Stories of Despair

'I felt like I was in a horrible car accident where the car rolls over and over and all you hear is the sound of metal against metal, then silence .... Physically, you have survived, not even a scratch, but the world as you see it is no longer the same.'
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Tested
Story & Recording by River Huston

 

I’m River Huston and this is my HIV story, which I call “Tested.” 

Claude taught people how to sing. He was charming and sweet. We started to hang out. We did not have sex. But we did make out a lot. 

One day he asked me if I would be willing to go with him to take an HIV test. It was in a flirty way, like if we take this step together, we would be making some kind of weird commitment. 

I didn’t know anything about HIV, but I couldn’t possibly have it. At the time, I’d been clean and sober five years. I could run eight miles without any effort. I did yoga every day and ate brown rice. I knew what AIDS looked like from the guys in the Village. I saw the emaciated men, covered in sores, walking with canes and toting oxygen tanks. I knew people from Narcotics Anonymous who had had AIDS, but it was a secret thing. No one talked about it. I had never heard of a woman who had AIDS.

I said yes. It was May 1990. We went to the Department of Health and had our blood drawn. We joked and were relaxed. They told us to come back for our test results in ten days. 

I sent up a few prayers to cover my bases. I had struggled with God most my life. I had grown up agnostic. I made up a God that I called Harry when I was a child. He was useful for when I was in trouble. I decided there was no God when I started using drugs at 12. It was simpler that way.

Later, in recovery programs, they talked about a higher power. I never understood it. It was silly to believe with such abandon in what seemed to be a fairy tale. But I needed something to hold onto. I made a decision to just have faith. I didn’t believe in anything specific, but I had faith there was something.

The 10 days preceding our test results were filled with a simple prayer, “Please do not let this test be positive.” I hummed it silently like a mantra.  And as Claude and I headed up to Harlem on the A train to the Department of Health, I hummed, “Please do not let this test be positive.” 

We were excited and nervous. I was ready to go further with Claude than with anyone else I had met. He seemed real. He was not an addict, had a loving family. He was normal. I was almost normal, or I could appear normal. I worked, I went to college, tried to learn social skills, participate in society.

I had spent most my life living on the edges of civilization, not exactly legal, but not hurting anyone. I grew weed in the ’70s in Humboldt County, I lived in a van, played music in the streets. I roamed the country, selling my body along the way since I was 15. I made the leap into the world of conformity when I got sober at 25. I often felt like an interloper in the so-called real world.

We took our seats in the clinic. The testing had been anonymous. I fingered the piece of paper with my number on it as if it was a winning lottery ticket. We were the only ones in the waiting room. 

They called his number first. I waved, “Bye, honey.” Then it was my turn, and I followed the doctor into a small room. 

She smiled at me, but looked tense, almost scared. I sat down. She was sitting across from me staring at the folder. Finally, she looked at me and said, “Your test came back positive.”

I couldn’t quite grasp this.

“Is this good?”  Knowing it wasn’t.

She said “no” and explained to me that I was HIV-positive.

Then my denial kicked in. My voice trembled when I said, “They make mistakes, right? We should take another test. I’m sure this is mistake.”

She explained they had done both the Western Blot and the Eliza test. “You have this virus in your bloodstream.”

I felt like I was in a horrible car accident where the car rolls over and over and all you hear is the sound of metal against metal, then silence. And somehow, you get out of the car.  Physically, you have survived, not even a scratch, but the world as you see it is no longer the same. I couldn’t hear a word she was saying. I stared out the window at broken glass that littered the asphalt beneath an empty swing set. 

“Why did you ever think it would get better?  You don’t deserve anything.  You’re a piece of shit, and you’ll always be a piece of shit. Damaged goods, garbage, a pariah.”

These thoughts paraded along with, “You will never have children, you’re going to die alone, diseased and untouchable. I fucking hate you, you stupid piece of shit.” 

The doctor broke through my barrage of self-loathing when she said, “Listen, according to everything you told me in the last visit, you have a good few years left.” 

I started to cry. I cried the way you do when you can’t stop. After a few minutes, I looked up. She handed me a box of tissue with a sad face. I felt dizzy and sick. The walls seemed to close in on me. I couldn’t stand to be in that room another second. 

I pulled on my sunglasses and I walked out without another word. Walked right past Claude. I couldn’t even look at him, I felt so ashamed and dirty. I headed for the door, went down the stairs to the street, and started to run. 

