It was one of those rare hot days in San Francisco. Which worked out well given I was basically naked. A make-up artist from the San Francisco Ballet was taking a break from his regular duties for the 1993 season and was painting my 29-year-old body blue. It felt like a tiny dog had been licking me for hours. At least it wasn’t a tiny cat, so it wasn’t scratchy; it just tickled and was very peculiar. The licking sensation, that is. Well, all of it, as I think back.
I was in an artist’s loft-cum-studio somewhere down south of Market Street preparing for a photo shoot with Annie Leibovitz. There were about a dozen of us being painted, all in varying stages of nakedness, all of us women living with HIV. Ms. Leibovitz had been in town shooting an outreach campaign for the San Francisco AIDS Foundation. My favorite image from the Foundation, so far, was one from a previous campaign with the words “Be Here For The Cure” superimposed on a picture of planet earth as taken from space. Being alive for that day—for the cure—was a goal I intended to work toward. Ms. Leibovitz’s images were intended to complement that message with images of healthy, happy HIV-positive people, to counter the dying face of AIDS we’d seen for so long. That was also a goal I would work toward, living with HIV as a healthy, happy woman.
When we’d first heard about the campaign—we being the women I knew living with HIV in the San Francisco Bay area through a local group called WORLD where many of us worked, volunteered, or participated in support groups—it was not long after Demi Moore had appeared on the cover of Vanity Fair. In 1991 she’d appeared pregnant and naked and then a year later with body paint depicting her in a suit. Both images, taken by Annie Leibovitz, had rocked the world of journalism and photography.
A few of us thought it would be a powerful statement if we could portray ourselves the way we saw HIV in our bodies. The world of HIV was a small one (still is) and word of our idea reached the San Francisco AIDS Foundation and Annie Leibovitz and, through channels I was not a part of, the photo shoot for us became a reality. I was, however, chosen to be a part of the project with a group of about a dozen HIV-positive women of varying ages and ethnicities.
Some of the women chose to be painted like their medications, some like wild animals, one with a snake and one with her hands covering her chest making the shape of a heart. My body looked like I was trying to be a mermaid, but, in fact, I was trying to be a blue marlin.
“Are you sure about the worms?” the artist asked, holding a three-inch length of brownish-red yarn in his hand. “You look so gorgeous just as a fish. I mean the blues make your eyes look like sapphires!”
“I’m sure. The worms stay,” I answered. “Remember the story?”
“Okay. Here come your worms,” he said as he brought out the eyelash glue to adhere each one to my belly before painting a simulated gash around them.
The story referred to both my distant past and my recent past. The day that it was confirmed I had HIV, in May 1992, I’d had a flashback to sailing through the South Pacific some 10 years prior in the early 1980s when I was still in my late teens crewing on sailboats.
Somewhere between Hawaii and Tahiti, we were trolling a line as we always did and when it tightened we struggled to pull our catch on board. The fish turned out to be a six-foot blue marlin, the kind you’d stuff and hang on your wall. I had never seen such a beautiful living thing up close. Massive, it shimmered like a slice of South Pacific sea, glistening in the setting sun. It flipped its tail in protest against being out of the water. We were a hospitable crew so we got the fish drunk by pouring a shot or two of rum in its mouth before giving it a swift final blow to the head.
We were stunned that such a magnificent fish had snagged on our line. When my crewmate sliced into the marlin’s belly, however, we quickly understood how we’d caught it. What should have been vibrant white or pink flesh, was dull and graying. Inch-long worms were making their way through its innards, like children playing in a maze, up and down and back and forth and hidden and reappearing as they ate their way through this dying creature’s core.
When I was given the confirmatory results in 1992 that, indeed, I was HIV-positive, the image of that infested fish and those hungry worms flooded my brain. It was so beautiful on the outside and yet being eaten alive from within. That was how I felt. I knew I looked perfectly normal and healthy to everyone else but I suddenly saw HIV like an evil Pac-Man, devouring all of my essential parts. So when the photo shoot came along and I met with my artist, I shared that experience and we agreed it would make a powerful image.
And there I was, transformed into the marlin. Beautiful and blue and iridescent outside with worms spilling out of my belly: inside, an incurable virus eating away at me. It was not lost on me when, by chance, k.d. lang’s dulcet voice wafted from a radio in the background as the worms were glued to my belly and she sang:
“Even through the darkest phase, be it thick or thin. Always, someone marches brave, here, beneath my skin…”
What struck me as most peculiar about that day—even more than being naked and painted and about to be photographed by one of our greatest living photographers—was that I was alive and, at least on that day, in great spirits.
