A 40 Year Journey Into (And Out Of) Fear Part 8 (FINAL)

Article, Autobiography, Gay Interest, Health Information, HIV/AIDS, , , , ,

The move to Dr. David Austin at Holdsworth House was a good move, made on recommendations from friends. The practise was well located in Darlinghurst, David himself was young, handsome, HIV/AIDS knowledgeable…and gay, as were all the men in the practise, which made communication easy.

The one good thing about David was that he was willing to make me an equal “partner” in my health management. This far down the line, I wanted more control over decisions made in regards to my health. When it came time to change my combination therapy, David would pick out a number of combinations, give me the run-down on them…efficacy, potential side effects…then I would choose the one that suited me.

Between late 1999-2001 I applied for several trials, but was disallowed due to having had CMV. A lot of my focus changed to controlling the ongoing pain from my peripheral neuropathy (which eventually became numbness), I tried acupuncture… through 407 Medical Practise in Bourke St…went to a reflexologist in Queenscliff, who was running a research project with subjects with ongoing PN. I then had regular sessions with Greg Milan, a reflexologist associated with Holdsworth House. Despite some minor improvements using these alternatives, nothing worked in a major way, and it became obvious that it was permanent, and I just had to deal with it…right up until now, where it affects my mobility and balance, controlled through exercise physiology.

Also in late 1999 I started part-time work at the HIV Prescribers Project, thanks to Lavinia Crooks (RIP) at ASHM (Australian Society for HIV Medicine) who managed it at the old (now long gone) Royal South Sydney Hospital, in Zetland. This project ran training courses for doctors wishing to expand their HIV knowledge, and become S100 Prescribers. In mid 2000 the project moved from Zetland, to the ASHM offices in the Albion St Clinic building. I helped to collate the training manuals etc for the courses which were run several times a year.

From photo shoot for The HIV Book Project at Sydney Park

In late 2000, David…my partner, not my doctor…and I decided to do a two week trip through the Red Centre while the Sydney Olympic Games were on. We caught The Ghan from Sydney (back then it alternated between Sydney and Melbourne) to Alice Springs…the end of the line back then…via Adelaide, then coached it up to Darwin. A truly awe-inspiring holiday, away from the madness of Sydney. On returning to Bondi, I then decided to legitimise my writing with a degree in writing from UTS…I was writing regularly for Talkabout then…and applied under the exceptions granted to mature age and disabled students, and was accepted. I quit my job at HIV Prescribers, and entered into a period of educational advancement.

I applied to do a Batchelor of Writing degree, though found university not to my taste. It reminded me a lot of school…which I hated…and many of the first year subjects had nothing to do with writing, which frustrated me. For the second and third years, I juggled subjects around to fit with what I wanted, and at the end of that period I had enough subjects passed to get a Graduate Certificate of Writing, which I settled for. While at UTS I had several articles published in “Vertigo”, the university newspaper, and was office-bearer for the Disability Collective. Dealing with student bureaucrats drove me crazy, and I wrote a number of heated letters blasting the Student Union for not offering reduced costs in fees to disabled and pensioner students. Naturally, all to no avail.

Midway through 2003, while finishing my writing degree, I started at East Sydney TAFE to get my chef’s credentials. Apart from writing, my other passion was cooking. Unlike UTS, I loved TAFE. The students were more down-to-earth, and genuinely loved the learning experience, not being hindered by the strictures of university. I also embarked on a correspondence course to get my Catering Certificate. So, by 2004 I had three new credentials under my belt.

Back to 2001, I went onto my second-last trial…and it was a doozy that I got paid $650 to do. It was called the Caprine Antibody HRG214 trial…more commonly known as the Goat Serum antibody trial…Phase 1. It was done by infusion at St. Vincent’s, followed by a two month observation period. Again, at the end of it, nothing was achieved except a sore arm from the 12 attempts to get a cannula in it, and an all-over skin rash at the end of the second month.

From photo shoot for The HIV Book Project at Sydney Park

The last trial was in 2004, and both David and myself were involved in it. Back in 2000 I was knocked back from doing the T20 trial due to my CMV, but the criteria was made less stringent as time went on, and so in 2004 we both got into the T20 trial. This was an injectable drug vaccine trial that was seen as the possible future for drug regimes. The drug was administered into an area of body fat using a pneumatic gun. Initially, it was great…pretty well pain-free, quick, easy, and very effective according to pathology results. However, because you had to do it twice a day, it soon became notable that injection sites got painful, and you soon ran out of them. It could also cause serious bruising which put an injection site out of action until the bruise cleared. We both got about halfway through, then quit. Evidently a lot of others had similar problems.

Other events for that year were (A) my 50th birthday, a truly big event that I dragged out for two weeks. Highlights included David taking the wrong batch of…cookies…to Palms, and getting banned from The Colombian Hotel in Darlinghurst, due to my tendency to stagger. They later apologised for the behaviour of their bouncers (B) I wanted to open a business, but had no idea about how to go about it. I decided to go through a BGF return-to-work course, to see where it would lead. Fortunately, I ended up with Marie Crosbie as my advisor. She soon clicked that I didn’t really need what the course provided, and asked me what I really needed. Between the two of us, we put together the bare bones of starting a business and (C) we decided to move to a house in Dulwich Hill so we could have room to rescue dogs. We are both Jack Russell Terrier lovers, and that love of rescuing them exists right up to today. There is a notable lack of HIV information at this stage, as everything was now running smoothly, and it was moving further and further into the background of my life.

Dulwich Hill, with our two Jack Russell’s, provided a new approach to many things. I started a high-end catering business called Alderman Catering. This lasted about two years, before exhaustion finally ended it. Catering is a youngish persons business. It takes three days to put a functions finger food together. A day for shopping, a day for prep work, and a long day of cooking packing and serving. It really wears you out. I rejigged my business plans, and fell back into my old retail career, as it was something I knew, and was successful with…but I leapt onto a retail format that is only mew really popular…an online store (I could run it from home with minimal start-up expenses, and minimal overheads) called Alderman Providore, specialist in non-perishable Australian made food products from small, unknown niche suppliers. It was incredibly successful with a constant yearly growth, and then the addition of another specialist store called TeaCoffeeChocolate. What brought it all to an abrupt end was the Global Financial Crisis in 2009/10. Online businesses were the first to crash. I put the business up for sale, and sold it to a woman in Queensland.

From the photo shoot for The HIV Book Project in Sydney Park

It was soul destroying.

Around the same time I started having problems with my blind left eye. It was constantly irritated, like there was something in it that wouldn’t come out. I went to the eye clinic at Royal Prince Alfred Hospital at Camperdown. They found that the eye didn’t realise it was blind, and had created a new capillary network to feed the eye. This in turn caused the eye to swell, thus the irritation. They gave me steroid drops, and referred me to the Sydney Eye Hospital. After a consult, they decided to inject a cancer serum (Avastin), that stopped blood flow to tumours, to stop the blood vessel growth. It was successful, however over time, the eye changed colour, giving me two different coloured eyes. Talk about attention grabbing!

Also in 2009; I got out of the shower one morning, caught sight of myself in the mirror, and thought “who is that fat person in here!”…yep, it was me. So off to a local gym, and a new love affair with Les Mills Body Pump classes. The weight burnt away, and started me on an ongoing love of fitness which still goes on today, though in a more senior person way. Fit, healthy, active is my mantra now;

In 2011 we decided to move to Brisbane. No particular reason why…just because we could! So we packed up our home, got a removalist, filled the car, grabbed the dogs and moved to Ashgrove, a suburb of Brisbane. I had been told back in 1996 that due to all the scar tissue in my right eye, due to the CMV, it was highly likely I’d have a retinal detachment at some stage. No sooner had we gotten to Ashgrove than the retina decided it was time. So, into Royal Brisbane hospital for an operation to reattach it. The ophthalmologist also scraped down the scar tissue before reattaching it.

Leap forward to early 2015, and problems with my left eye continued. In the intervening years, all the eye’s internal workings had collapsed, so I made a decision to have the eye removed. Another operation, and it was gone. Shortly after, David and I returned to Sydney…we had split amicably in 2014, and are still close friends…and it was here that I had my prosthetic fitted.

