Stories of Pain

My name is Louis Buchhold, and I live in West Hollywood, California. My entire adult life has been shaped by HIV and the AIDS crisis. It has done things to me and for me I would have never chosen had I not been gay and HIV positive.

The early talk about a mysterious gay disease didn’t scare me. I was young and horny and full of wanderlust. I was one of those beautiful young men you may have encountered on Santa Monica Boulevard, a runaway from the Midwest, in a life resembling a John Rechy novel.

Before my young adulthood bloomed, I took a wild ride through a world that soon came apart around us. The generation of free love I grew up in had turned to free death. I watched everyone in my life fall to the disease and die.

I was a lucky one. I only had minor and treatable opportunistic infections.

I became an art director at Liberation Publications and oversaw the national bi-weekly magazine, The Advocate.  It was a hot time for everyone trying to get the latest information about AIDS, what the government was doing or not doing about the epidemic, about support services, about hate crimes, and details on organizations like ACT UP and how they were making the world aware of what was happening to us.

I vividly recall the growing AIDS quilt photos and stories I laid out – probably the only information small-town gays saw. I felt I had an important function to our community at that time, and it pushed me forward.

At a point the terror on the streets was deafening, and things became so grim. Funerals and wakes were turned into parties set up by the deceased only weeks or days before their death, and strictly intended to be fun memories of and for our friends and lovers. It was too much to think about the corroded decimated shells the disease left behind.

One good friend, Wade, had been a clown, a very sensitive and happy man who believed in the power of laughter and loved nothing more than to make people smile, volunteering his time all over LA. He was a son of fame, born in LA privilege – the privileged family who threw him out, disowned him and left him to the streets, where he was eaten from the inside out by Candida, an opportunistic infection. It was a ghastly way to go. He went through it without family, in County Hospital, only loved by us AIDS outcasts. It was better for his high-profile parents if he died forgotten.

A week after Wade’s ugly demise, all his friends met at his memorial margarita party he arranged. I was loaded. I was so loaded in those days just to make it through. It took a lot to hold back my fear and hatred and agony from all the loss and death. I stood in front of Wade’s photo with my margarita, surrounded by his adoring friends, my friends. I fell apart at the seams, crashed onto my knees and couldn’t catch my breath.

How could such a thing happen to such a beautiful man? How could the world allow, or even sanction, the death of my entire generation of gay men?

All my friends were dead or dying. My youth was stolen. I couldn’t hold onto it. I saw my future: like so many of my kind, I would meet my end alone on the street.

Someone lifted me up and took me home, and the daily drinking continued without a pause. The world hurt too much. Eventually I received my diagnosis and death date, summer of 1997. And like others before me, I tried to drink myself away before the unthinkable happened. Unfortunately, I appear to have pickled myself instead – and wasn’t able to die. I only preserved eternal pain and woke up one day laying in the street in Cathedral City at 40.

Similar to Wade’s memorial, a man pulled me up and drove me to AA. It is there I re-started my life, having mostly no fond memories of my youth. But my health struggle didn’t stop with cleaning up. In 2008, I came home from the hospital to die from complications of HIV/AIDS. I didn’t want to die alone trapped in a hospital bed. I wasn’t expected to live past that week. Miraculously, I lived, my work apparently not completed.

I’m 22 years sober today and over 17 years undetectable on medication. I’m a psychologist in Counseling Psychology, and a licensed Marriage and Family Therapist. I work in rehabilitative counseling and recovery.

It all happened in Toulouse, France between August 1986 and September 1989. Eric Jussiaux (1964-1989) was 22 years old … six years older than me. Eric would become my first love story.

I noticed Eric in a cafe-bar one day after class. We looked at each other in such a way I knew something was going on. And when I was on my way back home, I will always remember I could feel he was behind me. I turned back, and I saw him. We were both too shy so it was only the day after, at the same bar, that we started talking.

Eric was visiting a friend; he was from Paris. We fell in love. He decided to stay in Toulouse.

