Category Archives: Health Information

Exonerating “Patient Zero”: The Truth About ‘Patient Zero’ And HIV’s Origins

The man blamed for bringing HIV to the United States just had his name cleared.

New research has proved that Gaëtan Dugas, a French-Canadian flight attendant who was dubbed “patient zero,” did not spread HIV, the virus that causes AIDS, to the United States.

A cutting-edge analysis of blood samples from the 1970s offers new insight into how the virus spread to North America via the Caribbean from Africa. More than 1.2 million people in the United States currently live with HIV.

The research, conducted by an international team of scientists, was published this week in the journal Nature.

“No one should be blamed for the spread of a virus that no one even knew about, and how the virus moved from the Caribbean to the US in New York City in the 1970s is an open question,” co-author of the research, Dr. Michael Worobey, a professor and head of the ecology and evolutionary biology department at the University of Arizona, said at a news conference Tuesday.

“It could have been a person of any nationality. It could have even been blood products. A lot of blood products used in the United States in the 1970s actually came from Haiti,” he said. “What we’ve done here is try to get at the origins of the first cases of AIDS that were ever noticed. … When you step back in time, you see a very interesting pattern.”

‘Patient zero’ and the power of a name

In 1981, researchers at the Centers for Disease Control and Prevention first documented a mysterious disease. In their research, they linked the human immunodeficiency virus, or HIV, to sexual activity.

In 1987, the National Review referred to him as the “Columbus of AIDS,” and the New York Post called him “the man who gave us AIDS” on its front page.

“We were quite annoyed by that, because it was just simply wrong, but this doesn’t stop people from saying it, because it’s so appealing. You know, ‘The man who brought us AIDS.’ Well, if it were true, it would be annoying, but since it isn’t true,

Gaëtan Dugas was dubbed “patient zero.”

However, the letter O was misinterpreted as a zero in the scientific literature. Once the media and the public noticed the name, the damage was done.

Dugas and his family were condemned for years. In Randy Shilts’ seminal book on the AIDS crisis, “And The Band Played On,” Dugas is referenced extensively and referred to as a “sociopath” with multiple sexual partners.

In 1987, the National Review referred to him as the “Columbus of AIDS,” and the New York Post called him “the man who gave us AIDS” on its front page.

“We were quite annoyed by that, because it was just simply wrong, but this doesn’t stop people from saying it, because it’s so appealing. You know, ‘The man who brought us AIDS.’ Well, if it were true, it would be annoying, but since it isn’t true, it’s even more annoying,” said Dr. James Curran, dean of Emory University’s Rollins School of Public Health and co-director of the university’s Center for AIDS Research.

Curran, who was not involved in the new research, coordinated the AIDS task force at the CDC in 1981 and then led the HIV/AIDS division until 1995.

“The CDC never said that he was patient zero and that he was the first person,” Curran said of Dugas.

“In addition to the potential damage to his reputation, it was also a damage to scientific plausibility. That there would be a single-point source to start the epidemic in the United States is not very likely. It’s more likely that several people were infected,” Curran said. “I think that the concept of patient zero has always been wrong and flawed, and scientists never said it.”

Dugas died in 1984 of AIDS-related complications. Now, more than 30 years later, scientists have used samples of his blood to clear his name.

Going back in time with blood

For the new research, Worobey and his colleagues gathered archival blood samples in New York and San Francisco that were originally collected for a hepatitis B study in 1978 and 1979. The samples came from men who had sex with men.

The researchers screened the samples and noticed that “the prevalence of HIV positivity in these early samples from hepatitis B patients is really quite high,” Worobey said Tuesday.

From the samples, the researchers recovered eight genome sequences of HIV, representing the oldest genomes of the virus in North America. They also recovered the HIV genome from Dugas’ blood sample.

As many of the samples had degraded over time, Worobey’s lab developed a technique called “RNA jackhammering” to recover the genetic material.

The technique involves breaking down the human genomes found in the blood and then extracting the RNA of HIV to recover genetic data about the virus, an approach that’s similar to what has been used to reconstruct the ancient genome of Neanderthals in separate studies.

“The major contribution which interested me the most was their capacity to restore full sequence genomes from very old serum samples using the jackhammer technique,” Curran said of the new research.

After analyzing the genomes, the researchers found no biological evidence that Dugas was the primary case that brought HIV to the United States, and the genome from Dugas appeared typical of the other strains already in the United States at the time.

The researchers discovered strong evidence that the virus emerged in the United States from a pre-existing Caribbean epidemic in or around 1970.

How HIV arrived in the United States

Sequencing genomes allows scientists to take a peek back in time to determine how a virus emerged and where it traveled by examining how many mutations appear in the genome.

Scientists estimate that HIV was transmitting in humans after a chimpanzee infected a single person sometime in the early 20th century in sub-Saharan Africa. The general consensus among scientists is that HIV then crossed the Atlantic and quickly spread through the Caribbean before it arrived in the United States, probably from Haiti, Curran said.

Scientists at the University of Oxford published a separate study in June suggesting that HIV spread through specific migration routes — based on tourism and trade — throughout the past 50 years as it made its way around the world.

The research team behind the new genetic analysis now hopes that its findings may lead to a better understanding of how HIV moved through populations — and how blaming a single patient for the pathogen’s rise remains troublesome.

“In many ways, the historical evidence has been pointing toward the fallacy of this particular notion of patient zero for decades,” Richard McKay, a historian of medicine at the University of Cambridge and a co-author of the new research, said at Tuesday’s news conference.

“The study shines light from different angles to better understand the complexity of an important period in the past,” he said. “In view of this complexity, one of the dangers of focusing on a single patient zero when discussing the early phases of an epidemic is that we risk obscuring important, structural factors that might contribute to its development: poverty, legal and cultural inequalities, barriers to health care and education. These important determinants risk being overlooked.”

Reference

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Gay History: Shock the Gay Away: Secrets of Early Gay Aversion Therapy Revealed (PHOTOS)

With the recent announcement from Exodus International that it is closing its doors, and with its leaders offering apologies for their actions, the LGBT community is now left wondering, “Can this really be the end of ex-gay reparative therapy? Is it really over?” While the dust settles on all of this, we have to remind ourselves that it wasn’t too long ago that reparative therapies had less to do with praying the gay away and more to do with physically removing it.

Before the American Psychiatric Association (APA) declassified homosexuality as a mental disorder in 1973, aversion therapy was used routinely in hopes that it would prevent or eliminate homosexual behavior. Devices like the one below were used by therapists treating homosexual patients, and some of them were even available for use in the convenience of your own home.

In the more brutal therapy sessions, the shock was delivered directly to the male patient’s genitals every time the patient experienced any form of positive response to the slides being shown to him. The following excerpt from a Farrall Instrument catalogue advertising electroshock therapy products details how the therapies worked:

Aversive conditioning has proven an effective aid in the treatment of child molesters, transvestites, exhibitionists, alcoholics, shop lifters, and other people with similar problems. Stimulus slides are shown to the patient intermixed with neutral slides. Shock is delivered with stimulus scenes but not with neutral scenes. In reinforcing heterosexual preference in latent male homosexuals, male slides give a shock while the stimulus relief slides of females do not give shock. The patient is given a “slide change” hand button which enables him to escape or avoid a shock by rejecting a shock cue scene.

In the 1940s, homosexuals were also involuntarily committed to psychiatric facilities by their families, with the hospitals promising that the patient would eventually leave the facility cured of their “sexual illness.” Not only were they not allowed to leave, but they were often subjected to cruel and inhumane treatments, including castrations, torture drugs, shock therapy, and lobotomies.

The surgeon most credited for the rise of lobotomies was Dr. Walter Freeman, who was best known for his transorbital lobotomy, or “ice pick lobotomy.” In this procedure, the surgeon entered the prefrontal area through the patient’s eye sockets, using an instrument that resembled a common household ice pick. Out of the thousands of lobotomies Freeman performed, up to 40 percent of them were on homosexuals.

In 1941, he performed a botched lobotomy on U.S. President John F. Kennedy’s sister, Rosemary, to help calm her mood swings and occasional violent outbursts. The results were abysmal. She lived the rest of her life seriously disabled in a private psychiatric hospital, along with most of Freeman’s homosexual patients, who were in perfect health before the surgery. By the end of the 1940s, lobotomies had won the acceptance of mainstream medicine and were being performed at Johns Hopkins, Mass General Hospital, the Mayo Clinic, and other top medical institutions.

