Tag Archives: AIDS

The Terrifying Truth About HIV Long-Term Survival!

The harsh reality is that the only people really qualified to comment on long-term survival are – long-term survivors.

Being a HIV long-term survivor is a bit like being a Vietnam veteran…more often than not you feel delegated to the sidelines of history. Like the Vietnam vets, we fought a socially unpopular and unacceptable war, and like them, our continuing presence is a reminder of things that many would sooner either forget, or just not acknowledge.

That is a harsh – and raw – assessment, and I can see hackles rising already amongst those who choose to observe it through rose-coloured glasses. The harsh reality is that the only people really qualified to comment on long-term survival are – long-term survivors.

Yesterday (June 5th) was HIV Long-Term Survivor Awareness Day. I can’t say that I didn’t personally feel a certain…pride…not the right word, though I’m hunting for the right one…that at last there was an acknowledgement of my part in HIV history. I posted the event as a Facebook status update, and I’m truly humbled by the response from my friends, and at the same time reminded that there are others in my current social “circle”who are also chalking up survival terms equal to my 36 years. Yet despite the acknowledgement, the most telling word to me was”Awareness”! And perhaps that word, more than any other, takes us back to the start of this article. It is an important word, as it suggests – very strongly – that we are the forgotten, those of HIV “past”, and our very existence needs to have attention drawn to it; that there needs to be a reminder that we didn’t all succumb to the ravages of AIDS.

Reality hurts, doesn’t it! And that really is the reality of long-term survival. To be honest, I don’t think anyone knows what to do with us, apart from just leaving us alone to muddle through. On the general overview of HIV history, and considering the numbers of those who died – and continue to – as a result of AIDS, the numbers of us who have survived 20 years or more are small. We are now a disparate group, spread far and wide by the great diaspora that resulted from HIV diagnosis in the day. We are no longer concentrated in the areas of ground zero for the HIV/AIDS pandemic, and in many respects that is a major reason for our being in the background of modern day HIV.

I don’t want to call this “awareness” day tokenistic…but, recognition of the sheer tenacity of HIV long-term survivors has been a hell of a long time coming! Considering that those of us with early diagnosis, who were still alive in the late 80s/early 90s were already long-term survivors…it’s recognition that is – like so much in HIV – well and truly overdue!

I have attempted to convey the harsh reality of long-term survival in past articles, and in my talks when I was a speaker for the Positive Speakers Bureau (PSB). Myself, and other speakers, whose history went back to the key points of HIV in Sydney were always in demand, as we were the living history of HIV and AIDS, the harbingers of the tales of horror, stigma, discrimination, political and religious turmoil, and the community response to the pandemic. But over time – I was a speaker for 12 years – I saw this group slowly dropping away for various reasons, and by the time I chose to retire from speaking I was one of the last of these “history” speakers. By that time, I personally felt that HIV in its modern guise was leaving me behind, lost in its dust as it moved into new territory. A HIV diagnosis still came with its fears and insecurities, but it was no longer a death sentence.

To be honest, I don’t think anyone knows what to do with us, apart from just leaving us alone to muddle through.

So, who are these people who are having “awareness” drawn to them? I can only speak for myself; can only put a personal perspective on HIV long-term survival. Perhaps the reality of it has always been something I have downplayed, in an attempt to NOT come across as a victim! The true reality of the horror years was TERROR!

