Tag Archives: HIV

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

Will You Still Feed Me…?

June 4, 2013Article, Gay Interest, HIV/AIDSageing, chronic illness, geriatric, HIV, nursing, nursing homestimalderman

I have an idealised image of growing old with my partner and drifting out of this life in my sleep. In this ideal world of ageing, there is no pain, nor any unpleasantness. Occasionally, though, reality creeps into my thoughts, causing me to wonder just what will happen as the years speed by. The fact that I’m the older partner in the relationship doesn’t necessarily mean I’ll be first to die. Nor does it mean that any of life’s unpleasantries are not going to overtake one or the other of us in the guise of cancer, dementia or other illnesses.

The most frightening scenario is one where I’m left suddenly on my own and have to find new ways to cope. It’s difficult enough to adapt to new life situations when you’re young, let alone when you’re set in your ways. The prospect of ending up in a nursing home is something most of us don’t want to contemplate. A quick bit of research indicates that a lot of HIV+ guys perceive that they are ageing at a faster rate than most people the same age and fear the early onset of cancer, dementia and diabetes. But what about those of us who are hale and hearty and making lifestyle choices to try to ease the way into a healthy old age? I guess we’ll find out all about it when we get there.

At 58, and having now lived with HIV for 30 years, I’m trying my best to take a positive approach to ageing. To my way of thinking, my brush with AIDS in the mid-’90s was about as scary as it could get. Having survived and retained my sense of self (and humour), I fail to see how anything could scare me again.

Dirty old man
I decided a long time ago that I was going to become a Dirty Old Man (DOM) in my old age and to that end I’m already working. As a DOM I can wink, make innuendos, pinch bums, eye up and down and generally make a fool of myself in the presence of any handsome guys and get away with it because, well, I’m a DOM and it’s expected. I’m going to derive a great deal of pleasure out of this and brag about every creepy thing I do to other DOM friends, who will be numerous. This behaviour will, of course, come with me into the nursing home.

Now, let’s talk about my concept of the nursing home I will be in. It will have all modcons, from Foxtel and the latest in computer, phone and tablet connectivity. No jelly and ice cream in our gourmet dining room and the 24/7 gym will be staffed by the hunkiest of personal trainers, who will put up with our erratic behaviour. Likewise the male nurses will be tanned and hunky and dressed in the skimpiest clothes available. The nightclub and bar will be staffed by the best DJs and the dancefloor will be zimmerframe and wheelchair accessible. All our pets will be catered for in equal luxury.

Now, with many of the patients in this imaginary nursing home having read my fitness and healthy eating columns, muscle-bound, slim and over-active elders will be the order of the day and day trips to the latest hip cafes will be a weekly experience. Life will be a dream and we will all depart this life with smiles from ear to ear.

The reality
I fear the reality may be quite different. According to NAPWA (National Association of People with AIDS), there are about 19,000 people in Australia living with HIV and of those, about 30 percent are over 49. At this rate there is going to be a rush for the retirement home doors. If you happen to be gay and HIV+, you don’t, at this time, have a lot of options. Considering that a lot of available aged care is run by religious organisations, identifying appropriate aged care is a bit scary. Unless the gay community start to invest in their old age by putting money into gay nursing homes, I fear you and I will end up in a home that will be inadequate to our needs and certainly won’t allow us to be ourselves in the company of like-minded individuals. If we have HIV, I dare say there will be little in the way of experienced medical care and nursing.

In Australia things seem to be moving a lot slower than in the US, where gay and lesbian retirement homes are already up and running. In our own backyard, GRAI (Gay, Lesbian, Bisexual, Trans & Intersex Retirement Association, Incorporated) at GRAI.org.au is a WA-based volunteer group whose mission is to ‘create a responsive and inclusive mature-age environment that promotes and supports a quality of life for older and ageing people of diverse sexualities and gender identities’. In July 2010 they launched a report in conjunction with Curtin University entitled We Don’t Have Any of Those People Here. Though the research is WA-oriented, it would hold for any state in Australia. They point out that baby-boomer retirees are likely to be the first generation to be openly out as they age (which will also apply to HIV people, especially long-termers), which means that service providers, agencies and Government will need to approach glbt/HIV people very differently to any other group of retirees in years to come.

