Stories of Caregiving

In the late 1980s and early 90s, I volunteered with an organization that placed volunteers in hospitals and group homes to work with children with HIV/AIDS.

I met Aaron when he was 9 months old and cared for him until he died at the age of 18 months. This photograph was taken on his first and only birthday.

The women who were full-time caregivers at the home used to call me Aaron’s father because of our bond. Both his parents had already died. The women used to say he seemed jealous if he saw me holding another child.

Aaron was very sick. His lungs filled constantly with mucus. I was often asked to gently pat him on the back while he was given medication through a nebulizer. I could tell how much stress it caused his tiny body. Seeing him suffer was not easy.

When I spoke, Aaron would put his little hand against my jaw as if he was feeling the words as they formed in my mouth. On his first birthday, I brought him some presents and we had a little party on the ward. He was healthier than he had ever been before. He didn’t need to remain attached to tubes. I was told I could take him up to the rooftop garden.

I walked Aaron around the garden, holding him like I am in this photo. Just him and I, alone outside under a beautiful blue sky. An airplane flew overhead and he looked up. I told him about airplanes. I showed him flowers, rubbed them against his cheek so he could feel them. I just kept talking to him. He held my jaw as I spoke the entire time, feeling the words as they formed.

When Aaron died months later, the women at the home told me that was the only day of his life that he went outside other than for trips to the hospital.

Aaron was moved to a hospital for his last few days and placed in an oxygen tent. I went every day after work. While I was not present when he died late one night, I leaned in under the tent whenever I was there and never stopped talking to him.

Aaron was one of the reasons that I joined ACT UP. His memory fueled my activism. We lost so much in this epidemic. So much suffering. So much death of those far too young to die.

It wasn’t easy keeping my composure when I interviewed for my first job for an AIDS agency in 1987. Sitting across from me was Daniel P. Warner, the founder of the first AIDS organization in Los Angeles, LA Shanti. Daniel was achingly beautiful. He had brown eyes as big as serving platters and muscles that fought the confines of the safe sex t-shirt he was wearing.

I’m Mark S. King, a longtime HIV survivor.

At 26 years old, with my red hair and freckles that had not yet faded, I wasn’t used to having conversations with the kind of gorgeous man you might spy across a gay bar and wonder plaintively what it might be like to have him as a friend. But Daniel did his best to put me at ease. He hired me as his assistant on the spot, and then spent the next few years teaching me the true meaning of community service.

As time went on, Shanti grew enormously but Daniel’s health faltered. He eventually made the decision to move to San Francisco to retire, but we all knew what that really meant. I was resigned to never see him again.

In 1993, Shanti hosted our biggest, most star-studded fundraiser we had ever produced. It was a tribute to the recently departed entertainer Peter Allen, lost to AIDS, and the magnitude of celebrities who came to perform or pay their respects was like nothing I have ever seen. By that time, I had become our director of public relations, and it was my job to corral the stars into the media room for interviews.

Celebrities like Lily Tomlin, Barry Manilow, Lypsinka, Ann-Margret, Bruce Vilanch, and AIDS icon Michael Callen were making their way through the gauntlet of cameras to the crowded media room. And then one of my volunteers approached me with a look of shock and excitement on his face. He pulled me from the doorway.

“I didn’t know he was going to be here,” he said with wide eyes. “I mean –“

“Who?” I asked. Oh my God. Tom Hanks? Richard Gere?

“He’s with Miss America, Mark,” he said. “They’re right behind me.”

We both turned as the couple rounded the corner of the hallway. They entered the light of the media room and I barely kept a gasp from escaping.

Beautiful Leanza Cornett, who had been crowned Miss America, in part, by being the first winner to have HIV prevention as her platform, had a very small man at her side. His head bore the inflated effects of chemotherapy, which had apparently done little to stem the lesions that were horribly visible across his face, his neck, his hands. His eyes were swollen nearly shut. In defiance of all this, his lips were parted in a pearly, shining smile that matched the one worn by his gorgeous escort.

I stepped into the media room, wanting to collect myself, to wipe the look of pity off my face. I swallowed hard and stepped into the doorway to announce them to the press.

“Ladies and gentlemen,” I said. “Miss America 1993 Leanza Cornett, escorted by Mr. Daniel Warner, co-founder of the Los Angeles Shanti Foundation.”

The couple walked into the bright light and several flashes went off at once. And then the condition of Miss America’s companion dawned on the camera crews. A few flashes continued, slowly, like a strobe light, and across the room a few of the photographers lifted their eyes from their equipment to be sure their lenses had not deceived them.

Daniel looked to me with a graceful smile, and it became a full, sunny grin as he looked to the beauty queen beside him and put his arm around her. She pulled him closer to her. Their faces sparkled and beamed – glorious, joyful, defiant – in the blazing light of the room.

That man, I thought to myself, that brave, incredible man is the biggest star I have ever seen.

