Learning to ride, falling down, getting back on
Subscribe and Save up to 45%
Anna Heath became infected with HIV in 1985, during her first year in college at the University of Texas at Austin. Before contracting the virus, she was thinking of quitting school and moving to Africa to “do hard physical work that was of obvious benefit to someone.” She writes: “I planned to join the Presiding Bishop’s Fund — a kind of Episcopal Peace Corps — so that my family would be more comfortable with the idea. Instead, my parents sent me to Life Training — a kind of Episcopal e.s.t. — to help me get over it.”
She got HIV from her Life Trainer the first night.
“I don’t know how he got it,” she says, “but I know I got it from him, because when I found out I was infected, he was already dead.”
Heath has had AIDS for five years. She now lives in San Francisco and has been on the board of directors of that city’s AIDS Foundation and Needle Exchange Program. Today she speaks publically as an advocate for better AIDS funding.
The secret ingredient in the cathedral’s communion bread is beer: twelve ounces of Miller, Budweiser, Olympia. Today I am using Anchor Steam left over from a fund-raiser. I am not supposed to drink. Some think even one beer can reduce your T -cell levels, and my count is already down to four per cubic millimeter of blood — less than half a percent of normal immune capability.
I heat the beer in a saucepan, stir in one and a half tablespoons of active dry yeast and a teaspoon of orange-blossom honey, and pour the solution into a Chinese rice bowl to cool. When tiny bubbles have risen and covered the surface with a thin yellow film, I mix in flour, oil, and salt.
On days when I’m too tired to attend service, I sneak the heavy loaf onto its silver plate in the sacristy early (so the priests don’t worry), then walk home and go to bed. When I’m stronger, I sit in the north transept, where I can see both sides of the altar.
Today, during the service, a wrinkled hand passes me the collection basket, and I am struck by a vivid memory: When I was four or five years old, my mother would give me a nickel to place in the offertory plate. I’d try to explain to her that God knew those nickels weren’t mine, but she’d only roll her eyes. One Sunday, I tapped the nickel on the brass plate and kept it, heart racing exquisitely. I planned to save it until the next Sunday, when, having been in my possession for a week, it would be mine to give to God. I held the warm nickel in my fist through standing and sitting and kneeling on dusty velvet and polished wood until the last amen.
As the congregation rose to leave, my tiny wrist was taken hard and I was pulled down the aisle full of smiling people out into the sun and slapped, the damp coin pried away. But I knew that God was not mad.
Now I drop a worn dollar into the basket and pass it, worrying that the bread won’t break right when the priest divides it before all those people. But it does, splitting down the middle without resistance. He sets it down and pulls it apart into fourths, then into eighths, for the other priests to take and distribute. I watch as, one by one, several hundred people take pieces of the loaf whose dough my sick hands kneaded, and put the pieces into their mouths, never knowing who made it, never having the chance to develop unfounded fears.
Periodically, concern arises about the chalice, and the priests have to explain that you can’t catch HIV from sharing the Cup of Salvation, or any utensil. And besides, they use very strong sherry.
The pain didn’t hit me until I got to the clinic, Building 8. Suddenly, I hardly had the strength to push open the broken automatic handicapped-access doors. I told the receptionist nothing was wrong, that I had a regular appointment and could wait in line, but he had called a nurse as soon as I’d gotten off the elevator. I was wheeled down the hall to a large, clean, sunlit room at the northwest corner of the building: the urgent-but-not-actually-dying room. (I knew there must have been an actually-dying room somewhere, and that it must have been larger than this one, but I didn’t know where it was.) I’d been here once before, when the pigeons had tried to kill me.
Very lonely, I’d become friendly with pigeons. They were everywhere: hanging out in sidewalk cafes while I read; waiting for me outside hospitals and doctors’ offices. I kept shiny yellow birdseed for them in a terra-cotta bowl on my fire escape, so they wouldn’t eat so much trash — although I’d heard pigeons had superior immunity.
Then I got cryptococcus.
“Where does it come from?” I asked the doctors, and they answered, “Just one of those things.”
I survived. Afterward, I looked it up in a book: “a fungus found predominantly in the excrement of pigeons.”
I tried to explain to the birds, “Men-in-gitis,” but they were unconcerned, and continued to wake me every morning, chortling on the windowsill, staring with their ubiquitous red-orange eyes.
A breeze was blowing in the ward’s open windows, and privacy curtains rippled around some of the twenty, mostly occupied, beds. Rustling stacks of paper were weighted down with spill-proof biohazard containers and flower vases. A dropped clipboard slapped the shiny floor, and a cassette deck played Mozart in mono.
