PML (Progressive Multifocal Leukoencephalopathy). I don’t actually know what it is, but the look on his face said all that had to be said. There was a possibility of undetected Syphilis infection from years ago, but a test soon cancelled that option out. He wanted me to have a lumbar puncture, but rang me the next day to say I was to have a magnetic scan first, just to see if anything turned up. These scans are more thorough than CT scans, and more likely to show up problems.

    If you are claustrophobic, don’t even consider these scans. You have to stick your whole head inside this small cylinder, with ear- plugs in, and foam wedges to hold you steady. The machine itself makes a noise like a pneumatic drill. I took one look at it, and said ‘no way unless you knock me out’. They did!

    As mysteriously as all this started, it began to reverse. I returned to the neurologist a week and a half later, he being as surprised as I was to see I was walking again. He had received the scans, and they showed evidence of HIV infection on the brain, quite visible when viewing them.


    To say this frightened the shit out of me is an under-statement. I have always been very good with my treatments, and consider myself about 95% compliant, which is pretty good, considering how long I have been popping pills and, at times, the quantity I have had to take. Somehow, the virus had used an opportune moment between combinations to cross the blood/brain barrier. Everyone on combinations take at least one drug to prevent this happening, so it shows you how persistent the virus can be. It doesn’t so much hide as sneak around, looking for opportunities to invade various parts of us that are not so well protected. If I ever thought there was an argument not to take drug holidays, this is it! What damage it could have done to my brain if left unchecked horrifies me, especially the prospect of Dementia. They seem to think that the anti-virals brought it under control, and for my sake I would like to think the same.i

    A month after all this and I am back to normal – appetite, energy levels, libido, the whole works. I hope to return to work within the next month. It looks as though I will still have to undergo a lumbar puncture (they’ll have to knock me out for this one, too!), as they want to know what drugs I have become resistant to. Over the period of the illness my viral load did a rise, the first in almost two years. The frightening part is that within one week, it rose from 3000 to 19000. It is now back under control.

    I have lived a long time with this virus Almost all my time as an active gay man has been spent as HIV+. I have put up with, and survived, a number of HIV related illnesses. I intend at this time to live a lot longer with it. If drugs and hope are the ways and means I will have to use to follow this intention through, then that is just what I will do.     

    Tim Alderman ©2000 (Revised 2017)

    Keep It Up!

    This article on HIV-related erectile dysfunction was originally published in the December2002/January 2003 edition of “Talkabout”. Though possibly not as common a problem now as then, it is nonetheless still relevant! I don’t know that solutions have changed much, butbthey have certainly got cheaper! The end of the copyright on Viagra saw it drop in price from $80-$100 per script to a mere $10! 

    When I first decided to write a piece on HIV related impotence, I thought to myself “Hey, this is a pretty serious subject, and maybe you should treat it that way.” However, a visit to a sexual health clinic changed my mind on taking it too seriously, so here is a more tongue-in-cheek view on coping with impotence.

    Firstly, don’t go onto the Internet and hope to find any information. I visited all my regular, usually reliable sites, and found absolutely nothing. There is plenty just on general impotence, but nothing on the HIV related. As usual with a lot of the more ‘delicate’ subjects (let’s face it, nobody likes admitting that ‘they can’t get it up’, there is bugger all information. As usual with a lot of HIV-related problems, nobody thinks it is really important, or perhaps that given the right length of time, the problem will just go away. But as we all know by now, that isn’t necessarily the case.

    Visiting a sexual health clinic on the advice of my doctor – and clutching a referral – did come as a bit of a surprise to me. I don’t know what I was expecting, but it seemed like the sort of place where you would tell people that you were Mr X, and you are just here to inquire for a friend who is having problems!