In 2017 I was interviewed and photographed for a chapter in the HIV Book Project. It was here, for the first time, that I revealed my rather radical approach to HIV drug dosing In 2011. In an era where we were still dosing on 3-4 drugs twice a day, and guys were opting for drug holidays despite the risks, I opted…without disclosing to anyone…for a different approach. It was risky, but done with close observation to blood test results. Sick of pills, sick of side effects, I halved my daily dosing to once a day, and no pills on weekends. If my CD4s fell, or my viral load rose, straight back to my old routine. In the 5 years I did this, my CD4s continued to rise and my viral load remained undetectable. Interesting, isn’t it! Read my chapter in the book to find out my true feelings about this.

Apart from an extremely painful run-in with shingles in 2014, which has left me with neuralgia and partial numbness in my left arm and hand, and 5 weeks of radiation on a large Basil Cell Carcinoma behind my left ear last year, life is really great. My Jack Russell, Flash, and I live very happily in a social housing villa on the Central Coast of NSW. I’m on a category 3 home support package…with the addition of Assistive Technology funding…so have some cool technology to help me see to do hobbies. Someone comes in to clean, and helps me with shopping. My Exercise Physiology gym is a 2 minute walk away. Friends are close by, and I have great neighbours.

I obtained my Certificate III in Fitness back in 2012, and ran seniors exercise classes locally until 2 years ago, when I got my villa. I avoided COVID, and apart from writing about it, HIV could not be further from my mind. These days, ageing…the one concern I once thought would never happen…is, at 72, my biggest concern. I now use a walking stick to control my meandering feet, and only take antivirals once a day. I’m happy, and content. What else does one need!

So what have I learnt about myself over the last 43 years…and even earlier than that? Well, I’m certainly resilient! I’m an independent guy, and an individual. I’ve retained a sense of humour…though somewhat dark and sarcastic. I’m glad I’ve always been an out gay man, and I am what I am, and where I am, doing the things I love due, in large part, because I’m HIV, and had AIDS. There is a kind of perversity in that! If I had my time over, would I walk the same road? That is a very good question! And one I’ll leave you to ponder. Thank you for reading a very long rant. It is most appreciated. Now, pack it away, and get on with your life.

Nam myoho renge kyo (Buddhist mantra)

Tim Alderman ©️ 2026

“Patient Zero”: Fact, Fantasy, or Myth.

Article, Gay Interest, General Interest, HIV/AIDS, , , ,
Gaëtan Dugas

The story of HIV’s so-called “Patient Zero” sits at the intersection of science, stigma, and storytelling. For decades, it has been repeated in media and public discourse as the tale of a single individual who allegedly introduced HIV to North America and triggered the AIDS epidemic. But is this narrative grounded in fact, or is it a myth that took on a life of its own?

The origins of the “Patient Zero” concept trace back to the early years of the AIDS crisis in the late 1970s and early 1980s, when doctors and epidemiologists were scrambling to understand a mysterious and deadly illness. One key figure in this story is Gaëtan Dugas, a French-Canadian flight attendant who was identified during a U.S. Center for Disease Control and Prevention (CDC) study investigating sexual networks among gay men with AIDS.

In that study, Dugas was labeled as “Patient O,” with the “O” standing for “Outside California,” since he was not based in the state where many early cases were identified. Over time, however, this “O” was misread or reinterpreted as the number zero. This seemingly minor clerical or typographical confusion had enormous consequences. The label “Patient Zero” implied that Dugas was the original source of HIV in North America—a claim that would later prove to be unfounded.

The idea gained widespread attention with the publication of “And the Band Played On” by journalist Randy Shilts in 1987. The book, while groundbreaking in its chronicling of the early AIDS epidemic, portrayed Dugas as a central figure in the spread of the virus. This depiction cemented the “Patient Zero” narrative in the public imagination, casting Dugas as a kind of villain who knowingly transmitted HIV to others.

A picture paints a thousand words

However, subsequent scientific research has dismantled this narrative. Advances in genetic analysis of the virus…particularly phylogenetic studies…have allowed scientists to trace the evolution and spread of HIV with much greater precision. These studies show that HIV was present in North America well before Dugas became infected. In fact, the virus likely entered the United States from the Caribbean in the early 1970s, years before the first recognised AIDS cases.

A landmark 2016 study published in the journal “Nature” used preserved blood samples from the 1970s to reconstruct the early history of HIV in North America. The findings revealed that the virus was already circulating in New York City by around 1970 and had spread to San Francisco shortly thereafter. Crucially, the analysis demonstrated that Dugas was not the earliest case, nor was he uniquely responsible for spreading the virus.

This evidence underscores a key point: epidemics do not begin with a single individual in the simplistic way that the “Patient Zero” myth suggests. Infectious diseases spread through complex networks of human interaction, often silently and undetected for years before they are recognised. The notion of a single “originator” is more a narrative convenience than a scientific reality.

Debunked

The persistence of the “Patient Zero” story also reflects broader social and cultural dynamics. During the early years of the AIDS crisis, fear and misunderstanding were rampant, and marginalised communities—particularly gay men—were often stigmatised and blamed. The idea of a single, identifiable individual responsible for the epidemic provided a focal point for that fear and blame.

In retrospect, the story of “Patient Zero” can be seen as a cautionary tale about how misinformation and stigma can shape public understanding of disease. While Gaëtan Dugas was indeed part of early epidemiological investigations, he was not the origin of HIV in North America, nor was he uniquely culpable in its spread.

Today, historians and scientists widely regard the “Patient Zero” narrative as a myth—one rooted in misunderstanding and amplified by media representation. It serves as a reminder of the importance of careful scientific communication and the dangers of oversimplifying complex public health issues.

HIV’s “Patient Zero” is not an actual fact but largely an urban legend that emerged from a combination of misinterpretation, incomplete knowledge, and social stigma. While it may have once seemed like a compelling explanation for a frightening new disease, modern science has shown that the reality is far more nuanced—and far less accusatory.

Tim Alderman ©️2026

Lifetime Trauma and Loss

Article, Gay Interest, General Interest, HIV/AIDS, , , , ,

There is a saying…that time heals all wounds.

It doesn’t!

Lifelong trauma is rarely a single event frozen in time. More often, it is a thread that runs through a person’s life, weaving itself into memory, identity, relationships, and even the body. It can begin with one devastating loss and then deepen as new experiences echo the original wound. Over time, trauma becomes less about what happened and more about how it continues to live within you…reshaping how you see the world and your place in it.

The death of a loved one in childhood is one of the most profound disruptions a person can experience. When a brother dies, especially at a young age, the loss is not only of a person but of a shared future. The ordinary expectations…growing up together, navigating life side by side, reminiscing in adulthood…are suddenly erased. In 1965, when my brother Kevin died (at my father’s hands, at The Gap), the world likely shifted in a way that was difficult to articulate, especially given the emotional norms of the time. Grief in that era was often private, restrained, and insufficiently processed, particularly for children who were expected to “carry on” without fully understanding or expressing their pain.

Early trauma like this can embed itself deeply. Children do not yet have the emotional language or coping mechanisms to process death fully, so the experience may become internalised as confusion, fear, or even a sense of abandonment. Over time, these feelings can manifest in subtle ways—heightened sensitivity to loss, difficulty trusting stability, or an underlying awareness that life can change irreversibly in an instant. Even decades later, the loss of a sibling can remain a defining emotional landmark, one that quietly shapes how future grief is experienced.

As life moves forward, new traumatic experiences often resonate with earlier ones. For many people who lived through the HIV/AIDS crisis of the 1980s and 1990s, trauma was not a single event but a relentless sequence of losses. The epidemic brought not only widespread death but also fear, stigma, and uncertainty. Friends, partners, and community members became ill and died in rapid succession, creating an environment where grief was constant and anticipatory.

This kind of repeated exposure to loss can compound earlier trauma. The death of close friends during the HIV/AIDS crisis may have reopened the emotional wound left by my brother’s death, layering new grief onto old. Each loss can feel both singular and cumulative…unique in its details, yet connected to a broader pattern of absence. The psyche does not neatly separate these experiences; instead, it absorbs them into a larger narrative of vulnerability and impermanence.

