[I] may be crazy but I'm the closest thing I have to a voice of reason.

17 April 2010


Queer. In Spanish it is mariposa, butterfly, and just like the word queer, the word mariposa was originally an epithet. So many words have been rehabbed since 1994. So many things are possible that were inconceivable a decade and a half ago. So let me make a little confession. It’s after 3 AM and tonight’s installment was ready before midnight but I got caught up in, well, the past. I thought I was circling the drain on how to introduce this piece, but the fact is I could have posted it without any lead-in. Something occurred earlier today that had me back in 1994, when Jose died, when we lived in a world that reviled gay men and believed that God was raining down hellfire and damnation on the sodomites who brought us AIDS. That’s the world I wrote HIV University for, but that chapter, in fact all of The Movie Lovers, couldn’t be read until now, when everything is different. Because in 1994 - hell, in 2004 - I was queer. Not gay. Strange. What I wanted to say about the time of AIDS, how I wanted to say it, and who I wanted to say it to just wasn’t possible. Oh I said it, but everyone who was to read it had a new argument for why I could not, should not, would not. And so I waited.

Today I looked up and realized that 1994 was gone, that it is, quite literally, history. But when I set out to celebrate that tiny but entirely awesome fact, I got pushed back in time, back to a time when I had a voice and I sang it out loud but no one could hear it. So today, as I tried to imagine how to lead into my diatribe against ignorance, aka HIV University, I lost traction. I forgot that I have you, dear sweet readers, who Tweet me and Blip me and Face Book every day to say that you enjoy being here, or as one of you said last night, “Yes, U are right.. tonight’s blog was just a taste, not much more than a tease of what's to come.. fine, i'll hold my breath..” ~laughs~ So although I have circled the drain without inspiration for more hours than I care to say, I am here, now, confessing, because I was not about wimp out and leave a blog tease again.

Queer. Look it up in the dictionary. All it means is to deviate from the usual or expected; what we call normal is just that: the usual, the expected. But by now, I’m sure we’re all clear that while I may be just a girl who likes boys, I am entirely queer.

LONGTIME SURVIVOR (HIV University), part 2

Today less than half my friends are gay. Not long ago most of my friends were gay, but there’s been some attrition. That’s where my education began. My AIDS education. For most of mainstream America it’s fair to say that AIDS education didn’t get rolling until the 1994 release of Philadelphia; until that time, Longtime Companion was the only feature length film to deal explicitly with the subject. In 1990, the same year it hit movie theaters nationwide, Longtime Companion aired on Oregon Public Broadcasting and that’s where I saw it, right here in my living room with my husband, Cliff, my best friend, Jose, and his partner, Frank. The movie closes on an empty beach on Fire Island, the same beach that is packed belly-to-back with laughing, tanning, cruising gay men at the beginning of the story; at the end it lays as abandoned as the rumpled sheet of an unmade bed. A woman and two men walk across the sand, just the three, talking about those who’ve died, and as the credits roll a place called the Postmortem Bar appears, repopulating the scene with lost companions. Afterward, this ending was all we could talk about, and odd as it sounds, I think I believed our conversation focused on this scene because we found it to be so moving, not because we thought any of us would ever end up there. At least, that’s not what I thought. Not then.

When the story line in Longtime Companion ends, 1989, I was still half a year away from meeting Jose. I was maybe a year away from his long distance phone call: “I’m gay.” Next sentence: "I have AIDS." Not HIV positive; AIDS. Gay I'd already figured and I was touched that he wanted to make an official announcement, but AIDS . . . that knocked the breath out of me.

When the story line in Longtime Companion ends, I was still two years away from Jose sitting on my couch, ashen, silently contemplating his death. I was over four years away from the time when Frank would ask me if I thought Jose’s memory was deteriorating and I would lie -- automatically, just the way I would answer Jose when he asked the same question for the third time in less than five minutes -- automatically and without question. By then, Jose had contracted CMV, cytomegalovirus, among other things. It had lodged in his brain and was slowly closing things down, a kind of Alzheimer’s of the boardwalk at the end of the season.

Longtime Companion opens on a sunny spring morning in 1981 to a tableau of beautiful buff men reading a New York Times article, the first about the new “gay cancer.” Immediately each of these men calls his best friend, his lover, his partner. The straight, single woman in the movie calls her best friend: “Did you read the paper this morning?” At the time, Kaposi’s sarcoma was so rare only doctors had heard of it. And while we all pretty much know what getting Kaposi’s means now, back in 1981, summer on a Fire Island beach was still carefree and, well, gay.

