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Charles Karel Bouley

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HIV: The War Still Rages

Posted: 11/30/2012 10:22 am

Everything old is new again.

Rula Pia Kabibi was a marvelous, deranged drag queen. She would do the most bizarre numbers that actually left audience members grossed out, offended or just plain sickened. (Think delivering a bloody baby doll onstage during a musical number.) Rula's real name was Mark. He and his friend Phonecia ran off to San Francisco in the early '80s, as young drag queens are wont to do. Six months later we all sat at the Frat House in Garden Grove, Calif., attending a memorial show for Mark; he had fallen to something new, something unknown, called GRID, a "gay cancer." He was the first person I knew to die of what would become known as AIDS once the CDC and the Pasteur Institute finished their pissing contest over the naming of the actual virus.

Soon the Frat House and countless bars like it across America would be filled with men so skinny, so frail, with purple blotches on their skin, wicked coughs and so many other maladies. One week they'd be there, and the next week they'd be gone. Ronald Reagan was president and offered no leadership or help. The CDC was scrambling. Doctors... well, the ones who would even treat the patients were putting butterfly bandages on gushing wounds.

I remember the first time an ambulance wouldn't take a friend to the ER because of his symptoms. I remember the anger, the outrage, the sense of abandonment.

I remember the protests: ACT UP, the Sisters of Perpetual Indulgence and Luke Sissyfag showing up everywhere Reagan went to make him acknowledge the epidemic.

I remember the fear of sex.

I remember the fights over closing bathhouses.

I remember the first AIDS drug AZT and the crippling side effects that it had on so many.

I remember being closed out of hospital rooms by "real family." You want to know the source of the marriage equality movement? It is AIDS. So many lovers had homes taken, lives destroyed. So many had to wait outside in the hospital lobby as their lovers, their partners lay dying, because family swept in and called the shots, family that didn't approve.

I remember how on weekends San Francisco's Castro would become a garage-sale city, with people selling the belongings of dead loved ones.

I remember Lorenzo, my dear, sweet best friend Lorenzo Braxton, and the night I watched him take the oxygen mask off his face, knowing that he would slip into unconsciousness and die.

I remember the parties where friends would say goodbye and then go upstairs to die at the hands of a group of true friends, none knowing who it was who did what, really, each being careful not to break any law.

I remember trying desperately to find funeral homes that would take my friends' bodies, with so many turning away the dead. That's right: Funeral homes refused bodies because of how they'd died. I remember the pain and the hatred. I remember all of it.

I remember my friend John returning to his home after the devastating loss of his partner to Pneumocystis pneumonia (which is preventable now), only to find the locks changed. The police laughed at him, told him to get a lawyer and drove away.

I remember the first time I kissed my late husband Andrew Howard in front of a fireplace in Huntington Beach, Calif. There we were, naked, on our second date. I remember him turning to me and trying to tell me something, and then the tears. He was HIV-positive and got up to get dressed, thinking I would bolt or throw him out. I hugged him, told him we were all going to die of something and didn't let go of him for 11 and a half years.

I remember flying to Stanford University on a wing and a prayer for a study of the effects of a new drug that would become Merk's Crixivan. Andrew did so well that he was on the cover of The Wall Street Journal, on CNN and so much more. We became the poster children for safe sex.

I remember finding a special wristwatch that had seven alarms so that Andrew could wake up every four hours to take his new meds.

I remember how cold Andrew's lips were the last time I kissed them.

I remember my anger at talk-show host Dennis Prager for saying that Andrew died of AIDS. He didn't. He died of medical malpractice (proven, even if I had to change state law to do it, but that's another story) and of the side effects of potent AIDS drugs that would become known as "the cocktail."

I remember doing a blood drive in 2000 for KFI Radio, only to be told by the Red Cross that gay men still can't donate blood, my very blood turned away.

Yes, I remember the holocaust of AIDS. And while I may be HIV-negative after 57 tests (I get them twice a year, like clockwork), I have lived every horrifying day of it. I lived it firsthand, every painful step, every single funeral, every memorial service, every trip to the ER.

I sit in an empty house now, a house that should be filled with so many old friends, but most my age are gone. I lost a generation of friends to AIDS. Any gay man at 50 who is lucky enough to be alive today has similar war stories. So many funerals, so many memorials.