Ultimately, the fate of the lobotomy would be decided by a pill. In 1954, a new drug called Thorazine began to make its way through state mental hospitals and was initially marketed as a chemical lobotomy. With a viable alternative now in hand that didn’t require surgery, the medical community turned definitively against lobotomy.

The APA removed homosexuality from its official Diagnostic and Statistical Manual of Mental Disorders (DSM) in 1973. This decision occurred against the backdrop of great cultural shifts brought on by the civil rights movements of the 1950s to the 1970s, beginning with the African-American civil rights movement and then continuing on with the women’s and gay rights movements.

In the late 1960s, Christianity Today began printing articles and editorials concerned with the growing homosexual movement. In the early 1970s, ex-gay ministries began to emerge. In 1973, the first contemporary ex-gay ministry, Love in Action, was started in Northern California. In 1976, the first national conference of “ex-gay” ministries was held, resulting in the formation of Exodus International.

Now, 37 years and 260 ministries later, Exodus International is closing its doors. It remains to be seen whether this is truly the demise of the ex-gay movement. What we at ONE National Gay & Lesbian Archives do know for sure is that the LGBT community has persevered, regardless of what was hurled at us physically, psychologically, or spiritually, then and now. We have endured and withstood, and have the history to prove it.

PHOTOS

‘I Was A Homosexual’
Real Magazine, 1953 Courtesy of ONE National Gay & Lesbian Archives at USC Libraries Discover more images from LGBT history at www.onearchives.org

‘What Is A Homosexual?’

Confidential Magazine, 1957 Courtesy of ONE National Gay & Lesbian Archives at USC Libraries Discover more images from LGBT history at www.onearchives.org

‘Homosexuality Is A Mental Illness’
Confidential Magazine, 1957 Courtesy of ONE National Gay & Lesbian Archives at USC Libraries Discover more images from LGBT history at www.onearchives.org
‘New Theory Claims Homosexuality Can Be Cured’
Uncensored Magazine, 1969 Courtesy of ONE National Gay & Lesbian Archives at USC Libraries Discover more images from LGBT history at www.onearchives.org
‘Spitting Image’
Uncensored Magazine, 1969 Courtesy of ONE National Gay & Lesbian Archives at USC Libraries Discover more images from LGBT history at www.onearchives.org

Reference

Gay History: History Of The Ex-Gay Ministries and; The Abominable Legacy of Gay-Conversion Therapy

For most of the twentieth century, homosexuals were considered mentally ill by the psychiatric profession. This diagnosis was due entirely to prejudice and was not backed by legitimate science. Studies on homosexuality were poorly conceived, culturally biased and often used institutionalized mental patients as study subjects.

After reviewing the evidence, in 1973 the American Psychiatric Association removed homosexuality from its Diagnostic and Statistical Manual (DSM), which is its list of mental disorders. There was simply no logical or coherent reason to stigmatize gay and lesbian Americans. Not long after, every respected mainstream medical and mental heath association followed the APA’ lead.

Only four years before this monumental decision, the Stonewall riots in New York City’ Greenwich Village ushered in the dawn of the modern gay liberation movement. For the first time, GLBT people began to receive media visibility and coming out finally seemed like a viable option.

As more people chose to live honestly and openly, and gay communities began to flourish in areas such as New York and San Francisco, this presented a challenge to conservative churches, which had long believed that homosexuality was sinful behavior. Many conservative gay Christians were deeply conflicted between their beliefs and their sexual orientation. Their answer to this heart-wrenching dilemma was starting ex-gay ministries. Influenced by the miracle-seeking Jesus Movement, the ex-gay ministries adopted name and claim theology. Essentially, this meant if you kept repeating you had “changed” — even if you had not — God would eventually grant you the miracle of heterosexuality as a reward for your faith.

Love In Action was the first contemporary ex-gay ministry and was founded in 1973 in San Raphael, CA, by three men: John Evans, Rev. Kent Philpott, and Frank Worthen.

Evans ultimately denounced Love In Action after his best friend Jack McIntyre committed suicide in despair over not being able to “change.” Today, Evans assists people in healing from the psychological damage incurred by the ex-gay industry. Frank Worthen still remains with the ex-gay ministries.

Philpott, who is straight, wrote “The Third Sex? ” which featured six people who supposedly converted to heterosexuality through prayer.

Eventually, it was revealed no one in his book actually had changed, but the people reading it had no idea about the unsuccessful outcomes. As far as they knew, there was a magical place in California that had figured out the secret for making gays into straights.

As a result of Philpott’ book, within three years more than a dozen “ex-gay” ministries spontaneously sprung up across America. Two leading “ex-gay” counselors at Melodyland Christian Center in Anaheim, California – Gary Cooper and Michael Bussee – decided to organize a conference where members of the budding ex-gay movement could meet each other and network.

In September 1976, Cooper and Bussee’ vision came to fruition as sixty-two “ex-gays” journeyed to Melodyland for the world’ first “ex-gay” conference. The outcome of the retreat was the formation of Exodus International, an umbrella organization for “ex-gay” groups worldwide.

The group was rocked to its core a few years later when Bussee and Cooper acknowledged that they had not changed and were in love with each other. They soon divorced their wives, moved in together and held a commitment ceremony. In June 2007, Bussee issued an apology at an Ex-Gay Survivors Conference to all of the people he helped get involved in ex-gay ministries.

The Expansion of the Ex-Gay Industry

In 1979, Seventh Day Adventist minister Colin Cook founded Homosexuals Anonymous (HA). But Cook’ “ex-gay” empire crumbled a few years later after he was scandalized for having phone sex and giving nude massages to those he was supposedly helping become heterosexual.

As acceptance for homosexuality grew in the late 1970′, the “ex-gay” ministries had trouble attracting new recruits and growth of these programs stagnated. With the advent of AIDS, however, the ex-gay ministries found fertile growth potential from gay men who were terrified of contracting the virus.

Nonetheless, even as the epidemic spurred new growth, the “ex-gay” ministries remained relatively obscure in mainstream society. This dramatically changed in 1998 when the politically motivated Religious Right embraced the “ex-gay” ministries. Fifteen anti-gay organizations launched the “Truth In Love” newspaper and television ad campaign, with an estimated one million dollar price tag.

But the ad campaign soon backfired after University of Wyoming student Matthew Shepard was murdered because of his sexual orientation. Americans began to see the Truth In Love campaign as discriminatory and debated whether it had contributed to a climate of intolerance where hate could flourish. Due to withering criticism in the media, the anti-gay coalition ended its campaign prematurely.

Additionally, “ex-gay” poster boy John Paulk, who the ad campaign sponsors placed on the cover of Newsweek under the large headline, “Gay for Life?,” was photographed in a Washington, DC gay bar in 2000. In 2003, Michael Johnston, the star of the Truth In Love television campaign, stepped down after allegedly having sex with men he met on the Internet. He has since moved to a residential sex addiction facility in Kentucky.

Today, the main financier and facilitator of ex-gay ministries is Focus on the Family, which hosts a quarterly symposium called Love Won Out. Exodus International has also grown to more than 100 ministries and has a Washington lobbyist. Recently, the Southern Baptist Convention has entered the fray by hiring a staff member to oversee ex-gay programs.

Sadly, as long as people are made to feel ashamed for who they are, these groups will exist. The best way to counter their negative influence is showing an honest and accurate portrayal of GLBT life. When people learn that they can live rich and fulfilling lives out of the closet, the appeal of these dangerous and ineffective groups invariably wanes.

The Abominable Legacy of Gay-Conversion Therapy

Joseph Nicolosi, one of the pioneers of the practice, died last week. But his contribution to the field of psychology lives on.

“I don’t believe anyone is really gay,” Joseph Nicolosi told the New York Times in 2012. “I believe that all people are heterosexual, but that some have a homosexual problem.” Nicolosi, a psychologist, had by then written four books, with titles like Healing Homosexuality and A Parents’ Guide to Preventing Homosexuality. In 1992, he founded the National Organization for Research and Therapy of Homosexuality, or NARTH, an organization of psychologists that aims to help gay people “realize their heterosexual potential” through a practice that is alternately known as “conversion therapy,” “reparative therapy,” and “reorientation therapy.” Nicolosi died on Thursday, March 8, at age 70; NARTH’s announcement said that the cause of death was the flu.