My CMV diagnosis in 1996 filled me with terror! It was the ultimate reality that I was now on borrowed time. But even before that time, it was terrifying to get what was a death sentence in 1985! It was truly terrifying to watch the horrendous deaths happening around me on a daily basis! It was terrifying to know that that was what could be in store for me! It was terrifying every time I visited the doctor, every time I had a blood test! It was terrifying to know that treatments were limited, and of short duration! It was terrifying to be subjected to the side-effects of huge dosages of same treatments – side-effects I still live with today! It was terrifying visiting friends and lovers in hospital, knowing each kiss could be the last! It was terrifying to find myself losing weight, and trying to hide the fact under baggy clothing! It was terrifying to find myself the figure of HIV discrimination in my workplace, and powerless to do anything about it! It was terrifying to realise I could no longer go on working! It was terrifying after a lifetime of independence to realise that I would need to go onto DSP, and housing subsidies! It was terrifying watching myself head towards alcoholism, chain smoking and life in the fast lane to deal with everything that was going on – uncontrollably – around me! It was terrifying to find myself in hospital for the first time – a collapsed lung! It was terrifying to lie there for 2 weeks, having Sandy from the Oxford Hotel visit another friend and suddenly stumbled upon me! It was terrifying to see – very briefly – the look in her eyes! It was terrifying to think I could be there for reasons of HIV – yet denying it…I would go home…life would go on…yeah…right! It was terrifying to live the 24 hours between my possible CMV diagnosis, and its confirmation! It was terrifying to know that this was a reality- AIDS! It was terrifying only hours after that, getting off a bus at Prince Henry Hospital at La Perouse, and wobbling towards admissions…and thinking…what the fuck! It was terrifying to realise the reality of your health status; 10 CD4 cells, 48kgs weight…could that be right? Chronic candida, chronic anaemia, chronic CMV retinitis! It was terrifying to realise I was dying! It was terrifying to lie again in a hospital bed with nurses, and drips, and medications…and wondering if it was all worthwhile! It was terrifying finding myself at POW the next day, having drugs injected directly into my eyes! It was terrifying that day…and every day after! It was terrifying to sit in that waiting room days later, holding the hand of another guy going through the same thing, trying to reassure him as he wept, a reassurance I didn’t feel myself! It was terrifying trying new drug combinations, not knowing if they would be successful, or in time! It was terrifying to realise I accepted my fate, and was not frightened! It was terrifying to be told the combination had worked, and I’d soon be going home! It was terrifying to realise that I felt robbed, felt that I didn’t deserve to be spared that which so many I loved had not been saved from! Terrifying to realise I was going back to a world I no longer knew! Terrifying to realise that in many respects, I was now a freak…someone who just didn’t fit in! It was terrifying to know that no one, no individual, no organisation, was prepared in any way for the return of the living dead! It was terrifying to sit at home…lost, alone, isolated, unsure, unknowing, afraid! It was terrifying to have the reality of ongoing life, of being whisked from deaths door! It was terrifying going through the panic attacks, the anxiety, the depression! It was terrifying to discover that every one was so unprepared for “us” that necessary help was not available when we needed it! Terrifying to be taking massive numbers of drugs – 3-4 medications, with anywhere from 4-6 pills for each medication, 3 times a day (with dietary and time compliances on them), plus prophylaxis, plus pills to control side effects! It was terrifying to find I needed medication compliance counselling, return-to-life counselling, peer support groups, weekly clinics, specialists! Terrifying that I felt myself useless, at a loose end, disconnected! Terrified to realise I wanted nothing to do with life as it had been – so few friends survived the ravages of AIDS, and those not infected had no point of connection with me, and where I now was. I cut back my drinking, stopped smoking, adopted a healthier lifestyle, decided I wanted my life to head off in different directions to that which it had been going in! It was terrifying to find that there was no one to help me do that, and despite being at the forefront of a needs assessment project concerning the return-to-work requirements of others like me, the reality was that help was a couple of years away! It was terrifying to have lost the sight in one eye, and a good deal of the sight in the other due to the CMV, and learning to deal with that, and its uncertainties! It was terrifying to fall flat on my face on footpaths due to lack of depth perspective; tripping over tree roots, or low street benches, or falling down steps because I could not see the edge; It was terrifying going through the surgery to have Vitrasert implants put in my eyes to negate the regular intraocular injections, then surgery to remove the cataracts caused by same! Terrifying to get the Deca-Dorabolin injections to help put weight back on! Terrifying to return to a normal job – albeit temporarily – knowing that it made access to doctors appointments and hospitals (for drugs) very difficult! Terrifying to find myself collapsing in a gift store, and unable to use my legs…and even more terrifying to find the store owner dumping me in the gutter under the illusion I was a druggie…and everyone else ignoring me – then finally managing to walk again, only to collapse in the middle of Bondi Road on my way home! Terrifying to find I was losing my ability to walk a straight line, but drifted all over the footpath…and no one knew why! Terrifying going through many tests and scans- with dire predictions of what was happening in my head – to finally ascertain that THE virus had jumped the blood/brain barrier and was resident in my brain! The terrifying wait for it to resolve itself! Terrifying to go out to a pub for the first time after an 18-month recovery period! Terrifying to know I knew no one in the pub! Terrifying to go home with someone despite a previous very promiscuous life! Terrifying to get into a relationship again!