    It wasn’t tucked away in a dark alley, nor was the impotency problem treated as something only related to very old men, nor just one of nature’s aberrations. It was treated like a serious medical problem, and perhaps this was the one huge realisation. There was almost a blasé flippancy associated with the consultation, which I wasn’t expecting! As to the real reasons for HIV related impotency. I’m probably no more an expert than the guys who are trying to assist those of us with this problem. Everyone does seem to agree that as people live longer and longer with HIV, it is becoming a more widespread problem, irrespective of your actual health status. The fact that there don’t seem to be any studies covering this area at the moment should be of some concern, as the one thing we can be relatively sure of is that the problem is not just related to HIV. Some experts think it is just a natural progression of advanced HIV disease; others see it as being a side-effect of combination therapy (plus all the other drugs needed to handle HIV); some think it is related to having had AIDS (if you have had AIDS); or that it is related to peripheral neuropathy, especially long-term PN. For some of us, it is a problem of having lived with HIV for 20 odd years, and getting older. My neurologist doesn’t seem to concur with the PN idea, but personally I know that it is a distinct possibility. If PN can affect the way I move and get around, if it can cause other sorts of neurological disorders, I see no reason why it could not be related to impotency. Let’s be real. Those of us who have lived with HIV for as long as the disease has been around, are still coming up with things that nobody had even considered, let alone know what to do with. And as we all know, we don’t usually fit into any of the general categories, and what happens with us, health wise, is often unexpected. So, it is a bit of ‘by guess or by God’ at the moment, in trying to pin down the causes of this type of impotency.

    The clinician proceeded to ask me the usual questions – are you in a relationship? Yes! How does your partner feel about this? Well, pretty unimpressed! I don’t think anybody would be really happy with this problem, from either side of the fence! Have you considered an open relationship? Well, that helps his problem, but it doesn’t really help mine! It wouldn’t exactly be a situation where you could go home and compare notes later on about your trade! Have you considered using a cockring? Now, I don’t know about anyone else, but I always thought these gizmos were more about aesthetics than practicalities – you know, visual stimulation and all that (not to mention adding a sizeable amount to the actual dimensions of a cock), but here it was, out of the world of sex shops and mail order, and onto a clinician’s desk. Talk about taking the erotic appeal, and the mystique, out of an object! To be told that the good old studded leather contraptions are just not good enough for this sort of problem was very disheartening. Now as to the suggested alternative, well I have to say that perhaps we should go the way of eroticism instead of common sense. A very wide rubber band! Yes, you heard that right! I was given a sample to take home and try – or a ‘medically authorised’ cockring, which I have to say, still being the owner of black rubber and leather rings, left a lot to be desired. I could see the purpose to it, but God, was it ugly! A flesh-coloured ring with a small handle on each side of it, so that it can be stretched over the erect penis, it almost looked like some bizarre love-handled item, or perhaps a sighting feature for those who can’t aim straight! 


    There was also a plethora of information on ‘Viagra’ and ‘Cavaject’. Now, both these are good products, and anyone having used them as prescribed will attest to this. However, there are drawbacks. ‘Viagra’ is not on the PBS, and at $55+ for 4 tablets, is very expensive if you are on a pension (this us no longer accurate. The copyright on Viagra expired a few years ago, and it is very cheap). You also have to be careful with it if you are on protease inhibitors. If you buy the larger size tablets, you will need a tablet cutter to split them, as they are very hard to break. But perhaps their biggest drawback is that you have to – sort of – plan your sex life, which kills any hopes of spontaneity with sex. It takes anywhere from 30-60 minutes to work (depending on your metabolism), and once you’ve taken it, you’d better hope your partners still in the mood when it kicks in; or that there are plenty of available partners; or that everyone doesn’t suddenly change their mind, and go back to sleep, because if that happens, there goes $15 down the drain! On the upside, if your partner is in the mood, you are about to give them one hell of a good time, but there is always that element of the unexpected. And waiting can be frustrating. It’s fine to tell your partner that you have just taken the tablet, but if he is ready to get into it after 20 minutes of foreplay, you could be left well behind in the stakes. Unfortunately for some of us, headaches are a side-effect of Viagra…so the sex had better be worth it!