Before NARTH’s founding, there was a small but violent history of gay conversion attempts by doctors and psychologists. In the early 20th century, Freud made attempts using hypnosis. In the 1950s, Edmund Berger advocated a “confrontational therapy” approach to gay patients, which consisted of having practitioners yell at them that they were liars and worthless. Other attempts to convert LGBT people to heterosexuality throughout history have included methods like lobotomy, electroshock to the hands, head, and genitals, testicle transplants from dead straight men “bladder washing,” castration, female circumcision, nausea-inducing drugs, and beatings. But it was Nicolosi who brought gay conversion therapy into the mainstream, popularizing it among religious communities and the American right, and turning what was once a scattered practice of abuse into a multi-million-dollar worldwide industry.

Nicolosi grew up in New York; he received a master’s degree from the New School and spoke in a thick Long Island accent. But he spent his career in Los Angeles. He received a PhD in clinical psychology from an obscure school there, and opened his own clinic in Encino in 1980. He seems to have focused his practice entirely on gay conversion attempts. The time was ripe. The social movements of the 1960s and the gay rights activism that flourished after the Stonewall Riots in 1969 ignited profound fear on the American right. Nicolosi found an eager audience for his claim that heterosexuality and traditional gender conformity were not only superior, but that deviations from them were pathological.

What Nicolosi offered was a way for homophobic parents, patients, and psychologists to validate their anti-gay feelings as being legitimated by nature, science, and psychological evidence.

The field of psychology had never been particularly welcoming to queers, but by the time Nicolosi began practicing, attempts to convert gays had already been relegated to quackery. Freud wrote that the prognosis for heterosexual feeling in homosexual patients was grim (though he did believe that gay impulses could be reduced under some circumstances). In 1932, Helene Deutsch published her study “On Female Homosexuality,” which recounted Deutsch’s attempts to instill heterosexuality in a lesbian, only to find that her patient had begun a relationship with another woman while the study was ongoing. In her conclusion, Deutsch noted that a straight relationship would have been her preferred outcome, but also seemed to acknowledge her patient’s lesbian partnership as psychologically healthy.

In 1948, just a year after Nicolosi was born, Alfred Kinsey published his groundbreaking report Sexual Behavior in the Human Male, which found that homosexual tendencies were much, much more common than had previously been assumed. In 1978, the American Psychological Association removed homosexuality from its list of clinical disorders in its Diagnostic and Statistical Manual. Anti-gay stigma and bigotry were still rampant, both within the culture and within the field, but establishment psychologists had given up conversion attempts as a lost cause.

What Nicolosi offered was a way for homophobic parents, patients, and psychologists to validate their anti-gay feelings as being legitimated by nature, science, and psychological evidence. He established NARTH in 1992 alongside Benjamin Kaufman and Charles Socarides, two other obsessively anti-gay psychologists, explicitly in reaction to the removal of homosexuality from the DSM. They spoke in appealingly professional jargon, using phrases like “trauma” and “bad attachment.”

The organization became a network for homophobic psychologists, as well as a link between the industry and the growing number of ex-gay ministries and “pray away the gay” programs on the Christian right. Nominally secular, NARTH and Nicolosi frequently embraced religious rhetoric and prayer tactics, and were listed as ministry partners by a number of homophobic Christian organizations. The Thomas Aquinas Psychological Clinic, where NARTH is headquartered, is named after a Catholic saint. “We, as citizens, need to articulate God’s intent for human sexuality,” Nicolosi told Anderson Cooper in 2007. That same year, he told an ex-gay conference, “When we live our God-given integrity and our human dignity, there is no space for sex with a guy.”

Nicolosi’s treatments often involved multiple one-on-one sessions per week. According to accounts given by former patients, he seems to have used a mix of Berger’s “confrontational therapy” methods of emotional abuse with what’s known as aversion therapy. Aversion therapy applies pain or discomfort to patients in conjunction with homosexual impulses or behaviors: Everything from snapping a rubber band around a patient’s wrist to giving them electric shocks to making them vomit. He believed that gay people had bad relationships with their parents in absolutely all cases, and spent a great deal of therapeutic time probing patients for incidents of humiliation, neglect, or contempt in their childhoods.

In his books, he instructed parents to monitor their children for supposed early signs of queerness, including shyness or “artistic” tendencies in boys.

For unclear reasons, he also believed that viewing pornography could cure homosexuality, an idea he repeatedly defended to professional gatherings. Programs associated with NARTH have been found to administer beatings to their patients. The majority of Nicolosi’s patients, like the majority of conversion therapy victims generally, were children and adolescents, forced into his care by parents who were bigoted, sadistic, or merely scared. Nicolosi encouraged these impulses; he claimed to be able to identify and reverse homosexuality in children as young as three. In his books, he instructed parents to monitor their children for supposed early signs of queerness, including shyness or “artistic” tendencies in boys.

But even before Nicolosi died, NARTH was facing a host of challenges. It lost its nonprofit status in 2012, and an important accreditation from the California Board of Behavioral Sciences was revoked in 2011. Prominent members of the group have been embroiled in controversy, including George Rekers, a conversion therapy psychologist who was discovered to have hired a 20-year-old male sex worker in 2010. California outlawed the practice for minors in 2012, cutting deeply into NARTH’s L.A.-based operations; New Jersey, Illinois, New York, Vermont, and Oregon have since passed their own bans. But the group and its imitators continue to harm both children and adults.

Discovering that you are gay, or that your child is gay, is frightening. It means confronting a future that will not look like the one that you expected, and it means realizing that you and people you love will be subjected to stigma, discrimination, harassment, and the punitive whims of the state. It means staring down a life with fewer certainties and more vulnerabilities than a straight person’s. Scared and misguided people went to Nicolosi for help, and he exploited their fear to perpetuate hate, inflicting horrible pain and incalculable psychological damage on his victims in the process. It is unfortunate that his legacy won’t die with him.

References

The Terrifying Truth About HIV Long-Term Survival!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Tim Alderman © 2018.

Cheese!


Cheese has to be one of life’s great pleasures. You can cook with it, throw it on a sandwich or crispbread, serve it in a salad, throw together a cheeseboard for a dinner party, or sit yourself down with a delicious, runny triple cream brie and a glass of wine or port. Whatever you do with it, you can be sure it will be devoured with gusto. Australia is now world-famous for its cheeses – a long way removed from the world of ‘Kraft’ cheddar and ‘Velveeta’ – a sweet, spreadable cheese packed in a similar way to ‘Kraft’ cheddar, and as my grandmother taught me, a great way to do “Vita Weet’ worms – that I grew up with.Everywhere from the Hunter Valley, to Tasmania to Western Australia – especially the Margaret River region – is doing spectacular cheddars, brie, camembert, goat’s cheese, washed rinds, ricotta, and the entire plethora of cheeses from all around the world.

Cheeses are basically classified as soft (Mozzarella, Ricotta, Feta, Haloumi, Goat’s Cheese, Chevre, Brie, Camembert, Washed Rind cheeses); semi-soft (Taleggio, Harvarti, Port Salut, Gouda, Edam, Colby); hard (Lancashire, Red Leicester, Double Gloucester, all the Cheddars, Pecorino, Manchego, Gruyere, Emmental, Jarlsberg, Provolone, Pecorino and the world famous Parmigiano Reggiano and Grana Padano); blue (Brie, Camembert, Gorgonzola, Dolcellate, Stilton, Shropshire Blue, Jersey Blue, Gippsland Blue, Roquefort, Danish Blue); and strong (Limburger, Munster, Liptauer). Showing a total lack of modesty, I can say that I throw together the best cheeseboards, and often get asked by friends to do them for functions. I don’t go for the minimalist approach recommended by the cheese experts – I’ve never really been one for food snobbery. Eating cheese should be a pig-out experience, and this is the approach I take. I offer a variety of crackers, from basic water style to lavosh and grissini. The board will usually have 3-4 of my favourite cheeses, including: Margaret River Port Dipped Cheddar or King Island Cheddar; Persian Feta or a good Chevre or Goat’s Cheese; King Island ‘Discovery’ Washed Rind Brie or a double or triple Brie; and possibly a Port Salut. This gives a good variety of flavours and textures. Then add a sprinkling of fresh fruit, and items such as fresh dates, dried apricots, honey-glazed figs, Turkish Delight, Muscatels and chocolate coated orange peel. Believe me, there is never anything left. There is a wonderful range of accompaniments for cheeses that you can make yourself, and following are a few examples. I find that the stronger cheeses are more suitable to ports, and the creamier style cheeses compliment sweet desert wines. The supermarkets have finally woken up to the fact that fridges full of ‘Coon’, ‘Kamaruka’ and ‘Kraft’ just doesn’t hold sway anymore, and the bigger Coles and Woolworths supermarkets keep huge ranges of cheese, though some of the more specialist ones require the expertise of David Jones, or the fromagerie in Jones the Grocer or Simon Johnson Providore. There is also an excellent cheese store in the food court of the GPO Building in Martin Place in the city.