Terrifying! Terrifying! Terrifying! I could go on and on with the lists of terrifying experiences over this period, but the word count would be astronomical! Suffice it to say – terror had a name…HIV/AIDS! No one diagnosed these days will – I hope – ever have to go through it.

Survivor guilt was something that came later, after all the pandemonium of getting my health back on track quietened down, and left me with time to think, to mull over the events just past. It felt so unfair that I was still here! Felt unfair that, having prepared myself to die, it hadn’t eventuated, and I was left to continue mourning for those gone, continuing to live thanks to the hoped for medications that others hadn’t managed to hang around for! It was unhealthy thinking, but it happened anyway! More counselling to reconcile that!

So – has the terror stopped? For me, not really! A detached retina, and complex surgery to replace it in 2013, and the removal of the blind eye -it is now a prosthetic – in early 2015 has reduced what was bad vision even further. I joke that every time I walk out onto the street, I take my life into my hands…but it is, in reality, no laughing matter! It is quite frightening! It restricts what I do in some respects, but I deal with it. However, the fears of further detachments – I had one scare recently – or anything else that may affect what little vision I do have is always there.

However, it hasn’t all been terrifying over the last 22 years. I’ve taken control of my own health, I’ve reeducated myself, and fulfilled a few frustrated ambitions. I’ve reconnected with some old mates through social media, and it pleases me to know that not all disappeared like many did. I’m in a happy place as far as everyday life goes.

I hope this gives those that bother to read it an “awareness” of what long-term survival is really about. It would be fulfilling if something could be set up to make us more visible, less confined to the sidelines of HIV. I don’t have an answer to that conundrum only to say that it should have nothing to do with sitting in a circle, knitting and discussing HIV! Now that is a truly terrifying thought!

Tim Alderman © 2018.

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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)

An Outsiders Overview of the HIV “Industry”

This year marks, for me, 33 years of living with HIV/AIDS…though now it is just HIV. I consider it a landmark, as back in 1996 I was admitted to Prince Henry hospital with chronic CMV retinitis, chronic candida, chronic anaemia, wasting syndrome (48 kg and going down), 10 CD 4 cells, and no immune system, and was not supposed to leave…at least not under my own steam. I did, thanks to advances in medications at that time, very aggressive treatment and a lot of will power. I don’t give a fuck how negative many HIV+ guys are about life with HIV. For me, this was the great singular event of my life, a pivotal point that resulted in life-altering decisions, a mental overhaul, and the knowledge that there was a hell of a lot more to life than HIV. It altered the course of my life, and for better or worse I have never looked back.

I was a speaker for the Positive Speakers Bureau for 12 years before realising that when you continually tell a story you start doing it by rote. The time came to opt out before it becomes totally meaningless. I have also written for “Talkabout” magazine (the flag ship publication of Positive Life NSW – formally PLWHA NSW Inc) for 15 years, as a features writer and a columnist. I also spent many years on the Publications Working Group. As a writer I see my role as not only to inform people, but to provoke debate, at times to be opinionated, to raise questions, to address abuses and unfairness and to be, when required, controversial. Unfortunately, my time with “Talkabout” taught me that to get published in a HIV publication you need to walk the safe road. To be controversial is to be tolling your own death knell. Mind you, this censorship has nothing to do with the editors who, in my experience, have been nothing but supportive. Community Health and a certain AIDS council provide funding to the magazine, so to poke your nose into sensitive areas will ensure your censure and non-publication.