And then the pace of the flashes began to grow as the photographers realized they were witnessing something profound. The couple walked the path through the room and toward the other door.

“Just one more, Mr. Warner?” one suddenly called out.

“Miss America! Just another?”

The room became a cacophony of fluttering lenses and calls to look this way and that, all of it powered by two incandescent smiles.

Daniel and Leanza held tight to each other, their delight lifted another notch as they basked in their final call. Every moment of grace, every example of bravery and resilience I have known from people living with HIV, can be summed up in that glorious instant of joy and empowerment.

“Boss,” I said to him as they exited the room, “I didn’t know you would be here. It’s just… so great.”

He winked at me.

“I’ll be around,” he said. “I brought my whole family with me tonight. I need to get to the party and show off my new girlfriend!”

The three of us laughed, and then I watched Daniel and Miss America, arm in arm, disappear down the hall and into the reception.

Only months later, I received a phone call.

“Mark, this is Daniel,” said a weakened voice. “Monday is my birthday, and I thought that might be a good day to leave.”

Daniel had always been fiercely supportive of the right of the terminally ill to die with dignity and on their own terms. We shared some of our favorite memories of our days at Shanti, and I was able to thank him for his faith in me and setting into motion a lifetime of work devoted to those of us living with HIV.

Daniel P. Warner, as promised, died on his birthday on Monday, June 14, 1993. He was 38 years old.

* * * * *

This story is an edited version of the essay “The Night Miss America Met the Biggest Star in the World,” which Mark S. King published in March 2015 on his website, My Fabulous Disease.  Photo credit: Leanza Cornett and Daniel Warner by Karen Ocamb.

Richard Lawrence Reed (February 28, 1956 – November 11, 1995) was a beautiful soul, a kind man and my first partner. We met serendipitously. It was August 1984 and I was supposed to be meeting a co-worker, but the plans fell through and I decided to go to another local bar.

As my favorite song of the moment — “My Heartʼs Divided” by Shannon — started playing, I boldly walked up to a man near the dance floor and asked him if he would dance. He agreed, and we became inseparable from that moment on for over 11 years.

I had just turned 19 and was smitten with this lovely man 9 years my senior. Iʼd never had anyone look at me the way Rick did. His blue eyes pierced my very soul. He was gentle, caring, selfless, humorous and had a way of making me feel as if I were floating on a cloud. He loved life, friends, family, the beach, plants, animals and the experiences that went with them all.

Like most relationships ours evolved and deepened after the initial stages of attraction, sex and lust. We become true lovers and friends and began to build a life for ourselves. Neither of us were rich or highly educated, but we were employed and did alright.

Rick always made me feel adored, loved and supported. He never let me down. We had fun learning each others’ idiosyncrasies, going out dancing, and nesting together.

Within a short period of time, Rick started saying he didnʼt feel quite right. It was never anything serious, a cold or a flu, and he would recuperate quickly. At the same time, we were just beginning to hear about the new mysterious “gay illness,” and he decided he wanted to get tested. We tested together sometime in mid-1985. Rick tested positive and I tested negative.

Our relationship was still in its infancy and there seemed no way it could be true, but it was. Rick learned what information was available and soon had a specialist doctor, the only one in the area.

There was never any question in my mind about leaving the man I loved because of a test result or its ramifications. At that moment, Rick was healthy and we were happy. Love doesnʼt end based on a test result.

For a while Rick’s health was fine and he was simply monitored. We proceeded with life as normal, with the exception of keeping his status a secret. Times were different then; there was so much misunderstanding, stigma and ignorance.

Slowly, Rick’s health deteriorated but not in the usual manner associated with AIDS. He never contracted pneumonia or sarcoma. It began with thrush and a gradual decline in his T-cell counts.

There was only one medication available — AZT — and Rick was put on it. Its side effects only made him feel worse. He began to have back problems, neuropathy and a general weakness. As his health got progressively worse, he was forced to stop working and go on disability.

Rick also decided to tell his parents about his status and illness. He was close to them and things were becoming more evident. I told no one, not my family, co-workers, supervisors or friends.

Gradually, due to the stigma surrounding the disease and our own fear, we withdrew from friends we knew would never understand or accept it. Outside of a few close friends, we were isolated but we made our life as pleasant and normal as we could.

Any benefits from AZT quickly stopped and Rick’s viral load kept increasing. We lived in a populated area of South Florida, and as the crisis was finally being acknowledged and funded, opportunities were presented for him to be a test subject for trial medications. I donʼt remember any of their names, but there were many. Rick tried whatever was available over the years, suffering their side effects and reaping little benefit.

Rick deteriorated both physically and mentally. It was gradual, painful and unstoppable. We did as much as we could together, whether it was household things or taking short trips to Disney, historical places, the mountains or visiting family.