Always serve cheeses at room temperature, and please use the proper knifes, otherwise the cheese is just hacked.

Tim Alderman ©2017

Black Dog Rising! A Journey Into – and Out of – Depression!

Originally published as “Not Who They Knew” in the August 1999 issue of “Talkabout” magazine.

“Easygoing”, “Always Smiling”, “A Strong Shoulder to Lean on”, “Outgoing” may all be phrases that you are familiar with, especially if you have been pigeon-holed with them, as I have over the years. This is not to say I am not all these things, just that it puts a set of expectations upon my shoulders of how I will appear to people, irrespective of my true feelings.

Towards the end of 1996, at the end of chronic illness, I had a major emotional and psychological problem on my hands-ME. I had been on the DSP for three years, I was not exactly 100% healthy, but I was certainly no longer ill. My viral load maintained itself at undetectable, my CD 4’s were stable. Combination therapy had moved the word ‘death’ quite a way down my vocabulary list. I had always had a group of peers for support years ago, but HIV had decimated that group. I felt alone, outcast, surviving with nowhere to go. I could not see a future with me in it.

Depression is a hard word to define. Ask twenty people, get twenty different answers. To me, depression was not that dark, down twisting spiral into oblivion that it is for many. Nor was it an ongoing thing that kept re-occurring over time. It was a period of intense self-doubt, a losing of self-worth, and my own values as a functioning member of the community I moved in. I wanted so much to return to life, not the life I had known, but an entirely new one, free of all the dross I had been dragging around with me, the frustration of unfulfilled dreams, and directionless yearnings.

I started (unknown to all, except by those close to me) to have black, brooding moods, periods of long silence where I would not communicate with anyone. I had panic attacks in bed at night, and developed a fear of the dark. I could not stand to travel in the subway, and avoided crowds. I saw a black future of pensions, and struggling to get by, ageing on my own, loneliness, and pills, pills pills. I remember that late one day I really needed to talk to someone desperately. I rang two of our HIV counselling services, to be told that noone was available-would I like to make an appointment for another day! I ended up ringing a friend and frantically dumping on him.

I do not like antidepressants. This is a personal thing, I have nothing against them in general, nor the people who need to take them. I already shovel enough tablets down my throat (at the time of all this happening, around 300 per week), and have no desire to add to the load. I am also, by nature, one who is capable of intense self-analysis. I knew I had severe problems, I knew I needed help. But where to start? 

The major problems, ones I have had all my life, were impatience, and wanting to do everything at once. I was aware that I needed counselling. This was not an easy self-admission. I had never believed in them. I rang Albion St, and arranged an appointment. The first meeting almost justified my misgivings about them, being a rushed affair whereby I felt time limitations were more important than my need to talk out issues. Following appointments were not so. I then did three of the beneficial things I have ever done with my life. I started volunteer work at the offices of PLWH/A (NSW) Inc, and started group work through both the ACON HIV Living Unit, and the Coleo Project. The ACON HIV Peer Support Group put me in contact with people going through similar experiences to mine. It gave me an outlet to voice my opinions, and to gain the advice and knowledge of other people to handle these panic situations. The Coleo project taught me the value of self-motivation, and the management of long-term treatment taking. They also encouraged me to take up writing, it being a good outlet for emotions-published or unpublished. This led to me joining the Positive Speakers Bureau, which has been, for me, one of life’s most fulfilling experiences.

In 2012, I had a bad experience after eye surgery at Royal Brisbane Hospital. I had some very serious surgery on my right eye…the left was blind (and is now a prosthetic)…and they fully covered the right eye after the operation. Coming out of vety heavy anesthesia, I thought I was blind, had a massive panic attack and attempted to pull the dressing off. A young Malaysian nurse, seeing this happening, started yelling at me, just making things worse. They eventually xalmed me down, and readjusted the dressing to admit some light, but the situation wasn’t good. At home, I started having attacks of anxiety & further panic attacks. I wasn’t sleeping well, was waking up with a start at around 4-5am, and had to get up as I couldn’t stand staying in bed. In bed, I couldn’t wear jewellery, or tee-shirts with tight necks – I felt they were choking me! This went on for about 6 weeks, and I was getting to the point of dispair. I contacted an Anglican support service (non religious, otherwise I wouldn’t have) on the advice if a HIV service. They, in turn, then kept in regular contact with me, helped via some counseling, and introduced me to Acceptance & Committment Therapy (ACT), and through the meditation sessions, and breathing, I eventually, over a couple of weeks, worked my way through it. I also put an official complaint into the hospital, and just doing something affirmative about the cause of this problem helped with the process of returning to where I had been before the operation.

Then, in early 2015, just after my return to Sydney from Brisbane, I had another period of both anxiety & panic attacks. 2014 had been a year from hell! I had a dreadful 60th birthday, followed by the breakdown of my 16 year relationship. Some financial oroblems followed on from that, then my ex-partners (we were clise friends after the breakup) parents both became serioysly ill; I had a very serious, debilitating dose of Shingles; Ampy, our longest surviving dog at that time, died; then in early 2015 I had my blind eye removed. This had all been bottled up, and on my return to Sydney – a move I really didn’t want to make – everything crashed in! The difficulty sleeping, getting moody, feeling that everything was getting on top of me, a severe drop in my libido, and Restless Leg Syndrome in bed at night all pointed to a return of the black dog. So off to the doctor, a psychological evaluation, and some antidepreeants & a drug to settle my restless legs. I went back to ACT, and within a fortnight we returned to a more normal state. 

But I know the capacity for anxiety & panic attacks is there, and that I need to ensure that I deal with issues as they come along. I consider myself lucky in some respects that it never gets worse that this. I don’t get cyclic deep, dark depression, nor do I get pushed to the point of suicide…but it is still a disturbing, disorientating and horrible place to be. Depression in any ofits forms  is not a pleasant place to be in.

This is a very different person sitting at this computer today. No longer scared of the future, or what it will hold. Confident that I have both a place, and direction to move in. I cannot give answers to others going through what St. Therese called ‘the Dark Night of the Soul’, except to hang on. There is, and must be, light at the end of the tunnel.

 Links

Tim Alderman ©1999 (Revised 2017

 

Viral Games!

Originally published in “Talkabout”, September 1999.

In May 1999 I had one of the scariest HIV-related experiences I have had since my encounters with CMV in 1996! I literally, for a brief period of time, lost control of my feet. Already having problems with peripheral neuropathy, this just added to the incertainty and conjecture surrounding the causes. Initially, I couldn’t walk a steaight line up a footpath, but staggered from left to right with no control whatsoever. It got so severe that I eventually had to resort to using a walking stick to get around! Cassie Workman was at a loss! Thyroid, cortisol, B12, folate, a CT scan, Gallium scan all done to negative results. It took a further MRI and lumbar puncture test to reveal that at some stage during my transition from one drug combination to another, the virus had crossed the blood/brain barrier and got into my brain! By the time it was discovered, the new combination had kicked in, and problem resolved itself. It was a scare I could have done without, as the symptoms were also indicative of some very serious – and deadly – brain disorders! HIV in those days was good at throwing curve balls!



  The moral to this story is to never brag! I had been telling a work colleague of a rise in my weight to over 70 kgs, a record weight for me, and a record I was damn proud of. Within a few days of this, however, chaos had set in, and the treasured weight was going to have to be fought for.

This bloody virus just never leaves you alone! I stare at the magnetic scan images in my hand, and admire just how sneaky it can be. The pale grey ‘clouds’ that drift over the image of my brain are evidence of its brief visitation, the disorientation and fear it caused, all too recent to be forgotten.


 It started so simply. As I have mentioned in other articles, I returned to work just 18 months ago. My health, including T-cells and viral load, had been excellent for this period of time. I guess I may have become a bit complacent, thinking good health was something I could now take for granted. As has also been mentioned in other articles, I have severe peripheral neuropathy in my feet. It is slowly progressing, and is about half way along my feet. When the staggering started, my immediate thought was that it was just another phase in the progression of the PN. I could not walk a straight line, and when walking up the street, staggered quite visibly from one side of the footpath to the other. At the time this was happening, I mentioned to people that I wasn’t feeling ‘right’, I couldn’t put a finger on what it was, it was just a general feeling that things weren’t as they are supposed to be. I was going through some changes to my combination therapy also at this time, and thought that may have had something to do with it. Well, it did! But not in the way I expected.

