Stories of Pain

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 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.

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.

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 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.

After graduating from college, I moved to Atlanta, Georgia for my first real job and I began volunteering for AIDS Atlanta.

This is a picture of myself, with seven of the best friends I ever had, taken in September of 1990. We were trained in an outreach project that gave talks about HIV/AIDS and safe sex.

We spoke at churches — if they would have us.  We spoke to schools, civic organizations, local groups — any group that would let us in the door. We came up with a whole routine that had both humor and a very serious aspect to it.

I share this very scared picture of mine, my friends, my “Band of Brothers.”  We were having a cook-out that night and waiting on all of our other friends to arrive when someone snapped this pic. It’s old, it’s not in great shape — but it means the world to me.

We were listening to Roxy Music that night, and the songs “Avalon” and “More Than This” can still take me back to every detail of that evening.

I have “ghosted” my friends’ images so that those who are too young to remember the early days of AIDS epidemic can maybe understand, just a bit, what it’s like to be the last one left.

In this picture are two high school teachers, one attorney, one in law school, one hairdresser, one college student and one carpenter. They each have their own, unique story. By 1997, all had succumbed to AIDS, including my best friend, Phil, and I was the last one left. The only one alive.

I left Georgia after this, taking a position in south Florida. I found that you can change your surroundings, but you still carry the hurt, the loss, and the grief wherever you go.

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.

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.

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.