Category Archives: HIV

The Fox Demon

Fox fires on New Year's Eve..., Andō Hiroshige, 1857

Fox fires on New Year’s Eve…, Andō Hiroshige, 1857

In the summer of 1986, eighteen months after my HIV diagnosis, my friend Susan said she wanted to drive to Seattle, following Highway 1 up the coast. “I don’t have anyone to go with,” she said, “but if I have to, I’ll go alone.” That was all the invitation I needed.

We spent the first night in Arcata, and the next day we drove up Route 1 until we found a beach that would be perfect for the next event on our itinerary. The parking lot was full, but the day was windy and breezy, and people were sticking close to their vehicles.

In a clear patch of dry sand on the far end of the beach, we settled down out of the wind and out of sight of the parking lot. Reaching into her pocket, Susan brought out a bag of gelatin capsules filled with white powder. “I find that one usually isn’t enough,” she said. “I start with one and a half. When I start to feel the drug wear off, I take the other half, just to stretch the trip out a bit.”

Ecstasy had just been outlawed that year, but it was still widely used by therapists. Though it was showing up more and more at parties, some people saw it as a tool for personal growth. Susan was one of those people.

I had never tried it, but I knew it was working when I realized I was free from anxiety. The wind no longer nagged at me. Sunburn wasn’t a problem, because I had made peace with the sun the way a firewalker makes peace with the coals. I wasn’t concerned that some tourist might guess what we were up to. And I stopped worrying about the gear in Susan’s car, which had a busted trunk.

What I remember most was a feeling of safety. It was the perfect afternoon on the perfect beach with the perfect companion, and there was nothing that needed to be done except to enjoy every moment.

When the drug wore off, the feeling of perfection ended. My body had metabolized the drug into toxins that raided my stores of essential vitamins and minerals. My mouth was dry, and I couldn’t stop flexing my jaw. I was tired, very tired. Susan settled me into the passenger seat, found a campground, fed me tuna-fish sandwiches, and cleaned up while I crawled into my sleeping bag. Within minutes I was dreaming. My Continental flight to La Guardia was landing at the TWA terminal at Newark.

That was the last good rest I had for days. I found it hard to sleep when the dreams came. The basic plot was always the same. I desperately needed to get somewhere—where, exactly, was never clear—and was constantly thwarted. The shuttle wouldn’t take me to my connecting flight; the southbound train headed north out of the station; the downtown local turned into an uptown express. I initially considered the dreams unimportant, but in hindsight the clues were there: the repetition, the vividness, the overwhelming sense of frustration that forced me awake, and the way the dreams refused to fade.

Our days were largely uneventful. In a small coastal town, a dog ran across the road in front of us. We barely missed it, and the incident shook us both. When we reached Seattle, we got lost. Numbered streets and numbered avenues wove in and out of one another.

On the first day of our return trip, we took a detour up into the mountains and found a campsite on the shore of a small lake. There my dreams began to change.

In one, I sat at table with a group of coworkers. On the table lay a birthday cake decorated with the face of a clown. We had been waiting for the boss to show up so that we could begin. “We have to wait,” said one coworker. “He’ll be really angry,” said another. Then I surprised myself by driving my hand into the middle of the clown’s face. My fist came away full of cake, and I shoved it into my mouth. A cheer went up around the table, and I woke up laughing. The elation was so electrifying that it took me nearly half an hour to fall asleep again.

The second dream began on the edge of a lake. There was to be a picnic, and our meal was cooking in a Franklin stove. “What’s inside?” I asked.

“A goose,” someone answered. “They’re cooking a goose.”

A small animal appeared at the water’s edge. It wasn’t quite like anything I had seen before. It might have been a fox or a weasel or a dog. Whatever it was, it went to the stove, pushed open the door with its snout, and dragged out the goose. I grabbed a gun from someone nearby and fired. The bullet made the fox explode into dozens of foxes, all of which turned on me and began to nip, shredding my pants and tearing skin from my ankles.