The next phase of the illness consisted of a feeling of chronic lethargy. It became an effort not just to get up in the morning, but to get dressed, and to motivate myself to get up the street to get to work. I lost my appetite, and libido. Then I started to drift off to sleep on the bus in the morning, this symptom extending to falling asleep at home as soon as I sat in front of the TV, both these things not being normal for me. It wasn’t until I nodded off to sleep in front of the computer at work that I realised something was going seriously wrong. 

A series of tests was started. I had iron, folate, and B12 tests. They were all normal. I went to Albion St Clinic and had a test for a disease called Addisons (the symptoms for this disease were identical to what I had), and it also came back negative. I went and had Gallium and CT scans, and nothing showed up. By this stage, my walking had deteriorated to such an extent that I was relying on a walking stick to get around. It was thought I may have had bio-chemical depression brought about by returning to work and suddenly finding myself with the prospect of ongoing life, so I was, reluctantly, prescribed anti-depressants. My weight dropped to 58 kgs, and I literally had no appetite at all. My partner and I had up until then a very healthy sex life, and this dropped away (quite rapidly) to nothing. He started to get very concerned, though managing to hide it. Going out anywhere with me, especially with the walking stick, was a long ordeal. The only advantage to it was that I always got a seat on the bus.


My doctor eventually ran out of possible causes for my condition, and made an appointment for me to see a neurologist at St. Vincent’s Clinic. He put me through a long consultation, with a series of tests to check reflexes and responsiveness. During the consult, he asked me to do a number of simple walking steps like heel-to-toe, and I was unable to do them without losing my balance. His diagnosis wasn’t hopeful, telling me that it could have been one of several very nasty diseases, including one called PML (Progressive Multifocal Leukoencephalopathy). I don’t actually know what it is, but the look on his face said all that had to be said. There was a possibility of undetected Syphilis infection from years ago, but a test soon cancelled that option out. He wanted me to have a lumbar puncture, but rang me the next day to say I was to have a magnetic scan first, just to see if anything turned up. These scans are more thorough than CT scans, and more likely to show up problems.

If you are claustrophobic, don’t even consider these scans. You have to stick your whole head inside this small cylinder, with ear- plugs in, and foam wedges to hold you steady. The machine itself makes a noise like a pneumatic drill. I took one look at it, and said ‘no way unless you knock me out’. They did!

As mysteriously as all this started, it began to reverse. I returned to the neurologist a week and a half later, he being as surprised as I was to see I was walking again. He had received the scans, and they showed evidence of HIV infection on the brain, quite visible when viewing them.


To say this frightened the shit out of me is an under-statement. I have always been very good with my treatments, and consider myself about 95% compliant, which is pretty good, considering how long I have been popping pills and, at times, the quantity I have had to take. Somehow, the virus had used an opportune moment between combinations to cross the blood/brain barrier. Everyone on combinations take at least one drug to prevent this happening, so it shows you how persistent the virus can be. It doesn’t so much hide as sneak around, looking for opportunities to invade various parts of us that are not so well protected. If I ever thought there was an argument not to take drug holidays, this is it! What damage it could have done to my brain if left unchecked horrifies me, especially the prospect of Dementia. They seem to think that the anti-virals brought it under control, and for my sake I would like to think the same.i

A month after all this and I am back to normal – appetite, energy levels, libido, the whole works. I hope to return to work within the next month. It looks as though I will still have to undergo a lumbar puncture (they’ll have to knock me out for this one, too!), as they want to know what drugs I have become resistant to. Over the period of the illness my viral load did a rise, the first in almost two years. The frightening part is that within one week, it rose from 3000 to 19000. It is now back under control.

I have lived a long time with this virus Almost all my time as an active gay man has been spent as HIV+. I have put up with, and survived, a number of HIV related illnesses. I intend at this time to live a lot longer with it. If drugs and hope are the ways and means I will have to use to follow this intention through, then that is just what I will do.     

Tim Alderman ©2000 (Revised 2017)

Keep It Up!

This article on HIV-related erectile dysfunction was originally published in the December2002/January 2003 edition of “Talkabout”. Though possibly not as common a problem now as then, it is nonetheless still relevant! I don’t know that solutions have changed much, but they have certainly got cheaper! The end of the copyright on Viagra saw it drop in price from $80-$100 per script to a mere $10! 

When I first decided to write a piece on HIV related impotence, I thought to myself “Hey, this is a pretty serious subject, and maybe you should treat it that way.” However, a visit to a sexual health clinic changed my mind on taking it too seriously, so here is a more tongue-in-cheek view on coping with impotence.

Firstly, don’t go onto the Internet and hope to find any information. I visited all my regular, usually reliable sites, and found absolutely nothing. There is plenty just on general impotence, but nothing on the HIV related. As usual with a lot of the more ‘delicate’ subjects (let’s face it, nobody likes admitting that ‘they can’t get it up’, there is bugger all information. As usual with a lot of HIV-related problems, nobody thinks it is really important, or perhaps that given the right length of time, the problem will just go away. But as we all know by now, that isn’t necessarily the case.

Visiting a sexual health clinic on the advice of my doctor – and clutching a referral – did come as a bit of a surprise to me. I don’t know what I was expecting, but it seemed like the sort of place where you would tell people that you were Mr X, and you are just here to inquire for a friend who is having problems!

It wasn’t tucked away in a dark alley, nor was the impotency problem treated as something only related to very old men, nor just one of nature’s aberrations. It was treated like a serious medical problem, and perhaps this was the one huge realisation. There was almost a blasé flippancy associated with the consultation, which I wasn’t expecting! As to the real reasons for HIV related impotency. I’m probably no more an expert than the guys who are trying to assist those of us with this problem. Everyone does seem to agree that as people live longer and longer with HIV, it is becoming a more widespread problem, irrespective of your actual health status. The fact that there don’t seem to be any studies covering this area at the moment should be of some concern, as the one thing we can be relatively sure of is that the problem is not just related to HIV. Some experts think it is just a natural progression of advanced HIV disease; others see it as being a side-effect of combination therapy (plus all the other drugs needed to handle HIV); some think it is related to having had AIDS (if you have had AIDS); or that it is related to peripheral neuropathy, especially long-term PN. For some of us, it is a problem of having lived with HIV for 20 odd years, and getting older. My neurologist doesn’t seem to concur with the PN idea, but personally I know that it is a distinct possibility. If PN can affect the way I move and get around, if it can cause other sorts of neurological disorders, I see no reason why it could not be related to impotency. Let’s be real. Those of us who have lived with HIV for as long as the disease has been around, are still coming up with things that nobody had even considered, let alone know what to do with. And as we all know, we don’t usually fit into any of the general categories, and what happens with us, health wise, is often unexpected. So, it is a bit of ‘by guess or by God’ at the moment, in trying to pin down the causes of this type of impotency.

The clinician proceeded to ask me the usual questions – are you in a relationship? Yes! How does your partner feel about this? Well, pretty unimpressed! I don’t think anybody would be really happy with this problem, from either side of the fence! Have you considered an open relationship? Well, that helps his problem, but it doesn’t really help mine! It wouldn’t exactly be a situation where you could go home and compare notes later on about your trade! Have you considered using a cockring? Now, I don’t know about anyone else, but I always thought these gizmos were more about aesthetics than practicalities – you know, visual stimulation and all that (not to mention adding a sizeable amount to the actual dimensions of a cock), but here it was, out of the world of sex shops and mail order, and onto a clinician’s desk. Talk about taking the erotic appeal, and the mystique, out of an object! To be told that the good old studded leather contraptions are just not good enough for this sort of problem was very disheartening. Now as to the suggested alternative, well I have to say that perhaps we should go the way of eroticism instead of common sense. A very wide rubber band! Yes, you heard that right! I was given a sample to take home and try – or a ‘medically authorised’ cockring, which I have to say, still being the owner of black rubber and leather rings, left a lot to be desired. I could see the purpose to it, but God, was it ugly! A flesh-coloured ring with a small handle on each side of it, so that it can be stretched over the erect penis, it almost looked like some bizarre love-handled item, or perhaps a sighting feature for those who can’t aim straight!