In 2008, the gay press mooted the building of the first glbt retirement village in Victoria, called Linton Estate. A check of the website doesn’t show any info past that date, though a 2011 report in the Star Observer indicates that retirement apartments are for sale from the plan. According to one report [in outdownunder.com] there are to be 120 units, with a heated spa, bar, cafe, library, croquet lawn (just how old do they think these people are?), tennis courts and much more. Construction is now expected to start in 2012. Things about this that make me nervous: buying off the plan for something that doesn’t as yet exist and is it going to be affordable (or elitist), considering that many of us will be surviving on the pension. I have always laughed at the notion of the pink dollar, whereby we are assumed to have limitless amounts of money to live lives of luxury, when the reality is that most of us struggle to get by. I certainly won’t be getting any inheritance and most other baby boomers are rushing to spend their money before they get too old to enjoy it. Let’s hear it for reality checks!

Just a dream
Fantasising about a gay retirement village is all very nice, but I fear most of us are going to find the dream of a gay retirement in diverse and HIV-knowledgeable environments just that … a dream. We also have to look at our unhealthy lifestyles, as we continue to get obese, drink too much and continue smoking (still a big problem in the HIV community), added to problems of social isolation, lack of interests, a drop in exercise due to laziness (let’s not bullshit here) and as you can see, there is a plethora of problems facing us as an ageing community. These things need to be addressed – and fast!

For some, one of the potential outcomes of limited choice is a return to the closet as a way of ensuring security, in conjunction with a move to the outer suburbs and away from the glbt/HIV community due to the lack of affordable accommodation in the inner city and suburbs.

As a 58-year-old gay HIV+ man in a long-term relationship, I need to start assessing the future realities of life, as pleasant or unpleasant as they may be. I don’t want to be left on my own to deal with my old age, nor do I want my partner to be. In all likelihood we will be together as we run into this stage of our lives (unless one or the other of us runs into a particularly hot 70-year-old – with lots of money, naturally), so sooner or later one of us is going to die and the other will have to continue life on their own. It would be cathartic to think that either of us could get accommodation that was both supportive, suitable and met all the social and medical needs of both gay and HIV people. Somebody will decide to do something about this eventually, though in all likelihood 50 reports will have been written on the subject and many dozens of older HIV+ people will have passed out of this life in undignified circumstances before action will be taken. The suicide rate amongst older glbt and HIV+ people would be interesting to know, especially considering that our coping mechanisms added to problems of discrimination and isolation decline as we enter extreme old age.

This is food for thought for all of us, young and old. Anyone who thinks they will never be old lives in Never Never land and anyone who thinks it’s someone else’s problem needs to get a life. Let’s give our elderly the respect and acknowledgement that is due to them.

Tim Alderman
Copyright 2011

P.S: In an article in QNews dated 27th April 2012, the Gillard government announced changes to aged care that ensured GLBTI aged that service providers would be required to support their special needs. The reforms are part of a package to keep seniors at home for as long as possible. GLBTI seniors have been added to the “special needs” category. Aged care operators are required to allocate places in this group. This means that for the first time, places are required to be set aside for these seniors. It is also the first legislation to include Intersex people in the special needs category.
To read the full article go to http://qnews.com.au/article/glbti-seniors-aged-care-bedded-down-0#

From the Pen of an Ageing Dissident

June 3, 2013Article, Autobiography, Gay Interest, HIV/AIDS, HumourDarlinghurst, dissident, Gay, HIV, Sydney, UTStimalderman

This article was first published in the Queer issue of “Vertigo”, the student newspaper at the University of Technology Sydney in 2002. It was published “as is”, though I have edited and cleaned it up since.

I’ve spent most of my life sitting on the sidelines of a radical’s playing field

It’s not that I’ve never had opinions; it’s always been more a matter of having different opinions, and a strong urge not to end up affiliated with the unpopular (read losing) team. So, I’ve shut up and put up where I shouldn’t have; sat back and listened to endless tirades of bullshit sprouted by individuals who have no idea what they are talking about; held a glass to the wall while the downfall of sanity was planned in another room; and watched people selling off or ignoring the weight of sane idealism. White-collar elitists undermining the structures of a blue-collar world!

Perhaps I could carry on like this; perhaps I could continue to use my soapbox as a storage devise for my now unused vinyl collection; arse-end my megaphone and convert it into a vase; or start a petition to sue the growers of marijuana for being inept at keeping me (us) permanently stoned. Nothing can change the fact that these days, I am getting fucked off by just about everything going on around me, and fucked off by having allowed myself to keep quiet for far too long.