In the summer of 1981 I had just finished my first year at community college. I don’t remember reading about a “gay cancer.” That fall, the CDC declared the disease that would come to be known as AIDS to be an epidemic, but I didn’t hear about it. I suppose it’s human nature to need a particular individual, a face, someone to be drawn into our orbit or we into his, before we can care about an entire group of individuals. At that time there were no openly gay men in my circle of friends.

Just two years later, in the spring 1983, the men in Longtime Companion have moved on from reading about a cancer that an unlucky few might develop to talking about a disease called AIDS. They know it’s sexually transmitted. They alternate between worrying and reassuring themselves about past behavior. They practice safe sex. In the spring of ‘83, while I was finishing my associate’s degree, I accepted a dinner invitation from the man who would become my husband. We had sex on the first date. We had sex before we had dinner. Actually, we had sex instead of having dinner: glorious, mind-numbing, lean-against-each-other-and-gaze-in-the-mirror-afterward-in-total-awe sex. We didn’t practice safe sex. We came of age in the ‘70s; we’d never heard of safe sex. Fact is, we probably couldn’t have practiced safe sex even if we’d had a mind to, since the first “safer sex” guidelines weren’t even proposed until 1983, right around the time Cliff and I hooked up. Had those guidelines been available our sexual histories should have inclined us to exercise caution, but again we probably wouldn’t have. This isn’t just because, like most heterosexuals, all we worried about was birth control (and the occasional heartbreak) nor because we hadn’t heard about AIDS, though we hadn’t, but because even if we had heard about AIDS, we would also have heard that AIDS was a gay disease, a virus with a bent preference.

But sitting here in a brand new century with all the available facts, I can tell you that 1983 was also the year researchers documented that the so-called gay disease could be transmitted from males to females. Still, facts notwithstanding, AIDS was and seemingly always will be a gay disease to Americans. It’s not that people didn’t care. They just didn’t see how this affected them. But those with HIV knew. And they cared.

From Jose I learned how dangerous any infection is for a person with AIDS, and so when one of my cats accidentally scratched him, I went for disinfectant. I reached to swab the cut with a cotton ball, but Jose drew back and told me to let Frank do it. “It’s only a scratch,” I said, “I’ll be careful.” I felt silly saying even that. The dot of blood was no bigger than an aspirin, but Jose who was never forceful, insisted. Let Frank do it; Frank was HIV-positive. Facts were facts. Jose always very careful around his uninfected friends and family, and he took the education of others on the subject of HIV/AIDS as a personal responsibility.

Once Frank had bandaged the scratch and I’d put away the disinfectant and cotton balls, Jose turned to Cliff and said, “You know Cat Scratch Fever?”

Cliff grinned. He’s a metal head from way back. “Yeah. It’s a Ted Nugent song.”

Jose was not smiling. “No, the disease. It’s a disease.”

Cliff, Frank, me, we all chimed in: “It is not!” Jose’s trickster sense of humor was legendary and so the three of us stood grinning at him like a colony of Cheshire cats. We were not to be fooled.

“It is very dangerous,” Jose assured us solemnly.

With Jose there were two things that never ceased to amaze me: the silly “facts” that would pop out of his mouth like gumballs, for example, Cat Scratch Fever, which could not possibly be true, and the not so funny fact that half the time he was not joking; some of these things could, and eventually would, kill him. As it turns out, “cat-scratch disease,” or CSD, is quite common not only in Central American countries like Nicaragua, where Jose was born and raised, but all over the world, including the United States. In Texas, where Frank was raised, the number of confirmed cases of CSD the year Jose died was higher than over a half-dozen other animal-borne diseases combined, including Lyme disease and Rocky Mountain spotted fever. Even so, CSD is primarily a child’s disease in the US. It is not considered serious, and treatment is normally considered unnecessary. For the immune compromised, however, cat-scratch disease can cause neuropathy, pneumonia, problems in the central nervous system, and encephalitis. It can be fatal.

In Longtime Companion, 1984 is marked by one of the men discovering he has a six-inch lesion on his brain: toxoplasmosis. He smiles brightly at his partner. “This explains why I’ve been throwing up.”