     Similarly, problems exist for ‘Cavaject’, though initially, it works a lot quicker than ‘Viagra’, being injected directly into the penis. If you are needle-shy, forget this! You probably also don’t want to see the video the sexual health clinics give to help you decide. To start with, they use a female doctor in it. Now, don’t get me wrong! I know female doctors are every bit as good as male! It is just disconcerting that in a scenario where it is a male problem being discussed with men, it is slightly off-putting to see this poor guy in the video stretching his penis out, holding it as though it is about to spit poison, then aiming a needle at it as a female voice in the background goes ‘Very good. You are going well’. The fact that she looks a bit like everybody’s mother probably doesn’t help, either (no offence to whoever she is). Now, if this doesn’t put you off, the price, and the procedure, probably will. I managed to do a bit of stockpiling just before it went off the PBS, thankfully. It went from $3.50 for 5 injections to $80+ overnight. Again, you wouldn’t want to be wasting it on frivolous events. It does have the added plus, as I mentioned earlier, of working instantly. And boy, when it works, it works! We are talking rock hard to the point of impressive here! However, just make sure that you don’t hit any veins or capillaries on the way in, as a gusher of blood can be a bit of a passion killer. They show you how it is done to avoid this, but as with all things, we weren’t all cut from the same pattern. You also have to be careful with the needle, as you can get a bruise from a misplaced shot (or perhaps an over-eager shot!). It is a simple procedure, and it really doesn’t hurt, though I encountered a slight stinging for a few seconds just after the initial injection. I had a sexual encounter with a guy – in his home – prior to this revelation. I was already rearing to go…when he suddenly disappeared…only to return a couple of minutes later sporting a very impressinly hard erection! It is only now that I realise what he was doing.


    I’m also sure that a lot of you HIV guys are now familiar with regular injections of ‘Sustenon’, a testosterone topper-upper. It is very effective if you have depleted testosterone levels, but doesn’t serve much purpose if you fall into the normal reading range, and your impotency is caused by other factors. ‘Sustenon’ is not cheap either, being in the $30+ range. I think this is a major concern with ‘Viagra’, ‘Cavaject’ and ‘Sustenon’, in that now, none of them are available on the PBS (unless, in the case of ‘Sustenon’, you can show depleted levels of hormone). Okay, if you are a vain person with no medical problems, and you just want to show off your sexual prowess, then you should have to pay for these products! However, when the PBS definitions and classifications of uses for ‘Viagra’ and ‘Sustenon’ went through reclassification, HIV disease was NOT defined as a reason for being able to have them prescribed. The definitions have never changed, despite research that shows these are problems often associated with HIV. So, to be HIV+, and to want a healthy, normal sex life means you have to pay through the nose. If you are on a pension, consider joining a monastery! The choice is 4 or 5 ecstatic sexual encounters, or starvation. On second thoughts, I may have to think about that!

    Now, this brings me back to the brochure I walked home with after that little visit to the clinic. Not only pictures and order-form for a natty little injection kit for ‘Cavaject’, and the love-handle cockring, but also a vacuum pump. Now, last time I saw one of these items – and it was recently – was on an ‘adult only’ site (you know the sort I mean! The ones that require adult verification!), and the use it was being put to was not medical. Hell, when I used to manage ‘Numbers’ Bookshop (a lifetime ago), these were amongst my best selling items – from the cheapest, through to the elite models. I have to say that on this particular site I was on, they did show budget-wise reasons for using this devise, as two guys were using it at the same time. You could time-share with a friend I guess, but the fact of both of you wanting sex with different people at the same time is probably pretty remote, so it probably isn’t convenient to do it this way. I can see that they have a certain erotic appeal, and would probably be fun as foreplay, but imagine the extreme situations that could possibly occur. Over-pumping to start with, or getting the old boy stuck! Try explaining that in A&E, let alone telling them that you bought it through a medical catalogue.

    Though, ideally, I don’t see any of these things – apart, perhaps, from ‘Viagra’ – as totally expedient ways of overcoming impotency, it is a ‘different strokes for different folks’ scenario, and in a lot of cases, doing something is better than doing nothing. We’d all like a reasonable sex-life, and if it means going to some sort of extreme, I guess most of us would be willing to swallow a little pride, and use whatever props we have to. On the upside, on ACA a couple of weeks ago, there was a story about this guy who has been successfully trialling a capsule that dissolves under your tongue, and guarantees pretty quick results. I did ask my pharmacist about this, and he claims it will probably be a couple of years before it is available. I say let’s try and get on the trial! 

