“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)
1 thought on “Sacrilege: Living HIV Outside The Square!”
Well done Tim really enjoyed this. Your legendary tenacity has served you well x