Tag Archives: death

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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Rumination of the Day: 30th December 2016

PRAGMATISM

According to my Facebook Timeline, this has geen a bad year, particularly for celebrity deaths, which have gone on right up to now…and still a day to go. A lot of those I know have beaten breasts and gnashed teeth over these losses…and that is fair enough if that is how you handle loss. However, I am not one of those! I’m not blasé about it, but neither am I caught up in a type of collective hysteria that surrounds these deaths.

I have become very pragmatic about death over the years. I am not surprised by it, nor caught up in cries of “too young”, “before their time”, “had so much more to give” or the suchlike. Death is never fair! It doesn’t give a fuck about age, sex, skin colour, fame – or lack of, health status, religion, race or any other of the intricacies of life. This year, some have died from old age, some from ongoing or sudden illnesses, some through suicide, some for reasons unknown. It seems like a random pointing of a finger…and perhaps it is.

We act as though life comes with a guarantee – but it doesn’t. There is no too young or too old: no too healthy or too inhealthy; no soo much more to give or nothing more to give; no  fair or unfair; no famous or infamous; no good life  or bad life. There is no real reasoning behind it other than just being human! 

To me, yes – these celebrity deaths are sad…but all death is sad, and always unexpected! I didn’t personally know these people. I didn’t touch them, or socialise with them. They weren’t friends or family, or relatives…or even acquaintances! I have lived through enough death – both personal and collective – in my life to last me several lifetimes. It has made me a realist about death, about its fickleness, suddeness…and finality. I don’t believe in God, so have no one to attribute blame to. It just is! There is no good that comes from wallowing in it for, after all, you can’t bring them back.

And as the ultimate pragmatist would say – none of us can escape it! It is the finality of being human! So, I acknowledge it – but then move on! It is just a reminder of the inevitability of what faces us all!

Tim Alderman (2016)


 

Functionally Dysfunctional – The Storyteller Part 2

If tears could pay our debts
If with our tears we could buy you an indulgence from all pain
If by weeping now we could do all your weeping for you
Then we would cry until our eyes were washed away

Excerpt from Wilbur Smith novel

For World AIDS Day 2003 I wrote a piece titled “The Storyteller – Stories Almost Lost In Time”.It was a synopsis of the lives of three close friends who had died from AIDS before successful treatments – as we know them now.

As someone who is accustomed to writing – in fact have a university degree in it – I find that writing flows quickly and naturally from the smallest of seeds. I have to admit that writing “The Storyteller” was one of the two toughest pieces of writing I have ever done. It took me a month to nut together 750 words, a month of anguish and more tears than I have cried for some time. It was an emotionally difficult piece to write. It was hard enough trying to decide whose lives to use for my stories, let alone revisiting photos and eulogies.. The prologue to the piece came easily, but I delayed the writing about Andrew, Stuart and Geoff for as long as possible. It made me realize just how unreconciled to their deaths I actually was, that despite everything that had gone on over the twenty seven years since the deaths started, I had never really allowed myself a period of mourning – not just for them but for all the people I knew during that period who had passed on. The unfolding of the AIDS Quilt had, for many years, served as an outlet for grief during this intense time, a way to ‘get it out of your system’, but that doesn’t happen anymore, so I store the grief, hide it away in a dark corner where it sort of sits and mocks me. The writing of “The Storyteller” was almost like a venting of 20 years of grief. I can’t go back and read it, despite being its author. It hurts too much, and I end up crying – yet again!

What I found very empowering from the experience of writing that story was the reaction of people to it. It was almost like giving people permission to grieve, almost like telling them “It’s okay to cry even now, it’s okay to relive these people’s memories, it’s okay to tell their stories”. Some found the article profoundly beautiful, some used it as a way to communicate to partners and friends exactly how that period of HIV had affected their lives. Some, like my partner David didn’t even know the people in the stories yet related so strongly to it through his own experience that he could not read past the first story. Others said they wished I had warned them I was going to do it. It cut deep, it opened wounds not just for them but also for me. I wish I could have written about every single person I knew over that time who had died, but articles do have their limitations.

In fact, the writing of this piece and a piece I did in university for an assignment in personal writing made me aware of my own mental and emotional toughness, my own ability to cope with intense grief by just cutting myself off emotionally and putting up a wall to block it out. Of course, these things always creep up on you in the dead of night, but there is never anyone to witness that vivid flash of memory, that tear that hides behind the eye, to catch you in a moment of weakness.
My capacity to block out these things is, in many regards, a product of my upbringing, and the experiences of life in my younger days.

Like many of my generation I was raised in the dysfunctionality of families recovering from the effects of World War II. My parents – let’s call them Joe and Betty, as mum and dad are now alien words – raised me in the conservative ways of parents of that period, in the idyllic environment – at least at that time – of Sylvania. Lots of skeletons rattling around in Sylvania, I can assure you! Joe never came to terms with the post-war period of the 50’s and 60’s, and despite a thin veneer of normality in our household, as I grew older I realized all wasn’t as it appeared. I had a younger brother, Kevin. He was to be the subject of a university assignment 40 years after his death.