I jumped into a car and drove away along a dirt road. I knew I’d be all right if I could get to the highway. In the distance I could see the glow of a Waffle Shop sign, a sure indicator of a highway interchange, but I couldn’t find a way to cut over. I was lost again. Suddenly the original fox appeared in the middle of the road. I didn’t have time to stop and wasn’t sure that I wanted to. The car jolted as it struck the fox, and I heard bones break under the wheels. When I came to a stop, I turned to look back.

Until that point in my life, I had never noticed whether I dream in color. Some people do and some don’t. I do. The moonlit sky was purple. The trees that lined the road were a green so deep they were almost black. The fox glowed a reddish orange as it rested on its haunches in the middle of the yellow road, and the eyes that taunted me were a brilliant, piercing green. In front of the fox was a crumpled human shape; it wasn’t white so much as without color, like a shadow in a photographic negative. Beside this shape lay a cane. The only thing in the scene that didn’t have a color was the scream that echoed off the night sky.

A couple weeks later, when I told Susan about the dream, she asked, “So who did you run over? Who was in the road?”

I told her I was pretty sure it was my father.

She took a sip of beer before asking the one question that mattered right then. “Does your father use a cane?”

As I answered no, a shudder passed through me—dread combined with the same elation I felt when I smashed the birthday cake. I knew where I had to get to. That place that was so hard to find. That place the boss didn’t want me to see. The place that was too scary too visit before the ecstasy.

I knew who lay dead in the road. At that point in my life, my left knee was really bothering me. I was using a cane.

In that moment, I truly confronted my own death for the first time.

The following weeks were some of the best of my life. I woke up enthused about each new day. I exercised, ate healthy meals, and lost weight. I contacted old friends whose phone calls and letters had gone unanswered for far too long.

Susan wasn’t finished with me, though. In September she called to say that the Berkeley Art Museum was featuring a show of Francesco Clemente, and she wondered whether I would like to go. Clemente didn’t make much of an impression on me, so I wandered off and entered an exhibit called Japanese Ghosts and Demons: Art of the Supernatural.

I was drawn immediately to Fox Fire, a 19th century print by Andō Hiroshige. The work is a representation of fox demons, or kitsune, common figures in Japanese folklore. A wall plaque explained that the fox demon is a trickster figure, and one role of the trickster is to force us to understand and accept aspects of ourselves that we might otherwise deny.

In the foreground of the print was a tree, and under the tree glowed dozens of stylized animals, each identical to the ones in my dream.

(NOTE: This story was first performed May 13, 2013 at The Shout Storytelling in Oakland.)

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A Great Disturbance in the Force

NOTE: I first performed this piece on Feb. 6, 2013 at Fireside Storytelling in San Francisco. The theme was “Bad Medicine.”

One morning many years ago, I was standing over the sink, getting water for my coffee, and I was overcome by the sudden bout of sobbing—that shoulders-heaving, unable-to-fill-my-lungs, abdominal-muscles-cramping, random-guttural-sounds-escaping-from-my-throat kind of sobbing. As my tears splattered in the stainless steel sink, I tried to figure out where this was coming from. My wife and I had been having a hard time and work was stressful, but nothing I could think of explained this. I finally composed myself, set up the coffeemaker, and went out on the porch to get the newspaper.

A neighbor was walking by and said, “Have you heard?”

“Heard what?”

“Turn on the TV.”

And I did. Just in time to see the second plane strike the second tower.

This will sound fantastic to many of you, delusional, grandiose. This is the stuff of movies. How does it go? “I felt a great disturbance in the Force, as if millions of voices suddenly cried out in terror and were suddenly silenced. I fear something terrible has happened.”

Perhaps a few of you will take it at face value because you know from your own experience that one reality just isn’t enough. (You know who you are, don’t you?) For the rest of you, all I can ask is that you suspend disbelief and trust me when I say that these things are not uncommon in my world.

When I finally pulled myself away from the TV, I remembered the last time I had cried like that. It was May 8, 1996, the night I drove home from the Business Resource Center and Sertoma Bingo Hall in Chehalis, Washington. That was the night I understood the scope of another tragedy, one whose death toll was twice that of the World Trade Center attacks.