The HIV/AIDS crisis also carried a distinct social dimension that intensified its psychological impact. Many people affected by the epidemic faced stigma, discrimination, and a lack of understanding from broader society. Grief was often disenfranchised…unrecognised or minimised…particularly within LGBTQ+ communities. Funerals became frequent, yet public acknowledgment of the scale of loss was limited. This created a kind of collective trauma, where individuals not only mourned their loved ones but also navigated a world that often failed to validate their pain.

Living through such a period can fundamentally alter one’s relationship with mortality. When death becomes a regular presence rather than a distant inevitability, it can lead to hyper vigilance, anxiety, or a persistent sense of fragility. At the same time, it can foster resilience, empathy, and a deep appreciation for connection. Trauma is not a singular outcome; it is a complex interplay of harm and adaptation.

One of the defining features of lifelong trauma is how it evolves. In the immediate aftermath of loss, grief may be overwhelming and all-consuming. Over time, it may recede into the background, only to resurface unexpectedly…triggered by anniversaries, memories, or new losses. The death of my brother in 1965 and the losses during the HIV/AIDS crisis are not isolated chapters; they are interconnected experiences that continue to inform how I process emotion and memory.

Trauma can also influence identity. People who have experienced significant loss often carry a heightened awareness of life’s unpredictability. This awareness can shape decisions, relationships, and priorities. It may lead to a cautious approach to attachment, or conversely, a deep commitment to cherishing relationships while they last. It can also foster a sense of responsibility to remember…to keep alive the stories of those who have been lost.

Importantly, lifelong trauma does not mean lifelong suffering in a static sense. While the impact of past experiences may never fully disappear, it can be integrated in ways that allow for meaning, growth, and even a sense of continuity. Many people find that reflecting on their experiences…whether through writing, conversation, or creative expression…helps to transform trauma from something purely painful into something that also holds significance.

The memory of my brother Kevin, for example, is not only tied to the moment of his death but also to the relationship I shared and the person he was. Similarly, the friends lost during the HIV/AIDS crisis are part of a broader narrative of community, resilience, and love in the face of adversity. Remembering them can be an act of honouring, not just mourning.

At the same time, it is important to acknowledge the ongoing effects of trauma. Feelings of sadness, anger, or unresolved grief may still arise, even many years later. These responses are not signs of weakness or failure to “move on,” but rather indications of the depth of the connections that were lost. Trauma does not adhere to a timeline, and healing is not about erasing the past but about finding ways to live alongside it.

Support, whether through personal relationships, counselling, or community, can play a crucial role in this process. Sharing experiences with others who understand…particularly those who lived through similar events…can help to validate and contextualise feelings. It can also reduce the sense of isolation that often accompanies trauma.

Ultimately, lifelong trauma is a testament to the enduring impact of human connection. The pain of loss reflects the significance of what was lost…the relationships, the shared moments, the lives intertwined with your own. While the experiences of 1965 and the HIV/AIDS crisis are marked by profound grief, they also speak to the capacity for love, resilience, and remembrance.

In this way, trauma becomes part of a larger story…not just of loss, but of survival and meaning. It is carried forward, not as a weight that defines you entirely, but as a thread that contributes to the richness and complexity of your life.

Tim Alderman ©️2026

Are You Kidding Me?

Article, Gay Interest, General Interest, Health Information, HIV/AIDS, , , ,

The persistence of HIV hoaxes represents a troubling intersection of misinformation, stigma, and public health risk. Since the early days of the HIV/AIDS epidemic in the 1980s, myths and conspiracy theories have circulated alongside scientific advances, often undermining prevention efforts and deepening fear. Understanding how these hoaxes arise—and why they endure—is critical to addressing their impact.

One of the most common HIV-related hoaxes is the denial that HIV causes AIDS. Despite overwhelming scientific consensus, a small but vocal group has promoted the idea that HIV is harmless or that AIDS results from lifestyle factors, drug use, or even pharmaceutical conspiracies. These claims gained traction in the 1990s and early 2000s, amplified by fringe publications and, later, online platforms. The consequences have been severe. In some cases, individuals influenced by denialist beliefs have refused life-saving antiretroviral therapy, leading to preventable illness and death.

Another category of hoaxes involves false claims about transmission. Stories about HIV-infected needles hidden in public spaces—such as cinema seats, petrol pumps, or ATM machines—circulate periodically, often accompanied by alarming warnings to “be careful.” While these messages spread quickly via social media and messaging apps, public health authorities have repeatedly found no evidence supporting such incidents. These hoaxes exploit fear and misunderstanding about how HIV is transmitted, which in reality requires specific conditions such as the exchange of certain bodily fluids, not casual contact.

Similarly, there are persistent myths about “miracle cures.” From herbal remedies to unproven alternative treatments, these claims often target vulnerable individuals seeking hope. While some alternative therapies may support general wellbeing, none have been proven to cure HIV. Antiretroviral therapy remains the only scientifically validated treatment that allows people living with HIV to lead long, healthy lives and significantly reduces the risk of transmission. Hoaxes promoting fake cures can lead people to abandon effective treatment, with serious health consequences.

The rise of the internet and social media has accelerated the spread of HIV misinformation. Platforms that prioritise engagement can inadvertently amplify sensational or controversial content, regardless of accuracy. A dramatic or fear-inducing story is more likely to be shared than a measured, evidence-based explanation. This creates an environment where hoaxes can spread rapidly, reaching audiences far beyond their original source.

Stigma plays a major role in the persistence of these hoaxes. HIV has long been associated with marginalised groups, including gay men, sex workers, and people who inject drugs. Misinformation often reinforces harmful stereotypes, portraying HIV as a moral failing rather than a medical condition. This stigma discourages open discussion, testing, and treatment, allowing both the virus and the myths surrounding it to persist.

Education is one of the most effective tools for combating HIV hoaxes. Comprehensive, evidence-based information about transmission, prevention, and treatment helps dispel myths and empowers individuals to make informed decisions. Public health campaigns have made significant progress in recent decades, promoting messages such as “Undetectable = Untransmittable” (U=U), which highlights that people with HIV who maintain an undetectable viral load cannot pass the virus on sexually. However, these messages must compete with a constant trickle of misinformation.

Critical thinking and media literacy are equally important. Encouraging people to question the source of information, check for scientific evidence, and consult reputable organisations can reduce the spread of false claims. Health authorities, researchers, and community organisations must also remain proactive, addressing new hoaxes as they emerge and communicating clearly with the public.

It is also essential to approach the issue with empathy. People who believe or share HIV hoaxes are not always acting maliciously; many are responding to fear, confusion, or a lack of access to accurate information. Shaming or dismissing them can reinforce distrust. Instead, respectful dialogue and accessible education are more likely to change minds and build trust.

HIV hoaxes are more than harmless rumours—they can have real and dangerous consequences. By undermining trust in science, spreading fear, and discouraging effective prevention and treatment, they pose a significant challenge to global public health. Combating them requires a combination of accurate information, critical thinking, and compassionate communication. As science continues to advance in the fight against HIV, ensuring that truth keeps pace with misinformation remains an ongoing and essential task.

Tim Alderman ©️2026

Looking Ahead with AI for the Blind & Vision Impaired

Article, General Interest, Health Information, , , , ,

Artificial intelligence is rapidly transforming accessibility, offering powerful new tools that enhance independence, safety, and quality of life for people who are blind or vision impaired. Once limited to assistive devices like canes or guide dogs, support systems are now increasingly digital, intelligent, and deeply integrated into everyday life.

One of the most significant breakthroughs lies in computer vision—AI systems that can interpret and describe the visual world. Applications like Seeing AI and Be My Eyes use smartphone cameras and AI to narrate surroundings in real time. These tools can identify objects, read printed text aloud, recognize faces, and even describe scenes such as a busy street or a grocery shelf. For someone with vision impairment, this transforms a smartphone into a powerful, pocket-sized assistant that bridges the gap between sight and sound.

Navigation is another area where AI has made profound improvements. Traditional GPS systems often lack the precision needed for safe pedestrian travel, but AI-enhanced navigation apps now provide detailed, context-aware guidance. For example, Google Maps has introduced features tailored for visually impaired users, offering voice guidance that includes landmarks, intersections, and alerts for obstacles. Combined with wearable devices like smart glasses, AI can provide spatial awareness, helping users navigate unfamiliar environments with greater confidence and independence.