There was also a plethora of information on ‘Viagra’ and ‘Cavaject’. Now, both these are good products, and anyone having used them as prescribed will attest to this. However, there are drawbacks. ‘Viagra’ is not on the PBS, and at $55+ for 4 tablets, is very expensive if you are on a pension (this us no longer accurate. The copyright on Viagra expired a few years ago, and it is very cheap). You also have to be careful with it if you are on protease inhibitors. If you buy the larger size tablets, you will need a tablet cutter to split them, as they are very hard to break. But perhaps their biggest drawback is that you have to – sort of – plan your sex life, which kills any hopes of spontaneity with sex. It takes anywhere from 30-60 minutes to work (depending on your metabolism), and once you’ve taken it, you’d better hope your partners still in the mood when it kicks in; or that there are plenty of available partners; or that everyone doesn’t suddenly change their mind, and go back to sleep, because if that happens, there goes $15 down the drain! On the upside, if your partner is in the mood, you are about to give them one hell of a good time, but there is always that element of the unexpected. And waiting can be frustrating. It’s fine to tell your partner that you have just taken the tablet, but if he is ready to get into it after 20 minutes of foreplay, you could be left well behind in the stakes. Unfortunately for some of us, headaches are a side-effect of Viagra…so the sex had better be worth it!


Similarly, problems exist for ‘Cavaject’, though initially, it works a lot quicker than ‘Viagra’, being injected directly into the penis. If you are needle-shy, forget this! You probably also don’t want to see the video the sexual health clinics give to help you decide. To start with, they use a female doctor in it. Now, don’t get me wrong! I know female doctors are every bit as good as male! It is just disconcerting that in a scenario where it is a male problem being discussed with men, it is slightly off-putting to see this poor guy in the video stretching his penis out, holding it as though it is about to spit poison, then aiming a needle at it as a female voice in the background goes ‘Very good. You are going well’. The fact that she looks a bit like everybody’s mother probably doesn’t help, either (no offence to whoever she is). Now, if this doesn’t put you off, the price, and the procedure, probably will. I managed to do a bit of stockpiling just before it went off the PBS, thankfully. It went from $3.50 for 5 injections to $80+ overnight. Again, you wouldn’t want to be wasting it on frivolous events. It does have the added plus, as I mentioned earlier, of working instantly. And boy, when it works, it works! We are talking rock hard to the point of impressive here! However, just make sure that you don’t hit any veins or capillaries on the way in, as a gusher of blood can be a bit of a passion killer. They show you how it is done to avoid this, but as with all things, we weren’t all cut from the same pattern. You also have to be careful with the needle, as you can get a bruise from a misplaced shot (or perhaps an over-eager shot!). It is a simple procedure, and it really doesn’t hurt, though I encountered a slight stinging for a few seconds just after the initial injection. I had a sexual encounter with a guy – in his home – prior to this revelation. I was already rearing to go…when he suddenly disappeared…only to return a couple of minutes later sporting a very impressinly hard erection! It is only now that I realise what he was doing.


I’m also sure that a lot of you HIV guys are now familiar with regular injections of ‘Sustenon’, a testosterone topper-upper. It is very effective if you have depleted testosterone levels, but doesn’t serve much purpose if you fall into the normal reading range, and your impotency is caused by other factors. ‘Sustenon’ is not cheap either, being in the $30+ range. I think this is a major concern with ‘Viagra’, ‘Cavaject’ and ‘Sustenon’, in that now, none of them are available on the PBS (unless, in the case of ‘Sustenon’, you can show depleted levels of hormone). Okay, if you are a vain person with no medical problems, and you just want to show off your sexual prowess, then you should have to pay for these products! However, when the PBS definitions and classifications of uses for ‘Viagra’ and ‘Sustenon’ went through reclassification, HIV disease was NOT defined as a reason for being able to have them prescribed. The definitions have never changed, despite research that shows these are problems often associated with HIV. So, to be HIV+, and to want a healthy, normal sex life means you have to pay through the nose. If you are on a pension, consider joining a monastery! The choice is 4 or 5 ecstatic sexual encounters, or starvation. On second thoughts, I may have to think about that!

Now, this brings me back to the brochure I walked home with after that little visit to the clinic. Not only pictures and order-form for a natty little injection kit for ‘Cavaject’, and the love-handle cockring, but also a vacuum pump. Now, last time I saw one of these items – and it was recently – was on an ‘adult only’ site (you know the sort I mean! The ones that require adult verification!), and the use it was being put to was not medical. Hell, when I used to manage ‘Numbers’ Bookshop (a lifetime ago), these were amongst my best selling items – from the cheapest, through to the elite models. I have to say that on this particular site I was on, they did show budget-wise reasons for using this devise, as two guys were using it at the same time. You could time-share with a friend I guess, but the fact of both of you wanting sex with different people at the same time is probably pretty remote, so it probably isn’t convenient to do it this way. I can see that they have a certain erotic appeal, and would probably be fun as foreplay, but imagine the extreme situations that could possibly occur. Over-pumping to start with, or getting the old boy stuck! Try explaining that in A&E, let alone telling them that you bought it through a medical catalogue.

Though, ideally, I don’t see any of these things – apart, perhaps, from ‘Viagra’ – as totally expedient ways of overcoming impotency, it is a ‘different strokes for different folks’ scenario, and in a lot of cases, doing something is better than doing nothing. We’d all like a reasonable sex-life, and if it means going to some sort of extreme, I guess most of us would be willing to swallow a little pride, and use whatever props we have to. On the upside, on ACA a couple of weeks ago, there was a story about this guy who has been successfully trialling a capsule that dissolves under your tongue, and guarantees pretty quick results. I did ask my pharmacist about this, and he claims it will probably be a couple of years before it is available. I say let’s try and get on the trial!

In the meantime, I guess we are going to have to either scrape up the money to go down the ‘Sustenon’/’Viagra’/’Cavaject’ road, or stock up on appliances. Whichever way we choose, as HIV+ people we are used to being creative, and I’m sure our imaginations won’t let us down in the sex department.

Go for it, people!

If all else fails, there is always this alternative…


Tim Alderman © 2002 (Revised 2017)

An Eye For An Eye – Life After Cytomegalovirus Retinitis (CMV Retinitis).

This article, recently resurrected, was originally written in 2012, as I sat in the loungeroom at Ashgrove (Brisbane) after a panic attack drove me from my bed at 5am. I have revised & reedited the piece to cover the period between then and now. The original was published in “Talkabout” in 2012.


I shouldn’t actually be alive! And if it had been any time other than when it was – 1996 – that would have been the outcome. However, timing and medicine are everything, or so it seemed in that period of huge leaps in HIV care and treatment. As a 42-year-old HIV+ gay man who was admitted to Prince Henry Hospital (now closed) at La Perouse in Sydney, weighing in at 48kg, with chronic CMV retinitis, chronic anemia, chronic candida and 10 CD4’s I guess you could say I wasn’t well, and the truth be known my thoughts were more attuned to the after-life than being given a future. So, blood transfusions happened, heavy dosing of drugs happened (curtesy of my current regimen) and gancyclovir injections into the eyes happened – but perhaps most importantl…the new protease inhibitors happened and in combination with my other drugs created miracles. My severely depleted CD4 count did a small, slow rise, and my 100,000 viral load slowlt dropped to 10,000. Though still very weak and sick, I walked out of Prince Henry a couple of weeks later, then spent the next 18 months getting my health – physical & mental – back on track.

At this stage I could crap on endlessly about all the strategies that I used, the anabolic steroid therapy to treat Wasting Syndrome, the fears and uncertainties, the sheer strength of will needed to reconnect with life, not to mention the huge mental shift that drove my life off into uncharted territory and resulted in the man I am today. Blah, blah, blah!So instead of boring you with all that, I want to concentrate on the one aspect of all this that is still impacting my life today – the CMV retinitis.

Say CMV to most people these days and you will just get a blank look. It is an insidious disease, and one that was greatly feared in the era of rampaging AIDS infections. It is a virus that pretty well everyone has present in their body, but is usually only activated in immune-suppressed people. In its retinitis form it attacks the retina, and can spread to the macula by slowly destroying the cells. It is painless, though can be evidenced by a greying of vision and the appearance of floaters. If untreated it will eventually lead to blindness. By the time it was detected in my eyes a lot of damage had already been done, and I was aggressively treated with intraocular injections of gancyclovir…yes, that does mean injections directly into the eye. What fun! At the time this was going on, they were looking for guinea pigs to trial gancyclovir implants – called Vitrasert implants – in each eye. I volunteered, had two operations to insert them, then found that the 4% chance of developing cataracts turned out to be 100%, so back for another two operations to remove them, and replace the lenses, plus some laser work. The end result of all these operations and expectations for me was that they hadn’t caught it in time in the left eye, and despite a tiny sliver of vision I was effectively blind in that eye. Despite a lot of scar tissue, the majority of sight was saved in the right eye at that time.