As a HIV+ person writing about HIV issues I have always found my hands tied. I have written two extremely controversial articles on HIV Issues over the years. One, on Options Employment Services using HIV clients as a free work force in the guise of “work experience” was so watered down after threats of suing PLWHA, the editor and myself (I truly wish they had) that by the time of publication was a mere shadow of its original fiery tirade…despite the fact that I had evidence of this going on.The manager even took me aside and “suggested” that I quieten down my opinions as they were providing a service to the HIV community. Shortly after, they went broke and disappeared. The second article was amongst the best pieces I have ever written, and covered the controversial area of bug-chasing (HIV- guys who deliberately have unprotected sex with HIV+ guys in the hope of contracting HIV). The magazines working group deemed that by writing about bug-chasing I may have been promoting it amongst a certain sector of the community. Considering that the practice is well documented, is acknowledged and exists I failed to see how being informative about it was in any way promoting it…oh shit! I forgot that community health and certain HIV organisations wanted to keep their heads buried in the sand about the issue…and they held the purse-strings. Censorship is alive and well within the HIV community and always has been. Want to tell the truth about what is going on or want to expose something? Not on their watch!

But despite this I continue to write, though I keep it to the more nondescript these days. I do enjoy being published! Since moving to Brisbane I have been phasing out my writing for “Talkabout” (which after 15 years of being published in pretty well every issue, has gone unacknowledged by the organisation itself, though not by the editors), and have started writing for QPP “Alive”, the magazine of Queensland Positive People. Same story, different place as far as funding goes, I’m afraid. Nothing controversial will be coming out of here either.

33 years ago at the start of the HIV shit fight, people never questioned anything about treatments, definitions, philosophies, or courses-of-action. We were in crisis mode and anything was better than nothing. We let a lot happen that in more sane times, in more accountable times, would never have been allowed to happen. This far down the line it is time to start asking questions, time to demand investigations and redefinition into many aspects of treatment, time to look back at some of the historical record and say “we were wrong”, and set the record straight. I no longer allow my doctor, or the HIV establishment, or the drug companies to dictate my path to health for me. I follow my own path, which is dictated to by knowledge and experience. 11 years ago I made a decision to halve my daily medications, and dose myself once a day only. Considering the negative impacts of huge amounts of HIV medication on the body I decided to take a risk. Well, this far down the line my health has never been better (though diet and exercise also contribute to that), my viral load has remained at undetectable, and not only has my CD4 count remained stable, it has in fact risen considerably. In fact, on my blood tests all other readings – except CD4/CD8 – are within range. Considering the recent emphasis on drug regime “compliance”, and considering my own circumstances, I am forced to ask – controversially, naturally – if the compliance issue is being driven by HIV specialists, or by the drug companies who stand to make a fortune out of HIV drugs. I will leave that question in the air for you to mull over and answer for yourself. This is a personal opinion, and one I am entitled to.

With the release of the brilliant “Dallas Buyers Club” the truth about AZT is finally out there. Pressured by my doctor to go on it in the latter part of the 80s, it is the one decision of my HIV care that I regret. I had read the report from the “Concorde” study in France, I knew it was described as “Human Ratsac”, yet I still finally gave in, and witnessed the immediate decline of my health as it bashed my immune system into submission. Needless to say, the long-term affects are disabling, and were not worth the risk. I still hear those who work in the HIV “Industry” – as indeed it was and still is – banging on about how it kept the wolf from the door – it didn’t! It poisoned and destroyed our immune systems, and left us vulnerable to opportunistic infection! It effectively killed many of us. As a drug to assist with maintaining CD4 counts it was a total and complete failure! And I am not the only one to say so! Ask any one who survived AIDS their opinion on AZT! Minor control of HIV did not start AZT situation. How the FDA in America handled the AZT situation and allowed wed the drug companies to dictate treatment options, block other drugs put out by rival companies, and chose to ignore or acknowledge research from overseas was a disgrace.

