Nikolay Nedzelskiy—Kolya, to his friends—was one of the first Russians I befriended when I lived in Moscow from 1993 to 1997. He had HIV—a fact he did not hide, even in an era when an HIV diagnosis meant almost certain death. Russia, in particular, was a country where treatment opportunities were close to nil.

As the spring thaw hit in 1993, Kolya invited me to his appointment at the only HIV treatment hospital in Moscow, in a dilapidated structure in a forested area of the city. Patients and nurses were smoking indoors. There were housecats wandering the hallways—to keep the mouse population in check. The hospital was home to a few healthy HIV-positive patients who were semi-permanent residents because they had nowhere else to live. The cats would come to the patients to give and get affection, to provide solace and comfort.

Kolya was the 170th person diagnosed with HIV in the USSR, around 1989. Instead of looking at his diagnosis as a death sentence, Kolya gave it meaning. He became a public face of HIV in Russia. He was a Russian delegate at several International AIDS Conferences.

Even though his chances for survival seemed statistically slim, Kolya confided to me that he would hold on and wait for a cure. He lived for 26 years after his diagnosis.

This year, in the early dawn of Aug. 4, I received several messages from Russian friends telling me Kolya died early that morning in Moscow. His passing was the first HIV-related death of a friend of mine since 2007. I had forgotten the pain of hearing about someone’s life being cut short from HIV. It was crushing to feel this gnawing at my heart once again after almost a decade of respite.

***

The late 1980s and early ’90s were a frightening period to come out as a young gay man. Many straight people thought the appropriate response when I told them I was gay was to tell me to be careful and not get AIDS. Fear ran high; there wasn’t much compassion.

It was a dark time to have HIV. The lone medication, AZT, did seemingly nothing except give horrible side effects. There was no hope for decent treatment, let alone any hope for a cure.

As a student in Los Angeles at the time, I saw brochures or a poster at my university Hillel featuring the panel made for The NAMES Project—AIDS Memorial Quilt by the Union of American Hebrew Congregations AIDS Committee. The panel featured a tallit on a burgundy background and said: For those we’ve lost.

Above the photo of the quilt was written: Who will say Kaddish for me? I was a young gay male, just coming out, and that image frightened me. It rang in my head to always practice “safer” or protected sex. I did not want to be a name on a quilt.

A Russian portion of the Quilt. (Photo courtesy of The NAMES Project)

Young people today might not know the stories of the Quilt. People might not have heard of ACT UP’s dynamic protests, including several where the ashes of friends and lovers who died of AIDS were thrown on the White House lawn to make a statement. There was a time when AIDS-related obituaries took up many pages in every issue of every LGBT newspaper. Everyone looked at the names and photos with thoughts of “I remember seeing him out …” or “I slept with him …” and then tried to recall if the sexual activity was “safer” or risky.

In the summer of 1991, while in school, I worked for a mailing house owned by a Jewish family. The father was the chairman, and the son, Marc, was the president of the company. It was no secret that Marc was gay. One day we were told that Marc was in the hospital with pneumonia. A few days later he died. I was privately told that he had died of AIDS. His father was absolutely devastated, as any father would be. I went to the father’s office to pay my condolences. The tears for his son were immensely painful to witness. I could see and feel how hopeless he felt against this disease that took the life of his only son so early. I offered to assist in doing a tahara (ritual bathing of the dead) for Marc. His father politely turned down this offer because Marc was being cremated. Cremation was Marc’s wish because his body caused him pain and anguish. Marc would be the first person I knew to die of AIDS.

In 1992, I moved to Washington, D.C. It was my desire to be productive in the LGBT community that I was just joining. There were a few HIV-related organizations where I volunteered. One was a health clinic; another was the NAMES Project, a memorial quilt comprising more than 48,000 panels commemorating people who have died of AIDS. I helped people start panels for their friends and loved ones who’d died. It was a way to help the living mourn and for that loss to feel like it is part of something larger and greater.

There is always regret after someone dies, about not sharing with them how much you loved them or their importance to you.

Through my volunteering, I made new friends and acquaintances. One was Rick, who worked at NASA and had HIV. I saw him every few months when I went out. He was about 45 years old when I met him in 1992. While I was at work, a friend called to tell me Rick had died unexpectedly of complications from HIV/AIDS. Neither my friend nor I knew he was in the hospital.

Rick sketched out a Quilt panel he wanted made after he died. It featured a picture of his favorite home he owned, a ranch-style home on a green hill. A mutual friend and I went to the NAMES Project office to start his panel. Rick’s friends finished it and added it to the larger Quilt. It was displayed on the National Mall in October 1992.