It takes ages to adapt to changed vision, especially when one eye is effectively blind, so over the next 12 months I became accustomed to having accidents, including several falls thanks to tree roots bulging through pavements and bus seats that were just out of sight range. It gets to a point where you no longer get embarrassed. Both eyes appeared to stabilise, I adjusted to the changed vision and in some respects life went on. Apart from the falling over, other negative issues included an avoidance of crowds and busy places, and 3-D cinema was a total waste of time. You do adapt strategies, but it is not yourself that you need to worry about, but other people. There have been a number of occasions where I thought a tee-shirt emblazoned with the words “Vision-Impaired Person” would have been handy.

Vitrasert Implant

It was 2008 before I had any further problems, and that was with my blind eye. It developed what I thought was a grain-of-sand-in-the-eye irritation, so off to the ophthalmologist at RPA hospital, who then passed me onto the Sydney Eye Hospital. When specialists start passing you on to other baffled looking specialists you know you have a problem! Evidently the blind eye didn’t realise it was blind, and decided to start creating a new system of blood supply to the eye, which in turn was in the wrong places as well as increasing the pressure in the eye. There was a new injectable drug around called Avastin which cuts off the blood supply to cancer tumours, and it was decided to inject this into the eye to stop the new blood system developing. So, off for another intraocular injection. It did the job, but I was also told that the interior of the eye was collapsing, and that in time it would change colour. Oh joy of joys. Over the next 18 months it changed from a normal looking eye that just had no vision to this oddly coloured eye which made many people think I had two different coloured eyes (a genetic variance). And this is how it still looked until 2014.

However, this is good old HIV we are dealing with here, and it doesn’t like being ignored. Just as you think the worst of your problems are over it throws another bit of shit at you. I had been told previously that with the amount of scar tissue present in my good eye that there was a real chance of the retina detaching. So, shortly after moving to Brisbane, when the good eye started swapping between clear and blurred vision and finally settling on blurred, I knew something was wrong. A visit to A&E (on ANZAC day 2012) resulted in no clear result, so off to the RBH Eye Clinic the following day. The retina was off, and floating around, and there was a scare, with them thinking the CMV had reactivated…hard to believe seeing as I wasn’t immune suppressed, had a high CD4 count and an undetectable viral load – and another scare when they realised that I had highly toxic implants in my eyes (though long inactive, as they discovered). Instead of collecting some eye drops and toddling back home as I expected, I was put straight into a ward, and within 24 hours was in the operating theatre. A bad recovery room experience with an Asian Nurse Ratchet, whereby they weren’t informed that I was blind in my left eye, and leaving me to come-to in total blackness, occasioning a major panic attack is something I could have done without. The ongoing problems of anxiety and panic attacks (and this article being written at 5am) is something I am slowly getting over thanks to counselling and a letter to RBH formally requesting they look at the procedures and communication in the recovery room. My vision is now officially classified as blind. Glasses help a bit, but it is now a matter of me adapting to a low-vision life and devising some new strategies to deal with it. I can still read, though the font is huge, obviously I can still write though currently using huge fonts to do it. In 2013 I attended Southbank Institute of Technology to do the Certificate III in Fitness. I am not only the first 59yo to do the Certificate…I am the first severely vision-impaired person to do it. Threw TAFE into a panic, as they had to develop strategies to deal with me, and make sure tutors were on-board and up to speed. As much as I loved the experience, and the youngsters around me were absolutely wonderful, I came to realise that I was way too slow at moving around a gym to be a PT, so went no further. Atthe same time, I had done white cane training, and though finding the canes handy in certain circumstances – like whacking my way through the city – it is, as a general rule, more a hindrance than a help. However, it is great for getting seats on public transport!

In early 2015, after ongoing problems with my blind eye, and not wanting to go on infinitum with drops, I opted to have my blind eye removed. Unlike the old days, they now put an artificial ball into the socket, and attach the muscles to it, so it moves like a real eye. I had a prosthetic fitted, and to date no one has detected that it’s artificial.
However, my vision in general is now very severely impaired. Every trip outside my front door is a potential suicide mission – not to nention ducking and weaving around two Jack Russell Terriers at home…but I still challenge the risks, and get out and about under my own steam as often as possible. If anyone wants to date me…I’m a high maintenance date these days. Being night blind, I need to be guided around, and I move very slowly and cautiously. However, it has been pointed out to me that I can still spot a hot butt from some distance away! Some Gay traits over-ride everything!

As for the future… who knows. I am trying to develop the “living in the moment” way of my dogs by just taking each day as it comes. I have had a lot of help and support, and despite whatever may happen that will always be there.


As they say, there are none so blind as those who will not see! I still walk my dogs every morning, I still read & write, still do my genealogy and my DJ mixes, go to gym, do the shopping, get around to local restaurants and cafes so I can’t complain. Life should always be an empowering experience, and the best way to achieve that is to own your disabilities – instead of letting both HIV and disabilities rule your life…YOU rule your HIV and disabilities! That is the road to freedom!


Tim Alderman.

Copyright 2012 © (Revised 2017)

A Brief (Personal) Memoir of HIV & AIDS

I discovered this older article recently while rummaging through my article archives. I present it here with some edits and newspaper inclusions. HIV & AIDS (note the separation of the two) has an intricate, but morbidly fascinating, national & international history. I watched “The Normal Heart” again only a couple of days ago, and the hospital scene where Felix is in the hospital ward with the meal sitting outside the door of his KS infected friend, and being told not to go in without contagion gear raised a whole plethora of unpleasant memories with me. To understand where HIV is now, you need to understand where it was! 


I can’t believe it has been about thirty seven years since we first started hearing about HIV/AIDS. I find it even harder to believe that I have been infected for thirty five years. Over half my life has been lived with this virus! In personal retrospection, I could say that compared to the bad, bad old days of 1981, life is a bed of roses today. But then I am aware that quite a lot of people would still not share that sentiment, so out of respect to them, I will avoid such romanticism.


I was living in Melbourne at that time, and I believe that HIV/AIDS got its first mention in the gay press a little earlier than 1981, though I could be wrong. There were only snippets, overseas briefs if you like, of a strange STD that seemed to be selectively attacking the San Francisco gay community, or more specifically, those members of that community who frequented the baths and back rooms of the famous city. I know that no one here was particularly concerned. We thought it was just another of ‘those American things’, or just a mutated form of the clap. Nothing that a pill wouldn’t fix! By the time I returned to Sydney in 1982, we had started to think quite differently. Some of us were getting very scared!

The media began drowning us in information, mainly from the United States. There was the dramatic scenario of ‘Patient 0’, from whom it was assumed the whole epidemic had spread like an out of control monster. The USA and France argued over who had discovered the virus, and made the link between HIV infection and AIDS (watch “Dallas Buyers Club” for an inkling of what this was all about!). A debate raged as scientists tried to decide what to call it and which acronym to use. We had GRID (Gay Related Immune Disease) and HTLV 1 & 2 (Human Transmitted Lymphoma Virus – if memory serves me well). They eventually settled on HIV for initial viral infection, and AIDS for any subsequent illnesses that resulted from the breakdown of the immune system. The original Center for Disease Control (CDC) classification system for the various stages of HIV and AIDS progression was so complicated that you really needed a university degree to be able to decipher them. To make things more manageable they finally settled on four classifications.

Then came ARCs (AIDS Related Conditions) but that was considered politically incorrect, so we settled on OIs (Opportunistic Infections).

The argument over names and classifications wasn’t half as frightening as the reality of the disease itself, which started to hit home in 1985. Official testing began in that year, and is still the earliest date that medicos will accept as a point of diagnosis with HIV. Any date earlier than that is declared to be a ‘self-report’. Like many others, I assumed I was HIV+ long before testing started. Virgin and chaste were not words to be found in my life resume. Sydney’s Albion Street Centre was the first here to begin testing, and it was done very discreetly and anonymously. We all used an assumed first name, and were issued with a number to identify who we were. (In 1996, when I needed to tap into my first HIV test results done at Albion Street, they were still there.) Counseling was atrocious. You were given your HIV+, or HIV- (if you were lucky) status very bluntly, then quickly shunted over to a counsellor before the shock had a chance to set in. You were also told, almost apologetically, that you probably had about two years to live. That was HIV diagnosis circa 1985.

