Excerpted from Lions and Tigers and AIDS! Oh, My!.
Excerpted from Lions and Tigers and AIDS! Oh, My!.
Excerpted from Lions and Tigers and AIDS! Oh, My!.
Excerpted from the Lions and Tigers and AIDS! Oh, My!.
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.)
Karen had a pile of things to take to take with her, and Manya had her usual items—a sweater, a lunch bag, a small backpack—but it was the week our family was responsible for providing afternoon snacks for Manya’s second-grade class, so we had two plastic shopping bags that had to go to school. One contained four boxes of chocolate-chip granola bars; the other, fourteen recently halved bananas.
Karen, still exhausted, said she needed help getting everything to the car, and Manya began to load up. She poked her arms through the two straps of the backpack and positioned it, then she settled the strap of her lunch bag over her head and across her shoulder. As I reached for one of the shopping bags, Manya said, “No.”
Before Karen’s diagnosis, we would have considered ourselves lucky if Manya had carried her own stuff to the car, but now she had a strong need to help. “I want to do it all,” she said, and I let her.
As Manya struggled down the front walk, I thought, “Such a heavy burden for a child so young.” And I didn’t mean her various bags.
Later that day, I received an e-mail from my friend Hilary. She was asking how I was doing. “Mostly I’m OK,” I wrote back, “but this morning is particularly hard. I just want to cry and eat cinnamon rolls.”
“I always felt like I could just check out if the HIV or hepatitis got bad,” I told Hilary. “Now I don’t have that option, even if Karen recovers. The threat of a recurrence is always there, so I have to fight. I’m tired, Hilary. Life sucks, and I’m tired of having to rise to the occasion. I don’t want Manya to have to learn to be tough like I have done, but I know her, and that’s what she’ll do if it comes down to it. Sometimes I think I should fall apart just so she knows she has options.”
Hilary replied quickly. “If there ever was a time to fall apart, this would be it. Try it, you have friends nearby. Perhaps our children need to see the edifice of adulthood crumble. I wish I was there to give you a hug and feed you cinnamon rolls.”
She went on to ask, “What would breaking down look like for you?”
The truth is, I had no idea. I have never bounced a check, much less suffered a nervous collapse. In my twenties, my sense of responsibility troubled me so much that I once spent an entire morning teaching myself how to burn toast.
Manya had already shouldered the burden of character, and I was afraid that she was destined for a lifetime of trying to pull other people’s toast out of the fire.
I recognized this because I, too, have character. I say that humbly. It’s not something I’m proud of. It is just something that comes with growing up with a chronic health condition and not wanting to be a burden. I have come to see character as a weakness as well as a strength.
A few months later, Manya came home from school in a cranky mood. Normally a pleasant, compliant child, she was surly. She complained about everything, like the food I served for dinner. She threw a fit when I told her it was bedtime. In the morning, she was slow to get ready. And at one point she said she didn’t want to go to school. This from a child who always loved school.
Finally, I sat her down at the dining room table. “This kind of behavior is not like you,” I said, keeping my voice low so Karen wouldn’t hear us. “Can you tell me what is really going on?”
Manya looked at me for a moment, looked in the direction of the den where her mother was recuperating from the latest round of chemo, and then went into the kitchen to get a pen. When she came back, she started writing something on the corner of the newspaper. She kept her hand cupped around the pen so I couldn’t see what she was writing. Then she tore off the corner and handed it to me.
It read, “I want to die!”
I can’t tell you exactly what happened after that, because I can’t remember. I think I was in a state of shock. I do know that we both cried quietly. We talked a little in whispers. I tried to console her. And eventually we agreed she would go to school. I think just getting it out there made her feel better.
From what she told me, and what I was later able to get from talking to the teachers and other parents, I was able to piece together what had happened. The day before, the school had learned that the mother of one of the students had committed suicide, and the teachers had decided that this was an opportunity to talk to the kids about grief. In Manya’s class, kids had shared their stories about death. One of the kids had talked about two pet mice that had died of cancer, and this had prompted another student to talk about her grandfather. The school had known about Manya’s situation at home, but the teachers hadn’t made the connection. They hadn’t thought to call us and let us know what had taken place.
I took that torn-off corner of the newspaper and had it laminated the same day, and then I stuck it in my wallet. Every day at work for the next few months, at least once a day, I would close the door to my office, take the paper out of my wallet and stare at it. And I would cry for five or ten minutes at a time. It was a reminder to never take what Manya was going through for granted just because she seemed to be holding up on the outside. But after the first few weeks, I realized that my ritual was about more than just Manya. It was also about me. It was a chance for me to grieve over my own situation, to acknowledge that there were days I wanted to die.
Hilary was right: Sometimes it is a gift to our children to let them see the edifice of adulthood crumble. But Manya allowed me to see the edifice of childhood crumble. That was her gift to me.
NOTE: “Burning toast” was first performed on April 26, 2013 at Word Up! Santa Cruz.
One evening, Diane showed up unexpectedly at the door of the farmhouse. She was crying and panicky. The night before, her mastiff had suddenly started bleeding from his rectum and died. She found a note that read, “We got your dog. Tonight we’re coming back for the other one.”
