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.
Copyright 2012, 2015