Text recognition and speech synthesis have also evolved dramatically. Optical Character Recognition (OCR), powered by AI, allows users to scan books, menus, mail, and labels, converting them into spoken words instantly. This removes reliance on others for reading everyday materials. Meanwhile, advances in natural-sounding text-to-speech systems mean that information is delivered in more human-like, less robotic voices, making long listening sessions more comfortable and engaging.

AI is also reshaping education and employment opportunities. Students who are blind or vision impaired can now access textbooks, diagrams, and digital content through AI-driven platforms that convert visual information into accessible formats. In workplaces, tools that transcribe meetings, describe visual presentations, or assist with screen navigation are leveling the playing field. Software like JAWS screen reader and NVDA screen reader have incorporated AI features to better interpret complex web content, making it easier to browse the internet, manage documents, and communicate professionally.

Social inclusion is another powerful benefit. AI-powered accessibility tools enable greater participation in social media, entertainment, and communication. Image description features on platforms like Instagram and Facebook automatically generate alt text, allowing users to understand shared photos. Streaming services are also improving audio descriptions using AI, giving richer context to movies and television shows. This ensures that people with visual impairments can engage in shared cultural experiences more fully.

Healthcare is also being transformed. AI can assist in early detection of eye diseases such as Glaucoma and Diabetic Retinopathy by analyzing retinal images more quickly and accurately than traditional methods. Early diagnosis can prevent or slow vision loss, highlighting AI’s role not just in accessibility, but in prevention and treatment as well.

Despite these advances, challenges remain. Accessibility tools can be expensive, and not all technologies are universally designed with inclusivity in mind. There is also a learning curve associated with adopting new tools, particularly for older users. However, as AI continues to evolve and become more widespread, costs are likely to decrease and usability will improve.

Ethical considerations are equally important. Developers must ensure that AI systems are trained on diverse datasets to avoid biases that could limit their effectiveness. Privacy is another concern, especially for applications that rely on cameras and real-time data processing. Ensuring that users maintain control over their data is essential for building trust.

Looking ahead, the future of AI for the blind and vision impaired is incredibly promising. Emerging technologies such as real-time object tracking, emotional recognition, and advanced wearable devices could further enhance independence. Imagine a world where AI not only describes the environment but anticipates needs—alerting a user to a friend approaching, a bus arriving, or a hazard ahead before it becomes a problem.

In conclusion, AI is not just a technological advancement; it is a tool for empowerment. By breaking down barriers to information, mobility, and communication, it is helping people who are blind or vision impaired lead more independent, connected, and fulfilling lives. As innovation continues, the focus must remain on inclusivity, ensuring that these benefits are accessible to all who need them.

Tim Alderman ©️ 2026

A 40 Year Journey Into (And Out Of) Fear Part 7

Article, biography, Gay Interest, History, HIV/AIDS, , , , , ,

One of the major problems that concerned both my doctor and myself was my weight. Having dropped to 48kg when admitted to Marks Pavilion, and being of slight build, I was having trouble putting it back on. Fortunately for me, the Albion Street Clinic started running a Deca-Durabolin (an injectable anabolic steroid) trial at this time to attempt to counter the effects of Wasting Syndrome, a common problem within the AIDS demographic. I’m not sure this far down the line of it’s duration, but I think it was 6-8 weeks, with a weekly injection, and weigh-in. What I do remember about it was the drastic change to my eating habits. For the period of the trial, I was obsessed with eating! From the moment I woke up, to the time I went to bed…all I thought about was food! I was continually planning my next meal, my next snacks! The (successful) end to this was a meteoric weight gain in a very short period of time. My usual weight was around 64kg…by the time the trial ended I was at 84kg. On going out for dinner with friends I hadn’t seen for a while, one guy exclaimed “What have you done…you look like a teddy bear!”. To be honest, I was thrilled to have put so much on, especially seeing how I had seen myself in the low, and scary, weight range. I’m thankful to say that after the trial ended, my weight dropped back to my usual range.

There is a big problem with surviving AIDS, and spending 18 months recovering and keeping busy with doctors, clinics, hospitals, peer groups, and treatment compliance sessions…and having a lot of same either end, or become more spread out…BOREDOM! Sitting at home watching “Days of Our Lives” and “The Bold and the Beautiful” daily is not a fulfilling experience! But what to do was the big question. Not fit enough to return to full-time work, and not wanting to return to my old profession in retail. As frightening as the whole AIDS experience had been, its lasting legacy was the overwhelming desire to change my life direction. It made me realise how much of my life I’d wasted doing work I hated, and never being brave enough to take the leap to follow my dreams, to step into the unknown with confidence! This was the point where everything changed, where I finally found enjoyment and fulfilment in my life’s choices.

But the question still remained…how to take the first step? I had been receiving “Talkabout” for some time, and recollected that I had seen an ad for volunteering at the…then…PLWHA office in Darlinghurst. A phone call, and a meeting with another volunteer in the Oxford Street offices…and I found myself on the reception desk, initially one day a week, but it was a fun office to be in, so I started turning up daily. This was also my first encounter with computers (other than my experiences in the 80s with owning a Commodore 64). This pushed me to do courses in basic computing, and the Microsoft Office Suite. Around the same time I did a Peer Group Facilitator course with ACON, brought about by me having done a HIV/AIDS survivor group with them. I went on to facilitate some groups.

After around 6 months on reception, Jo Watson…the then Research Officer…asked me if I’d like to work with her as an assistant research officer. The office manager (Ryan McGlaughlin) interviewed me and I got the job. It was here that I wrote my first article for “Talkabout”, a quite humorous piece on my doctor, Cassy Workman. Though not named, it was obvious (by those who knew her, or were patients) who it was about. From this point I became a regular contributor to Talkabout, and 28 years later, I’m still writing for the magazine…with occasional breaks! I also became a member of the Talkabout Working Group. Like many occasions in community groups, funding dried up, and I had to move on.

It was just after this that I was informed that a research position was opening up with another community-funded project called Positively Working. Having survived AIDS, and now being in a position to orientate myself to new work experiences…outside what I had been doing post AIDS… it was a position I slotted into quite neatly. At Positively Working, we were compiling a report (I was working with Sonia Lawless) on the return-to-work needs of guys like me who had survived AIDS, and we’re now faced with the very real situation of…what do I do now; and where the hell do I go now! I personally interviewed a number of the guys, and it was quite eye opening! Once again, after six months the funding dried up. We got the report out, and once again I was faced with what to do!

There was one very interesting…and disturbing…occurance that resulted from my time there. Several of the guys I interviewed mentioned that they had used the “services” of a supposed HIV/AIDS employment service on Oxford Street called “Options”. Evidently Options had been using guys attending there as a free workforce in the office under the guise of “work experience”. I was very angry to hear this, and decided, as a writer for Talkabout, to investigate and expose this issue. I approached the office as a return-to-work client. Not only were they using their clients as an unpaid workforce, they were also not providing the services they were touting, to help guys break back into the workforce. Clients were being placed in front of computer screens with the usual run-of-the-mill employment services, and told to find a job. Contrary to their name, Optoons provided no options.

I wrote a scathing article on them for Talkabout. The editor forwarded the draft onto them, basically saying this is about to come out! Well, didn’t the shit hit the fan! The manager, Peter somebody, demanded to see me. I turned up at his office, and he tried the good old sweet talk! Naw, didn’t sway me. The threats came next, to sue Talkabout, the editor, and me! I was amused! Anyway, to calm the waters, and ensure no action was taken, the editor did a rewrite. I wasn’t happy about it, but at least wanted Options thrown into the spotlight, so allowed a very, very watered down piece to be published. Several months later, Options closed. I just smiled!

I undertook Positive Speaker Bureau training in 1998. My first gig was to a group of nurses at the Albion Street Centre. At the end of the talk, I opened the floor to questions. The final question floored me, as training hadn’t prepared me for this one…did I have survivor guilt? I did…after a long pause…give an answer. Yes, I did! I spent 12 years as a PSB speaker, being quite in demand with community groups, universities, and nurse training talks. I had no problems filling an hour. I was also on the PSB working group.