When I crashed out of the closet in the early 80’s – at the grand old age of 25 – it was into the perfect environment for a potential dissident – the gay liberation movement. Yeah, let’s hear it for gay rights! Sure, if you can find the time between checking out the latest bar, and keeping your cock in your pants long enough to fight the good fight. Naturally, I sympathised with all the boys out there trying to make life easier for us, and sure, I had an opinion. I just didn’t want the opinion to stand in the way of a good time. Oh, I did write a letter to ‘Campaign’ (newspaper, not magazine back then) defending the rights of guys to look like clones if they wanted to – and accused those who didn’t like it as being ‘cloneophobes’. Nothing like inventing a word! Did I ever feel guilty about this lack of radical action? Sure I did, as someone yelled ‘faggot’ at me as they drove past in a car, or I read in the latest gay rag about the increase in gay bashings in the local ghetto. I even determined that I was going to the next rally, or the next kiss-in, or signing the petition that was sitting in my local pub. The problem was that I had to manage to get past the pub door, or get up before midday, or say no to a bit of trade to accomplish any of these things. So I left it for those guys to do. You know who those guys are! They are the ones who wander from club to pub with the petition that you should sign, but never seem to remember. The guys who always had their photos in the gay papers, as they tried to rally a community to action. The guys who always had letters published in the same gay rags, defending us all against the rantings and ravings of the vocal minority, who saw fit to hold everyone ransom to every other standards of morality than those we accepted as right. Yep, those guys! I admired them, I supported them, fucked if I wasn’t even just a teensy bit envious of them for being so out there, but I mean…I was just a 25-year-old male bimbo with a life to burn. I’m sure they understood!

So, the 80’s passed me by. I never did get to any of the gay rights marches, or the kiss-in arranged by the Sisters of Perpetual Indulgence on the steps of government house, or the first march, that political pivot point, that was to become Mardi Gras. I did, however, manage to work my way through three relationships, got the clap no less than four times, and found myself trapped in a frantic lifestyle that generally left anyone caught in its vortex an alcoholic, a drug addict, or dead! Even I, from my ivory tower of intellectual snobbery, sprouted from a bar-room stool, should have foreseen the next chance at radicalism – a bigger stage that I could have acted from, another soapbox to yell rousing, unrhymed verses from, finding uses for milk crates other than what we annually used them for – viewing a parade!

No, not even I foresaw HIV. No one knew the devastation, the heart wrenching desolation, the sheer bloody mindlessness of this pandemic like those of us in the middle of the fray. Behold, another opportunity was handed to me, and still I sat back, still took the easy road, still tried to pretend that tomorrow I would do something, tomorrow…

Sure, like many others I put up the pretence of radicalism. I joined the fringes of the AIDS groups, at least long enough to say that I had done my bit, I shouted members of ACT-UP a drink if they happened to be in the same bar as me after a demonstration; I unfolded quilt panels; attended auctions to raise money; visited the sick and dying in hospital; ranted, again, that everybody was doing something except those who should; then took myself off to the local and again, got my priorities right from my bar stool in the corner. Let it never be said I didn’t have an opinion – it was just aimed at the wrong ears. When I realised it was no longer good enough to fight this battle this way, it was almost too late, and the white-collar elitists had almost kidnapped the whole epidemic to their own benefit.

There is nothing quite like a degree, nothing quite like a network of those in the know to give people a sense of wisdom beyond that of everyone else. It was time to act! Enough of pub politics, opinions whispered into the crotch of the latest bit of trade, the mind numbing importance of yet another drink – like I really needed it – or another joint, or another tab of acid. Life leeching away at the speed of the next line of coke. I had a frightening experience – I got ill. I had another, more life altering experience – I survived the illness. I had the most frightening experience of all – I got older! When I think of all the frightening things that have happened in my life, perhaps the latter was the most frightening of all. Years flying past at the speed of light.