Those of you who have heard my stories know that I have hemophilia, a bleeding disorder, and I also have HIV. I contracted it from the medicine I stick in my arm. Like a diabetic injects insulin, I inject something called Factor VIII, and in those days my medicine was made from human blood.

The virus nearly wiped out the hemophiliacs of my generation. Only about five percent escaped infection, and those were probably exposed but were immune because of a genetic defect that occurs in about five percent of the population.

During the 1980s and early 1990s, I buried a lot of friends, some gay friends (I lived in the Castro at the time), a couple IV drug users, and a lot of friends with hemophilia. At the time, the “hemophilia holocaust” as it was called by people prone to hyperbole, was widely considered to have been unavoidable. People figured we needed our meds to survive, and it took the manufacturers time to figure out what was happening and to find a way to produce clean medicine. But then there were the crazies.

I went to the Business Resource Center and Sertoma Bingo Hall to see my friend Cory. We met when we shared a hospital room, and had a lot in common. We were both investigative journalists and shared similar political viewpoints. He was a news director at Pacifica Radio and I was a news editor at the San Francisco Bay Guardian. But Corey was one of the angry ones, the ones looking to assign blame. I was too Zen to get caught up in that, but Centralia was near my home and I wanted to say hi.

Corey was there to promote the work of a group he cofounded call the Committee of Ten Thousand. If you took the 7,000 or so infected hemophiliacs in the country and added in sexual partners and infant children, that’s the number you came up with. Unfortunately, to see Corey, I had to sit through the paranoia. I should have known better. Corey is a very good investigator and by the time I left I was a conspiracy theorist, too.

If you want the full details, you can read Randy Shilts book “And the Band Played On.” The last time I saw Randy, he looked at me and said, “You’ve put on a lot of weight.” I forgave him because he did a great job explaining what happened and it was true, I had put on a few pounds. The people with AIDS were so thin. It felt protective.

Here’s the thumbnail version: During the sixties, the drug companies refused to adopt technology that would kill viruses in our medicines. We all got hepatitis C in the seventies. The companies wanted blood from people exposed to hepatitis B to make the gamma globulin serum given to travelers, so they collected blood from skid rows, prisons, border towns, and neighborhoods like Christopher Street and the Castro. They weren’t supposed to use the hepatitis-infected blood to make our medicine. But they did. They would mix something like 20,000 pints together in a huge vat, pretty much guaranteeing that each batch was contaminated. When they found out HIV and Hep C are transmitted the same way, they didn’t act. When the CDC reported the extent of hemophiliac infections, they got their tame watchdog, the FDA, to tell the CDC it was full of it. And when they couldn’t deny that their medicine was tainted and finally figured out how to purify it, they sold the remaining contaminated doses overseas.

Each individual decision could be rationalized, but start stringing them together and the most generous thing you could say is that it was an extreme example of cognitive dissonance—people who wanted to make money were able to convince themselves that their choices were defensible. But when I looked at the entire pattern of events, I could only reach one conclusion: The drug companies were willing to watch people die as long as they made their money.

Interstate 5 north of Chehalis is pretty much a straight shot and the northbound lanes were empty at ten o’clock that night. Looking back, I am grateful for both those things, because instead of steering, I was pounding both fists on the top of the wheel. Fortunately, I was also blessed with dry weather. I could barely see the road through an outpouring of tears—rain would have made things that much worse. At one point, driving seventy miles an hour, I lowered my head against the steering wheel for several seconds, closed my eyes, and sobbed. I should have pulled over, or at least slowed down, but in that moment that I didn’t really care whether I died.

At one point, I rolled down the window to let the cold air dry my tears and yelled to the empty highway. “They tried to kill me. The fucking bastards tried to kill me. They did kill me; I’m just not dead yet. They murdered me for money. They decided that my life didn’t matter. They decided I didn’t matter. Fucking assholes. Fucking, fucking, FUCKING assholes.”  I was still crying when I walked through my front door forty minutes later.