I knew from the start Eric was HIV positive. Nothing seemed to matter more than to be near him. I never found anyone else with the same energy, sense of humour and creativity. Eric was making everything magical, whatever he was doing: a drawing, a poem or even making coffee, with always a sense of craziness.

Eric was an artist. He could draw, he could paint, he could sing, but what he decided to do was to open a café just opposite my college. That was his masterpiece!

I left college and I went to work with him. The place became the refuge of all the outcasts and weirdos. It was our nest where others were welcome. He was making everyone laugh, me first. He was a true artist, in the sense your life was not the same after meeting him.

AIDS took him in one week. I feel so lucky Eric didn’t have to go through all the torture and agony. One week is long enough.

The Berlin Wall falls, and I am 20 years old.  These two events left me in a sort of total indifference.

Eric left. It was like being paralyzed and still today, I can’t get over it. It was so painful, I didn’t attend his funeral. I couldn’t even tell friends or relatives what happened.

And then, I took the courage to ask Eric’s dad for some pictures, as his face started to fade away in my mind. I couldn’t bear it. I only kept a book note of his poems and a love letter.

I still feel he’s behind me, but I never wanted to turn back again.

In memory of Bryan Glen Henderson (September 7, 1959 – July 17, 1991).

There is a deep longing
Residing in my belly
Rising up in the hours of darkness
Tears swelling, seeking out
Arms of safety
To be held
In the love once known

The death of a brother is like no other death. It is a unique event that can only be likened to an ending of the world.

This year will mark 27 years since losing my brother to AIDS. The memory of this day is just as vivid and present as it was 27 years ago when I witnessed that final breath of life. A final breath that provided relief for a body ravaged with the symptoms of a disease that knew no boundaries. It stole life and dignity both in what it did to the physical body and its ability to tear at the heart of the human condition.

Its reputation as the gay disease portrayed by the Grim Reaper sowed fear into the social imaginary. The suffering inflicted by this disease was not enough: society felt it their right to judge and condemn those inflicted as having their just punishment for their sinful ways. The discrimination and judgement was harsh. My brother knew this all too well. I bore witness to the hatred he endured. But he was bigger than those who judged displaying love and kindness in return. This was my brother — a beautiful man — a beautiful soul.

Forever I will feel your absence in my life.
Forever I long to be held one last time in your arms. Forever I treasure your memory.
Forever a love for a brother that has me engaged in the melancholic work of mourning for a brother that is never done, can never be done, never finished.

It wasn’t your usual family gathering. My mom had summoned all six of her children home, so she could go from room to room, assigning us her possessions. She was dying of a terminal illness, already a year into her death march. One down, three to go, it turned out.

She told one of my brothers, “I think this will look nice in your front hall,” her hand resting on a chest of drawers.

And so it went, on and on. A macabre ritual demanded by our well-organized matriarch, able to square off against Death in the realm of the mundane, but unable to face the broken and stressed out relationships looking right back at her.

“And I don’t want any fighting about any of this after I’m gone,” she said. This was my mom at her finest: in control of both her possessions and our fragile feelings. We were her obedient children once more, as well as contestants in her game show of random kindness.

I didn’t want her stuff, but then again, I did. For that was the yardstick of her love. She gave to her favorites, her favorite things, with no extra charge for her tangled web of strings attached. I was a little girl, again, and I hated it. I just wanted to hear her say how she loved me. But a family heirloom would have to suffice because it was the only love she knew how to give. When all of her earthly possessions were dispensed, she told us there was one more thing.

“I want you all to know,” she began slowly. “That when I feel the end of my life is near, and while I’m still able, I’m going to take my own life.”

She sat looking at us, with her hands folded tightly and placed demurely off to the side of her lap. Her spine was rigid and straight against the back of the chair. Her chin was raised high, her legs crossed at the ankles.

“My mother knew about two affairs but thought they were with women.  In spite of that, she stayed with him as long as she did because she was a “good Christian woman,” and was afraid of what other people would think. “It takes a lifetime to build a reputation and a second to destroy,” she often told us.  Fear killed them both.