So, like Lazarus, I arose from the dead, marched from the hospital ward and back onto the streets. It’s too late, I kept thinking to myself. It’s too bloody late and you’ve missed the fucking boat. But no, it’s not too late. In an age of complacency and burn-out, there is time still for a yet-to-be-a-has-been radical. I find myself at a rally in support of equal age of consent for gay and straight men, not quite comprehending what makes one sector of the community more irresponsible than the other in terms of sex. All I really find is that the era of great radicals has passed, and no one seems to be moving up the ranks to fill their Doc Martens. The rally leaves me feeling flat, wondering where all the great bullhorn vocalists have gone! Even the turnout is small compared to those of the 80’s. There was no value in rallies and parades anymore. As far as these forms of radicalism go, perhaps I have missed the boat.

I join the underground world of working groups, sub-committees and networkers, and at last started to find the missing flame of righteous indignation. The written word is something I am more than proficient at, and my letter writing on anything from ugly McDonalds advertising to condom use – and misuse – becomes prolific. I discover the hidden world of ‘the article’, and start to churn them out by the zillions. I discuss, initially, disease and its impact on life, but soon find myself drawn to the palliative issues of illness, and how best to survive in a world that barely recognises your existence. Public speaking is my next step up in this alien world, and I suddenly start to realise that it is not too late to be a dissident. You just need the right soap-box at the right place and the right time. Being there when something is happening doesn’t mean that you have to act on it. Sometimes, coming in through the backdoor can be much more beneficial.

Now, as I enter the noughties, I am finding the dissident gene that I thought was missing for so long. I joined groups, both community and university orientated, and feel that in some small ways, I am making a difference. Perhaps more importantly, I am no longer just focused on the smaller issue of HIV, but see potential for being a voice in all areas of disability. What achievements and benefits I obtain for myself I also obtain for others, and vice versa. Make a difference? You bet your balls you can. Shout, yell, scream, demand. Send emails and annoy people until they are sick to death of the sight of you. By the time they reach this stage, they are willing to listen to what you say. Be patient, be diligent, be aggravating. Trust me on this. I do it regularly, and yes, things are happening – perhaps not as quickly as I would like, but they are happening. In many respects, it has given me an alternative view. I used to wonder what the attraction was – name in the paper, photographs at rallies, police record – and like most others, I thought they really just craved attention. Now, when I see a set of stairs being marked so vision impaired people can see them clearly, when I see adverts for note-takers in lectures for the same people, when lighting is fixed in badly lit areas, or just an advert in a lecture about a disability meeting in a faculty, I know what it was that they obtained from all their vocalising and protests. It is that feeling of having done something for the greater good, and that is something you can do whether you are 16 or 60, gay or straight.

Feeling peeved? Pick up your soapbox. Find a patch of grass or asphalt big enough for a captive audience. Raise your megaphone high…and SCREAM!

Tim Alderman
(C) 2013

The Storyteller: Stories Almost Lost in Time

June 2, 2013Article, Gay Interest, HIV/AIDSAIDS quilt, cats, Darlinghurst, gutter drag, HIV, St Vincents, Sydneytimalderman

(This article was originally published for World AIDS Day 2005. It is, with no modesty, the most powerful piece I have ever written. Written with love, it took me the longest time – about 2 months – to write. It is also the piece I have shed the most tears over. I received a huge amount of positive feedback from it, and nearly everyone who has read it has cried. I don’t know that the tears were over my stories so much, but rather that they had similar stories invoked by the writing. I have always hated the introduction to the snippets, and have taken this opportunity to totally rewrite it.)

Anyone who has been observing or participating in the Lost Gay (Insert your state) groups on Facebook would realise the immense value of collective memory. Writers, historians and archivists can churn out volume after volume on gay history, but nothing can match the real stories that come from individuals who lived within the community through its various phases. I personally submitted a tome of comments, stories, reflections and recollections – not to mention a plethora of photos – on other peoples submissions to the Sydney group. It was an energising, amusing, often happy, sometimes sad experience reliving what was, for me, a formative part of my life, and a period of gay history that was positive and empowering as a community.

No recollections of the 80s and 90s can skirt around or avoid the impact of HIV/AIDS on our lives. Indeed, reading through the groups posting on lost friends drove home the nightmare, the immense loss, the sorrow and the stories flowing from those of us left behind. It was a beautiful experience, and more than a few tears were shed. It also informed some of losses they had not been aware of. A friend of mine actually died during this period and his memorium was in real-time instead of being enclosed in the pages of a local paper.