Two of our major community groups instigated return-to-work groups, but in many respects they missed the mark. The Positively Working report pointed out that one of the major requirements of AIDS survivors contemplating how to move on, or approach a return to the workforce, was choices, be it returning to their previous profession, or taking up education or training, or a myriad of other options such as opening a business, or moving a hobby to a business. What they were finding in the groups that were set up was a repeat of information that wasn’t new to them, or of no use at all. There needed to be more options than resume writing, or interview techniques. One project that did have a different approach was “Reconstruction”, a group facilitated by Pene Manolas. In my own time, I did a number of talks at these group meetings, encouraging guys to follow dreams and desires to find more fulfilment in lives now “reset to zero” and going off in new directions.

In 1999, I was on a very unpleasant…understatement…liquid protease inhibitor called Retonavir. It was very effective, but disgusting to take. Cassy Workman supplied her patients on it with gel capsules and a dropper. Putting it into the capsules made it a lot easier to take. I made an appearance on a popular television series at the time called “Healthy, Wealthy & Wise”, who were doing a segment on HIV and it’s impacts. I can be seen sitting in a park in The Rocks, and filling gel capsules with Retonavir. I guess that was my 15 minutes of fame!

Also in 1999, following my stint with the Positively Working project, I briefly returned to my old retail career…but as a cash office supervisor this time, with Angus & Robertson booksellers in the city. The manager there had a large group of gay friends, so when, during my interview, I explained a long absence from employment on AIDS and recovery, she understood exactly what was going on. It wasn’t why I got the job, but my long retail background on cash handling.

1999 was another busy, and scary, year. I noticed I was having problems walking a straight line up the footpath. It wasn’t neuropathy, as at that stage it wasn’t as bad as now. As I walked, I drifted to the left of the path, and had difficulty getting myself back to the centre. Over a few weeks, it got progressively worse. At one stage I was using a walking stick to maintain balance. Cassy sent me to see Bruce Brew, a well known neurologist at St. Vincents. He was baffled, as was Cassy. At one stage he sent a letter to Cassy saying he suspected it may be PML (Progressive multifocal leukoencephalopathy is a rare, severe, and often fatal viral brain infection characterised by progressive white matter damage. It is caused by the JC virus (JCV), which lies dormant in most adults but activates in individuals with severely compromised immunity. Common in HIV/AIDS, cancer, or patients on specific immunosuppressants, it causes rapid neurological decline). A very scary prospect! AIDS dementia was another possibility.For her part, Cassy ordered up a raft of tests…iron, folate, B12, cortisol, thyroid, CT scan, gallium scan, Addison’s disease. The last resort was an MRI! And there it was! THE VIRUS…on my brain! It could frightened be seen in the scans! During a drug combination change, it had picked a small opportunity when the new combination was starting to kick in to cross the blood/brain barrier, and up into my head. The solution was actually very simple…when the new combination kicked in, it kicked the virus out.

I was at A & R’s for about 4 months…and encountered the difficulties other guys had of obtaining meds from hospital pharmacies during lunch breaks, and fitting in doctors appointments…when I got a phone call from Bill Whittaker (now deceased) to help out doing data entry for the AIDS Research Initiative, which was run out of Cassy’s medical practice in Little Oxford Street (called Ground Zero Medical, as it was on the site of the original Club 80). So I returned to Darlinghurst!

It turned out to be a double job. On days I wasn’t working for the ARI, I was doing reception work in the medical practice. It was here on a working day in the practice that I developed excruciating pain in my back, in the kidney area. Cassy diagnosed Indinavir sludge, a build up of Indinavir in the kidneys. I was told to drink a lot of water…it didn’t help! I spent a good part of the day in the nurses station with Janice (the practices nurse) unable to keep still because of the pain, which just wouldn’t let up! Cassy checked on me a couple of times, but didn’t suggest I go to A & E. By mid afternoon, Janice took it upon herself to call a taxi to take me to St. Vincent’s. I needed to have a stent inserted in my kidneys to drain the sludge.

I was so disappointed that Cassy had been so blasé about it that I quit her practice. And her as my doctor!

A new relationship started with Dr David Austin, at Holdsworth House Medical Centre.

Tim Alderman ©️ 2026

Disabling The Disabled

Article, Health Information, , , ,

Can I be blunt here? One of the biggest problems of living with disabilities is that people think you are disabled!

Forgive me for delving into my nightly vice of “Home and Away” but they were covering the touchy subject of Alzheimer’s recently. Irene Roberts had been diagnosed with this, and not only were they handling the subject quite sympathetically, there is a touch of scary realism that many of us with disabilities are faced with. Irene had decided to travel overseas for whatever remains of her lucid periods. However, John Palmer is convinced that this is a bad decision on her part, and was being quite vocal about it, telling her that travel overseas is dangerous, and that selling her home to finance it would leave her with no assets. Irene was sticking with her decision, and had put plans in place to cover any contingency. But can you see what John was done here? He’s decided that seeing as Irene has to deal with the disabling effects of Alzheimers, that she’s become incapable of making decisions for herself. Everyone is doing what they consider to be helping her…but no one asks her if that is what she wants! She doesn’t necessarily want things to be easier! She wants to be seen as an independent person, capable of making her own decisions!

Yes, this is only happening on a daily soap, but it raises an important issue…the attempts by outside forces to influence the decisions of someone with a disability, attempts to downplay their ability to make decisions, to try to control their lives, and disempowers them.

I’m legally blind (an important label when accessing services), and have mobility and balance issues due to medication-induced peripheral neuropathy. I’m on an aged care home support package, and access services through a service provider. Overall, I’m pleased with the services I get, which includes cleaning and assisted shopping. One of the workers who takes me shopping mothers me! I hate it…my friends will tell you I’m very independent…and despite attempts on my part to assert that I do not like it, and can make my own decisions, they persist, so I just grin and bear it. I know they mean well, but they have been taught that disabled people are DIS-abled, so they need to take control when out with us.

Many well-intentioned people make the mistake of trying to take control from us, with unwanted assistance. When I used to use a white cane (something I no longer use, as they can be dangerous on badly maintained paths and concourses), when crossing roads at crossings or lights, they would just grab my arm to guide me across. It would seem logical to me that if I’m out and about on my own, that I’m capable of doing things like crossing roads without help. The problem is…they don’t ask if I need help, it is just assumed I do. It is not only rude, it’s an attempt to take away my power to decide things for myself!

Every morning I walk my dog, I walk down the street to meet friends for lunch, or to do shopping. I go to an exercise physiology gym to do balance and stretch classes (they go out of their way so ensure I can navigate a very equipment-crowded gym, and that my requests for easily seen equipment…and placement of…during classes is seen too). Obviously I write articles, using a large font. I read books, also using a large font, or access audiobooks. I look after myself on a day-to-day basis, doing laundry, bathing, preparing meals, I memorise the number of steps I need to negotiate, in the absence of disability ramps, the safest routes to take to access shops and services. So I actually lead a pretty normal, mundane life despite the absence of vision. If I need to access things in unfamiliar territory, I either use my service providers drivers, or ask friends to go with me. In other words, I’m regulating my own life. If you want to assist me…please just ask me if I need help!

Despite the Invictus Games, the disabled Olympics, and other peer led examples of blind and physically disabled activities, there is still a perception that when we are in public places, we need to be helped, as we are incapable of making decisions for ourselves. Please…don’t just move in to help without asking permission! We are more than capable of developing our own coping mechanisms. This is how we empower ourselves. Of course, this doesn’t apply to everyone who wants to help, but experience has taught me that many act without thinking first.

Remember…if we need help, we’ll ask! At that point, we appreciate it.

Tim Alderman ©️2025

A 40 Year Journey Into (And Out Of) Fear Part 6

Article, Autobiography, Gay Interest, Health Information, History, HIV/AIDS, , , , , ,

We had been forewarned! Told that the new antiretrovirals were game changers. That people who were on the brink of death could be reprieved, could, like Lazarus, be brought back to life. The community organisations were given time to prepare for a change in how HIV/AIDS was handled! Did they listen? From my perspective…no!

I was discharged from Prince Henry Hospital on the 19th June 1996, after ten days in hospital. That was how quickly things were turned around. It was winter. I weighed just under 50kg, and I really felt the cold. I got a taxi from the hospital to Bondi Junction. My first port of call was Target for a new duna, and warm clothing, then home.