I remember 1984 for Cliff’s promotion from boyfriend to live-in partner and for two fabulous forays into urbane culture. The first involved spending spring in Manhattan. Not only did this trip mean three glorious months of theater, art, and music while I studied American culture, but at the advanced age of twenty-four it also marked my first time in a big city for more than just a day trip, my first time away from home without a family member, and my first (well, only) time being mistaken for a boy. It was in the Village, naturally. Back home in Portland, my newfound acculturation ushered me straight to the performing arts center where I gained part-time employment and my second entree into urbane culture: theater, opera, music, dance, and as often as not, the chance to chat the night away with a gay co-worker. Although these co-workers were out to most of the younger crew, a few of the older women on staff were still trying to arrange dates between their nieces and some of these “nice young men.” One of these nice young men and I became friends. We’ve been friends for over twenty years now and the last time I saw him he introduced me to a friend of his who referred to him as her ”best gay friend” -- as opposed to her best friend, who was someone else. It’s worth saying that this distinction struck me as far stranger than my being mistaken for a boy.

I didn’t know it at the time, but this friendship would mark a turning point in my life. As a child I had been aware of those “nice young men” in the family circle the way most people in American families are aware, vaguely: inevitably there was some male friend of the family, some uncle or nephew or cousin, who straightened the table settings, who helped repaint the kitchen or paper the dinning room, who was so thoughtful; someone who could cook. I was a teenager when my mother demonstrated through the unspoken bond of friendship that all men are created equal, no matter what gets whispered about them. The generation after mine, the HIV generation, grew up with out gay men as just another stripe in the rainbow of humanity. For my generation the education was different. For some, the learning began with the shock of a phone call: “I’m gay.” Others, like me, had a gradual accumulation of experiences: school boys who hung around for protection as much as friendship, college boys who risked their not-yet-ready-for-prime-time coming out stories, young men who shared confidences about what went on behind their closet door. So, my friendship with one of these nice young men didn’t mark the first time someone came out to me, nor was he my first “best gay friend.” No, as I look back, what I see is that this friendship was the turning point in my friendship with gay men. I was twenty-four when this man and I became friends and my life began to become more densely populated by gay men; by thirty-four I was knee-deep in bodies. Truth is, I don’t know that I’d be writing any of this were it not for the fact that my circle of friends became very gay and then, too rapidly thereafter, very dead.

When I graduated from college in the spring of ‘85, I considered myself educated, socially conscious, knowledgeable about what was important in the world; yet looking back, I’m none too pleased to see my younger self more self-involved than aware. Oh, I thought I was aware. I was aware of apartheid in South Africa. I was aware of the starving in Ethiopia and on my twenty-fifth birthday took donations in lieu of gifts. I was aware that the man in the White House was making lousy decisions. (Those who can’t recall who was in the White House probably aren’t movie buffs.) I was aware of chlamydia and herpes and that venereal diseases were now called STDs. But mostly I was aware of my pride at having successfully put myself through college and my joy over the diamond class ring my auntie had purchased to mark the occasion. What did I know?

Several of the peripheral characters in Longtime Companion have died by 1985, and I want to say that most heterosexuals had no idea what was happening at this point, not unless we knew someone who was gay, but that’s not quite the case. A national poll taken in 1985 revealed that 72 percent of Americans favored mandatory testing for HIV, over 50 percent wanted to quarantine those with the virus, and 15 percent of us would have preferred the infected be identified by tattoo. When I see statistics like these I wonder how I managed to be so oblivious. Then I remember the collective gasp and the slammed door: Rock Hudson had AIDS, and thirteen-year-old HIV-infected Ryan White wanted to attend public school. I remember the reactions of my family members and non-gay friends, too. I remember the fear, the judgment: parents, some of them doctors, fearful that their child might try to become blood brothers with the infected; friends who, though they could not tell me to my face, would not allow their children to eat off my plates nor drink from my clean glasses because Frank and Jose used them as well. I remember everyone was afraid. By 1985, the talk in Longtime Companion has shifted from AIDS to opportunistic infections and drugs: which drug will work best under each circumstance, each individual combination of infections, each version of the compromised life. One of the central characters, Sean, has developed CMV. It eats your brain. After Sean’s memorial, the next scene is his partner’s memorial. Those in the know reel off the latest research: HIV is in saliva. Lovers are afraid to kiss, much less make love. Friends surreptitiously scrub their hands after hugging a hospital-bound buddy.

