Stories of Caregiving

'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.

'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.'
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Baby Aaron
Story & Recording by Raymond Black

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.

'His leadership served as a beacon of light to those of us lost in the sea of dying faces we could not save. Bernard took up a fight of which many other men shied away.'
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Rev. Bernárd Lynch: A Priest on Trial
Story & Recording by Cosgrove Norstadt
Photo © Life Through a Lens Photography

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.

'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.

'Love doesnʼt end based on a test result.'

Richard Lawrence Reed, 1956-1995
Story & Recording by Michael Martin

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.

'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.

'That interview saved my life. My mother always had PTL on and I was 12 when I heard your interview ... I suddenly knew that I could be gay and Christian, and I didn't have to kill myself.'
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Rev. Dr. Stephen Pieters:  Survivor & Trailblazer
Story by Irwin M. Rappaport
Recording by Jessica  Chastain

The Rev. Dr. A. Stephen Pieters is an AIDS survivor, an AIDS activist and a pastor who ministered to people with AIDS from the earliest years of the AIDS epidemic.  Steve received his Master of Divinity Degree from McCormick Theological Seminary in 1979 and became pastor of the Metropolitan Community Church in Hartford, Connecticut.

In 1982, Steve resigned his position as pastor in Hartford and moved to Los Angeles.  A series of severe illnesses in 1982 and 1983 eventually led to a diagnosis in 1984 of AIDS, Kaposi’s Sarcoma and stage four lymphoma.  One doctor predicted he would not survive to see 1985.

And yet, 1985 proved to be a watershed year for Rev. Pieters.  He became “patient number 1” on suramin, the first anti-viral drug trial for HIV which led to a complete remission of his lymphoma and Kaposi’s sarcoma.  Unfortunately, suramin was found to be extremely toxic, and it came close to killing him twice.

Also in 1985, during his suramin treatments, he appeared via satellite as a guest on Tammy Faye Bakker’s talk show, Tammy’s House Party, on the Bakkers’ PTL Christian network.  Tammy Faye took a huge risk with her evangelical Christian audience by inviting Pieters on the program and advocating for compassion and love for gay people and people with AIDS.

I’m Jessica Chastain, and portraying Tammy Faye in her interview with Rev. Steve Pieters was one of the highlights of my role in the 2021 film The Eyes of Tammy Faye.  The interview was done via satellite because of fears that the PTL crew would not be comfortable with an in-person interview.

Steve told People magazine that: “She wanted to be the first televangelist to interview a gay man with AIDS.  It was a very scary time and there was still a lot of fear about AIDS and about being around a person with AIDS.  And I thought the opportunity to reach an audience that I would never otherwise reach was too valuable to pass by.  I’ve had people come up to me in restaurants and tell me, ‘That interview saved my life. My mother always had PTL on, and I was 12 when I heard your interview, and I suddenly knew that I could be gay and Christian, and I didn’t have to kill myself.'”

Tammy Faye’s support for people with AIDS and the gay and lesbian community continued.  Bringing
along her two children, she visited AIDS hospices and hospitals, went to LGBT-friendly churches, and
participated in gay pride parades.

When the Bakkers’ PTL network and Christian amusement park were embroiled in scandal and she became the subject of jokes and Saturday Night Live skits, she said in her last interview, “When we lost everything, it was the gay people that came to my rescue, and I will always love them for that.”

Tammy Faye passed away from cancer in 2007, but Rev. Pieters continues to thrive both personally and professionally.  He has served on numerous boards, councils, and task forces related to AIDS and
ministering to those with AIDS, and his series of articles about living with AIDS was collected into the
book I’m Still Dancing.  For many years, Pieters served as a chaplain at the Chris Brownlie Hospice,
where he discovered a gift for helping people heal into their deaths.

Pieters was one of twelve invited guests at the first AIDS Prayer Breakfast at the White House with U.S. President Bill Clinton, Vice President Al Gore, and the National AIDS Policy Coordinator in connection with World AIDS Day 1993, and President Clinton spoke about Rev. Pieters in his World AIDS Day speech on December 1, 1993.