And so began a period of self-imposed boredom. For those of us who survived the final ravages of AIDS, we were, for a time, in a no-mans land. Caught between recovering from something we thought would be our end (and under earlier circumstances would have been), and having to mentally and physically readjust ourselves to an ongoing life, with minimal support services, not knowing what to do with ourselves, and realising that nobody else knew what to do with us either. It was a new world for all of us!

For anyone who thinks that surviving something as devastating as AIDS would send me back to my old life…think again! For the next 18 months, life became an often tiring and frustrating round of clinics, doctors appointments, specialists, support services, support groups, and pharmacy trips. When not doing that, I was stuck in front of the television watching “Days of Our Lives” and other trash daytime television. I ruminated on, and disected my previous life, as it was now a pre-AIDS, and post-AIDS existence…as that is what it was! It wasn’t a life! Change was going to be essential!

So reality started setting in…where exactly was I going from here? Taking vast amounts of antiretrovirals came with its own problems. In these early days of HAART, compliance was drummed into you. The drugs came with both dietary and time constraints. You often couldn’t eat fatty foods prior to dosing, or they had to be taken on an empty stomach. This both restricted eating out with friends, or involved rising at ridiculous times to conform. Likewise, doses had to be eight hours apart, so you were often getting out of bed in the early hours just to take pills. So I was often tired, and cranky! Added onto an already heavy pill burden were prophylaxis drugs like bactrim, dapsone, ketaconizole, clarithromycin, and the list goes on, which were often taken a couple of times daily. Then we have side effects…mainly diarrhoea and nausea. I was getting scripts for Imodium as I was buying fifteen by five boxes (yes, 75) at a time. If I was lucky, they’d last one month. They often didn’t! A bucket of Napisan was permanently in the bathroom for soiled underwear. It was a nightmare, and I often wondered if I had survived AIDS, to die of organ failure from all the drugs I was taking! It sounds like an exaggeration when I tell people that initially I was taking around 340 pills a week…but just look at Imodium, where I was taking a staggering 140 pills a week, or more!

Help came from the wonderful, empathetic Pene Manolas, and her “Calao” Project. Caleo was a treatment management program, whose sole purpose was to encourage and empower those attending to remain compliant despite the burdensome load of pills we were taking. Over the 6 (or 8) weeks of the program you were given tools to help you achieve that aim. It was incredibly successful, and lasted for 2 years, then ceased due to funding. It was not my last encounter with Pene.

At the outpatient eye clinic at Prince of Wales (POW) hospital in Randwick, I was still attending on a monthly basis, and continued, at least for a time, to get the ganciclovir injections directly into the left eye. In 1998, Professor Patrick Versace asked me if Ivwas willing to participate in the Vitrasert Implant trial. The tiny implant was inserted into both eyes, and leached ganciclovir into the eyes over a 9 month period. The chances of developing a cataract were estimated at 4%. I was a more than willing participant in this trial, knowing how stressful it was having the intraocular injections. So, two operations to insert the implants, which were held in place with a stitch. The 4% chance of developing cataracts became 100%, so then another two operations to remove the cataracts, and insert new lenses. The whole sad part of this was, that with HAART proving so successful at keeping opportunistic illnesses away, they were never needed, despite their success. It is still present in my right eye.

Then the panic attacks started. I would wake up during the night and feel like my bedclothes were suffocating me, and had to throw them off. I’d get claustrophobic in underground trains, and stopped getting them. I had a panic attack one Sunday night, home on my own watching television. A gay lifeline had been established by one of the community groups… can’t remember who. I rang the line, needing someone to talk to, only to find their phones weren’t manned on Sundays…just an answering machine. They rang me the next day to apologise, but it would have been a bit late if I was suicidal!

I had a transition period getting used to bad vision, and only one eye. I had a couple of serious accidents. I was on my way to the POW eye clinic one week day, and got caught in this crush of people rushing to get a bus on Crown Street. There was a wooden bus seat just out of my line of vision, and my knees hit it, and I went for a sixer. Took the skin off my knees and shins. Only one guy stopped to help me! One! He checked me over, and despite how serious the wounds were, I told him I was on my way to the hospital anyway. He saw me onto the bus, and the nurse in the eye clinic patched me up. The second time, on the opposite side of Crown Street, I tripped over some tree roots which had pushed the asphalt up. This time the skin was off both knees. I then realised that I had no perspective in my one working eye…the footpath looked flat to me. I started slowing down my walking from that time on. My peripheral neuropathy was setting in at this stage as well, moving from my feet to my ankles and lower shin. This caused me to stagger when I walked, and was responsible for getting me banned from three gay hotels over time. I wrote a letter to the Star Observer about it when the bouncers denied me entry to the Colombian Hotel on the night of my 50th birthday, and refused to get a manager or supervisor for me to speak too. The Colombian apologised in a return letter, saying the bouncers had been out of line.

The most serious falls happened in Bondi. I went to visit a favourite gift store down there, and while wandering around the store, my legs just gave out on me and I collapsed on the floor. The shop assistant, who had been talking to the owner, helped me up. Five minutes later, it happened again. Thankfully I didn’t break anything. But this time, with a frustrated look on their faces, without asking me what was wrong (in retrospect, I should have requested an ambulance) and assuming I was either drunk or drugged, just grabbed my arms, ushered me out of the shop, and sat me on the footpath up against their window. I was in a pretty serious state of shock, not knowing what was going on. I sat there for over an hour, not game to try standing again in case the same thing happened. When I eventually tested them, they seemed to be fine. I started walking home…we had moved from Penkivil Street to Ocesn Steet at this time…up Bondi Road. Deciding to visit a cafe on the other side, I crossed at an intersection that had both lights, and a small pedestrian crossing. I crossed through the lights fine, but on using the crossing my legs just gave out again, and I collapsed on the road, hitting my head on the gutter. Thankfully there was no turning traffic, and a guy sitting in the window of a nearby pub rushed out, grabbed me and helped me to the footpath. I eventually got upl had a coffee in the cafe, and walked home. The gash on my head was serious enough to go to hospital. It never happened again, though I suspect it was a precursor for what was to come!

Feeling a bit lonely and outcast at this time, I decided to try a personal classified in the Star Observer. I was quite open about my HIV status, and that I was damaged goods (yes, I really did say that!) from AIDS. I received about 10 letters in reply…I still have them…all from HIV+ guys. I met a number of them, though none really compatible except for about 3. One was a serial replier to classifieds whom I had been warned about. He was a bit of a problem, so dropped very quickly. Had a one-nighter with another (I’d had no secxual encounters for about two years at this time), and I liked him, but he didn’t want anything further. Then I met Michael, who lived at Rose Bay. We started a bit of a “thing”, though I think it was more a matter of us both being lonely, more so than being compatible, and we both had someone to go places with. Having had a number of bad experiences through the classifieds, the first thing he said to me when I knocked on his door was “Wow…you’re actually good looking!”.

Between 1996, and 1997 antiretrovirals started being pumped out at a staggering rate. Over this period, I must have been, in HAART combinations of three or four drugs, on every drug that was released (thank heavens for the PBS, who approved them very quickly). These included AZT, 3TC, Indinavir (a high dosage caused nausea), Nelfinavir (caused chronic diarrhoea), Saquinavir, Neverapine, Retonavir (more on this shortly), Combavir (AZT+ 3TC)l Efavirenz, and Abacavir. The quick approval of drugs, due to their efficacy, had its drawbacks. Long term side effects often popped up as time went on, for example it was found that Indinavir could cause kidney stones. For me, with both AZT and 3TC still being included in my combinations, my peripheral neuropathy got worse (even now in 2025 I have totally numb feet, which now affects my balance).

In early 1998, through a mutual friend I was out with one Sunday night, I met David in the bottom bar of the Midnight Shift. I was in a casual relationship with Michael, and he was in a relationship as well. We finally surfaced a couple of days later, both deciding to end our current relationships. David and I then went on to be in a relationship for 16 years.

Nelfinavir was the worse drug of all as far as diarrhoea went. David and I were both on it, and it was a nightmare. We were both scared to go out for any length of time, as we would inevitability be caught short. Nelfinavir gave you no warning (and it over rode any amount of Imodium) so you were often caught out grocery shopping, at a movie, or on a walk. We discovered that public toilets were disgusting! There were often underwear changes several times a day. I got so fed up with it restricting my life, that I just charged into Cassy’s consulting room, and demanded she change it! She did! Shortly after, David was also taken off it.