One of my favorite memories of my dad — and I have many — is making Christmas cookies.  I have so many great memories of my mom but we had a difficult relationship.  Before she died, we healed a lot of our relationship and I was able to forgive her.

My dad always said he thought my mom looked like Grace Kelly and, I have to admit, I sort of agree with him.  She was beautiful, stylish and really smart.  In a different time, I think she would’ve been a successful entrepreneur.

My dad passed away in July, 1990, in an AIDS hospice in Cincinnati with me and three of my siblings by his side.

My mom passed away in a Catholic hospice in Milwaukee, her door plastered with bright red warning signs about her disease, with me and my oldest sister holding her hands.

They were both only 67 with a lot more life to live.  They never had a chance to watch me grow into the woman I’ve become.  My four sons never had a chance to get to know them or spend time with them, which is a damn shame. Their deaths — the deaths of anyone from AIDS is such a waster and so damn senseless.”

The physical pain she had feared so much, was controlled with medication and never came close to the emotional agony she twisted in prior to her terminal diagnosis.

“Life is such a precious gift from God,” she told me. “Don’t waste your life or any of the time that God gives to you. Promise me that, okay?”

We battled for so long, both of us feeling completely justified, and so full of pride and self-righteousness. The deadline of her death launched her on a soul trip and in taking me along, we were able to call a truce, leaving me to mourn what could have been, not the torment of what was.

I wonder if we would have been able to let go of our anger without the crescendo of her ticking body clock. All I know is what I saw: In the hospice, as she lay gasping for breath, holding my hand, looking right into my eyes, she asked, “This is the sickest I’ve been isn’t it?” I held her hand and thanked her for being the best mom she knew how to be. I thanked her for so many long talks and hugs and for not killing herself. She smiled and squeezed my hand back with all her might as she struggled to say, “I would’ve missed out on so much.”

Me too, mom. Me too.

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.

Hi, I’m Cindy Crawford. Before the word “supermodel” was coined, there was Gia Carangi.

From her first major modeling job with Versace, she was catapulted to the covers of Cosmopolitan and Vogue magazines, and became a favorite model of many of the world’s best-known fashion photographers, including Helmut Newton, Francesco Scavullo and Arthur Elgort.  Arthur first saw photos of Gia in 1978, when she worked behind the counter at her father’s restaurant, Little Hoagie, in Philadelphia.

Gia brought a new dark, edgy, moody look — and an “I don’t give a damn” attitude to American fashion modeling that had been dominated by smiling, blonde, blue-eyed beauties.  She was a rebel who unabashedly posed nude when most American models shied away from nudity. She was also a troubled young woman who had been sexually abused at five years old and whose mother abandoned her, her father and siblings for another man.

She was a lesbian who wore black motorcycle jackets, no makeup, and vintage men’s clothing in an era when being homosexual was an act of defiance; a heroin addict who used drugs to deal with her loneliness as a famous young model in New York City with few friends.

The drugs made it harder and harder for her to work. She fell asleep or walked out on jobs. But she was in such high demand that those hiring her would look the other way or enable her behavior rather than helping her or forcing her to deal with her drug addiction.

As former girlfriend Elyssa Stewart told the UK newspaper The Independent: “The problem was that people were more interested in hiding the marks than helping her.”

In 1984, she entered rehab for six months at the insistence of her family, but was soon back on heroin, and by 1985, she was in the hospital with pneumonia. She was sleeping on the streets, she was bruised, had been raped, and was reportedly doing sex work.

She died in November 1986, the first famous woman to die of AIDS and a warning that AIDS was not just a disease that took the lives of gay men.  Her death brought attention to the risk of needle-sharing and the benefits of needle-exchange programs and AIDS education rather than demonizing drug users.

Even as troubled as she was, her exit from the fashion industry left a gaping hole and people longed for her dark-haired, brown-eyed beauty.  So much so, that when I first came to New York as a young model, my agent sent me out to some of those same photographers, saying they had “baby Gia.”  I will forever be grateful to her for opening so many doors for me.

