Thirty Years

As the chair of the HIV Speakers Bureau, I tell people that we are going “old school” by having speakers living openly with HIV tell their stories. In using that term I am referring to those in the early days of this disease who spoke to Congress (such as Michael Callen, Roger Lyon and Anthony Ferrara in 1983/1984) or at public schools (Pedro Zamara 1990-1993). Pedro also lived out his life as an openly-positive gay man on MTV’s The Real World San Francisco in 1993-94.

These people knew that until one faces this issue head-on, with honesty and without deceit, the stigma will continue to grow and with it fear and ignorance.

But as I thought of the way things were, a new realization came to me.

The first medical cases which would ultimately be the first indicators of AIDS in America were identified in May/June of 1981. I was fifteen years old at the time, just finished with my sophomore year of high school. Next year will be thirty years of AIDS.

It’s actually many more years, as the understanding that there could be a very long incubation period before major symptoms appeared, but also discoveries of stored blood samples from 1959. But 1981 was when the world first became aware of this disease.

Some thoughts on how far things haven’t come in thirty years…

Thirty years… and there is still no cure.
Thirty years… and there’s no viable vaccine.
Thirty years… and there are still people who believe AIDS is a gay disease.
Thirty years… and the stigma born alongside AIDS lingers on.
Thirty years… and there’s only one generic form of an HIV medication.
Thirty years… and the meds can still cause dangerous side effect.
Thirty years… and the rate of infection is climbing again, especially among youth, more especially among gay youth.
Thirty years… and there are no regular HIV+ characters on television.
Thirty years… and the red ribbons have disappeared from awards shows.
Thirty years… and people are still dying from AIDS - even in America.
Thirty years… and the cost of medication has not gone down.
Thirty years… and there hasn’t been one apology for not doing enough in the early years.
Thirty years… and some politicians still believe people with HIV/AIDS should be quarantined.
Thirty years… and the names of those who first spoke out about this disease have been lost to the winds.
Thirty years… and funding for research has not advanced.
Thirty years… and the money for support services has not kept up with the need.
Thirty years… and the churches are still preaching abstinence and ignoring protection, despite all research proving that abstinence programs are a failure.
Thirty years… and the churches have not apologized for turning their backs on those in need.
Thirty years… and those of us living with HIV have no voice, no say, no control.
Thirty years… and the blame game and finger pointing continues.
Thirty years… and we still don’t know how it all began.
Thirty years… and the only real winners are the pharmaceutical companies, profiteering off this illness…

There are more items which should be on this list. It’s just too heartbreaking to think of them all right now. As somebody who witnessed AIDS from the beginning, and contracted HIV five years into this now-pandemic, I’ve seen all the above and more.

How I hope that next year, the list hasn’t grown longer. How I wish that in thirty more years, AIDS and HIV are things of the past. This disease hasn’t taken me after nearly twenty-four years. I won’t die of AIDS, but I just might die of frustration as I count off the years behind.

The Red Masque

"The 'Red Death' had long devastated the country. No pestilence had ever been so fatal, or so hideous. Blood was its Avatar and its seal -- the redness and the horror of blood. There were sharp pains, and sudden dizziness, and then profuse bleeding at the pores, with dissolution. The scarlet stains upon the body and especially upon the face of the victim, were the pest ban which shut him out from the aid and from the sympathy of his fellow-men. And the whole seizure, progress and termination of the disease, were the incidents of half an hour."

So begins Edgar Allan Poe's "The Masque of the Red Death". While not a precise metaphor for AIDS, the similarities are too much to overlook. Blood is the primary carrier of HIV. Red is the color of the awareness ribbon. The early victims of AIDS had lesions on the body and the face, and were wasting away to ghoulish forms. While death was not as quick, the horrors which ultimately led to the fatal end seemed quick and merciless. And, like with the Red Death, those with AIDS were shut out "from the aid and sympathy of his fellow-men."

