Stories of Pain

'I got here for Lawrence. He wanted me to thrive, not just survive ... I didn’t get here by forgetting. I came here by way of remembering, too.'
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Lawrence Buckley, 1957 -1995
Story & Recording by Chris Creegan

In July 1995, my partner of 10 years, Lawrence, left me. He’d been leaving for a while. First his body and then, in the last few months, his mind. Not a sudden parting, more an ebbing away. Like a lingering tide, occasionally he would threaten to come back. But the pull was unstoppable. He had to go.

Every year, I take a brief sojourn from the routine of life to relive his last weekend. A little melancholy, but comforting too, perhaps because I’ve been going for 23 years. Some years it approaches like a hazard warning light. Others it seems to catch me unawares. But it always comes. And I always go.

It can’t be said often enough that grief is not something you get over or move on from. The intensity doesn’t change, only the frequency. It can be random, sparked off by the mention of a book, a place or a piece of music. But there’s nothing random about this weekend. It comes round again. Right on time.

A friend in the throes of very new grief asked me recently how I got from Lawrence’s death to the joyousness of my marriage to Allan last year. Almost an exam question, that. Hard to answer, no matter how well you’ve revised. My stumbling response was that I got here for Lawrence. He wanted me to thrive, not just survive.

But as I came away, I thought of something else. I didn’t get here by forgetting. I came here by way of remembering, too.

'My grandmother was a woman beyond her years.'
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Carlota Vazquez de Gonzalez, 1890-1984
Story & Recording by Miguel Gonzalez

My grandmother, Carlota Vazquez de Gonzalez was born June 12, 1890. She was the youngest female of 12 siblings and was named after Queen Carlota of Mexico during the reign of Maximilian I.

She was a strong woman who faced adversity all her life. She was small in stature but commanded a room. She gave birth to her six children in her home with the help from my grandfather. She lost all of her children through illness and violence, including my grandfather. Only my father survived.

My grandmother was a woman beyond her years. She loved a cigarette and her daily ‘vitamin shot’ (whiskey) in the morning. She would tell me stories about the family, who we were and where we came from. She was very proud of her roots as I am but she was a realist and she knew that life was never easy. She was a woman of strong convictions and believed that faith/religion was personal and not to be shared with others.

My grandmother contracted AIDS through a blood transfusion during hip surgery. After her surgery, she became ill and we could never figure out why. Her doctors at the time would dismiss her illnesses due to her age. It was not until one visit that the nurse turned back her blanket that I noticed the Kaposi’s sarcoma lesions on her legs. I recognized them, because I had seen the exact same lesions on my friends fighting this horrible disease. My grandmother died on Thursday, July 5, 1984. I was 20 years old.

My grandmother was my strength and my protector. She knew about me before I knew what gay was. She told me that she knew I was never going to marry a woman. All she wanted was a child so that the family line would continue. I miss her more than life itself. The wound is still fresh for me. Maybe one day, I can stop crying for her.

'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.

'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

'This/MY generation of artists — and OUR audiences — disappeared. You are standing on our generational, grave like, culturally curtailed, and tribally intrinsic sinkhole.'
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Pride Tirade 2021
Story and Recording by John Kelly

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, gravelike, 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.

'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.

'Jaime was the only man I ever fell in love with. He was insanely beautiful, inside and out.'
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Jaime Jesus Jimenez, 1963-1995
Story & Recording by Guy Berube

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.

'The last time I saw [Jack] was at County Hospital when he was toward the end of his life.  It was a very sobering sight to see my good friend – who was so vibrant and funny and full of life – fading away.'
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Jack Foster
Story & Recording by Sandra Bernhard

I met Jack Foster in the summer of 1974, waiting in line to see The Rocky Horror Show up on Sunset at the Roxy Theatre.

He and his whole crew from the San Gabriel Valley were fun, irreverent, crazy and gay as you can be.  Jack and I hit it off and started hanging out all the time.  We’d go dancing at Studio One, and raise the roof off the joint.  He became a bartender and worked at clubs all over Los Angeles, so we could get in for free.

We went to see Tina Turner in 1980, when she struck out on her own after leaving Ike.  It was one of the most memorable concerts I have ever seen, and Jack and I bonded over that like nobody else possibly could.

When he first got sick in 1986, he said the doctor told him “Yeah, I can’t eat hotdogs or be anywhere near birdshit.”  He goes, “What does that mean?”

And we laughed about it.  He kept his spirits high all during his fight against HIV and AIDS.  We talked all the time; he’d moved back home and lived with his parents back in the San Gabriel Valley.

The last time I saw him was at County Hospital when he was toward the end of his life.  It was a very sobering sight to see my good friend – who was so vibrant and funny and full of life – fading away.  I’ll never forget that.