Even now in 2014 ignorance lives on. I continually hear, read and see HIV being described as AIDS! It is NOT AIDS – it Is HIV or HIV+! For fuck sake get your facts right! HIV is a viral infection, and AIDS are as the initials infer – Acquired IMMUNE Deficiency Syndrome! They are infections contracted by a breakdown of the immune system! The two do not necessarily go hand in hand, and you can have one without having the other. People undergoing aggressive cancer treatments which knock the immune system around are left vulnerable to the same infections triggered by AIDS in the plague years. Drug addicts also.

There are – and I am not being unkind nor ungrateful – those who have worked in the HIV Industry for too long. They are burnt out, and out of touch. If you only wander in HIV circles, you will only know that singular perspective. These people are indoctrinated, lacking in vision, and single-minded in their approaches to HIV and its management. They are blinkered, and only ever spiel forth statistics and the same information that we have heard for the last 30-odd years. They seem incapable of acknowledging different perspectives, new ideas, or revisiting and re-evaluating the old philosophies and education. Without an insurgence of new blood, HIV is in danger of stagnating and just at a dead end. Their current publicity of “Ending HIV” is a fantasy, and they know it. As long as HIV is in Africa, and in countries like Russia and China where education is almost non-existent or played down, HIV will never end. Empty words to seem to appear to be doing something, is just a waste of money. The HIV Industry seems to be very good at this. Always about 2-years behind actual need – just look at the employment needs of AIDS survivors in 1997/98 – when services were introduced they were way off course. You can only have so many programs that teach you how to write a resume, or attend an employment interview. Every single return-to-work session I went to do talks at had the same people in them. They just moved from one group to another, never putting the teaching into action. Where was the advice for people who wanted to be re-educated, or start a business, or upgrade a hobby,or buy into a franchise? It was non-existent. These people were the ones who fell through the cracks for lack of support and services. This has always been an ongoing problem. Naturally, the lack of funding is always blamed – though enough money to pay huge salaries – when really it is a lack of foresight, and imagination. Of course, everything is now wrapped up under the umbrella of Community Health, so any hope of imaginative thinking is now out the window. Those who hold the purse-strings control everything. It is a sad state of affairs. Groups like “Positive Life” no longer acknowledge their roots, nor do they move in the directions set down by the original founders. They are out of touch with their memberships, are indeed losing them. In the race to save money they are dropping resources that keep everyone active within the group. Even Positive Speakers Bureau inductees are now told what to talk about, and bang on about the same old messages and sprout the same old statistics. The trouble is…no one gets sick any more, so there is nothing to talk about for an hour. Perhaps it has outlived its use.

If one has to be totally frank, service delivery, information and services are no better now than they were 20 years ago! In many cases, they are worse. One friend of mine complains of the lack if easy access to HIV meds, and he has to spend a lot of time travelling to obtain them. He also comments on how he and his partner feel isolated and-reclusive due to no social groups to mingle with, and the constant heed to continually go through your medical record every time you change providers. Pretty sad state of affairs considering he only lives in Canberra.

Being my 33rd anniversary of life with HIV, and with World AIDS Day approaching I have written a personal retrospective of that period hopefully for publication around that time. It is 2,500 words long…not a lot of words for 33 years. If you are interested, follow the link. Not quite as controversial as this!

https://timalderman.com/2013/06/05/getting-on-with-it-a-31-year-retrospective-of-life-with-hivaids/

For information on the Concorde Trial – http://aidsinfo.nih.gov/news/5/concorde-trial
Tim Alderman
(C) 2014

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Seeing In Time

This article – now edited – was written in 2001. I intended to sue St Vincent’s for causing my loss of sight by not testing me for CMV in 1996. I had been given a list if solicitors by HALC (HIV/AIDS Legal Centre), and had picked one out. It was pro bono, and I had several discussions with him. However, charges such as searches and photocopying etc were my responsibility and when the first bill for $1500 came in, I just had to drop it. 13 years on, the predicted retinal detachment has happened and a lot if other shit besides. I am now contemplating having my left, totally blind eye, removed and replaced with a prosthetic. What happened here was just an introduction!