    In the meantime, I guess we are going to have to either scrape up the money to go down the ‘Sustenon’/’Viagra’/’Cavaject’ road, or stock up on appliances. Whichever way we choose, as HIV+ people we are used to being creative, and I’m sure our imaginations won’t let us down in the sex department.

    Go for it, people!

    If all else fails, there is always this alternative…


    Tim Alderman © 2002 (Revised 2017)
     

    An Eye For An Eye – Life After Cytomegalovirus Retinitis (CMV Retinitis).

    This article, recently resurrected, was originally written in 2012, as I sat in the loungeroom at Ashgrove (Brisbane) after a panic attack drove me from my bed at 5am. I have revised & reedited the piece to cover the period between then and now. The original was published in “Talkabout” in 2012.


    I shouldn’t actually be alive! And if it had been any other time other than when it was – 1996 – that would have been the outcome. However, timing and medicine are everything, or so it seemed in that period of huge leaps in HIV care and treatment. As a 42-year-old HIV+ gay man who was admitted to Prince Henry Hospital (now closed) at La Perouse in Sydney, weighing in at 48kg, with chronic CMV retinitis, chronic anemia, chronic candida and 10 CD4’s I guess you could say I wasn’t well, and the truth be known my thoughts were more attuned to the after-life than being given a future. So, blood transfusions happened, heavy dosing of drugs happened (curtesy of my current regimen) and gancyclovir injections into the eyes happened – but perhaps most importantl…the new protease inhibitors happened and in combination with my other drugs created miracles. My severely depleted CD4 count did a small, slow rise, and my 100,000 viral load slowlt dropped to 10,000. Though still very weak and sick, I walked out of Prince Henry a couple of weeks later, then spent the next 18 months getting my health – physical & mental – back on track.

    At this stage I could crap on endlessly about all the strategies that I used, the anabolic steroid therapy to treat Wasting Syndrome, the fears and uncertainties, the sheer strength of will needed to reconnect with life, not to mention the huge mental shift that drove my life off into uncharted territory and resulted in the man I am today. Blah, blah, blah!So instead of boring you with all that, I want to concentrate on the one aspect of all this that is still impacting my life today – the CMV retinitis.

    Say CMV to most people these days and you will just get a blank look. It is an insidious disease, and one that was greatly feared in the era of rampaging AIDS infections. It is a virus that pretty well everyone has present in their body, but is usually only activated in immune-suppressed people. In its retinitis form it attacks the retina, and can spread to the macula by slowly destroying the cells. It is painless, though can be evidenced by a greying of vision and the appearance of floaters. If untreated it will eventually lead to blindness. By the time it was detected in my eyes a lot of damage had already been done, and I was aggressively treated with intraocular injections of gancyclovir…yes, that does mean injections directly into the eye. What fun! At the time this was going on, they were looking for guinea pigs to trial gancyclovir implants – called Vitrasert implants – in each eye. I volunteered, had two operations to insert them, then found that the 4% chance of developing cataracts turned out to be 100%, so back for another two operations to remove them, and replace the lenses, plus some laser work. The end result of all these operations and expectations for me was that they hadn’t caught it in time in the left eye, and despite a tiny sliver of vision I was effectively blind in that eye. Despite a lot of scar tissue, the majority of sight was saved in the right eye at that time.

    It takes ages to adapt to changed vision, especially when one eye is effectively blind, so over the next 12 months I became accustomed to having accidents, including several falls thanks to tree roots bulging through pavements and bus seats that were just out of sight range. It gets to a point where you no longer get embarrassed. Both eyes appeared to stabilise, I adjusted to the changed vision and in some respects life went on. Apart from the falling over, other negative issues included an avoidance of crowds and busy places, and 3-D cinema was a total waste of time. You do adapt strategies, but it is not yourself that you need to worry about, but other people. There have been a number of occasions where I thought a tee-shirt emblazoned with the words “Vision-Impaired Person” would have been handy.