Most of the patients were receiving infusions of one kind or another, into wrists, or into ports in clavicle or chest. The kid in the bed next to mine was asleep, a biohazard warning symbol tattooed on his tan neck beneath his baseball cap. I’d seen many people with that tattoo, or a+ for “positive.” It was easier than having to say it, reminded people who forgot, and kept you from pretending it wasn’t true.
The nurse stuck a thermometer in my mouth and tried to take my blood pressure, but I couldn’t stay still. I knew him from before, but he didn’t seem to recognize me.
“I really do have an appointment,” I told him, and I mentioned the famous doctor’s name.
“Just a minute,” the nurse said.
I would have rescheduled had I known this was going to happen. This would be my first — maybe my only — visit with the doctor, and I very much wanted to ask him everything.
“What’s wrong?” the famous doctor asked when he arrived.
“Nothing’s wrong.” I was on my hands and knees in the bed.
“You’re extremely pale. Give me your hand.”
I leaned back on my knees and extended my right hand. He squeezed my thumbnail and ordered a blood draw.
“Nothing’s wrong,” I repeated.
“Well, what’s going on, then?”
“I have cramps.”
“What do you mean ‘cramps’?”
“My period. Nothing’s wrong.”
The nurse, who still didn’t remember me, tourniquetted my left arm and told me to pump my fist. I had scarred little veins that weren’t well attached to the fascia; he used a butterfly needle to corner one while the famous doctor continued to ask questions. By the time I’d recited the long list of answers, I was too tired to ask any questions of my own. I wanted a tattoo of my medical history so I wouldn’t have to endure these interrogations.
“And your present status?” he said.
“Four T cells; nothing’s wrong.”
The patient in the next bed laughed behind his privacy curtain. The famous doctor cleared his throat and took a breath. “Well,” he said with a smile in his voice, “for someone with four T cells, one herpe is not a bad deal.”
I smiled and threw up into a tray beside my bed.
“. . . you hear me?”
My ears and veins and heart were screaming. I nodded.
“Good.” Christopher let out a long breath.
I could see bright lights, but they weren’t making any sense. I couldn’t get enough air.
“Girl, what happened? What drugs are you on?” he asked. “Never mind — complicated question. Well, I’m going to give you a Valium, and we’re going to my house, OK? Is that OK, to go to my house? It’s me, your friend, Christopher. I could take you somewhere else. Do you think you’d be comfortable at my house? It’s quiet. I think it would be best.” He let out his breath again. “Breathe,” he said, too loudly.
I shook violently.
“It’s OK,” he said. “OK . . . OK.”
“Oh, girl, you scared the shit out of me. What happened?”
My heart was fluttering so fast it felt as if it weren’t beating at all, just gliding smoothly over the storm. I didn’t know what to say.
“Do you remember anything?”
I shook my head, then said, “Dracula.”
“We were at the hotline’s Interview with a Vampire party, for volunteers. You with me?”
“What else? Anything else?”
I shook my head, then said, “Epee.”
“Epee was at the party. What about Epee?”
“He . . . he was . . . the Lion Queen.”
“Did that scare you?”
I laughed, breathing a little deeper.
“Just relax, breathe. I’ll quit asking questions. We’re home now.”
I had to concentrate to climb the stairs. His apartment had a warm, calm smell.
“Lie on the couch.”
I curled up, and he threw a wool blanket over me. I wanted to hide; I felt as if I had no skin.
He went to the kitchen and came back with a glass of water and a blue pill. “These were prescribed for my mother, who needs them, but she saves a few for me.”
I took a sip and discreetly slipped the pill into my jacket pocket, where it joined the Dapsone, Diflucon, D-4T, and Chinese herbs. Christopher sat down at the other end of the long couch, smoking a joint, one big hand cradling his smooth head. My eyes were streaming constant tears, but my breath caught only if I thought too much.
“Am I OK, normally?” I asked.
“What do you mean?”
“I mean, am I . . . off?”
“Oh!” he said. “You’re paranoid that you might be demented. But that’s normal. You’re not any more off than the rest of us.”
“I don’t think I am, but my friends who are don’t think they are, either.”
I scared Mary out of her skin; she had the TV up too loud to hear me come in the door.
She had just finished baking, and was flitting around Christopher’s sunny kitchen wiping surfaces, a white-haired moth full of adrenalin, tiny embroidered daisies and big chocolate smears on her pink oxford-cloth shirt.