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 50-something 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

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Getting On With It! A 33-Year Retrospective of Life with HIV/AIDS

The challenge of writing about 33 years of living with HIV/AIDS isn’t so much to write tomes about what actually was witnessed over that period. That is easy to do, and I could ramble on forever about it. The challenge lies in being objective and succinct, to tone down the schmaltz and sentimentality and cut to the chase. Not as easy as one may think, as these were the most challenging, relentlessly ruthless and heartbreaking period of my life. But if survival is the gauge of ones strength and tenacity, then I have come out at this end of it with flying colours. Indeed, the cup is half full!

So what was it really like in 1982 to be reading snippets in our local gay press about this mysterious illness in The States that seemed to be targeting gay men who frequented the saunas, and quickly killing them? Well, cynicism and disbelief to start with, and the surety that within a short period of time they would find an antibiotic to clear up yet another STD. Soon the snippets were to become columns, then pages as the mysterious and deadly illness leapt from the shores of America and found its way here.

Our response was mixed. The first recorded case of HIV at home was 1982, and the first death in 1983. We had our usual ratbags who yelled and screamed about God’s vengeance on the evil, sick and perverted gay lifestyle (obviously a different God to the compassionate, all-forgiving one that I had heard about), the advocates of hate who demanded quarantine for all infected persons, and those who either quietly or vocally wished that we would all die or just go away. Not that easy folks! Thankfully, common sense prevailed and both the government and the grassroots gay community combined to put both AIDS Councils and NGO programs in place. Our quick response was instrumental in Australia always being at the forefront of HIV/AIDS care. Within 2 years every state had an AIDS Council under the national umbrella of NAPWA (National Association of People with AIDS), and the formation of support organisations such as The Bobby Goldsmith Foundation, Community Support Network (CSN) and Ankali. Without these organisations life would have been grim for those infected. In 1985 testing was introduced. It was a bit of a strange affair in the early days. Due to hysteria and discrimination no one wanted their personal details on a database, so you chose a name, and Albion Street Centre issued you with a number that then became your ID. You had a blood test, and waited for two weeks – talk about high anxiety – to get your result. I had a mystery illness in 1982, a flu-type illness that wasn’t the flu, and already suspected that I had sero-converted and was going to come up HIV+. I was right. Counseling? Oh yeah, we had a lot of that back then. “You’ve got about 2 years to live”. Shrug shoulders “Okay”. And off we went knowing the inevitable was rapidly approaching, and it was time to PARTY!!! What else could you do? However there were horror stories. The disgusting treatment of young Eve Van Grafhorst is something for all Australians to be ashamed of. Born in 1982, she was infected with HIV via a blood transfusion. When she attempted to enrol in her Kincumber pre-school in 1985, parents threatened to withdraw their children due to the (supposed) risk of infection. The family was literally hunted out of town, and forced to leave the country and go to NZ. I will never forget the sight of this poor, frail girl on her way to the airport. I, like many others, was horrified that this could happen in Australia. Thankfully, her NZ experience was quite the opposite, and she lived a relatively normal life until her death in 1993 at 11 years of age. Her parents received a letter from Lady Di praising her courage.

Meanwhile, the Australian nightmare was well and truly hitting home. My first close friend, Andrew Todd, died in 1986. At that time there was no dedicated AIDS ward, and Andrew was shifted between wards as beds were needed for other cases. He died on Boxing Day in A&E at St, Vincent’s. I had the sad duty of ringing all my friends at a party to tell them the sad news. Party pooper recognition acknowledged! Ward 17 at St Vincent’s eventually became the dedicated AIDS ward, and for the next 10 years was never empty. Palliative care was through The Sacred Heart Hospice. Hospitals such as Westmead hit the headlines for all the wrong reasons; full contamination clothing for those working with HIV people, rooms not being cleaned, meals left outside doors. Even the poor old mosquito copped a hiding as a means of contamination, along with toothbrushes, glasses, cutlery and crockery. An advertising campaign featuring the Grim Reaper bowling down poor people created an apocalyptic vision of HIV that scared the life out of everyone. It was quickly withdrawn. In the interim, my 2 years became 4, which became 6 followed by 8. My life became a haze of alcohol and cigarettes, not shared alone.