A number of our conservative politicians, and some of our outraged Christian clergy started to say that they wanted us placed in quarantine. It was very specifically a gay disease, according to them, and they truly believed that fencing off the gay areas of Sydney and leaving it to run its course could contain it. These people wondered why we got tested anonymously!

By 1985 people were starting to die. There were no dedicated HIV wards in any of our hospitals, and patients were shuttled between temporary beds in wards and the emergency department. Reports started to filter through of hospital staff wearing contagion suits around patients with HIV. Worse still, meals were being left outside the doors of rooms, and would often be cold by the time the patient managed to get them. Cleaners refused to clean the rooms. There were scares of infection by contact with everything from a toothbrush, to a glass, to cutlery, so patients were offered very disposable forms of hygiene. Even mosquito’s copped some of the blame.

Then, of course, we had the living daylights frightened out of all of us with the “Grim Reaper”television ads. From 1985 to 1995, death lived with us on a daily basis. If you weren’t visiting sick friends, lovers, or partners in hospital, you were visiting them at home, or attending their funerals and wakes. Most of us lost the majority of our friends, and for most of us those friendships have never been replaced.

Around that time, the gay community took charge of what was quickly becoming an out-of-control situation. Tired of seeing friends dying in emergency wards, and getting only the minimum of care at home and in hospitals, we established our own care, support and advocacy groups. Out of the pub culture grew groups as diverse as BGF, CSN, ANKALI, ACON, and PLWHA. Maitraya, the first drop in centre for plwha was founded, and we raised the first quarter of a million dollars through an auction at “The Oxford” Hotel to start to improve ward conditions at St. Vincent’s Hospital. The gay community can forever take great pride in itself for bringing about great changes, not only in the care of plwha, but in the way the disease was handled, both politically and socially..

The Department of Social Security streamlined people with HIV/AIDS through the system and onto Disability Support Pensions, and the Department of Housing introduced a Special Rental Subsidy so that those on a Pension, and unable to wait interminable amounts of time for housing, were able to live in places of their own choice, at greatly subsidised rent. Home care became available through CSN, which, at that time, was not a part of ACON. By 1992, there was a perceived need for improved dental services for HIV patients, especially considering the high incidence of candida. The United Dental Hospital led the way with a HIV Periodontal Study, which at last provided reasonable dental care to plwha.

The first vaccine, p24VLP, was trialled with absolute zero results. There were quite a number of scares with HIV contaminated blood, and screening of blood donors was tightened. Discrimination reared its ugly head in the Eve van Grafhorst case, which forced this poor little girl to not only leave her school because of the hysterical reaction to her HIV infection, but to flee the country with her family.

In 1987, the first therapy for AIDS – azidothymidine (AZT) – was released in the USA, and its use in patients with HIV/AIDS was fast-tracked through the approval process here. In France a huge trial called ‘The Concord Trial’ was conducted – unethically – and its findings were found to be inaccurate. The resulting announcement that AZT was ineffective in the control of HIV, and the drug nothing more than ‘human Rat Sak’, caused a universal outcry. The damage was done. Many had no faith in the new drug at all, and local activists and proponents of alternative therapies tried to encourage people not to use the drug. Many of us chose otherwise. True, the effects of AZT were short-term only – maybe six to twelve months – but many saw it as a way to keep the wolf from the door long enough for some other drugs to come along. And come along they did. AZT was quickly followed by what are referred to as the ‘D’ drugs – d4T, ddi, ddc, and the outsider 3TC. However, these were all drugs from one class called Nucleoside Analogues and all had short effectiveness. Some doctors tried giving them in double combinations, but the effectiveness wasn’t much better. Despite their short life span, these drugs were being prescribed in enormous doses, which resulted in problems such as haematological toxicity, anemia, and peripheral neuropathy. We needed a miracle! Add travel restrictions in many countries, blood transfusion infections, and some babies dying as a result of this and things weren’t looking good!

Those of us who had managed to survive to 1996 were starting to give up hope. Most of us were on a pension, had cashed in and spent our superannuation and disability insurance, had a declining health status, and didn’t hold out much hope for a longer survival time. Prophylaxis for illnesses such as PCP, CMV, MAC and candida had helped improve most people’s lives, but they didn’t halt the progress of the virus. The first of the Protease Inhibitors, Saquinavir, was introduced that year, and evidence started to emerge of the effectiveness of combining the two classes of drugs into what came to be known initially as ‘combination therapy’ and later as HAART (Highly Active Antiretroviral Therapy). The results were astounding; those close to dying suddenly found their CD4 counts rising, accompanied by a return to reasonable health. Viral Load testing was introduced and people were finding not just a raising of their CD4 counts, but a drastic lowering of their viral load, often to the point of its being undetectable. This became known amongst doctors as ‘the gold standard’. Ganciclovir Implants to assist with the control of CMV retinitis were trialled the same year, and Albion Street Clinic started a trial using decadurabolane, a steroid, to assist in controlling Wasting Syndrome. The new drug combinations (NNRTI’s – Non-Nucleoside Reverse Transcriptease Inhibitors – a third class of drugs, were introduced shortly after) were not without their complications and problems. Most combinations still required huge quantities of pills to be taken daily, not just of the HAART drugs, but also prophylaxis and drugs to help control side effects such as nausea and diarrhoea. Their use required time and dietary compliance. Other problems such as lipodystrophy, lipoatrophy, and renal problems appeared, but we were, despite any drawbacks, a lot better off than we had been ten years, hell even two years earlier.

People’s health changed drastically, and suddenly new services started to take prominence. Some people required lots of counselling to help them reconnect with the life they thought had been taken from them. Others went to peer support groups or turned to treatment management groups, and some to the larger range of support services being provided by The Luncheon Club, The Positive Living Centre, NorthAIDS and other similar groups. There was recognition that there was a need for services to assist people with an improved health status, as some of them were contemplating returning to work. Despair had, to a large extent, been replaced by hope. Organisations concerned with people’s changing needs reassessed and changed their services to meet the demand. Those that changed have survived, and are still prominent in our community.

The war is far from over. New generations require new strategies, and while everyone seems happy that infection rates for HIV have remained steady in Australia (despite rampaging out of control in Third World countries), many feel it is still not good enough that, at this stage of 37+ years into HIV/AIDS, countries like Australia with high levels of education and accessibility to media and information should be seeing a decline in infections. Remembering my own youth I find it difficult to comment on the attitudes of young people. I grew up through the very worst that HIV/AIDS had to throw at us, and the lessons it taught are not easy to forget. I have to ask myself had I not had that experience, how would I be viewing it? It is no longer just the responsibility of the gay community to guard against new infections. Responsibility also rests with the straight community, and the IDU community, as infection rates remain at their current level. Some scaremongers have ventured forth theories of a ‘third wave’ of infection, but I trust we are too wise, and too educated to allow that sort of irresponsibility to happen.
Many of us (certainly not all) are going on to lead relatively normal lives. Many have returned to work either as volunteers, or in casual, part-time or full-time employment. Many like myself have returned to tertiary education, determined not to leave this world without at least fulfilling some gnawing ambition. However, we are not living in a ‘post-AIDS’ world, and to think so would be foolish. Even if the battles have been won at home, they still need to be fought elsewhere. We still need new drugs, and we still need people to trial both the emerging antiviral and opportunistic infection drugs and the immune-based therapies. We now have a fourth class of drugs in the form of Nucleotide Analogues. Many medical practices have adopted a holistic approach to medicine, and this can be judged to be a direct spin-off from the HIV/AIDS wars. Hopefully, soon please, a new vaccine will appear.

I really don’t know how much longer I will live now. Certainly with the standard of health care I get, and the close monitoring, I may live out whatever my allotted time was to be. Time will be a better judge of that than I will. For me, HIV/AIDS has been a two-edged sword. It has taken good health from me, I have permanent disabilities from AIDS, and I have seen far too many friends, lovers and partners die from this hideous disease. At the same time, it has presented me with opportunities I would never have grasped if it had not come along. I am re-educating myself, taking myself off along strange paths. It has given me a whole new understanding not just of HIV, but of disabilities in general, and a great respect for those who overcome difficulties and recreate their lives.

At a university tutorial last semester, a young woman asked me if I thought every day about having HIV. I don’t! It may have taken thirty five years, but it is now so integrated into my life, that I have trouble remembering the time when I didn’t have it. The pills are just pills now (and thankfully a lot less of them than even 4 years ago), and most of my current medical problems have more to do with ageing than with HIV.

I can tell you, that really gives me something to think about!

Tim Alderman (C © Revised 2017)