I arrived at the right moment. She can’t talk while she’s baking. “It’s all timed to a gnat’s ass.” Thirty-six dozen brownies were cooling in pans on the fire escape. She likes to start at 6:30 A.M. and was mad that Christopher hadn’t let her come that morning until seven, and then had been slow to leave for work.
But she couldn’t stay mad. “He’s a saint,” she said. I said that she was one, too, and she said, “Fuck that shit. Ain’t no saints.”
She let me help her wrap. No one can help her bake, because of the precise timing, and because “all these goddamn new bakers are fucking up the market,” and because the recipe’s a secret; she’s saving it to sell to Betty Crocker, or the highest bidder (profit to go to research). She talked about FDR as she cut twelve big, even brownies from each glass dish and stacked them perfectly with wax paper between the layers.
Mary is vice-president of the Cannabis Buyers Club, for people with life-threatening illnesses. Dennis is president. She and Dennis are friends from years back, when she was “an old lady.” (She’s seventy now.) Dennis makes her go on talk shows, which are not her “cup of tea,” she said: “Those home-and-family bastards.”
“Well,” I said, “Dennis thinks it’s important. And maybe he doesn’t really like the publicity part either.”
She said, “Dennis? He loves that shit. He’s a saint.”
Mary delivers brownies every Thursday to her “kids” on Ward 86, the city AIDS ward. To decide who gets the rest, she draws names from her cookie jar. The ones who can pick up, do. For the homebound, she delivers.
Hassan was born in India, to Muslim and Buddhist parents. He grew up in Singapore, studied culinary arts in Switzerland, and started two highly acclaimed restaurants here in San Francisco. Framed restaurant reviews hung on the wall of his room at the hospice, next to his paintings of limes and of dark-skinned women grinding grain, and his copies of Frida Kahlo’s self-portraits.
When I met him, the day he moved in, he couldn’t use his hands anymore. He was quiet, his black eyes terrified. He wouldn’t eat, because food reminded him of what he could no longer do. So we started carrying him up to the attic kitchen overlooking the gardens, and propping him in a corner where he could instruct the cooks. He’d quietly direct them, down to the last detail — the positioning of the hands, the angle of the blade — while the monks laughed and gossiped in their long robes, like big, old women. He learned the tastes of every resident (those who could eat) and of some of the volunteers, and designed individualized dishes for each — until being carried upstairs became too painful.
He liked to be touched, liked knowing someone would touch him. He would cry to see my hands massaging his feet, although I don’t think he could feel them. His feet were huge and round, with no ankles; black skin crackled and flaked off, revealing more black underneath.
I brought my mother to meet him, and he cried to see us together. His parents didn’t know he was gay, or sick . . . or dead.
“You have something important to tell me?” my mother said.
She was cupping water in her hands and spilling it with unbearable sweetness, like a baptism, over the dying bonsai tree in the kitchen sink. I wanted to scream.
My brother had quietly orchestrated the whole thing, flying in from New Orleans and arranging for my mother and our stepfather to come. They were so happy to finally see where I lived. I’d been out of touch for years.
My brother hadn’t pushed or questioned me all weekend, until a few minutes ago, an hour before they were to leave. Taking me aside, he’d said, “Now. Tell them now.”
“I cannot do it,” I’d said. “I can’t.”
So he’d arranged that, too.
“You have something important to tell me?” my mother was saying.
I was sitting in my window seat in the warm, paned light, watching the water spill from my mother’s fingers onto the brown tree.
My mother kept cupping the water, tears now streaming down her cheeks and dropping on the tree.
“Charles,” she said, her voice steady but loud. My stepfather was in the other room. “Charles.”
He came in.
“She has something to tell you.”
“What is it, honey?” he asked, a smile on his face, as if expecting a joke.
I couldn’t find my voice.
“HIV,” my mother said.
“Oh —” his voice breaking — “honey. . . . ”
J.’s from Las Vegas. She was born on the East Coast, but was put in foster care after one of her parents — I don’t remember which — shot the other, and she ran away to spend most of her life in casino hotels.
When I met her two years ago, she was the only woman resident at her hospice in the Castro. She liked it there, and had her own big room, where she lit candles and painted the intricate molding around her fireplace with bright nail polish. But then she got kicked out, and now she’s with the old people in one long, open ward at Laguna Honda Hospital. She says she likes it there, too, that she was getting tired of nothing but AIDS all the time.
I haven’t been to see J. in months, and have to ask the nurse if she’s still around. “Oh, yeah, but she’s lonely,” the nurse says. Leading me through the ward, she asks if I’d please come for J.’s birthday next month.