“But the Prince [...] summoned to his presence a thousand hale and light-hearted friends from among the knights and dames of his court, and with these retired to the deep seclusion of one of his castellated abbeys. [...] The courtiers, having entered, brought furnaces and massy hammers and welded the bolts. [...] there was Beauty, there was wine. All these and security were within. Without was the ‘Red Death.’”

That was the other corollary, not commonly known. Groups of gay men in San Francisco, New York City and other metropolitan areas sought to protect themselves from this plague with a pact that they would only have sex with members of their group. Whatever this thing was, they would be safe if they kept to the oath and never strayed.

Yet as with Masque’s Prince Prospero, the folly of this quickly became clear: they had locked themselves in, not knowing the enemy was already amongst them. The idea that it could take years from infection to the first sign of symptoms was yet unknown. And by practicing unprotected sex with multiple partners, and with no treatment, the virus found itself able to mutate and mix with other strains.

This is the superinfection that has been paraded in the news media in recent years, long before such issues were discussed. By passing the virus between so many partners, having it mutate then passed back created a strain that was more deadly than a single infection could become.

To say that Poe was prophetic is a bit much to believe. But one has to wonder at it all. Perhaps Edgar’s drug-induced visions had given him a glimpse at what was, or what would be. Or both.

Yet who could doubt the coincidence held in the chambers of Prince Prospero’s “castellated abbeys”, described by Poe in such intimate detail?

“That at the eastern extremity was hung, for example, in blue --and vividly blue were its windows. The second chamber was purple in its ornaments and tapestries, and here the panes were purple. The third was green throughout, and so were the casements. The fourth was furnished and lighted with orange --the fifth with white --the sixth with violet. The seventh apartment was closely shrouded in black velvet tapestries that hung all over the ceiling and down the walls, falling in heavy folds upon a carpet of the same material and hue. But in this chamber only, the color of the windows failed to correspond with the decorations. The panes here were scarlet --a deep blood color.”

Other than white, these are the colors of the modern gay pride flag. A black bar is often used to represent those lost to AIDS. A black room hued with the light from the crimson-stained glass. Poe’s Red Death has a corollary with AIDS.

“...there were many individuals in the crowd who had found leisure to become aware of the presence of a masked figure which had arrested the attention of no single individual before. And the rumor of this new presence having spread itself whisperingly around, there arose at length from the whole company a buzz, or murmur, expressive of disapprobation and surprise — then, finally, of terror, of horror, and of disgust.”

I imagine this is how those revelers of our world, believing themselves to have escaped the plague, must have felt when the first indication of AIDS had revealed itself to them. Whether he appearance of a Kaposi Sarcoma (KS) lesion, as seen on Tom Hank’s character Andrew Beckett’s torso in the 1993 film Philadelphia, or one of their members hospitalized due to pneumocystis carinii pneumonia (PCP), cytomegalovirus (CMV) or progressive multifocal leukoencephalopathy (PML).

It must have seemed to them as though the mummer from Poe’s tale had crashed the party, its attendance noticed too late to escape the horror:

"And now was acknowledged the presence of the Red Death. He had come like a thief in the night. And one by one dropped the revelers in the blood-bedewed halls of their revel, and died each in the despairing posture of his fall. And the life of the ebony clock went out with that of the last of the gay. And the flames of the tripods expired. And Darkness and Decay and the Red Death held illimitable dominion over all."

And so ends Poe’s tale. It is for the reader to decide if the comparisons made are worthy of thought, discussion or consideration. Or perhaps, one should ask Edgar for his opinion...

Dawn of Darkness

It was 1981. July. The first indications of what was to come began to appear. Eight young gay men had died, all exhibiting signs of having a malignant form of a cancer previously only seen in very old Italian men. The lesions were due to Kaposi Sarcoma. There was also a drastic increase in cases of the rare Pneumocystis carinii pneumonia (PCP) in both California and New York.

This was the dawn of AIDS. But unlike the rising of the sun, this signaled a darkness that still hangs over this nation and the world like a heavy cloak. Death’s black cape.