However, despite all this, my viral load continued to, initially, drop, then maintained itself at undetectable. My CD4 cells continued to do a slow, but constant, rise. Probably the only reason we put up with what we did.

But even more changes were coming!

Tim Alderman ©️2025

Why HIV/AIDS History Matters!

Article, Gay Interest, Health Information, History, HIV/AIDS, , , , ,

Please note that my use of language here is deliberate, and of-the-time! I make no apologies for it!

The one thing that really got my back up during the Coronavirus/Covid pandemic was that this was touted as the most devastating pandemic of our times. There was the occasional nod to the 1918 Spanish flu pandemic, but it was almost as if the 40-odd year whispers about the most devastating pandemic of the modern era…HIV/AIDS…had never happened. I looked at the worldwide death figures from Covid, approxiamately 7.5 million, with many millions more recovering from it. I then compare this to the death rates from HIV/AIDS over the last 40+ years which stands at over 43 million and still rising (630,000 in 2023 alone) despite modern treatments. The difference between the two pandemics is staggering! And of course, up until 1996 and the advent of HAART (Highly Active AntiRetroviral Therapy), your chances of recovering from AIDS was almost zero!

In this day and age, your chances of living with HIV with no serious illness implications, and by taking 1 or 2 pills a day, is very high. Yes, stigma and discrimination still exist, and I would never downplay that, but for the ease of maintaining good health for the lifetime you may have it for, there is little recognition now for the 40 year battle that led to now! Most people who seroconvert now, due in many respects to generational experiences, have no knowledge of the history of HIV/AIDS, and may never encounter a long term survivor who has lived that history!

So, why is HIV/AIDS history important? Well for starters, the response was nothing like Covid! HIV/AIDS has to be viewed in its main time setting of the 1980s/90s. This alone is a historically important era, as the LGBT community gained rights under the laws of many countries, where we finally came out into the open and proudly displayed our sexuality to the world. In retrospect, HIV/AIDS could not have picked a worse time to raise its head! It’s effects upon a newly openly emerging sub-culture were devastating, and in a world where hatred, misinformation, prejudice and stigma were still rife within the general communities we lived in, for many it was a rough journey from being closeted, to being “out”. So, just as my journey as a late emerging 26yo gay male, just starting out on my sexual awakening, little knowing that three years later both that journey and my HIV journey would go forward hand in hand, so the journey of the LGBT community would find itself both politically and socially intertwined.

From a community perspective, HIV/AIDS created an affirming group of mixed people. That here in Sydney we created what was an LGBT ghetto gave us great strength. The vast majority of this community lived in the Darlinghurst/Surry Hill/Paddington/Newtown/Kings Cross areas, and in many respects our services were centred in these areas. We had our bars, hotels and nightclubs; our own retail strip; cafes and restaurants; our newspapers; medical, dental and legal services; community and support groups. A self-contained community within the wider communit. There was a security and strength within this.

And this is where the strength of the community becomes historically important when HIV/AIDS appeared in the early 1980s. Despite knowing very little about the origins or eventual outcomes of what was to become a worldwide pandemic, the community stepped in early to put both political, medical and support mechanisms in place, as what started as a dribble of cases became a waterfall.

Out of our community of both positive and negative individuals, gay men and lesbians, we started negotiating with politicians to make funds available to help set up support mechanisms, and fortunately we had the very foresighted health minister Neal Blewett conferring with our community on strategy. As a country, we were among the first in the world to start taking the upper hand with HIV/AIDS,to attempt to minimise its impacts

We established what are now long-standing groups for both political clout, and support for those infected. ACON (AIDS Council of NSW), NAPWA (National Association of People Living with HIV/AIDS), BGF (Bobby Goldsmith Foundation), CSN (Community Support Network), ANKALI, PLWHA (NSW) Inc (People Living with HIV/AIDS), ASHM (Australian Society of HIV Medicine), Maitraya Day Centre, NorthAIDS, HALC (HIV/AIDS Legal Centre), NUAA (NSW Users and AIDS Association), ACTUP, and many other groups (even an AIDS bus at one stage) had their foundations in the 1980s/90s, and many still continue today within the framework of an evolving pandemic.

A lot of negativity also existed alongside this. Misinformation raised its ugly head even in our hospitals, leading to disgraceful headlines regarding full contagion gear, meals being left outside patients doors. Politicians like the Rev Fred Nile openly created fear and religious discrimination through misinformation. People in contact with HIV/AIDS patients wouldn’t touch crockery, cutlery, glassware, bed linen, toothbrushes. There was no open dialogue about those infected sexually, through blood transfusions, or needles. Safe sex messages became confused, and the badly timed Grim Reaper ad appeared. There was a perception of HIV/AIDS being a “gay disease” even when it crossed over into the straight community. Virus’s do not discriminate!

The community itself suffered innumerable and relentless loss as the pandemic ravaged our social circles. Funerals were daily affairs, our newspapers death notices took up pages. It politicised Mardi Gras! St Vincent’s Hospital established Ward 17 South as a dedicated AIDS ward, and set itself up as the premiere health care hospital, along with palliative care at the Sacred Heart Hospice.

Money poured in…not always political funding, but from within the community itself. Pubs ran auctions, and groups like BGF established fund raisers such as the Bake-Off. We had dedicated HIV GPs, and PBS funding for HIV treatments were established, so that care and treatments were always within the financial constraints of those on pensions. Government departments such as Centrelink, and the Department of Housing came on board with fast track pension approvals, and rental subsidies. Centres, such as the Dental Hospital set up trials. Clinics became specialised. We established memorials such as the Candlelight Vigil, the AIDS quilt, World AIDS Day, and the AIDS Memorial Garden in Sydney Park, so that grief could be openly expressed, never alone, but nurtured within a group setting.

This is why HIV/AIDS history in important, not just as to how a community responded to a seemingly chaotic pandemic, bringing all its diverse aspects together to create support and care, but how we, as individuals, have our seperate and diverse stories of how our lives were, in many ways, empowered and enriched within the structures we had created. Our lives, and deaths, mattered.

This history must never be forgotten. Recent pandemics such as Covid could have taken lessons from these pages of history. There is strength in community, provided we evade the negativity of exclusion, stigma and prejudice.

Sometimes, instead of looking forward, we need to look back.

Interestingly, from a historic perspective, there has never been a review, detailed study, or a commission into the handling of the HIV/AIDS pandemic. It would be fascinating to see what was revealed!

And over 40 years down the line from the first infections, we seem to be no closer to having a vaccine, or method of eradication! At this time, despite being able to suppress it using antiretrovirals, it would appear that HIV still has the upper hand!

Tim Alderman ©️2025

A 40 Year Journey Into (And Out Of) Fear Part 5

Article, Autobiography, Gay Interest, Health Information, History, HIV/AIDS, , , , , , , ,

The period of the Great Denial was about to begin.

I have copies of many of my medical records from around 1994 through to 1999. Included are correspondence between my GP and specialists, information on trials, pathology, viral loads, hospital discharges, along with my own notes giving a chronology to all that was going on. I haven’t actually looked through them for many years. Perusing them now is a very scary process. How I ever survived all this I do not know! There are some frightening prognosis, and the word “enigmatic” appears more than once as my medicos tried to work out just what the hell was going on with many of my symptoms, and test results. If I was religious, I’d say it was a miracle! But I’m not religious! This was pure stubbornness, nothing else!

Ever since having pneumonia, I’d had ongoing problems with anaemia, and though possibly just because I was HIV+, it was later acknowledged by Professor Dwyer, from POW hospital, that there was a distinct possibility it was caused by AZT. I do remember how tired it made me feel. Everything was an effort! I used to walk from Darlinghurst to the then Redfern Mall in Surry Hills to do my groceries…Clancy’s in Darlo were scandalously overpriced…and it was a slow, exhausting walk.