J.’s husband-pimp, Turtle, used to be good about visiting. They had some kind of deal — stashed pain medication in return for company and occasional chocolate. I remember how she slept once with a paper sack of Hershey’s Kisses he’d brought, she missed him so much. They melted all over her in the night, and the morning nurse thought she’d had an accident.
But Turtle could be mean, chiding her for gaining weight during the six months when she could eat only ice cream. So in a way she was relieved when he went back to prison. She says he likes it better in there, anyway.
J. is diagnosed with, among other things, progressive multifocal leukoencephalopathy, which means her left side is completely paralyzed. After it happened, she told everyone that the diagnosis was bullshit — that she’d had an ordinary stroke. We all took this for wishful thinking, but the paralysis doesn’t seem to have progressed; she’s still around, and there’s no way to tell for sure without a brain biopsy, which isn’t about to happen.
On earlier visits, she’d remember “progressive multifocal leukoencephalopathy,” and she’d remember what my last T -cell counts had been. But she couldn’t remember certain names. A nurse named Leticia she called Leukemia, and a volunteer named Geoffra she called Ragu. She calls me, and most other people, honey.
Many of the old residents on the ward are sleeping, or at least lying still, in the small, well-kept, impersonal spaces allotted them. But J. is up and in her wheelchair, sitting with the smokers in a room at the end of the hall, watching the Olympics on a black-and-white TV and critiquing the coverage. The nails of her limp left hand are painted pink. The right ones, which she can’t paint, are stained tobacco yellow. She looks the same.
“Oh, hello, honey,” she says, and introduces me to everyone in the vicinity, whether or not they can hear or see or think or talk. Then she asks if I know about the new protease inhibitors and tells me to get on them ASAP. She was on them, and her T -cell count got so high she had to quit taking them for fear she’d get moved again.
I ask if there’s anything I can do for her.
Anything she needs from the outside?
Anything at all she’d like?
Long pause. “Yes.” She tells me her priest brings her department-store perfume samples in little vials, every week. But what she’d really like from me, for her forty-fourth birthday next month, is a big bottle of White Linen.
It’s always a bus. And always tomorrow.
It’s supposed to be consoling: “You know, I could get hit by a bus tomorrow.”
I don’t want to deny anyone’s legitimate acceptance of the possibility of death, but . . .
I tested positive on an island in the Pacific Ocean where there were no buses. Maybe there were a few, but I never saw them. There were airport shuttles. There were helicopters. There were undertows, sharks, scorpion fish, armed pot farmers, fierce wild pigs, and poisonous oleanders.
But even there: “You know, I could get hit by a bus tomorrow.”
There are plenty of fierce wild buses here in San Francisco, so at least it makes a little more sense. But in the two years I’ve lived here I have seen a lot of people die of AIDS, and haven’t yet met a single bus-accident victim — although there are apparently a lot of People Living With Potential Bus Accidents out there. Lest they think themselves unique, we HIV-positives can get hit by buses, too — between doctors’ appointments.
What am I supposed to say: “Thanks for the thought”? How should I console a Person Living With a Potential Bus Accident: “There, there, I could get hit by a progressive multifocal leukoencephalopathy tomorrow”?
One in twenty-five people in San Francisco is HIV-positive. That means the likelihood is high that some of them are bus drivers. What might they say to each other: “What are you doing tomorrow?” “Oh, I don’t know. Maybe I’ll run over an HIV-negative”?
What should I say? “Yes, thank you. I love you, too. Remember to look both ways.”
Four Japanese men and a very beautiful interpreter named Takako Lloyd arrived exactly on time.
Each man gave a quick, automatic bow and said his name, which Takako repeated, but I still didn’t catch.
Three of the men were dressed in Nikes and bluejeans, and turned around in slow circles, measuring angles of light in my studio, while the one man wearing a suit watched.
“Beautiful bed,” Takako said. “Antique?”
I shrugged. “My grandfather’s.”
The man in the suit said, “This is very Oriental,” indicating the room with a sweep of his hand.
I was glad he didn’t know Oriental wasn’t politically correct.
The other three men began rearranging my furniture.
“I sat over here for my last interview,” I said, trying to simplify things.
They nodded, laughing, and told me where to sit. Then they set up the lights, snipped a stray thread from the buttonhole of my sweater with their own small scissors, and wired me. My apartment felt cleaner with them in it.
Takako sat across from me on my pianoless piano bench. On the monitor, I saw a close-up of my eye, swollen in a way peculiar to Bactrim desensitization; the sunless tanning of my skin from Tetracycline; and a vague chemical cast to my whole image, the result of my drug cocktail: AZT, 3TC, and Crixivan — a brand of the new protease inhibitor Indinivir, the subject of this interview.