HIV/AIDS was relentless and soul-destroying. There is nothing more helpless than being in the midst of all this obliteration and knowing there is absolutely nothing you can do. Many of us stood, stunned, and watched our entire social circle written off the face of the earth. It didn’t discriminate, it offered no mercy or compassion. Death and dying became an event that, even for those who left for nether regions, could not escape from. To write this piece, I have had to dig into photo albums not opened for years (with photos of groups of friends where not a single person is still alive), delve back into long buried memories. It was like a dam breaking. I cried, and cried and cried. Perhaps long overdue, it proved cathartic.

But the same question was being asked as I wrote – what of those who survived the carnage and live with its aftermath? However we have managed to come to terms with it, we are all scarred. Triggers are never far away – a photo, a memory, a casual conversation can produce a flood of emotion. So we learnt to tuck it away, to cope, to avoid. But how do we really feel about our survival? How do we place ourselves? What role have we adopted as a coping mechanism? Are we “long term survivors” (Like or lump the terminology)? Do we have “survivor guilt”? Are we in denial? “Victims of circumstance”? Or was it just “the luck of the draw”! Or have we found other ways to redefine ourselves! How ever we see ourselves there is one thing we can’t deny – we are the holders of all our departed friends memories,; the secrets that endeared them to us; their little irks and quirks. I have come to define myself as a Storyteller, and as a writer I could write tomes on all my departed friends lives, I could bash your ears for hours, and bore you to the point of sleep. But I won’t.

I have chosen the lives of three close friends to write about “in a nutshell”. This is not a biography about them. It is a random thought, that one thing that springs to mind when their name is invoked, that short story or snippet of their lives.

These are three people I love, three people I deeply miss. Their memories are jewels in my mind, are stars at night. I hope they glow and twinkle for you!

Andrew Keith Todd
4 February 1962 – 26 December 1986
“I am white lightening and protecting you all.”

Andrew was, to give a modern comparison, a Hobbit. He would laugh uproariously if he knew I had drawn that comparison.

I met Andrew when I was the manager of ‘Numbers’ Bookshop, which was one of ‘those’ sex shops on Oxford St. He didn’t actually work for me, but for the ‘Hellfire Club’ – later to become ‘The Den Club’ – a Club 80-style sex venue next door to ‘Numbers’, both owned by the same guy. I can never recollect seeing Andrew when he wasn’t smiling, or laughing, or doing someone a favour. He was one of those easy-going guys who was liked by everyone. He was also one of the first people I knew to become seriously ill from AIDS. We knew so little about it back then that I don’t think anyone, including Andrew, was particularly perturbed.

Over a period of about 6 months, we could see his health slowly deteriorating, weight loss being the most frightening symptom on someone his size. Shortly after that, his hospital stays started – or in his words, “just going in for a bit of a rest”. He was in and out quite regularly for the 6 months leading up to his death, with each outstay getting shorter and shorter. Several months before his death, the stay became permanent. There was no dedicated AIDS ward back in those dark days, so he would be placed in a ward for a while, then if the bed was required by someone else, he was moved down to A&E (St Christopher’s ward) until another bed became available. He had the dubious distinction of being one of our first HIV guinea pigs, suffering the discomfort of loads of antibiotics to try to help the PCP, and dozens of lumbar punctures as medical staff tried to work out how best to treat him. His back looked like a pincushion.

A couple of months before he died, he had been invited to Gareth Paull’s 1986 theme party “Green With Envy”. It was a blokes only party at Darling Point, and you had to wear drag. My reputation for doing “gutter” drag was well established, so Andrew asked me to accompany him, and help with his outfit. As you can see from the photo, he was very thin. I was so glad that I went with him, and that he enjoyed himself so much. It was the last party he attended.

By December 1986, we all knew he didn’t have all that long to go. Despite his constant good humour, his downhill slide was becoming more and more obvious. He looked dreadful! A Christmas lunch had been arranged by friends living at Glebe on Christmas Day that year. We called into St Vincent’s on our way there to deliver Christmas gifts to him. ‘I won’t die today,’ he said to me as we were about to leave. ‘I don’t want to ruin your Christmas’. Christmas lunch was a quiet, tense affair with everyone jumping every time the phone rang. But he kept his word.

I had to work on Boxing Day – sex doesn’t recognise public holidays. The rest of our friends were at a party in Darlinghurst. I received a phone call in the early afternoon to say Andrew had died, and then had to put a dampener on the party with a phone call. There was a huge wake that night at “The Oxford’, the first of many to come.