In the 80’s I held a lot of parties with anywhere from 40- 60 friends attending. By 1996, if I had tried to hold a party I would have been lucky to have dug up 10 friends to attend. In the blink of an eye my social circle was effectively wiped off the face of the earth. Hospitals, hospices, funerals and wakes became the dreaded regular events. It was death on a relentless and unforgiving scale. The Quilt Project became the focus of our sorrow, and it’s regular unfoldings and name readings were tear-filled times of remembrance and reminiscence, along with the yearly Candlelight Rally. I attended until I became so empty that I could no longer bear it. I submitted my names but no longer attended. In the early 90’s four friends died close together – two from AIDS, one a heart attack and one cancer. This was a particularly heavy blow as two of these friends had been regular “gutter drag” partners, and that part of my life effectively ended. In a perverse way, it seemed strange that the Big A wasn’t the only thing stalking our lives.

Despite its reputation for being human Ratsac (the Concorde Study in France named it such, after conducting an unethical trial; turns out they were correct!) I started taking AZT when my CD4 count started to take a dive. Hard work, long hours, heavy drinking, chain smoking, a shit diet and emotional turmoil didn’t help. Pub culture became lifestyle. Did several drug trials – D4T, which was sort of successful, though the same class of drug as AZT. Also p24 VLP (Very Light Protein) which proposed that stimulating the p24 antigen may help control HIV. Total waste of my time. It did nothing. We started alternating drugs – 6 months on AZT, 6 on D4T, 6 on DDI, 6 on DDC. Perversely it seemed to keep the wolf from the door. Dosage was huge. Everyone on it ended up with kidney problems and peripheral neuropathy. Prophylactics added to the drug burden. In the meantime there was no HIV dental service and our teeth rotted or fell out due to bouts of candida. I left work in 1993 after being seriously knocked around by viral pneumonia which should have killed me…but didn’t. I was shuffled onto the pension, and given rent subsidised housing by DOH. The subsidy seemed like a good idea at the time. After all, weren’t we all eventually going to be killed by the Big H, so no one would be on it for that long? Famous last words! My alcohol consumption and chain smoking increased, if that was possible! Was losing weight at an alarming rate, and naturally no one noticed because I took to wearing baggy clothes to disguise it. Nothing quite like being delusional. Moved from Darlinghurst to Bondi. Nothing like moving away from the scene to help your health…not! Collapsed in the street, and admitted to St Vincent’s not with PCP as suspected but a collapsed lung. Two weeks later and a change of female GP’s saw me back in the doctor’s rooms while she read my hospital discharge report. Had they tested me for CMV retinitis? No! Was I having trouble with my vision? Yes, but I do wear glasses. Guess what? We’re sending you for a little holiday at Prince Henry Hospital (now closed). I was a little bit sick. Chronic CMV retinitis, chronic candida, chronic anemia, had 10 CD4 cells and weighed 48 kgs. Mmm, prognosis was not good. Well, it had been a good life. I was certainly joining a band of party people. But no! Life hadn’t finished with me yet. Protease Inhibitors had come along at an auspicious time, and within a fortnight I had been stolen from the arms of death. Mind you, that fortnight had been no picnic. Ganciclovir injections into the eye, Deca-Durabolin injections to help put weight back on, blood transfusions, and enough finger prick blood readings to last me the rest of my life. And the problems had just started for this return-to-lifer. Not dying when you are supposed to really fucks up your head space.

So started the next round of therapies. Peer Support groups; counselors; Caleo (a treatment management group who help you maintain the impetus to take the billion pills a day we were taking); clinics; dental care (now up and running); volunteer work (to keep one sane). What started out as volunteer work at the then PLWHA (NSW) Inc (now Positive Life) turned into paid employment as a research assistant. I started writing for “Talkabout” magazine, joined the Positive Speakers. Bureau, and learnt to use a computer. A couple of stints back in full-time employment made me realise that big changes needed to be made with my life. By this time my health was pretty well back together. A couple of nights out pushed home just how few people I knew, however did lead to meeting my current (now ex) partner. A brief encounter with Indinivir sludge in my kidneys (which involved having a stent inserted then removed) also made me aware that for HIV+ people the unexpected can happen at any time. Yet another change of doctor. Self-empowerment had become an important issue, and I wanted a say in my health management, as distinct from being dictated to. Big changes were about to happen.