A Russian portion of the Quilt. (Photo courtesy of The NAMES Project)

Then there was David, another early D.C. friend. He was very gentle and kind to me. The final time we spoke, he was incredibly weak. Every word he spoke sounded like it took immense effort. I did not want him to waste his breath on me. He told me how he wanted to meet my first boyfriend. He died a few days later in 1992. He was in his late 30s.

The talented young writer Joel Redon was a warm friend and spirit in my life. I met him through a mutual friend, who said, “You must meet Joel when you are in San Francisco—you will love him!” I looked him up in 1992 and we spent an amazing and carefree afternoon together. Joel wrote the groundbreaking novel Bloodstream—“The first gay AIDS novel, Mary,” as he inscribed to me in my copy of his book. Bloodstream was a painful read about the early days of AIDS, which he’d lived through. He was diagnosed in 1986. He told me of his friendship and sexual relationship with Allen Ginsberg. Joel gave me the necktie he wore on The Today Show to promote Bloodstream. Joel knew his time was limited. Once he called me up late at night, crying. He felt alone and did not want to say goodbye to me. Joel left us in 1995 at the age of 33. He published three novels.

It was difficult as a 22-year-old to cope with the unnatural emotions of dealing with suffering and death of people I would meet. More friends and acquaintances got sick and died.

My first job out of college, working for Sen. Alan Cranston, ended with his retirement in January 1993. My search for a new job was going nowhere. An opportunity arose for me to take a job in Moscow. Russia held interest, because I studied the language in college.

As a young man, living in such a foreign, unfamiliar place was unbelievable. It was a dynamic time in Russia’s history. Communism ended. New freedoms were taking root. The Russian gay community was beginning to come out in the open. It held excitement for me. Plus, there were no obituaries of familiar faces dead of AIDS.

Then I met Kolya.

***

After I left Russia, Kolya and I lost touch. A few years ago, we found each other on Facebook and reconnected. We both had more than a few gray hairs. He started a website to help Russians find information about HIV and learn about treatments—not all of which were available in Russia. He started another Russian website to give a more personal perspective on HIV. He worked with a Bulgarian real-estate company. His Facebook status was always going between Moscow and Sofia and vacationing in sunny places in Europe. His life was good. He was healthy. He looked strong. He was alive. There were many pictures of him with his beloved dogs.

A year ago, Kolya was diagnosed with cancer. His cancer, from what I knew, was not directly related to his HIV. However, it was a cancer usually seen in older people. With a compromised immune system, the body has a more difficult time fighting serious illness. When the treatments he received in Moscow were not successful, he explored treatments in Israel, which showed some initial promise. Everyone who knew him hoped the new treatments would put the cancer in remission. For several months, they did.

He celebrated his birthday a few months ago and shared pictures with his friends all over the world via Facebook. Kolya looked happy, though he was seated much of the time, and used a cane when standing.

Then in mid-July, Kolya moved to Moscow Hospice #1.

There is always regret after someone dies, about not sharing with them how much you loved them or their importance to you. I could not live with that feeling. I wrote Kolya when he moved to hospice. I told him how he helped make the world a better place. How he changed attitudes and the importance of his work. He needed to know, even from 6,000 miles away, that he and his work were deeply important. I told Kolya—who founded and served as director of the NAMES Project in Russia, newly created in 1992 just as the new Russia was being born—that if he were to die, I would make him a panel for the Quilt.

Judaism has a strong belief in never losing faith even when all seems hopeless. The example I remember most is Rabbi Akiva, who in 137 CE was tortured to death by the Romans. While being tortured, knowing it would lead to his death, he never lost his faith and continued to pray.

The agony of sharing plans with a terminally ill friend at the nadir of his physical pain about what you will do in his memory is heavy. I did not want him to think that I lost faith and that I was giving up on his health. It was important for me to tell him that I would honor him and his work. I prayed often for a healing of his body, mind, and spirit.

In the early morning of Aug. 4, I received messages from Russian friends living in Washington D.C.: “Kolya Nedzelskiy died this morning.” The most painful of all emotions, grief, hit me. Of all the HIV-related deaths I’d heard about, Kolya’s was the first where I knew he was gravely ill and heard about his passing within hours of it occurring.

Kolya’s death, though not a surprise, put me in a melancholy state. He was not much older than me. I remembered Kolya’s voice and mannerisms, hanging out drinking tea with him, and our visit to the HIV hospital.

One mutual friend Tom offered to help me in making a Quilt panel for Kolya. We decided Kolya’s panel will be bilingual, featuring his name, the inscription “Founder and Director, Names Project in Russia,” the years of his birth and death, a picture of him with one of his dogs, and the inscription “Diagnosed Patient #170 of HIV/AIDS in the USSR.”

***

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