In early 1995 on what was to be our last trip together, Rick became rapidly disoriented and argumentative. There had been signs of dementia prior to this, but this was a sudden onslaught. I cut the vacation short and headed home.

Rick was hospitalized upon our return and given what treatments were available. They helped very little. He had exhausted every available HIV medication and nothing could stop the degeneration of his body and mind. His spirit was depleted and he was tired of fighting. We returned home and hospice took over.

It was time to tell my employer about our situation, as I would be requesting time off and juggling caregiving with work. They were very supportive, and between that support and the help of hospice, our last month or so together was a little easier.

We remained deeply in love over the years through this ordeal and that love never wavered, not once — not even as Rick lay dying in a hospital bed in our guest room. He gave up on living, but never on us.
In fact, I think his love for me somehow gave him the courage to face death.

I had no encouraging words and no way to save Rick.  All I could do was love him, touch him, and make him comfortable. At this stage, when someone you love is dying before your eyes, there are no words that can properly convey the experience.

Rick died in my arms around 5:00 a.m. on November 11, 1995.

Later, I would find notes Rick wrote to me when he knew the dementia was taking hold and he might not be able to say what he wanted to say. He made a scrapbook of memories of us filled with love notes, cards, an odd memento or just a written account of special moments of our life and love. He left me a book of writings, drawings, stories and poems he had worked on over the years.

Rick was not a famous actor or designer, but he was a loving example of all those whose lives were taken too soon. He made an impact and touched many lives, none more so than mine. He was my world. Although my world was forever changed and my heart ripped apart, the most important thing he left me was a feeling of love, never-ending love.

Rick was special and one of the most giving and loving men I have ever known. All these years later, I still I keep that love safe in a place in my heart for when we someday meet again.

With so many tributes to loved ones who fell victim to HIV and AIDS, I want to pay tribute to one man who has devoted his life to caring for those with HIV and AIDS.  This one person has made such a positive impact on the LGBTQIA community and has literally ministered to thousands of men who were alone and lost. This man is Reverend Bernárd Lynch.

During the AIDS crisis of the 1980s and ‘90s, Bernárd was a tireless voice in the New York City community and traversed the difficult road of illness and death.  His leadership served as a beacon of light to those of us lost in the sea of dying faces we could not save.  Bernárd took up a fight of which many other men shied away. This man used every ounce of his being to provide care to those who died and to those of us living and blindsided by AIDS.  Bernárd’s faith in God never wavered.

Bernárd is an out and proud Roman Catholic priest who has marched in the Gay Pride parades of New York and London for the past 30 years.  He has touched the hearts of gay men and lesbian women from the shores of the United States to England to his homeland of Ireland.  Few men living can be called icons, but I certainly would call Bernárd an icon.

Bernárd’s list of accomplishments is long and varied.  He has worked for the betterment of the LGBT community worldwide.

Father Lynch first came to notice in New York City in 1982 when he formed the first AIDS ministry in New York City with the Catholic group Dignity.  It was this same year that he was drafted to work with the then-New York City Mayor Koch’s Task Force on AIDS.

In 1984, Father Lynch publicly backed Executive Order 50 in New York, which forbade discrimination from employers who did business with the city or received business funding.  At the height of the AIDS pandemic in 1986, he used his voice to publicly speak up against Cardinal O’Connor in New York City Council chambers for Intro 2, that guaranteed lesbian and gay New Yorkers the right to work and housing without prejudice against their sexual orientation.

Accusations of sexual abuse were lodged against Rev. Lynch in a criminal case in 1989, in which
he was found not guilty and acquitted.  Some, including Rev. Lynch, believe that the prosecution
was part of a smear campaign against him by Cardinal O’Connor and his allies in the church and
government.  A 2019 civil lawsuit against the Catholic Archdiocese of New York, in which Rev.
Lynch was accused of sexual abuse, was dismissed for lack of evidence.

His work related to HIV and AIDS and his persecution in New York were profiled by Channel 4 in
three documentaries: AIDS: A Priest’s Testament, Soul Survivor, and Priest on Trial.  He
received the AIDS National Interfaith Network Award for Outstanding Contribution to HIV and AIDS
Ministries in 1990.  In 1992, Father Lynch was the first priest of any denomination to march in
London’s LGBT parade dressed as a priest.  In 1993, he founded a support group for priests who
are gay.

His autobiography, A Priest on Trial, was published in 1993.  In 1996, the Sisters of Perpetual Indulgence canonized Father Lynch outside Westminster Cathedral in London.  In 2006, Father Lynch became the first legally married and legally valid priest in the world to have a civil partnership with his partner and husband, Billy Desmond.

In 1986, he received the Magnus Hirschfeld Award for outstanding services to the cause of Irish LGBT freedom.  Father Lynch was welcomed in 1995 to the Palace of the President of Ireland by her Excellency President Mary Robinson.

Never in my life have I met, or been privileged to know, a man who represents the LGBT community so well.

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.

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.