Pieters has been a featured speaker for AIDS Project Los Angeles and his story is told in the
books Surviving AIDS by Michael Callen, Voices That Care by Neal Hitchens, and Don’t Be Afraid Anymore by Rev. Troy D. Perry.  He has received many awards for his ministry in the AIDS crisis from
church organizations, the Stonewall Democratic Club in Los Angeles, and the West Hollywood City
Council.

In 2019, his work in AIDS Ministry, including his Tammy Faye Bakker interview, became part of the LGBT collection in the Smithsonian National Museum of American History.  Pieters left his position with UFMCC AIDS Ministry in 1997, earned a masters’ degree in clinical psychology, and worked as a psychotherapist at Alternatives, an LGBT drug and alcohol treatment center in Glendale, California.

Now retired, Pieters is busier than ever with speaking engagements, interviews, and finishing up his memoir, My Journey Through AIDS (I Keep on Dancing).  He has been a proud, singing member of the Gay Men’s Chorus of Los Angeles since 1994.

'This is my tribute to those who were alone. They had no friends and no family. I miss all of you, and I continue to remember you and love you.'
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In Remembrance of Those Who Were Alone
Story & Recording by Cosgrove Norstadt

In 1981, I was living in Ohio and dating a man from New York City. Because of him, I became aware of a strange cancer striking gay men in New York and San Francisco. Unfortunately, in Ohio, no one was worried about AIDS because only people in NYC and San Francisco were at risk.

Four years later, I moved to NYC. I met the Reverend Bernard Lynch who was ministering to those afflicted with AIDS. I ask him how I could help. What could a naive youth from Ohio know about such a massive Holocaust? I wasn’t cut out for ACT UP and criticized for my lack of anger and outrage. I wasn’t angry. I was sad. Terribly sad. I was sad for all the men dying alone in the hospitals.

Bernard directed me to St. Clare’s Hospital to volunteer. They wanted me to wear masks and gloves and footies, but I couldn’t. If I was going to hold you in my arms as you died, I was going to let you touch me, cough phlem on me and cry on my shoulder. From a Christ-like point of of view, I could not do less than Christ himself.

Most men at St. Clare’s lasted two weeks, tops. I hadn’t lived in NYC long enough to make friends. My friends became short term and very deep with the men who were alone and dying. I met sex workers who taught me compassion. I met intravenous drug users who taught me to be accepting. Every two weeks, I lost my newest best friend. All of these men shared their most intimate secrets with me and, most of all, their love.

The number of men I held as they died is impossible to calculate, but as my life continues, I remember the patients of St. Clare’s Hospital. I remember how you were ostracized by friends and family. I remember how, as gay brothers, we loved one another unconditionally.

This is my tribute to those who were alone. They had no friends and no family. I was just a 22-year-old boy from Ohio, learning life lessons I wish never existed. I miss all of you, and I continue to remember you and love you.

'We must honor all these brave men and women. We must never forget they were here.'
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Jim Brumbaugh, 1948-1991
Story & Recording by Ellen Matzer

One of the bravest men and patients I remember. They were all brave, but Jim Brumbaugh (1948-1991) faced this illness with a calm and realism we didn’t see often.

He was in and out of the Hospital many times. He had a multitude of opportunistic infections throughout the year he was ill. He had a wonderfully supportive partner and family that was also rare back then.

I remember one of the times, Jim knew he was close to the end. I went into see him. He was sorting out imperial topaz gem stones. I had never heard of that stone before and he explained to me that it was one of the most beautiful topaz stones there was. He was sorting out the stones to give them to all his nieces after he passed.

I remember sitting with this wasted yet still handsome man, looking at each stone and talking to his partner about which family member should get which stone. It was as if Jim was having a normal conversation about anything. I remember thinking, how can he do this so matter of factly? His partner had also known that my 2-year-old son liked elephants. The next day, he came in with a bandana that had elephants on it. I still have it.

Jim, I miss our talks. I miss you, how brave you faced every speed bump, every obstacle. There were so many we lost back then. I try to remember everyone’s face, something special about them. Most of them, I do.

Valery Hughes and I wrote the book Nurses on the Inside, Stories of the HIV/AIDS epidemic in NYC to remember this generation lost. To warn against it happening again.

We must know the history of the awful epidemic. There are too many people that don’t remember, were too young or not even born yet. It was a holocaust. We must honor all these brave men and women. We must never forget they were here.

'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.