“They must have fed him ground glass,” said Diane. She was certain that whoever killed Moses planned to do something similar to Jason, the wolfhound puppy. She told us she had been living with a member of the Hells Angels Motorcycle Club and had left her “old man” without his blessing. Knowing a little about Dianne’s past, I wondered if there was more to the story, but clearly Diane had pissed off some badass biker and was afraid for herself as well as for Jason.
We sat around the table—my mother, Mike, Diane and I—and discussed options. One possibility was for someone to go home with Diane and stay up all night to keep watch—and to fight off the Hells Angels if they showed up.
I volunteered, even though I was only sixteen, was about five foot three, weighed at most 115 pounds, and had never been up all night. Nor, for that matter, had I ever been in a gunfight or serious fight of any kind. Plus, I had been born with a genetic defect that means I don’t take particularly well to gunshot wounds. I have hemophilia, a bleeding disorder, and I had gotten to that point in my life only by ignoring limitations. I had always insisted I could do anything, no matter what anyone else might say. When my parents told me I couldn’t have a bike without training wheels, for example, I borrowed a teenage neighbor’s six-speed and taught myself to ride even though I couldn’t reach the seat.
So while Mike, Diane, and my mother continued talking (on the surface at least, they appeared to giving the option of sending me serious consideration) I went into the master bedroom, unlocked the gun cabinet, and started arming myself. As a novice, I had no idea what kind of weapons I would need. Would I be shooting to warn, to wound, or to kill? Would the fighting be close in, or would I need a weapon with range? Would there be one biker or many? Since I had no answers, I prepared for any possibility.
I strapped on two shoulder holsters. Under the left arm, I shoved Mike’s untraceable Colt .45, and under the right a nine-millimeter Browning. I also belted a tiny .25 caliber automatic to one leg. I chose an over-under as my main gun. The top barrel fired a .22 longshot rifle round and the bottom fired a .410 shotgun shell. My hope was that I would not need anything too lethal. Still, I thought, I might require something more, just in case things got nasty. Just in case I needed to kill someone.
I was trying to decide between the Winchester Model 12 shotgun and the Weatherby big game rifle when my mother came in.
“We have decided to send Huxley instead,” she said, referring to one of Mike’s dogs, an English mastiff that weighed more than two hundred pounds. “He is trained to never take food from strangers.” She also pointed out that I had a math test the next day. “You need to study,” she said, as if this was the deciding factor.
I started unloading the weapons and stripping off the shoulder holsters. I was relieved and disappointed. If I had gone off to fight the Hells Angels, I might have gotten out of my test.
I told this story to someone once who responded, “It is a story about something that didn’t happen.” And to an extent that’s true. I didn’t end up in a gun battle. But it is also a story about something that did happen. It is one of those “what the hell were the parents thinking?” stories, but it is also a story about a sixteen-year-old thinking it was appropriate to arm for battle like that.
To understand why, I have to tell another story, one about my time in the basement.
In the summer before sixth grade, my family moved into a house with a partially finished basement. I spent a lot of time those days with swollen ankles, kind of like very bad sprains, but for me they seemed to happen spontaneously. When the pain got so bad I couldn’t sleep, I would spend my nights down there watching television. We didn’t have 24/7 television in those days, and when the last station went off the air, usually around midnight, there would be a brief image of a waiving flag and the playing of the national anthem, and then nothing but a cross-like test pattern, and a steady tone. Staring at that pattern and listening to that tone for hours on end, I would swear to god, any god, that I would believe, I would pray, I would serve, if only he—or she—would take the pain away. It never worked; I never did find religion.
Many nights, I didn’t fall asleep until sunrise. I asked myself a lot of questions during those long vigils. By this time, I had stopped asking, pointlessly, “Why me?” Instead, I played out scenarios in my head. In one, I was in a life raft with several other people, but the raft would not stay afloat with all of us in and there wasn’t enough food and water to go around. Someone would have to go overboard into the frigid sea where the sharks were circling. I asked myself if I could be the one to jump, whether I would have the strength. Yes, is the answer that came back to me over and over. Yes.
I asked other, similar questions. For example, could I jump off a cliff if it would save lives? The answer was always yes. Meanwhile, my family slept soundly upstairs because I had taken it on myself to jump into the basement, where sharks shredded my ankles and I refused to cry out because I might wake them, adding to their burden.
Amid all these questions about sharks and cliffs, there was one question I never asked: Are these the kinds of questions a ten-year-old should be dealing with? But they were exactly the questions a boy might ask if he was ashamed and needed to justify being here.
You see, I didn’t feel I deserved to stay in the life boat, not unless there was room for everyone else. After all, I was defective. I had been born broken. How could I supplant someone who had a full life to look forward to, someone whole and normal? The best possible resolution to my situation, it seemed, would be to die a noble death. I didn’t think about suicide, that would have seemed cowardly and pointless, but I did think about making the ultimate sacrifice. It would offer redemption, wash away my shame, validate my existence.
These scenarios, these questions, were my own kind of test pattern, my own calibration.
That night when Dianne came over to tell us Moses was dead and asked for our help, I had been briefly offered the possibility of actually living out the kind of scenario I obsessed over all those nights in the basement—the possibility of dying in a hail of bullets to protect a woman and her puppy.
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?”
“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..