I could barely remember what my life was like before HIV. The virus may not have consumed my entire immune system yet, but it had definitely taken over my existence. I was still only 29 years old and I had not entirely unreasonable questions about whether I would ever see 30. At the same time, emotionally, I’d aged decades in the 12 months that had preceded that day in the studio.
The day I’d heard the news for the first time replayed regularly, like an old vinyl record that I frequently had to push forward so I could hear the rest of the song. It took a conscious effort not to stay stuck in that scratch in my life story and remember that I was alive and my future unknown. Without warning, a moment, a feeling, or a word could still send me back to mid-May 1992 and I’d be yet again recalling the moment I was told of my diagnosis.
Barefoot on the smooth terracotta tiled kitchen floor where I was housesitting—a place I called The Garden House—I returned the call from my doctor’s office that Tuesday in May 1992 and gazed out over the landscaped yard of the Zen oasis the owners had created up on that hill, overlooking San Francisco.
Within a few seconds, my doctor was on the line. Not a chatty man, he jumped right in.
“So, I have your results back,” he said. I could hear him shuffling papers then taking a drink and clearing his throat. “Um, you don’t have mono, so that’s good.” I had had a strange rash and general fatigue for months and my doctor was trying to figure out what was wrong.
“Oh good, that’s good,” I said.
I tilted a bottle of wine on the counter slightly to see the year on the label. I was so nervous I couldn’t read the numbers.
“Or strep. That infection in your throat—how is it, by the way?”
“Uh, a little better I guess. I’ve been drinking lots of fluids and maybe that’s helped,” I said, setting the bottle back down on the marble counter.
“Good,” he continued. “But the thing is, your blood work was still off and, well, um, the HIV test…”
“Well, you see, it came back positive.”
I had begun walking around in little circles, feeding the phone cord from the wall up and over my head, like a cat following its tail. And then I froze. Every inch of my body tingled and I shook ever so slightly. My clammy hand nearly dropped the phone.
Could he possibly have just said what I think he said?
He continued speaking but nothing registered. I continued walking my circles and made so many turns that I managed to wrap the cord around my neck to the point that I was struggling to breathe. I unwound myself and tried to focus.
“…so here’s the number for the clinic up in Novato. You should probably go there and have another test, to confirm the diagnosis,” he said. “Hello? Are you still there?”
Now in a complete, confused daze, I attempted rejoining the conversation.
“Yes. But I kind of missed what you’d said, after the HIV part. I’m sorry, but could you start again?”
“Of course,” he said as he continued. “I was just saying that since I’ve never dealt with this before that you should probably go to a clinic and have another test to confirm the HIV and then they can refer you to a specialist. I’m suggesting Planned Parenthood—they do excellent work.”
“Oh, okay,” I said.
“I am so sorry. I’ve never had a patient have a positive test. I’m just so sorry. I don’t really even know what to say.”
“Oh, all right then. It’s okay. Thanks.”
I took the information from him, although what I wrote was illegible on the notepad. Then I hung up the phone. My brain felt as frozen as if I’d eaten too much ice cream. My head throbbed—thoughts were impossible to process. I stood in the sleek kitchen and stared at the pantry door for what seemed like hours. I didn’t cry, didn’t make a sound. I just stared at the blank surface that reflected my new reality, as if my existence—my entire past—had just been wiped away. It was all I could do until eventually the phone rang and I jumped back into my sweaty skin.
“Hey you!” I heard my sister on the line. I’d been living with her and her family for a few months, saving money so I could move overseas. She had been the one to relay the message earlier that afternoon to call the doctor.
“Did you call him back? It’s been an hour. Any news?”
“Yes. Well. I called and everything was positive. I mean, no, I don’t have mono or strep, but I guess I have HIV. He said that. He said I have HIV.”
“Oh my God. No, no. Oh no…!” I could hear her breathing fill with sobs as she began repeating my name. “I’m on my way, I’ll be there as soon as possible. I love you so much.”
I remained there, standing, holding onto the cool marble counter and staring at the flat white pantry door. In under an hour my sister arrived with a bottle of wine, which we drank, and then a few more that the owners of the house had left for me. The information was like a fly banging against an old window screen, hitting and hitting, but unable to find that one open spot where it could get through.
How can this be true? I’m only 28 years old. I’m too young to have my life stolen away.