Over the next few years, I collected stories. About the people infected needlessly well after the insiders knew what was happening. About the daughter that school officials didn’t want in class. About the sick and disabled man who came to San Francisco to protest outside the law firm that was defending the manufacturers against a class action lawsuit. The lead attorney had once said the best strategy was to “wait us out.” The man tried to talk to the lead attorney as he was heading toward his car, and the attorney turned and snarled, “Get a job.” Eventually, I had to conclude this wasn’t about cognitive dissonance, it was about greed. It was about immorality.

I don’t know exactly what happened to me on the morning of September 11. Perhaps I was aware of 3,000 lives being extinguished, or maybe I was just picking up on the vibes of my anguished neighbors. But perhaps what set me off was an allergic reaction to the evilness of it all.

I can’t speak for Obi-Wan Kenobi, but is it possible the disturbance in the Force wasn’t about the extinguishing of souls but about the full exercise of unmitigated evil? Isn’t that what Darth Vader represents in the early Star Wars episodes, and what the Sith lords represent throughout?

When I was crying, driving blind, on my way home from Chehalis, I had already buried my friends. I had already mourned my own death. That wasn’t the source of my pain. What set me off wasn’t grief, it was the sure and certain knowledge that here, now, on this very planet, the Sith lords walk among us..

Passing on Curves

NOTE: I first performed this piece at Fireside Storytelling in San Francisco in December 2012.

When I am in the woods for more than a day or two, everything slows down. I stop talking, I enter a trancelike state. My friends once made the mistake of letting me drive home like that. I was on a narrow, winding highway, a cliff face on one side and a steep drop on the other, making good time despite heavy truck traffic, when my girlfriend looked over and said, placidly, “I trust you. I know you know what’s around the bend. But some of us might be more comfortable if you didn’t pass on curves.”

This is a story about passing on curves.

When I was born, my life expectancy was twelve. I almost died on my second day. As a child with hemophilia, I was told constantly about what I couldn’t do. I learned to ignore limitations. I learned to trust my instincts. Curves, road signs, trucks, double yellow lines…mean nothing to me.

So when I was diagnosed with HIV in 1985, I just kept driving. I went to graduate school, launched a new career, got married … and I had a child.

My daughter was conceived in the back seat of a car. Unfortunately, I was in the front seat at the time. While I watched for passersby, my wife, Karen, performed highly unerotic acts involving a syringe and a Gerber’s baby food jar containing donated sperm.

Karen was convinced she was carrying a boy, so we had not decided on a girl’s name, though we had considered naming the kid after Karen’s grandmother. When my daughter was born blue with her umbilical cord wrapped twice around her neck, when the midwife looked up from between my wife’s legs and said, “she’s floppy,” I used the only girl’s name I had, the grandmother’s name, to call my daughter back into this world, and since she answered, she became, irrevocably, Manya.

We had a plan, my wife and I. I would hold on until Manya was in kindergarten, making it easier for Karen to work and not have to cover huge daycare costs. And then I would die. It was a good plan.

Obviously, though, I knew nothing about parenting. A few weeks after the birth, I was sitting in a friend’s kitchen, staring out the window, when it hit me—it’s not about me anymore. The foundations of my life were suddenly swept away, and yet I found myself more firmly planted on the ground.

Manya had a hard time falling asleep. She had too many questions. She was maybe two when she called me into her room during naptime. Standing up in her crib, she pointed toward the window. “What dat?” she demanded. “The window?” “No, what dat?” “The curtains?’’ “No, what dat?” I look out the window. “The tree?” “Not dat,” she says, pointing at the window, “and not dat,” pointing now at the crib. “What dat?” pointing somewhere in between. And then I got it. She wanted to know about negative space. “That,” I said, smiling at her, “is air.”

Next she wanted to know, “Daddy, who were the first mommy and daddy’s mommy and daddy.” Think about it.

When she was three, she asked, “Daddy, why are we here?” None of my answers fully satisfied her, but I told her what she was experiencing was called existential angst. Now, she could name her anxiety. “Daddy, I have existential angst.”