    Vitrasert Implant

    It was 2008 before I had any further problems, and that was with my blind eye. It developed what I thought was a grain-of-sand-in-the-eye irritation, so off to the ophthalmologist at RPA hospital, who then passed me onto the Sydney Eye Hospital. When specialists start passing you on to other baffled looking specialists you know you have a problem! Evidently the blind eye didn’t realise it was blind, and decided to start creating a new system of blood supply to the eye, which in turn was in the wrong places as well as increasing the pressure in the eye. There was a new injectable drug around called Avastin which cuts off the blood supply to cancer tumours, and it was decided to inject this into the eye to stop the new blood system developing. So, off for another intraocular injection. It did the job, but I was also told that the interior of the eye was collapsing, and that in time it would change colour. Oh joy of joys. Over the next 18 months it changed from a normal looking eye that just had no vision to this oddly coloured eye which made many people think I had two different coloured eyes (a genetic variance). And this is how it still looked until 2014.

    However, this is good old HIV we are dealing with here, and it doesn’t like being ignored. Just as you think the worst of your problems are over it throws another bit of shit at you. I had been told previously that with the amount of scar tissue present in my good eye that there was a real chance of the retina detaching. So, shortly after moving to Brisbane, when the good eye started swapping between clear and blurred vision and finally settling on blurred, I knew something was wrong. A visit to A&E (on ANZAC day 2012) resulted in no clear result, so off to the RBH Eye Clinic the following day. The retina was off, and floating around, and there was a scare, with them thinking the CMV had reactivated…hard to believe seeing as I wasn’t immune suppressed, had a high CD4 count and an undetectable viral load – and another scare when they realised that I had highly toxic implants in my eyes (though long inactive, as they discovered). Instead of collecting some eye drops and toddling back home as I expected, I was put straight into a ward, and within 24 hours was in the operating theatre. A bad recovery room experience with an Asian Nurse Ratchet, whereby they weren’t informed that I was blind in my left eye, and leaving me to come-to in total blackness, occasioning a major panic attack is something I could have done without. The ongoing problems of anxiety and panic attacks (and this article being written at 5am) is something I am slowly getting over thanks to counselling and a letter to RBH formally requesting they look at the procedures and communication in the recovery room. My vision is now officially classified as blind. Glasses help a bit, but it is now a matter of me adapting to a low-vision life and devising some new strategies to deal with it. I can still read, though the font is huge, obviously I can still write though currently using huge fonts to do it. In 2013 I attended Southbank Institute of Technology to do the Certificate III in Fitness. I am not only the first 59yo to do the Certificate…I am the first severely vision-impaired person to do it. Threw TAFE into a panic, as they had to develop strategies to deal with me, and make sure tutors were on-board and up to speed. As much as I loved the experience, and the youngsters around me were absolutely wonderful, I came to realise that I was way too slow at moving around a gym to be a PT, so went no further. Atthe same time, I had done white cane training, and though finding the canes handy in certain circumstances – like whacking my way through the city – it is, as a general rule, more a hindrance than a help. However, it is great for getting seats on public transport!

    In early 2015, after ongoing problems with my blind eye, and not wanting to go on infinitum with drops, I opted to have my blind eye removed. Unlike the old days, they now put an artificial ball into the socket, and attach the muscles to it, so it moves like a real eye. I had a prosthetic fitted, and to date no one has detected that it’s artificial.
    However, my vision in general is now very severely impaired. Every trip outside my front door is a potential suicide mission – not to nention ducking and weaving around two Jack Russell Terriers at home…but I still challenge the risks, and get out and about under my own steam as often as possible. If anyone wants to date me…I’m a high maintenance date these days. Being night blind, I need to be guided around, and I move very slowly and cautiously. However, it has been pointed out to me that I can still spot a hot butt from some distance away! Some Gay traits over-ride everything!

    As for the future… who knows. I am trying to develop the “living in the moment” way of my dogs by just taking each day as it comes. I have had a lot of help and support, and despite whatever may happen that will always be there.


    As they say, there are none so blind as those who will not see! I still walk my dogs every morning, I still read & write, still do my genealogy and my DJ mixes, go to gym, do the shopping, get around to local restaurants and cafes so I can’t complain. Life should always be an empowering experience, and the best way to achieve that is to own your disabilities – instead of letting both HIV and disabilities rule your life…YOU rule your HIV and disabilities! That is the road to freedom!


    Tim Alderman.