Eventually the question crossed my mind: How could I have become infected? I knew that like most people—over 90 percent in the world—the infection came through unprotected sex. Probably, based on the preceding six months and the course of my illness, it had been a one-night stand that I’d had in Italy. I used to joke that as a single woman in gay-friendly San Francisco, I had to go overseas to meet a straight man. And I had.
Beyond that moment, however, the details of the how and when and where made no difference and I never again gave it much thought. How it all started was no longer of any importance. What mattered was how the story would end, and, most importantly, how I would live my life in the interim.
Somehow, I made it to work each day for the rest of that week. I am nothing if not practical. I needed the money. I was temping in a bank at that time and a cute guy sat at the desk across from me. He was probably in his mid-30s. Married with a child. He’d just found out that they were pregnant with a second baby. Clearly he felt trapped.
He kept saying, “My life is over. I can’t believe this. I’m done. Now it’s all about them. My life is over.”
I wanted to scream and throw things at him.
Listen, asshole, you think YOUR life is over? Wanna hear how MY Tuesday played out?
But of course I didn’t. I sat at my desk and did the most menial tasks possible so I could avoid having to switch on my brain. Filing and photocopying were ecstasy. I could now add “mindless drone” to the skill set on my résumé.
In the evening, I went back to The Garden House where I’d sit on the master bed—that whacky bed surrounded by mirrors, even on the ceiling—and take my frustrations out on the pillows. I watched myself fall apart from every possible angle.
The first time I’d visited The Garden House, the woman who owned it told me they’d bought it partially furnished and with that bed—and mirrors—in place. It was an extra-long California king and had, apparently, been hard to get up the narrow stairs so many years earlier, so they just went with it.
“Yeah, the last owner actually died in this bed,” she said as she patted the corner of the bedspread back into place.
“AIDS,” she continued. “What a shame, such a nice man according to his lover who sold us the house. I don’t doubt it, this house has amazing energy. He must have had a good soul. Never met him myself, of course. I mean, you know, he’s dead.”
A few weeks later, after my housesitting gig I was returning to my sister’s house in Novato, in Northern Marin—an hour or so north of San Francisco. As I approached her house I stopped to collect the mail. I went through the stack of letters as I sat in the idling car next to the rickety old mailbox filled with spiders.
I’d received two letters, one from the Peace Corps and one from the Language School in Prague. Having applied to jobs with both organizations months prior as part of my plan to get myself living overseas—long before being told I had HIV—I’d been waiting anxiously for their decisions. I’d hoped one would provide me a chance to escape this harsh new reality.
Both announced that I’d been accepted. Thank God. My French would be useful for a post in Senegal, the Peace Corps wrote. Yes! My willingness to venture to Eastern Europe was appreciated and would serve me well in the rapidly changing homeland of Vaclav Havel, stated the flowery text from the language school. Excellent! Finally I had something to look forward to. All I needed to do was complete and return the enclosed paperwork.
Upon closer examination of the papers, back in my room at my sister’s house, I realized that both organizations required an HIV test: With an HIV-negative result.
No, no, no, this cannot be.
At the time Czechoslovakia refused visas for people living with HIV. And the Peace Corps categorically refused HIV-positive volunteers.
That night I fell asleep clutching the envelopes that held a future that would not be mine.
I was always friends with the kid who died.
Although I can’t quite recall the specifics of his death, the disembodied head of the boy from my kindergarten Sunday school class hovers forever in my mind above the pair of sharp crosses that topped St. Therese’s: one cross on the Church, one on the bell tower, my friend’s head just up and to the left, that much closer to God. They’d printed his image among the clouds on the front of the flyer for his funeral mass and even though I can’t recall his name, I can see his kind young face, dark hair and eyes, hanging there still, a life cut short and forever suspended in time.
A year or two later, there was that boy from my 2nd grade class who grew smaller and more crumpled over time until his disease overcame him and eventually took his life. In my mind I see his mother crouched down next to him in his wheelchair, holding his dying hand. Their house is in the background, the street just ahead. Salmon-colored roses in the distance as they remain trapped in that moment on their walkway that led only to sadness.
In April of my last year of grade school, just days after my 11th birthday, my father was late to pick me up, as he often was.
“Sorry to keep you waiting—I was with your grandmother,” he said.
“Oh well, I guess that is a good excuse. This time. How is she?”
My father grasped the large steering wheel of our beige VW camper van and paused for a moment before pulling back out into traffic.
“I’m sorry to say that she died last night in her sleep.”
“Then I guess this won’t happen again.”