Everything started to decline. For most of the two years between 1994 and 1996, I was put on, and taken off AZT. My CD4 counts dropped to 160, and continued on a slow downhill slide from there. My weight started dropping! In one letter from a specialist to Marilyn McMurchie, it was stated that my weight was 52kg! Considering that for many more recent years my weight was stable at 68kg, and that I now try to maintain it at between 74kg and 76kg, find it hard to visualise myself at 52kg! During my recovery years of late 1996/1997, drinking mates at The Oxford informed me, scarily, that despite wearing baggy clothes to try to disguise it, they could tell I was rapidly losing weight, and speculated on when I would just…disappear, like so many others!

Yet despite all the signs of a rapid decline towards the inevitable end, I went into full denial, and carried on as if nothing was happening. By 1995, the Stronghold Bar had closed, though I continued to DJ at the Oxford Hotel, and for the Dolphin Motor Club at the Midnight Shift. A couple of close friends died which utterly shattered me. Stuart and Don, both whom I did my gutter drag stints with, both passed…Don from stomach cancer, Stuart from AIDS. With them gone, all the wind went out of my sails, and I threw a large party at my apartment…still shared with Tony…and sold off all my costumes and drag. An era had come to an end! The other thing that ended around this time…though in some ways substituted by copious amounts of alcohol…was my sex life. Always pretty healthy up until this time, I just lost interest, and, I gues with my weight dropping at the rate it was, I just didn’t want to be seen stripped down naked!

In early 1996, Tony and I decided to move from The Dorchester in Darlinghurst, to an apartment in Penkivil St in Bondi. It was here that things took a turn for the worst. Initially, I started complaining to Tony about how dark the apartment was…it wasn’t! Then stepping out of the shower one day, I caught sight of myself in the mirror. Who was that person, that emaciated skeleton in the bathroom with me! It was a horror show! Skin stretched over bone! I often went to the French patisserie on the other side of Bondi Rd from the end of our street. Just crossing Bondi Rd was an effort. A couple of years later, I ran into the woman who used to serve me there. She told me she would watch me crossing the road, always fearing I would collapse midway, I was so thin and frail looking. She was astounded that I had survived that period (all that I said was that I had a viral infection on my brain…not quite the truth, not quite a lie…I didn’t go into detail!).

In early June 1996, I collapsed on the footpath outside my apartment building. I could hardly breathe, and had this heavy weight in the centre of my chest. My immediate thought was that a heart attack was going to spirit me away before AIDS got me! It could be a blessing! With no one around to help, I got myself into my apartment, and rang Tony to get me to St Vincent’s. It was a collapsed left lung! Thankfully neither the cardiac problems, or PCP I was suspecting.

I was in St Vincent’s Ward 17 South (the AIDS ward) for 2 weeks. Despite my vision greying out, I kept insisting that I just needed new lenses in my glasses. I saw Dr David Cooper, but although questioned regularly about my eyes, I insisted they were fine! Talk about denial! It is a period of stupidity I’ve never forgiven myself for! To my thinking, having gotten though 13 years of HIV relatively unscathed, it could not possibly get me now! My care at St Vinnie’s could not have been better, despite a massive cut to hospital funding that occurred at this time. Our HIV nurses were walking miracles. I was still on the Oxfords DJ roster at this time, though I remember the shocked look on Sandy’s face (a manager at the Oxford) when, on visiting someone else there, she realised I was in there as well. It probably looked obvious I wouldn’t be returning to the mix-decks anytime soon!

I was discharged at the end of two weeks. It is at this point where I am about to make a decision that would save my life! Feeling that Marilyn had too soft an approach to HIV, and desiring a more aggressive approach to my health care…I had my rather scary discharge papers sent to Dr Cassy Workman! Perhaps more importantly, despite being told it could take three-plus months to get in to see the tee-shirt wearing, chain-smoking Cassy…a week later her receptionist rang to say she wanted to see me…urgently!

So a few days later, I turned up at her (then) Surry Hills surgery. Her consults were far from normal, something patients were thankful for as the casual setting put them more at ease. It is not even a point of despute that Cassy was one of the most knowledgeable, most radical, most aggressive HIV GPs in Sydney at this time. Those under her care adored her. The very first thing she did when I got in was to check my eyes. She immediately suspected CMV (Cytomeglovirus retinitis). She rang Patrick Versace (a leading Sydney ophthalmologist) and arranged for me to visit him at his Hurstville eye clinic the next day. A friend drove me there the next morning. He confirmed the diagnosis. By the time I got back to Bondi Junction, I received a phone call from Cassy to say I was to get to Prince Henry hospital, at Little Bay, IMMEDIATELY! They were waiting for me!

25th June 1996! So, a very scary bus trip to Prince Henry, without even a stop-over at home. It was coming on nightfall when I got there. As promised, the nurse in triage was waiting for me. It was not a healthy boy who turned up that night. Weighing in at 48kgs, I had chronic anemia, chronic candida, chronic bilateral CMV retinitis, and 10 CD4 cells. They didn’t need to tell me prognosis was not good! I was admitted to Mark’s Pavilion (the AIDS ward) that night, then followed 2 weeks of blurred memories…life went into fast-forward! Hooked up to blood, and saline drips. Hourly blood sugar tests…my finger tips were so sore from the pricks! In my mind, this was my final pit-stop. I remember vividly how reconciled I felt about that. Not scared at all…just very much at peace at such an…inevitability!

But the twist was coming!

The ward on the floor above us in Marks Pavilion was for the HIV/AIDS Tuberculosis guys. My first morning there, I was piled into a mini van with other patients from both floors who required care at Prince of Wales (POW) hospital in Randwick. The eye clinic there was to become a very familiar place over the next couple of years. And so my first experience with the very scary ganciclovir intraocular injections. Trust me on this…no matter how necessary it may be, our eyes just don’t want needles poked into them. And will go to any means to avoid it. Trying to keep your eye still when you know a needle is heading towards it…they have to try every trick in the book. The weird thing is that it doesn’t hurt, it’s just the eyes defensive function. Anyway, we got there, and this had to be done quite a few times a week until the CMV became quiescent. Both my eyes were full of the cloudy formations typical of CMV, though my left eye was more severely affected, with only a small window of vision left in it. The optic nerve was severely affected. I was lucky…it never got into my nervous system…a very scary way to die.

There was one very touching incident that happened. One of the TB boys and myself often attended the same eye clinic. He was a good looking lad, and appearing to have little support from family and friends, I sort of took him under my wing. I consider myself to be a pretty tough guy…I’ve had enough hard strikes in my day to make me so…my friends say they admire my pragmatism. I can’t remember the guys name, but we were sitting together in the waiting room and started discussing our situations, our fears. I put my arm around his shoulder, and it was like a trigger…we both ended up in tears. Such a brief, intimate encounter, and it was the last time I saw him, but I’ve never forgotten it. The lonely guy and the tough guy sharing an instant in time. I hope he survived his TB and eye encounter. I hope his fight coontimued.

Under Immunologist Professor Dwyer I was started on a combination of old and new drugs…AZT, 3tc and the new kid on the block…the protease inhibitor Indinivir! This was the start of what was to become known as HAART (High;y Active Antitetroviral Therapy). Viral load counts were started around the same time…my initial reading in Prince Henry was 500,000! The initial high dosage of Indinivir caused nausea, so dosages were modified. I also had a bone marrow biopsy to explore how much AZT was present there. The very nervous male nurse gave me Pethidine. I was so high…an amazing experience. The biopsy was done at the rear top of my thigh, and his first sample wasn’t sufficient. Upon asking my permission to go in again for a better sample, I was so off my face I told him to do whatever he liked! There was a very nice bruise there after,

I was in Prince Henry for 2 weeks. As I stated earlier, most of it was a blur. I’m sure I had visitors, but don’t ask me who! It was all medical…including 8 trips to POW for the ganciclovir injections. At the end of the two weeks…thanks to the new drug regimes, my CD count was doing a slow rise. Handing me over to the care of clinicians and my GP, was a logical step.

So I was discharged from Prince Henry on the 9th July 1996. I got a cab home. One would think…gee this is a really good outcome! And it should have been! I’d survived AIDS! But it was just the start of an 18 month recovery nightmare.

Thrust back into a world that was not prepared for me…for us! We became the HIV worlds Lazarus syndrome survivors! No one knew what to do with us! We were left flailing in the winds of change!

Tim Alderman ©️2025