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Joe's death reshaped my life. I was sick of the pain homophobia had caused my friends. I was sick of Reagan's years-long indifference to the epidemic. I was sick of the medical-pharmaceutical establishment, which enriched itself while its feeble response to AIDS perpetuated the suffering. I discovered, for example, that Joe's home-care provider had received thousands of dollars from his insurance company for services that were never provided. The home-care company had continued to bill the insurance company two months after Joe's death. I called them and they apologized profusely for the "mistake." Rather than refund the full amount to the insurance company, they offered instead to send me $800 that I could donate to the charity of my choice. HIV infection was and is a big business.
In 1990, I enrolled in grad school to get a master's degree in psychology, followed by a doctorate. I wanted to do whatever I could to help people cope with the pain of rejection by society and their families. It offended me that in the first 10 years of AIDS, it was nearly impossible for my friends to find affordable counseling, either as patients, grieving survivors or terrified but sexually active young men. All of us feared that the ongoing trauma would never end.
But things suddenly changed. Fifteen years into the epidemic, scientists discovered a group of drugs that, taken in combination, could radically slow and even reverse the proliferation of HIV in the bloodstream. The terrifying face of AIDS began to fade. Men who'd been wasting away suddenly rejuvenated and returned to work.
My friend Paul threw away his cane and started calling himself Lazarus. Like many others, he'd sold his life insurance policy to a company that paid 85 percent of its value, expecting him to die within a few years. Paul ceased his annoying but hilarious habit of reviewing funerals like Broadway plays. (The nadir was a mutual friend's funeral at which his partner hovered over the open casket and sang, "You Are the Wind Beneath My Wings.")
Having outlived his insurance advance, Paul resumed his career in advertising — apparently, as he says, "doomed to work forever." The same thing happened to thousands of men all over the country, as long as they could afford the expensive new drugs or convince their insurance companies to pay for them. It was a joyous time for many.
But something else happened after the decline of AIDS. Those who lived through the worst of the epidemic stopped talking about their experiences. This is a common response to trauma. Survivors of the Nazi death camps, for example, became famous for falling into silence. Because HIV infection is no longer always visible, even the infected have become comparatively silent, for understandable reasons. There remains a virtual class difference between the infected and the "clean," so there's great reluctance to disclose HIV-positive status. As long as condoms are used, it's not so much an issue.
The media have helped relegate the ongoing epidemic to insignificance by repeating the upbeat, popular myth that HIV infection is a chronic disease as readily controlled as diabetes.
Meanwhile, AIDS still kills 18,000 Americans every year.
Could we see a return to the annihilation of the early years of the epidemic? There is growing concern that new drug therapies are not being developed quickly enough to keep pace with infections. I have little doubt that if AIDS were to experience a surge, right-wing demagogues would do all they can to inhibit federal support, as they are doing now with every aspect of the social safety net. The crippled economy has already greatly increased the number of HIV-infected people reliant on federal and state government for their drugs. But the economy has also impoverished government coffers, so that such programs are being cut back even as they become more needed.
The simple solution to almost eliminate the risk of HIV infection is the use of condoms. For men of my generation, adapting to condoms after years of mindless fucking was difficult. But the association between sex and death remained explicit for many of us. The ghosts of our friends attended our sexual interactions.
To those of us who became involved in helping people with AIDS as friends and care providers, it became obvious early on that getting tested, practicing safe sex and actively seeking treatment were often tied to one's comfort with being gay. Standing up to the disease required standing up to prejudice. That hasn't changed, according to a public health official who requested anonymity. A soon-to-be-published study, he said, confirms that practice of safe sex is strongly dependent on the degree of external and internalized homophobia with which one lives. It's likely that the more homophobic one's surroundings are, the more one internalizes shame and tries to hide. Seeking help, especially if one does test HIV-positive, almost certainly exposes one's sexuality. That's probably why the rate of infection is increasing in the black and Hispanic communities, which remain more homophobic than the rest of society.
We survivors cannot forget the bad years as much as we'd like to, and we don't want to see the horror return. So many beautiful friends were robbed of their destinies. I received a note from Joe after he died, mailed by one of his caretakers. It embarrasses me a bit, but I'm ending this memoir with it:
You were ALWAYS there! Big muscular brute...can't hold back tears, a gentle giant with a mind! I hope that while you're still young, and still able to do it and not be too busy with the newspaper and publishing world, that you will write a book. You have so much inside you that I believe you could make a difference. That's all I ever wanted to do, make a difference. I had to work so hard and yours was just handed to you on a silver tray. Don't drop that tray, Cliff. And if, after I'm gone, you want to write a paragraph or two about a courageous person with AIDS and friend, that would be nice. I love you, Cliff, and thanks for being part of my life. Love, Joe."
This is for you, Joe.
Next: The first two decades of AIDS