I share a dark sense of humor with my father. He smiled ever so slightly as we drove home for lunch. I put my hand on his whenever he reached for the gearshift, feeling it my duty to comfort him.
“You’re back early,” I said to the friends as they pulled their boat into harbor. Nobody spoke until a local official arrived, boarded the boat and left. Soon after, the government agents went on board. Other travelers, like myself, who were catching rides on sailboats around the South Pacific pieced together the story from rumors we overheard onboard.
Many young college-age men start a band. Some start a business. These Canadian friends saved their money, bought a sailboat and headed to Tahiti. They often went spear diving for fish, and a day or two prior, one had gone down and got the bends. When he didn’t return, another went after him, panicked and, ultimately, the two died. The remaining friends, and a girlfriend or two who’d followed them to the South Pacific, suddenly found themselves not only with two deceased friends, but also navigating the murky waters of their closest friends’ deaths in another country, at sea.
I felt sad for their loss and the mess they had to deal with, which only delayed their grieving that much more. I barely knew any of them, but I’d shared a few evenings with the group and also felt the permeating sadness. I don’t remember crying but I do recall losing any interest in diving from that day forward. Years later I went on a “try dive” and found it cathartic and decided that underwater was about as beautiful place to die as one could imagine. So peaceful.
A few days after I returned to the USA after two years of traveling abroad, I found out that my closest friend from my sophomore year of high school had died. I was, of course, sad to realize that I’d never see her again and even sadder to learn that she might have caused the car accident that killed her by turning into oncoming traffic. But I remember mostly being angry that nobody had told me even though she had died the previous year. The morning after I found out—I’d been at a club dancing with someone who, by chance, had also known her—I asked my mother if she’d heard the tragic news.
“Did you know that Kelly died? Apparently it was a car accident.”
“I did know. I went to her funeral,” she said.
“What? Why didn’t you tell me? We were inseparable in sophomore year!”
“Well, sweetie, I didn’t know how you’d take it. I didn’t want to upset you.”
“It would have been the same news then as it is now—she’s dead. The only difference is I wouldn’t have heard it from a stranger in a bar.”
That news did explain why she hadn’t written back to my last letters, for I was a voracious correspondent.
Another letter that I’d written to a young woman with whom I’d become friends—and had traveled with in Western Australia—was answered by her mother. I’d even been invited to stay at her parents’ home in Perth, and had gratefully accepted their generous hospitality, cherished respite after months of hostels and traveling by bus.
A month or so after I’d sent my letter, her mother wrote back to tell me that she had died. In scratchy handwriting she explained how her daughter, my friend, had been born with a hole in her heart and hadn’t been expected to live to see her teens. The fact that she’d made it into her 20s was nothing short of a miracle. She was determined to live fully and was forever giving her mother reasons to worry about her, but the mother was also so proud that her daughter hadn’t allowed herself to be defined or defeated by illness. Her mother thanked me for having helped create good memories for her daughter to enjoy in her last months.
By the time I was old enough to drink, I’d already lost at least a dozen friends and family members. All of these people, plus a few other kids in high school, my maternal grandfather, even my first cat that we’d only had for a year or two, were gone. Perhaps I am not a sentimental person. Perhaps I am simply a very practical person who knows that grieving the dead can equally include being glad to have known those beings and moving forward in life because they cannot. Perhaps because I’d begun dealing with death from an early age, it simply seemed normal.
“Did you hear that?” my roommate asked.
“What? The ambulance? Sure, why?”
“Yard sale next weekend!”
We’d smile, knowing our humor was off and could be misconstrued as mean, but that it was also realistic. Gay men in the Castro—the fabulous heart of gay life in San Francisco—were dying at alarming rates when I lived there in the mid-1980s. My upstairs neighbor died. Coworkers died. Friends died. It seemed simply that everyone died.
When I was told I too had HIV, this non-sentimentality seemed to kick up a notch. Because of my own life experiences, because of the compounding fact of knowing an inordinate number of people with HIV, because of my own diagnosis, death became the norm. Had my non-sentimentality not stayed intact, I’m not sure how I would have coped. When the number reached 50, I stopped counting the number of people I knew who’d died of AIDS. That was in 1993—early in my time becoming involved in the work of the epidemic.
Until I had any reason to believe that my body was becoming ill, I chose to ignore the virus inside and focused rather on what I could do to stop the epidemic in any way possible. Ironically, that effort became my defense mechanism, my way of staying one step ahead, my way of feeling my life could still have meaning. My non-sentimentality has helped me stay alive.
When death is stirred inside, it becomes absurd to fear it externally.