When Jose died, at the age of thirty, AIDS was the leading killer of American men aged 25 to 44. All men. City boys and country boys. Homo and hetero and bi. The United States is the only country in which HIV originated and flourished in a marginalized and stigmatized population that was, for the most part, out of sight and easy to put out of mind. Because AIDS began here in the gay community, gay and HIV have became fused in our minds. While it should go without saying that gay does not equal HIV positive and HIV positive does not equal gay, HIV/AIDS continues to be considered a predominantly gay disease in the US, statistics to the contrary be damned.

For things we do not wish to look at, we have closets.

In the early days of the AIDS epidemic (an experience for those on the front lines that had the feel of a holocaust, this word with its meaning rooted in burnt offering and sacrifice; not an epidemic, which simply implies prevalence, something widely or commonly occurring), The New York Times refused to acknowledge gay relationships. The Times’ obituary column referred to surviving partners as “longtime companions” of the deceased. “Widows,” Frank called them, his mouth smiling but his eyes serious. It is from this denial of acknowledgment that Longtime Companion takes its name.

I know from my own experience how hard it is to say what others do not, cannot, or will not acknowledge. For the remainder of the 20th Century, whenever I talked about Jose and the circle of friends I had when he was alive, I usually got one of two responses. One felt like no response in particular inasmuch as I was talking to those who found my lifestyle or life history to be unremarkable, maybe even similar to their own. The other was some combination of shock, awe, and/or multiple questions about why all my girlfriends were men. Being around men whose hearts lead them to partner with other men has never struck me as strange. Love is love, as far as I can tell, attraction is attraction; we go where it leads. What strikes me as strange is that so many of my friends and so many of my friends’ partners died before any of us reached middle age. What strikes me as strange is the fear and anger that splashed back at me when I talked about gay men or AIDS in what appeared to be an educated perhaps even liberal-minded group of individuals. And, finally, what strikes me as strange, strange that it is still here, strange that it is still so strong, is the denial that still surrounds both homosexuality and HIV/AIDS (oh, how I wish these two were not so often bound together in the same sentence). My father, for example, a man whom I consider to be clear-eyed and open-minded, a man who makes his home in places where land and sky are wide and spacious, says to me from his couch one day, “I don’t know any gay people.” I tell him, “Yes you do, Dad.”

Knowingly or unknowingly, what we deny we sacrifice.

AIDS was declared an epidemic just as the ‘80s opened, but most of us didn’t know much about it until 1988 when, seven years after declaring an epidemic, the Surgeon General mailed out 107 million copies of a small pamphlet entitled Understanding AIDS. “Finally,” Cliff and I said, and we laid the pamphlet out on the coffee table. We hoped that our friends, family, visitors would read, discuss, and disseminate this vital information. But instead of encouraging communication, the effect was like holding up a condom in church: whenever anyone came over, silence ringed the coffee table. Now when I look back, what I find most telling is not the silence, nor that Cliff and I felt the need to show solidarity with those who’d been openly maligned in the media and on the street for “infecting innocent victims,” but that the two of us didn’t talk about getting tested. If we had any doubts, we each did the math and kept it to ourselves.

The spring of 1986, I found myself working my first full-time job since college graduation and that spring is acid-etched on my mind’s eye because it arrived with an AIDS joke, the first -- and last -- told to me in anticipation that I would enjoy it: “What’s meaner? A junkyard dog with AIDS or the man who bit him?” My curt response cost me an office friendship. I was naive enough not to understand why, but so be it. AIDS is not a joke. AIDS is not a movie. There are no house lights coming up at the end. There is no walking home. Every gay man who has died because of AIDS was somebody’s son, somebody’s brother, somebody’s uncle, nephew, cousin, maybe even someone’s father. In the decades since AIDS was declared an epidemic and safe sex replaced birth control as the number one concern of the sexually active, an entire generation of children has been born, grown, and come to sexual maturity under the Damocles’ sword of HIV. The HIV generation was raised to fear sex in a way that even the Church never conceived of. They never got the freedom that the generation who came of age in the ‘70s had, we with our rallying cry of “If it feels good do it,” but they’d like to; over half the new HIV infections among those under the age of 25 is from sexual contact, heterosexual contact. Abstinence remains as useful a safe sex plan for this generation as it was a birth control plan for mine.

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