I asked Takako if they had come from Tokyo specifically for this story.
“Yes. Hasn’t been any coverage in Japan since World Conference. Then we hear protease inhibitors so hopeful. Now we come to hear protease inhibitors problems.”
I knew all about the problems: tolerance problems, absorption problems, protocol-regimen problems, resistant-strain problems, potential-long-term-toxicity problems, new prevention problems, insurance problems, funding problems, accessibility-to-those-who-need-it-most problems.
The interview took half an hour.
Afterward, Takako said San Francisco was a nice city. “Like Sydney. I lived in Sydney. You would like Sydney: so much big city so close so much nature.”
I said I’d like to go there, although at the moment I was completely happy where they’d sat me.
She said, “You would not like Tokyo: concrete jungle.”
I thought I would like Tokyo, because of her. I also realized how fortunate I was to live where I do. I stood and went to move my chair back, but six Nikes leapt to take it from me. They put everything back exactly where it had been.
The man in the suit bowed and gave me presents from his company, a small, wrapped box on each extended palm. I was ashamed; I hadn’t even offered them water.
They each bowed a quick goodbye. Takako hugged me sincerely and unsentimentally. Then they were out the door. Quiet.
The boxes were wrapped in company paper, a pattern of Japanese letters and the number ten. In the first was a heavy, burnished-silver pen with an understated gold “TV Asahi“ on one side, and a small pearl at the tip of the cap. I knew this was intended as a polite corporate gesture, but it felt like a real gift because of the way they’d given it to me.
In the other box was a leather-banded gold watch, its time set for where now is tomorrow morning.
An explosion outside on a hot, dark night. I go out onto a Spanish-tile balcony, bouganvillea creeping over the adobe, and see many shadowy people scurrying around, and shadowy bodies lying in the street below; one body lies unnoticed on the sidewalk. I run downstairs to see whether there is life left in that body, but by the time I get to the street it is standing, teetering on high heels, looking down at me, saying in a very deep voice, “I’m fine, really.” One dark-skinned cheek is ripped open and hanging off the jawbone, a half-skeletal smile, spilling blood down a flowered cotton dress.
“I know you are,” I say. “Let’s sit.”
We lower each other down to the curb, and the body falls heavily against me, head in my lap, dark blood pooling in my skirt. I watch people hurrying by on the street, back and forth, waiting and watching for ambulances it seems should already be here. The dark blood saturates my clothes and runs warm between my legs. I feel it in my stomach and heart and throat.
A man walks by, clean and strong, his blue eyes full of concern for my safety. “You shouldn’t be doing this,” he says, and I know he means the blood is dangerous.
“Same as mine,” I try to tell him, but no sound comes from my mouth.
When there is no life left in the body, I lay the head gently on the concrete and go back upstairs, not knowing what comes next.
Many years ago, I wrote my teacher a desperate, twenty-eight-page letter in pencil on unbleached, recycled paper. I thought I was about to die.
He wrote back, “Thank you for your penciled novel. I couldn’t read it all, but some of it was subtle. Maybe you could try writing short stories.”
Recently, I was afraid he might die. His friend’s answering-machine message mentioned a planned prayer circle, but I was so distraught I was afraid to be a part of it. Anyway, I had an important AIDS Service meeting scheduled for the same time. I decided I would go to the meeting, but carry prayer beads in my pocket.
A few minutes before I was to leave, I sat in front of my puja altar: a candle, some dried flowers, and a little statue of the Hindu deity Hanuman, which my teacher had given me. Earlier, I had burned an incense cone on top of the candle, and the resin had combined with the wax in such a way that now, when I lit the wick, the flame leapt up in a foot-tall spire.
I thought: This is beautiful; and also, This is a fire hazard. I took the flowers off the altar. Thanking Hanuman through the flame for my teacher, my friend, I blew out the candle — only it didn’t go out.
I remembered my teacher joking about not surviving the process of completing his forthcoming book. Not joking at all, I’d said, “Don’t go before I do.” He’d said, “I won’t leave you.” And I’d thought: You can’t say that. But I’d understood a little of what he meant, and now, watching this flame, I understood more.
I thanked Hanuman again, and again blew out the candle. And it didn’t go out. Again.
I thought: This is beautiful.
The entire pool of wax atop the candle was now on fire, and I was reluctant to pour water on it for fear the burning wax would run down and ignite the floor. So I took a deep breath, leaned down, and blew as hard as I could across the burning surface, and the flame became small and still, but still burned strong.