    Copyright 2012 © (Revised 2017)

    Rumination of the Day (2nd December 2016)

    WORLD AIDS DAY

    It’s the day after WAD, and as usual, I’m ruminating! For many years now I have been looking at how I now view HIV/AIDS – through the lense of objectivity. Emotion only muddles the issue, and history has a trail of misinformation, mixed objectives, venom and misunderstanding! 

    Even recently I have encountered those who, for reasons known only to themselves, have never been able to move on! The hate is still alive, the dragons still circling. I could be one of these, who still feel that the experiences of the 80s & 90s are still alive, an uncompromising hard line that leaves me stranded in a time that has passed by. Fuck knows there is a lot in my past that I have never fully moved on from – family business that could, at any time in the past, have left me sitting in a gutter, needle dangling…or in a bar, in an alcoholic stupor – and fuck knows I flew very close to the latter at one stage! More so than many, I have reason enough to be bitter, to be a victim. My experience with AIDS has left me close to blind, and there are many who would agree that that is reason enough. But, as in my latter teens, with full knowledge of my families dysfunctionality, living with a solitary knowledge of my younger brothers horrendous death, of violence and unspoken secrets, of my being gay, I made a quiet vow to myself that I was not going to let it get the better of me, to smother me, to stop me being who I would be! So to with AIDS – my survival alone was an unexpected surprise – and blindness! To buckke under, to attribute blame, to become a victim, to allow it to hold me back, swallow me up, would be saying…I do not have the strength for this, the self-empowerment whereby I would become someone who even I didn’t recognise! 

    To move on, one has to acknowledge that the past is just that – the past! Yes, what happened was dreadful – the hatred, the discrimination, the accusations, the blame, the misinformation, the segregation, the fear! We need to acknowledge – 40 years along now – that we were all scared shitless. Straight, gay, male, female, religious, non-religious, politicians, doctors, journalists, activists…ad infinitum…were all scared. Perhaps not since the scourges of the Black Death have we encountered something we all knew absolutely nothing about – not even those who, perhaps, should have known! And what does human nature do when it is faced with an unknown that can just kill at will, shows no mercy, is no respecter of life at all – it looks for scapegoats, attributes blame, hands out punishment! It just so happens that the scapegoat was the gay community, and given what was happening at that time, it perhaps should not have been surprising. Minority groups have a long history of misunderstanding, stigma, discrimination, hate and ignominy! I am not defending the direction it took…I’m not going to shoot myself in the foot…but the point is, it was quite a while back now, and as awful and relentless as it was, as a community we not only survived it, but we fought back with the tools to hand – knowledge, facts, patience and dogged determination. 

    One can’t deny that some of the negatives from that era live on. There is still prejudice, discrimination, stigma and musunderstanding! But it is also true that we don’t have it on our own – just ask any person with Down Syndrome. To hang onto the hate, and all the other negatives from that period in our history is to hold no one back but yourself! You know, we all walked in the footsteps of those that suffered, those that died! But by walking in their footsteps, when their footsteps stopped…ours continued on! To live with the negativity is to deny that a lot of good, positive, beautiful things were still going on. The community still lived, loved, and laughed. We supported each other, we were staunch in the face of adversity, we celebrated the lives of those who died with a gusto that was ever born of love. If ever there was a time I was proud to be a member of the gay community, it was through the 20 years of that horror!

    Okay, it damaged me! As a fanatical reader & writer, it chose to attack perhaps the most important assets I had – my eyes! But it also presented me with new opportunities, new roads to venture down, new challenges to tackle. I can’t carty the hate because, despite everything, my life has not stopped, nor my humour, my inquisitiveness, my talents, nor my ability to just get on with it. I no longer go to candlelight vigils, or other AIDS memorials. It is too raw, too emotion charged, to ready to rip open healed wounds. I don’t forget – those who died are too entrenched in my memories for that – but now I choose to remember in more gentle ways. What every single one of my dead friends would have wanted is for me to get on with my life. Once a year their ghosts are going to waft around, to cajole me to tears, to invoke memories of wonderful times that will stay with me forever. 

    But I’ll wake up tomorrow, and the ghosts will be gone. And just as they wanted, my life goes on. Who am I to argue with them!

    Tim Alderman (2016)