His funeral was held at Eastern Suburbs Crematorium, and at the exact moment that the curtains were closing in front of the coffin, every door in the crematorium chapel suddenly slammed shut.

He still managed the last laugh. In his will, he bequeathed me the books I had lent him to read in hospital.

Andrew was 24-years-old. He has no lasting memorial.

Stuart “Stella” Law
Died 1992
“Riding in my pink Cadillac”

My dear friend, how I still miss you! The mental image I have of you dressed in miles of pink tulle frou-frou, trying to not slide off the bonnet of that pink Cadillac as you were driven up Sims St in Darlo, to the sound of Stephanie Mills belting out “Pink Cadillac”, will stay with me forever. How we laughed! You were always such a ‘laydee’!

I had originally tried to pick Stuart up in ‘The Oxford’ one afternoon, but we had spent ages chatting, and the next thing I knew…we were friends. We proceeded to spend the next couple of years doing gutter drag together. How we turned this town on its ear! For those not familiar with the term ‘gutter drag’, imagine huge wigs, over-the-top make-up, miles of lurex and tulle, and body hair for days.

Never one to shun the spotlight, he could be seen doing mime shows at ‘The Oxfords” Egyptian-themed birthday party in 1987, and doing an impromptu performance at my ‘Nuns, Priests and Prostitutes’ party in 1988. My dining table centrepiece was never quite the same after that performance. We did our last drag gig together in 1990. I have a photo of him sitting in my apartment taking his false nails off, and there is a look of true sadness on his face. There was something wrong, and Stella wasn’t letting on!

When he had to quit work, he finally told me he was HIV+. He became a regular at the ‘Maitraya’ Centre – a forerunner to the Positive Living Centre – and he was not one to say no to a free service! This was a bad period for all of us.

In 1992, far too many died. Stuart was placed in the Sacred Heart Hospice. He looked as though he was just wasting away. I went to visit him one night, and lay on the bed with him, just holding him. There wasn’t a lot else we could do, even then. The hospice cat paid a fleeting visit. It came time to go, and I started walking towards the elevators. I remember this overwhelming compulsion to turn around. Stuart was watching me through the door, and suddenly I just knew that I would never see him again. I never did. He died that night.

“Like a soul without a mind
In a body without a heart
I’m missing every part”

Stuart’s life is celebrated on AIDS Quilt panel 057006.along with others from Maitraya

Geoffrey Gordon Smith
7 June 1943 – 9 June 1991
“The Sentimental Bloke”

Famous for their ‘Port and Cheese’ parties, Geoff and his partner Steve were the Hosts Supreme, and entertained many of us in style from their converted shop in Glebe. Geoff was without doubt the last of the true blue gentlemen. With never a bad word to say about anybody, he always had a joke to hand out, a smile that never stopped, and was generous to a fault. Need to move house? Geoff would be there in a flash with his van. Need a lift? Just give him a call.

At one function at their home, a stray cat suddenly appeared on the roof overlooking the yard. We managed to coax it down using Cabanosi and cheese, and noted that it was undoubtedly a stray, as it was very thin, and had some sort of skin ailment. Geoff spent all afternoon trying to shoo it away – if only he’d known that we kept coaxing it back with little tidbits. Later that night, Geoff rang me at home and said the cat was still hanging around the yard. A week later, the cat had been taken to the vet to get its skin cleared up, and had taken over one of the chairs in the lounge room. That was Geoff through and through.

He and Steve as The Minister and Mrs Smith made several appearances at parties over the years. The minister was always well behaved, but Mrs Smith had some problems with the sherry. In early 1991, in an attempt to control the rapidly on-setting symptoms of AIDS, Geoff went to a quack – used in its literal sense – dietician, and was presented with a diet that was principally meat with little else. I didn’t really approve, as I couldn’t see the benefits of it, but Geoff insisted that theoretically it could work, so it was left at that. His health deteriorated quite rapidly from that point.

He died in June 1991.

I stayed over at Glebe after his funeral, and late that night Steve climbed into bed with me and cuddled up. ‘I just don’t know what I’m going to do,’ he said. ‘I just miss him so much’.

All these years along and he is still missed. I am privileged to have had a hand in helping to make his quilt panel.

His life is celebrated in AIDS Quilt panel 037004