I miss Jack, and he left me a vinyl Tina Turner record that his parents gave to me after he left us.  I still have it, and I still miss him to this day.

'He tried to live his life as normally as he could. He even went out to Fire Island, but when his skinny, KS-purpled body entered the pool, everyone else got out. My heart broke again.'
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Lawrence Baker Wilkins, 1962 -1994
Story & Recording by Richard Phibbs

Lawrence Baker Wilkins, born November 10, 1962, died July 12, 1994

I have wanted to write this for years, but remembering brings back so much pain that it often seems unbearable. I must do this, though, for my beloved friends who endured so much physical and emotional suffering.  Baker Wilkins was my best pal from our 20s into our 30s. He became my brother. We were both new to New York, curious and excited to be away from our small hometowns.

I was terrified of HIV and its mystery. This was New York City in the early 90’s, and it was almost impossible not to equate sex and intimacy with a dark horrible death. Baker was not full of fear the way I was, and that worried me.

We met for lunch one day, and he revealed to me he had tested positive. We held each other and wept. To us, the diagnosis meant that within three to six months, he’d likely be gone. I was devastated, but held myself together for him and hoped. From there it went downhill.

A red spot showed up on his nose. I said, let’s go to the makeup counter and get a cover-up. The woman at the counter sold us a concealer and told Baker to stay out of the sun. She had no idea the spot was Kaposi’s Sarcoma. The cover-up worked for a week until the KS began to take over Baker’s body. He declined rapidly. My most handsome friend was now covered in KS lesions and had wasting syndrome.

He had to have a shunt put in his chest as his veins could no longer stand up to the IV medications. He went home to North Carolina to see his family, and the local massage therapist refused to touch him.
My heart broke for my beloved friend. His courage was remarkable and he wanted to live, so with the help of his longtime partner Rolf Iversen, we investigated everything.

Shark cartilage was said to have healing properties. We tried that. Urine therapy — drinking one’s own urine — was said to stimulate the immune system. He tried that. He tried to live his life as normally as he could. He even went out to Fire Island, but when his skinny, KS-purpled body entered the pool, everyone else got out. My heart broke again.

The next phase came when they had to amputate his foot because the KS had spread. In the hospital,
I held his hand as the excruciating “phantom pains” took over his body.

Baker died. My best friend and my brother was gone at 32. He was a remarkable man.

Selling art was his passion; collecting art was his dream. He was kind to everyone. He was so handsome that everyone wanted to talk to him, and he would spend time with each person that did.  Most of them were strangers and he would make them feel heard and important.

After Baker died, Rolf died too, then Bill, then John, then Jose, then 12 other friends. Then my boss, my dentist, and then my doctor. All dead.

I was overwhelmed with sadness, then guilt that I was still alive. Depression set in. I got myself to a therapist and onto an antidepressant. I knew that, as sad as I felt, the gift of life was mine. Seeing Baker fight so hard for his life was a reminder that I had to fight for mine.

Then came a medical miracle. If Baker could only have held on for six more months, he could have received antiretroviral treatment and still be with us. At the time I didn’t believe they would find something. I just couldn’t believe it.  I think about Baker everyday. I think about Rolf and all the rest. Sometimes I think I still have PTSD from all the losses.

Sometimes I still equate sex with death, though I remind myself this is a different time. I still weep when I walk by the new condominiums that have gone up where St. Vincent’s stood. I look up and remember those cinder block cells of rooms and the hallways packed with the gurneys of young men with skeletal bodies and KS lesions. I walk by the nearby New York City AIDS Memorial hoping to feel something. I don’t, except a sadness that the names one sees on other war monuments aren’t displayed here, the names of the lost.

Before I go to sleep and when I wake up, I see this photograph of Baker, and somehow this comforts me.

I love you, my dear brother. You fought hard and with such dignity. You were so kind and sweet to everyone. You were brave until the end.  I am so sorry the world was not kinder to you.

'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 ... He kept saying his boy was gone.'
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Bearing Witness to Transformation
Story & Recording by Ed Wolf

I met a young gay man on the AIDS Unit at San Francisco General hospital when I worked there in the 1980s. 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 “faggot” 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 People with AIDS in their community.

'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.”

'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.'
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Bryan Glen Henderson, 1959 – 1991
Story & Recording by Linda Henderson

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.

'She was dying of a terminal illness, already a year into her death march.'
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Christine Bessey, 1927-1994
Story & Recording by Diana Keough

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.

'In 2008, I came home from the hospital to die from complications of HIV/AIDS … I wasn’t expected to live past that week. Miraculously, I lived, my work apparently not completed.'
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A Life Shaped by HIV/AIDS
Story & Recording by Louis Buchhold

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.