It is because I remember all this that I look at this week's news about HIV and AIDS with anger, outrage and disgust. According to the CDC, 26 percent of new infections are kids. Kids. Children, 13 to 24 years old. And 60 percent of them don't even know they have it. Of course, they are part of the 18 percent of HIV-positive Americans who don't know they have the virus. And though the worldwide rate of new infections is down (in particular, sub-Saharan Africa excelled at getting them down, but how much of this was due to the fact that AIDS had already wiped out millions?), in America, among young gay men, straight kids, black, brown and yellow Americans, the epidemic is going strong and even flourishing. AIDS kills thousands, thousands, of Americans per year, more than 9/11, more than the wars in Iraq and Afghanistan.

I wanted bathhouses closed, but the public made that all about homophobia and screamed, "What next? Concentration camps?" I wanted quarantine -- it's a communicable virus, after all -- but only Fidel Castro would dare do something like that. And now I want mandatory testing for all schoolchildren over the age of 14. They are infecting each other and not even knowing it. They are dangerous. It's time condoms were in every school everywhere. It's time that real sex ed is taught, not abstinence-only education but real sex ed. But as at every step in this crisis, my wants won't matter, and what needs to be done won't be. Kids will die or live their lives forced to take serious medications with serious side effects.

Speaking of side effects, everyone thinks AIDS is a manageable disease, but what about the fact that managing it means taking drugs so powerful that you have to take them at night because your body can't handle them in the daytime? Drugs that make dreaming a horrifically vivid event, full of violence and sex so real that you wake up screaming? Drugs that need other drugs just to counteract their side effects? Drugs so expensive that it costs hundreds of thousands of dollars over the course of a lifetime?

No, there's still no cure. And though there may be treatments that make this disease "manageable," it is still the microscopic killer it always was, waiting to tear down an immune system so that other diseases can take over. I've seen its face before, and it's here now, stronger than ever.

Every living American between 14 and 65 should be tested. Not you, you say? You're married? Monogamous? I've hosted countless radio shows featuring women who had married their husbands as virgins, only ever slept with their husbands and still contracted HIV. African Americans call it the "down low," but in the end, all the "down low" ever got anyone was an even lower T-cell count.

The youth problem is unforgivable. It's our fault, the fault of adults, that they are getting infected. It is completely preventable. And not all of these youth infections are accidental, and that's an even greater shame. My friend, songwriter, singer and activist Thea Austin (known for the Snap! hit "Rhythm Is a Dancer"), volunteers in the community. She hears case after case of street kids willingly infecting themselves with HIV so that they can qualify for housing, medical care and food. It seems that some American kids are so desperate to live someplace, to eat, to get off the street that they'll give themselves a deadly disease to do it, because there are more resources for them if they have HIV. What an American shame.

If 26 percent of new infections are among the young, why aren't the old doing something, something real? Because the stigma of AIDS is still there, because red ribbons didn't solve the problem, because everything old is new again, even deadly diseases. We owe it to our children, the children of America, to do better. We have grown complacent about the facts and now see AIDS in the same light as diabetes. It's not.

I wish I could open my mind, my heart, my emotions to these young people. If they could feel what I have lived for one instant, they'd practice safe sex, they'd get educated and they'd abstain or be safe every time. If I could hold a magic mirror up to their parents and show them what I've lived and seen, they'd call their children home from school -- high school, grade school, college -- and have the frankest, most scared-straight-type discussion about sex, AIDS and prevention that they've ever had. But I can't.

All I can do is say this: AIDS is still here. It still kills. It is no fun to live with it, and you don't want it. It is not a way off the streets, and it's not worth one night of really hot bareback sex because condoms turn him off. There's not one bit of sex with anyone that's worth the lifetime of complexity that is AIDS.

For all the good news about HIV and AIDS, we are failing, and the saddest part is that we are failing children, kids, teenagers. Talk to your kids. Get them tested. Even if they swear that they've never had sex before in their lives, if they are able to have it and are under 18 and you can still call the shots, get them tested. Hell, you can even do it at home now. Have difficult talks. Many of you parents out there will have to get educated yourselves. But do. And do it now. The virus isn't going anywhere, but too many young people will be, their destination either a doctor, a hospital or a funeral home.

The war against AIDS is still being fought, and HIV isn't giving up. We mustn't either.

 

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