The more I understood what it meant to be a father, the more I understand my hubris. This kid loved me in a way I had never been loved before, and that was mind-blowing enough, but she also needed me, trusted me. She wanted to shake the world like a snow globe so she could watch all that knowledge fall down from the sky and settle at her feet. And she counted on me to be there, to be both her sidekick and her superhero. But I was going to leave her. For the first time in my life, it seemed, I hadn’t known what was around the bend.

She called me in one night to ask, “Daddy, is Elmo a good monster or a bad monster?” Finally, a question I could answer. “Elmo is a good monster.” I turned to leave. “Daddy, will you keep me safe from the bad monsters?” I turned back and said, “Of course I will.” How could I say anything else? But it was a lie. The monster was already in the house…I had brought it in.

The lie hit me so hard that I began to have regrets about my choice to parent. But those regrets caused a great deal of dissonance. How could I regret the decision that produced my wonderful child?

In 1996, I was giving talks about AIDS to high school classes. In one, a girl asked, “How will you tell your daughter? I am wondering because my father died when I was five.” I didn’t know the answer. So I asked if she had any advice. “Pictures,” she said achingly. “Take lots of pictures.”

I came home after one such talk and read in the paper about success treating HIV with a new drug, Crixivan, the first protease inhibitor. I put my head down on the table and sobbed. “I might live. I might live. I might live.”

I began to believe I could get away with it one more time, this passing on curves. But I hadn’t yet spotted the other truck, the one coming from Karen’s direction.

It first manifested as a scattering of spots on a mammogram. Microcalcifications. Ductal carcinoma in situ. We decided on aggressive treatment. After the mastectomy, the pathology report contained good news. No signs of malignancy, clean margins. Less than two years later, though, a lump appeared under Karen’s arm. Breast cancer survival rates are associated with the number of positive nodes, and in those days they considered more than ten a dire sign. After three months of chemo, Karen had surgery to remove her nodes. She had more than 50 positive nodes.

I asked a doctor friend what she would say if discussing Karen’s case privately with another doctor. She consulted colleagues and then got back to me: two years to recurrence, another two to death. At the same time, information was coming out about the HIV virus developing resistance to the new drugs.

Suddenly, Manya had two parents with fatal illnesses. All three of us were in the same car, rushing headlong into an oncoming truck. How could I have been so arrogant? Surely it had been only a matter of time before passing on curves would catch up with me. And that day was nearly here. I couldn’t imagine a world without Manya, and yet I felt like I had been cruel to bring her into such a situation.

But all I could do was drive Karen to radiation treatments and Manya to birthday parties and soccer games, and try to impart, psychically, energetically, what I know about passing on curves. Maybe they could succeed where I had failed.

At this point, I have to confess something — I am still alive. A couple months ago, I drove down to visit Manya at college. She told me all she was up to. She is the founder and president of a new campus organization that raises money for Third World poverty relief projects. Then there are her regular academic classes, evening Swahili classes, ballet, voice, and yoga. And she had just revised her resume to try to get a summer internship in Africa. I worried about her overdoing it, but so far, she seemed to be holding it together.

Two days later, she texted her mom and me (we are no longer together; and yes, her mom survived, too) to say she had accepted a part in a school play. Her mother couldn’t answer. Her overbooked, overwhelmed daughter was taking on yet one more thing. But I just texted back, “Congratulations.” You see, my daughter, like her father, and in some ways her cancer-survivor mother, doesn’t pay enough attention to limitations. She passes on curves.

All I can do is warn her to slow down and point out the hazard signs. And if she drives over the cliff, I will be there to pick her up, clean her off and put her back on the road. Because that is what a parent does.

Passing on curves is part of who she is. After all, she thrived in a family where both parents expected to die before she left for college. Which begs the question: Which of us was behind the wheel?

And who am I to judge when it comes to passing on curves? I have come to terms with it in myself. It is what I do. It is what I have always done. It is who I am..