Francesco Scavullo, the photographer who adored Gia even as he hid the sores and track marks on Gia’s arm in a photo shoot late in her life, explained her allure: “Gia is my darling – old, young, decadent, innocent, volatile, vulnerable, and more tough-spirited than she looks. She is all nuance and suggestion, like a series of images by Bertolucci.”

“I never think of her as a model, though she’s one of the best,” he said.  “She doesn’t give you the Hot Look, the Cool Look, the Cute Look.  She strikes sparks, not poses. She’s like photographing a stream of consciousness.”

Rest in peace, Gia.

I met a young gay man on the AIDS Unit at San Francisco General Hospital when I worked there in the ’80s.

He had just been diagnosed with Kaposi’s sarcoma lesions in his lungs and was told he had a short time to live. The medical team contacted his parents, who lived far away, and they came immediately.

During a five-minute meeting with the doctor, they found out their son was dying and also that he was gay. When I met the father, he told me it was harder for him to find out his son was a “fag” than to hear that he would be dead soon.

It took almost three weeks for their son to die.  Every day, his parents watched as the nurses — primarily lesbians and gay men, some with AIDS themselves — continued to care for him, clean him and lessen his pain as much as possible.

I was there the morning he died.

When the father stepped out of the room and saw me, he hugged me and cried and cried and cried. He was as tall as me, and his grief was so vast. I remember thinking we were both going to fall down.

He kept saying his boy was gone.

The next day, the parents returned to say good-bye. They thanked everyone for their love and care of their son. The mom took me aside and said she was going to miss me.  She said, smiling, that she and her husband had talked and wished they could adopt me and bring me home with them.

I kept in touch with them for a while.  They started a support group for Parents of Children with AIDS in their community.

Happy as I limp my wrist in pride for us — the outcast, the maligned, the persecuted, the entrapped, the murdered, the sweated, the followed, the avoided, the violated, the blackmailed, the serial-tattooed, the sneered, the ostracized, the erased, the hated, the invisible, the raped, the tolerated, the patronized, the parodied, the joke, the denigrated, the evicted, the diminished, the emasculated, the de-promed, the expelled, the therapized, the shock-treated, the lobotomized, the numbed and the drugged, the lost, the dead, the erased, the removed from tangible history, the persistent dwellers in blessed proximity, the survivors, the warriors, the steadfast, the persistent, the inclusive, the non-ageist, the color blind, the expansive, the essential, the imaginative, the true, the warriors, the activists both stewing and shout spewing, the long term survivors demanding to be honored, the generational glue that is gold, the striving and striding toward our place in the sun that demands to be respected, and the imperative that we acknowledge that the AIDS pandemic ruptured our inter-generational dialogue, and our personal, systemic, collective and more generally cadenced growth. 

This/MY generation of artists — and OUR audiences — disappeared.

YOU are standing on our generational, grave–like, culturally curtailed, and tribally intrinsic sinkhole. You may be afloat and faring ok on the gravitas of a vast family of ghosts and heart shattering loss, of dead young unresolved spirits.  Advance, as we had done, in your own way and manner, and as you continue to grow and transform the world, please aim to bless the ground on which you re-trace our analog step.

WE walk the very same path.

Jaime Jesus Jimenez (May 18, 1963 – October 27, 1995). That’s us in 1990, Jaime in front, in Little Rickie’s photo-booth, madly in love.

I had just ‘landed’ in New York in 1989 — illegally — and got a gig as bouncer and bar back at The Bar, an infamous queer hangout in the East Village where some scenes of “Cruising” where shot with Al Pacino. I met Jaime on my first shift. It was instant, our connection.

Jamie was the first to make a move on me. That fuckin smile did it.

“Hey Babe, when do you get off work?” he says.

“Wait in line, Buttercup,” I replied.

That ride lasted five crazy years. Jaime was the only man I ever fell in love with. He was insanely beautiful, inside and out. The stories are endless but one that I cannot erase is bathing Jamie at his weakest in the last stages of his illness. That very moment, looking at each other, knowing this was it. I felt something shift in my chest. It was my heart literally aching.

Fuck I miss him.