I remember I was on summer break during High School when the first reports began to trickle in. There was no information, but they were all certain that this was a gay cancer. Nobody else need worry. As a young man still questioning his sexuality - though knowing in my heart the answer full well - this news terrified me. I had no idea that the proverbial shit was about to hit the fan.

The news erupted from every pulpit like a volcano. Ignorance fueled fear, fear begat anger, arrogance begat condemnation and damnation. Anger became hatred became verbal and physical attacks on the entire gay community. Religion had found it's holy sword and would help God wipe every faggot off the face of the earth with glee.

Vesuvius could not have destroyed as many lives as the Christians did. They didn't turn the other cheek - they turned their backs. They did not show the compassion of Christ, they drove us out like lepers on the streets of Nazareth. Not a one called for reason to prevail, or for hearts to open up to those who were suffering.

They made a bad situation much worse.

Gays were hunted down like wolves, blamed for all that was wrong in America. This disease was "God's punishment" for the sins against nature, a statement affirmed by then-President Ronald Reagan. Thank you, Bonzo, for your rational assessment of a health crisis. People were dying and there was celebrations in the churches, pleased with what was happening to the 'homosexuals.'

Even though I didn't yet identify as gay, I saw no rational way that a cancer could target gay men unless being gay was genetic. What an outrageous contradiction for those who believe any disease could attach to a select group to turn around and say gay people "choose" the lifestyle. I knew in my heart that one day the proof would appear. It would begin to show up in the non-gays, too. Then the hate would disappear and compassion would return.

I thought too soon. In 1982, after "gay cancer" and "gay plague" segued to GRID and then AIDS, a classmate of mine came to school wearing a t-shirt dripping with hate. The image burned itself into my memories so deeply that I have forgotten the face of the guy who wore it. Emblazoned on the front was a log reminiscent of the old RAID bug spray. Only it didn't say RAID, it read AIDS. And the catchy slogan was replaced with one far more repulsive: "Kills fags dead!"

I felt like the roaches running away from the can in the commercials. But I couldn't run. I couldn't speak. I just stood there, closing my eyes wishing it would all go away. But while the shirt was gone when I reopened my eyes, the trail of laughter that followed it still rang in my ears. That people found the shirt amusing was as abhorrent as the shirt itself. That the school administrators didn't send the boy home with a suspension or even expulsion is beyond belief.

More people were dying, 'experts' were talking, but still no real facts. The only thing one could be sure of was that nothing was sure. Fear that close contact, drinking from the same glass, kissing - even sitting on a toilet seat or breathing the same air - could pass this disease on to another person continued to rise. People became afraid to touch because they might catch whatever this thing was. And touch is the most important thing to a person who is suffering from an unknown and untreatable ailment.

If the world sat in fear, how much more afraid were those who faced certain death? Or knew they would have to face it alone?

The silence was deafening. The roar of the mob mentality even more so.

Perspective

A federal Justice in Australia's High Court made a comment the other day which really puts things in perspective.

He made an observation while the court was considering an appeal against a man convicted under Australia's new anti-terror laws -- the first person to have been so charged. Justice Michael Kirby's remarks were made in response to the Solicitor-General stating that Australia was more vulnerable to terrorist attacks since the events of September 11, 2001 in the United States.

Kirby said, "Yes, but the Americans, with all respects, have become obsessed with September 11. That is not an event that occurred in this country, and I think we have to keep our eye on the threats to Australia."

Justice Kirby added that more people died every day from AIDS than died in September 11.

According to the UN, 7,761 people died from AIDS-related illness each day across the globe in 2005. Approximately 2,900 died in the World Trade Center and Pentagon attacks. That's more than two and a half times for a single day -- or 975 times over the course of just one year. That's 2,832,765 deaths from AIDS in one year.

I've been thinking this since 2002, when I realized that "9/11" and "September 11th" had become little more than catch-phrases. AIDS is still being ignored, especially in America, while people still talk about the events of ONE DAY nearly five and a half years ago.

Some perspective, isn't it...?

Dave