Stories of Compassion

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.

My name is Richard Rivera, and I remember how devastating AIDS was in the New York State prison system.  It was much worse than the public realizes or would imagine.

All around me during the early 1980s, prisoners began to experience sudden weight loss, sores in their mouth, a persistent cough, and other inexplicable medical problems. Popping up on the news were rumors of “that gay disease.”  Its official name was Gay-Related Immune Deficiency, or GRID.  But no one really knew what was going on or how it was transmitted.  All we knew was that this new thing was a death sentence.

Ironically, despite our fears and superstitions, prisoners continued to do what prisoners did.  Intravenous drug use, tattooing, and high-risk sexual behavior remained the norm.

In 1985, concerned over a friend named David who had disappeared from general population, I convinced one of the nicer officers to sneak me into the infirmary for a visit. When the doors opened, I saw a dorm-like area with beds neatly made with hospital corners lining the wall like a military barrack. But the room and the beds were empty.

The officer pointed to the back of the room, which was much darker. I made my way to an area sealed off with Plexiglas. It had an additional eight beds, on which eight prisoners lay: some on their backs, others in tight little balls. Their eyes were sunken into their skull, their hair thinning; their arms looked like twigs and their fingers were impossibly long. Some of them were covered in sores. One had swollen, purple legs, the skin so tight it looked like ripe fruit. He was softly moaning. It was my friend David.

I met David in 1983 at Great Meadow Correctional Facility, aka “Comstock.”  Prisoners called it “Gladiator School,” because of its propensity for violence.  I was 17 when I arrived.  I couldn’t read or write, and I had no friends and reputation.  I got into so many fights that I lost count after the fifth month there.

It was after a particularly violent encounter that I met David. He took me under his wing, showing me who to avoid and what not to do, while encouraging me to wear my glasses and stop eating my fingernails. I had no more trouble at Comstock. But David had a history of intravenous drug use and, I suspected, continued using and sharing needles.

In 1984, I was transferred to Green Haven Correctional Facility, and David followed soon after. He arrived smaller, thinner, and not at all the strong, robust, confident man I remembered.  Then a few months later, David was transferred.  That’s when I heard rumors of the secret ward and went looking for him.

The conditions in that ward were deplorable. Porters almost never went in to clean, medical staff rarely visited, and officers refused to have any contact with them at all. There were no medications, with the exception of the over-the-counter stuff like cough syrup and Motrin. AZT was still years away.

But every week from 1985 to 1987, I went there to care for David and the other men. David’s condition worsened, and ultimately, he was transferred to St. Agnes Hospital in White Plains, where he died.

The reason I am here today is because of brothers like David — and Jamel and Mongo and Joe and Pierre and Larry — who cared for me, corrected me, encouraged me, nudged me along the way. I went looking for David in that ward, because men like him had saved me, too, from being broken.

When I was 6 years old, my adoptive mother told me I was born HIV-positive. That same year, in 2003, my biological father passed away from AIDS-related complications. His family still believes that it was non-AIDS related cancer, but my childhood nurse, who also took care of him at the adult clinic, told me that he refused his antiretroviral treatment until he died. Suicide by AIDS. I grew up telling people it was a drug overdose.

When my birth mom, who everyone expected to pass away from AIDS sooner than later, died when I was in high school in 2009, I was finally able to tell people one truth about my parents: My mom was a homeless drug addict who died of hypothermia outside of a hospital in the dead of winter. I always left out the part about her being HIV positive, though. It was easier to keep my secret that way.

It’s taken me a long time to find forgiveness for them; to not view their deaths as them abandoning me to live with HIV on my own. But in my darkest moments of living with HIV, I found compassion for them in ways I never thought I would. I realized they were just humans who were hurting, too, and if they felt anything close to what I have then I understand why my mom kept choosing drugs and my dad chose to not fight for his life.

Ever since going public with my status and sharing my story, I’ve found so much healing in the amount of love, compassion, and understanding people have extended to me.

In my short-term experience with activism, I’ve heard a lot of talk about the term “Long-Term Survivors,” and how that encompasses way more than just our HIV statuses. People living with HIV are also often survivors of abuse, domestic violence, homelessness, drug addiction, mental illness, and so many other things.

Despite everything, both of my parents were fighters until they died, in more ways than one. I am their surviving story and I’m proud of that. I like to think they are, too.

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.

Actress Amanda Blake was best known for playing Miss Kitty on the TV Western Gunsmoke for 19 years, from 1955 to 1974.

I’m Jean Smart.  I remember growing up thinking she was sort of glamorous. I don’t think I realized maybe what she did for a living, but I thought she was beautiful and a terrific actress.  I always thought it would be fun to play a character like Miss Kitty.

The red-headed Miss Kitty started as a saloon hostess at the Long Branch Saloon in Dodge City, Kansas, and soon became an owner and the saloon keeper.  The series was set in the 1870s and showed Miss Kitty as a strong single woman who had a close friendship with the lead character, U.S. Marshal Matt Dillon, played by James Arness.  There was no explicit romantic relationship between them.  And their only attempt at romance, a dinner in her room, ended when she was called away to tend to work and returned to find him fast asleep on her bed.

In real life, however, Amanda Blake married five times.  Her fourth marriage, to Frank Gilbert, was the longest lasting.  After Gunsmoke ended, she and Gilbert experimented with the breeding of cheetahs in captivity, eventually breeding seven generations of the big cat.  In her last year on Gunsmoke, she shocked the cast and crew by bringing her pet lion cub, Kemo, onto the set on a leash.

Quoted in the Toledo Blade newspaper, Blake recounted that, “We got him up on the bar of the Long Branch Saloon and he posed for the still photographer like a true ham. But we had to ban him from the set when Jim Arness and I started shooting our scenes, because every time Jim would say his lines, Keno would start to roar.”

In addition to Kemo, Amanda’s and Frank’s Phoenix ranch housed two leopards, two racoons, six dogs, seven cats, two horses, a rabbit, some pheasants, and a toucan.  She and others formed the Arizona Animal Welfare League.  She frequently appeared at events in support of the Humane Society, and she was an early funder of PAWS, the Performing Animal Welfare Society, which protects abandoned or abused performing animals such as circus animals and animals performing in film and TV.  She and Frank Gilbert divorced in 1982.

Blake unfortunately developed oral cancer from her heavy cigarette habit, and after being successfully treated for the disease, she often appeared at fundraisers for the American Cancer Society.  Her fifth and final husband was Austin, Texas real estate developer and city councilmember Mark Spaeth, who had supported and courted the gay community during his political life and was rumored to be a closeted gay man.  The marriage lasted less than a year.  Spaeth died of AIDS-related pneumonia in 1985, less than one month after filing for divorce.

In 1989, Amanda Blake passed away at age 60.  Initial reports attributed her death to throat cancer, but her doctor reported later that year that she had died of a heart attack due to liver failure and AIDS-related hepatitis known as CMV, or cytomegalovirus.