I cut through the kids on the sidewalk that were getting out of school and the moms with their baby carriages. I just wanted to get to the train. I wanted to go home, I wanted to hide under the covers. I wanted to forget this day ever happened. I finally reached the train as it pulled into the station. I got on and the doors slid shut. I stared straight ahead, shaking, numb, nauseous. I felt someone slide next to me. I turned my head, and it was Claude. 

He had this look on his face. The fucking look I would come to dread for the next 30 years, the look of pity. He was out of breath from running.

He leaned over and said, “River, it’s going to be okay.” 

I wanted to scream. “It’s not okay, and it will never be okay, and okay is over.”

But I didn’t say anything. I stared straight ahead. The train stopped and went, and stopped and went. The wall I started to build around me was impenetrable. Claude lapsed into silence. We exited together at Union Square. We climbed the stairs to the street.

With a weak smile, he said, “If you need anything …”

He gave me a quick, awkward hug. He went his way, and I went mine. End of my relationship with Claude, beginning of my relationship with HIV. 

At 61, HIV has been the only constant in my life. I’ve done amazing things, wrote books, painted paintings, traveled the world, did a one-woman show. I also spent many years sick, in beds, in hospitals, poked and prodded, alone, depressed, in enormous physical and psychological pain.

I tried so hard to not define myself by HIV, even if the world continues to define me as diseased. I have walked this journey alone with as much kindness and love I can muster for myself. But mostly I’m just waiting to die.

'When my friend Bob had only a few months left, my nephew Tommy was born. I remember one day, we drove out to the East Bay so Bob could cradle Tommy in his arms.'
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New Arrivals
Story & Recording by Ed Wolf

A friend says, this is the year that won’t stop taking and I feel it too, a deep sadness. When I worked on the AIDS Ward at San Francisco General Hospital in the mid-1980s, I had a constant heaviness in the center of my chest.  It was always there and difficult to know what to do, what to say, where to go.

Sometimes, when patients were feeling it too, we’d go upstairs to Labor and Delivery. We’d stand outside the nursery window and watch the new arrivals.

Years later, when AIDS finally came into my house and my friend Bob had only a few months left, my nephew Tommy was born. I remember one day, we drove out to the East Bay so Bob could cradle Tommy in his arms.

On the way home, Bob wept so deeply.

“What is it? I asked.

“I wanted to hold someone,” he said, “who has just come from where I am going.”

'Does it really matter what disease you contracted or what you died of OR how pure your heart is and how deep you loved? They deserve respect and honor and I give them that till we meet again my angels. Love Big and Love Deep.'
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An Entire Family, Gone
Story & Recording by Cynthia Piña

My mother, father, sister, brother and uncle all succumbed to complications from HIV/AIDS.  My entire immediate family, gone!  By the age of eight, I said goodbye to my mother and then my father and so on.  But I’m here!  I’m here to say they matter, they were wonderful beings.  They will ALWAYS be remembered for who they were, NOT by what they died from.

They had names: my gorgeous music aficionado mother, Innocencia Caban, “Tita”; my artistic and strikingly handsome father, Amilcar Piña, “Al”; my beam of light baby sister, Cristina Marie Piña; my nautical ultra charismatic brother, Juan Pablo Barroso, “Pipo”; and my fun loving uncle, Angel Piña.

We all have a unique story and they do as well, and I wish I could share them with you – but for now just know this … they all left this earth way too soon and left a hole forever in my heart.

Does it really matter what disease you contracted or what you died of?  Or does it matter how pure your heart is and how deep you loved?  They deserve respect and honor and I give them that ’til we meet again, my angels. Love Big and Love Deep.

By Cynthia Piña

'The mom sat down next to him and they began to talk. After a few hours, she left but she returned the next day and the day after that.'
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Life & Death in the AIDS Ward
Story & Recording by Ed Wolf

When I worked on the AIDS ward at San Francisco General Hospital in the mid-1980s, I remember a patient whose mother arrived too late.  She was traveling by bus — she was afraid of planes — but he died before she could get to San Francisco.

We put a sign on his door, “See Nurse Before Entering!” When she arrived, a doctor took her into the room and sat with her and the body; we could hear her cries.

Afterwards, she walked down to the visitor’s lounge. Ricky, homeless and only 18, was on the couch watching television. He was the youngest patient with AIDS I’d ever met.

The mom sat down next to him and they began to talk. After a few hours, she left — but she returned the next day and the day after that. By the end of the week, funds had been raised for two airline tickets. Ricky had assured her that flying was safe and she was taking him home.