When I was 11, Betty up and left. No word of warning, no hint of departure. There in the morning making breakfast, gone when Kevin and I arrived home from school. Within several months of her going, Joe bought his mistress into the house under the guise of a housekeeper – we must retain a respectable appearance, despite anything that was happening. Joe had a seriously bad temper, and both Kevin and I experienced his wrath with a strap huddled in a corner. The housekeeper – herein referred to as the bitch from hell – hated Kevin and I almost as much as we hated her. Kevin was five years younger than me and suffered from ADHD. This was enough for the bitch from hell to make him her direct target, and she made his life a total misery. There was little I could do to protect him. Her vengeance for taking her on was to go to Joe with exaggerated stories of misdemeanors, and as we knew – punishment for transgressions was severe. She finally pushed too far, and on the evening of the 8th December 1965 Joe took Kevin out to The Gap at Watson’s Bay and jumped over with him in his arms. Joe survived. Kevin’s body was found two days later floating towards the sea near Broken Bay.

From that day to the time of my university assignment 40 years later this subject was never discussed within my family or otherwise. It was like it never happened. Joe got off on a plea of manslaughter. I had to live with him for another 10 years, but any vestige of trust or feeling had been destroyed.that December night. I never trusted him again, and always guarded what I said, and how much I let him know about my life. I closed off. I became hard. This affected my life for a long time after, and gave me the capacity to survive. The bitch from hell never shed a tear or displayed any emotion regarding Kevin’s death. It was as though he had never existed. By the time we left Sylvania at the end of 1966 we had changed the family name. The bitch from hell had managed to alienate us from all our friends and neighbours, even our direct family. Joe committed suicide in 1978. I shed the obligatory tears and moved on. I’ve never forgiven him, and I never will.

Writing the university assignment in 2003 opened a whole Pandora’s Box for me. I had never investigated Kevin’s death, had never wanted to revisit the wound. However, in June 2000 “Sunday Life” magazine ran an article on The Gap, and the bones in the closet rattled very loudly. Among the synopsis of sad events that surround The Gap was a brief entry for 1965 – “Frederick Pickhills of Sylvania, tells Vaucluse police, “I have been over the gap with my son. I had hold of his hand.” Pickhills was charged with the murder of Kevin Pickhills, 7. Pleading guilty in court to an emended plea of manslaughter, Pickhills was released on a five-year good behaviour bond.” (NB there have been two name changes in the family over time. One to Phillips, which was initiated by Joe so his past wouldn’t follow him, and the second to Alderman by me so that my family could never track me down after the fiasco they called a funeral). For the assignment I scanned all the papers from the time – my tutor was quite concerned about the emotional impact of following up such a closeted and traumatic event – and pieced together a nightmare I had all but blocked from my memory. It was almost a feeling of freedom to finally piece it all together, and lay the bones to rest.

After Joe died, I came out. I was 25, a very later bloomer. I came out with a bang, not a whimper. I had always wondered what Joe would have done if I had told him I was gay, and sort of knew that it wouldn’t have had a good outcome. I may have left it late, but at least it was safe. I reunited with my mother. We communicated for 19 years until 1997, when I finally severed the threads of what turned out to be a futile attempt to try to reconcile some sort of relationship with her. It was never destined to be. Another set of bones laid to rest.

What I wasn’t to know when I came out was that my life as a gay man, and my life as a HIV+ man were going to run in a parallel line, were going to be intrinsically tied together. So this was what the hardening, the hiding away of all emotions had prepared me for. It proved handy I have to say. Always a strong shoulder to lean on at funerals, and to cry on at wakes. I sort of prided myself on this toughness, on this capacity to turn off. But I payed in other ways, as I found out when I wrote “The Storyteller”.

Not only have I given other people permission to grieve, I’ve given myself permission to grieve, to flush out 20 years of pent up emotion and sorrow. But not just that either – I’ve finally given myself permission to grieve for many things. I have finally relaxed the hardness, finally given in to the emotions. I’ve already ruined enough relationships with my inability to give – though mind you, it wasn’t always just me – and when I met David after a 18 month break from the gay scene due to recovering from AIDS I was at a point where I realized I needed to rely on other people, and I needed to give. I needed support, I needed to love and I needed to share. This is the relationship that is making up for all the shit. This is totally open but very secure ground for me. No more secrets, no more closet rattling skeletons from the past. I’m not quite sure if my experiences have made me functionally dysfunctional, or dysfunctionally functional. Whatever the answer, I’m now taking better care of myself emotionally, allowing these feelings to spill out rather than bottling them away, or pretending they didn’t happen. When I get to write my families story, its going to be a hell of an account.

So light a candle at home for all your lost loved ones on World AIDS Day, and tell their stories. And cry! And grieve! You have permission to perform this act of love and remembrance. After all, we don’t want them forgotten. They deserve better than that.

There is the full story of my brothers death, in all its frightening facts, at the end of my blog, titled “Kevin Pickhills – The Unspoken Name” should you be interested.

Tim Alderman
Copyright 2013

Hand writing storytelling