In 2000 David and I did a big (and expensive) holiday to the Red Centre. It was an amazing experience. Before leaving Sydney I had applied to the University of Technology in Sydney to do my degree in writing. Shortly after arriving back home I was informed that I had been accepted. Ah, the advantages of mature age AND disability. So spent three years doing my Graduate Certificate in Writing, was office- bearer for the Special Needs Collective…in fact I WAS the Special Needs Collective, and discovered I hated having to deal with the moronic “radicals” who called themselves the Student Association and did nothing except rant and rave, and waste student money. I was glad to leave uni. Towards the end of 2004 I decided to get my chef’s credentials from East Sydney TAFE, and crammed a 12-month course into 6 months. As much as I hated uni, I really loved TAFE and found it more grassroots and honest. David and I started Alderman Catering, a top-end catering business though it only lasted about 2 years as I found it very exhausting. I then sort of returned to my retail roots by opening a web site called Alderman Providore to sell Australian made gourmet grocery items. The site proved successful, and within 4 years I was opening my second site, this time specialising in tea, coffee and chocolate products. I got involved in a trial using Goat’s Serum to treat HIV, but again another waste of time. I did manage to get a skin rash from it, and managed to score a $1,000 for participating. In late 2009 the GFC hit, and online shopping took a major hit. After a disastrous Christmas that left me severely out if pocket, I decided to sell the business and put it behind me.

More eye problems followed, this time involving my blind eye. Back to the regular rounds at the Sydney Eye Hospital, and an injection of Avastin into the blind eye to stop it creating new blood supplies to an eye that couldn’t see. By this time, the interior of the bad eye was collapsing, and it took on an unnatural colour. Before this I hadn’t looked blind. Now I did!

The next step, which sort of brings us up to date, was a major move. Plans to move north had been on the agenda for 10 years – in 2011 it finally happened, though we did jump the border which wasn’t in the original plan. Recently my retina detached in my one seeing eye…or rather was pushed off by all the scar tissue present from my original CMV infection. An emergency operation to scrape down the scar tissue, and replace the retina and fluid (called a vitrectomy) has seen my sight degenerate even further and I am now the proud owner of a white cane curtesy of Guide Dogs Queensland. It has become obvious that our two Jack Russell’s are not, despite their best of intentions, good seeing-eye dogs. I can see, though very poorly. A lot of life is a blur these days.

However, I am not going to complain. I have always enjoyed a challenge, and this presents yet another one. I gave up smoking 15 years ago, and drink only lightly and socially these days. My partner and I both adopted a healthy diet and exercise program 8 years ago when we both started getting unattractively over-weight and inactive. We have both turned our lives around by adopting this course of action. In 2013, I obtained my Certificate III in Fitness from Southbank TAFE. It proved both a challenge for me, and for the TAFE, as they had never had a student with severe visual impairment do the course before. And finally, at the beginning if this year, I had my troublesome blind eye removed. I now have a very life-like prosthetic that I dan do drunken party tricks with.

33 years eh! OMG where have those years gone? Despite all the discrimination, stress, anxiety, illness, deaths, survivor guilt and despair, there have been moments of great introspection, illumination, strength and enlightenment. That over-used word “empowerment” springs to mind and that is perhaps the one word that sums all those years up. Victim? No way! Survivor? Not in my words! And I have never been one to wallow in self pity. You just need to grab life by the balls, and get on with it. I trust that is what I have done.

Tim Alderman

Copyright 2012, 2015

AIDS Quilt unfolding in Government Pavilion, Sydney Showground circa 1988. L-R Peter McCarthy, Peter Gilmore, Bevan, Steve Thompson, Tim Alderman
AIDS Quilt unfolding in Government Pavilion, Sydney Showground circa 1988. L-R Peter McCarthy, Peter Gilmore, Bevan, Steve Thompson, Tim Alderman