Nurse Elena Schwolsky Built Bridges During the Early AIDS Pandemic
by Dann Dulin
What do you call it when you fall in love with a place? An attraction? An affinity? Or possibly ….magic.
For Elena Schwolsky, and her wanderlust, she became enchanted by Cuba.
A product of the sixties revolution of sex, drugs, and rock ‘n’ roll, Elena was a typical baby boomer exposed to a new world that was a hotbed of music, culture, lifestyles, fashion, and civil rights. Think, Haight-Ashbury, Bonnie and Clyde, The Graduate, Lenny Bruce, Aretha Franklin, Janis Joplin, “Honky Tonk Woman,” “You’re So Vain,” John and Yoko, Kent State shootings, moon landing, Robert F. Kennedy assassination, Ms. Magazine, Rolling Stone, Chubby Checker, the Twist …. are you in a time warp yet?
Elena was captivated by it all. A self-described hippie and Vietnam War protester, her passion was social justice. In 1972 the restless rebel made her first trip to Cuba, at age twenty-five, volunteering to help build houses in the midst of the Cuban Revolution. (At the time, America was in the throws of the tumultuous Cold War with Cuba and it was illegal for Americans to travel there.) After her three-month contract was up, Elena was smitten. In the following years she would trek to Cuba repeatedly, an eyewitness to drastic changes—especially with the pandemic, working with PLWAs.
Back on U.S. soil, Elena became a nurse, eventually working in pediatric AIDS for a decade, trampling in the trenches during the height of the epidemic. Then one day, the virus got personal. Twice divorced, and with a son and a daughter, Elena’s husband, Clarence, forty, an African American Vietnam Vet and recovering substance user, who had a young daughter from a previous marriage, died from complications of AIDS. Elena was devastated.
In her book, Waking In Havana, A Memoir of AIDS and Healing in Cuba, Elena recalls caring for Clarence for two laden years. “We had made so many sacrifices for this disease. We shopped for AIDS and cooked for AIDS. We scrubbed the house for AIDS….We made love wrapped in latex for AIDS….we bought a cane, a shower chair, and the walker – all for AIDS….”
In those days she and Clarence had to deal with the relentless evil cloud of stigma constantly hanging over them. “It was so intense then,” she laments in her book. “Clarence’s illness was a secret I shared only with my family and a few close friends. I felt so alone. I was on a rollercoaster of hope and fear.”
By 1990, at age forty-four, Elena was a widow. For the past several years, her life had been satiated with the deadly disease. How would Elena move forward? Magic was needed. She returned to Cuba, and did so throughout the nineties, immersing herself in HIV prevention, fostering soulful friendships, and creating Proyecto Memorias, the Cuban AIDS Quilt project.
From the womb, Elena (born Ellen but her Cuban friends called her “Elena” and it stuck) could have been kicking defiantly, as the girl was an activist from the start! At sixteen she joined the Student Nonviolent Coordinating Committee (SNCC), a group helping those on the impoverished side of her hometown of Hartford, Connecticut. A couple of years later, she was present at the 1963 March on Washington, witnessing the fervent, iconic words of Dr. Martin Luther King Jr.
Inspired, while a student at Antioch College, Elena and some fellow colleagues stormed the Ohio State Fair one summer day as President Lyndon Johnson spoke. At the start of his speech, they unrolled a banner that read, “Hey, Hey LBJ! How Many Kids Did You Kill Today?” The National Guard escorted them out before the crowd swarmed them.
In 1967, Elena moved to San Francisco, one of the epicenters of the sixties explosion. She lived in a hippie commune near Dolores Park in a brightly painted Victorian house, where they grew their own vegetables. She joined the Venceremos Brigade, which began in 1969 by student activists from Students for a Democratic Society (SDS), in solidarity for the Cuban Revolution, and also joined a women’s consciousness-raising group where they studied Marx, Lenin, and Malcolm X.
Around the same time, Elena married, had a son, Jonah, who she would schlep around in her backpack while attending to her vigilante duties. When she embarked on her first journey to Cuba, Jonah was two years old. “I was…idealistic and naïve enough to believe that leaving my toddler for three months was no big deal,” she states in her book, leaving her husband to care for the child. However, she suffered heavy anxiety and guilt before, during, and years hence. In fact, her current project is writing a novel about this slice of her life. In Cuba that first time, she’d often pull out a wrinkled ripped photo from her front jeans pocket of a windblown wavy dark haired Jonah, standing in a park.
In the nineties, Elena returned to school, earning a Masters of Public Health at Hunter College in New York City. Concurrently, she maintained her job at the Children’s Hospital AIDS Program (CHAP), in Newark, New Jersey, where she started an international training program, building a work exchange between her colleagues and Cuban doctors and nurses. In 1994, she was invited to be the keynote speaker at the International Nursing Congress in Cuba, and entitled her speech, “From Both Sides Now: When AIDS Comes Home.”
For her dissertation, Elena would again travel to Cuba, interviewing those who were first impacted by AIDS-related illnesses and then corralled into an AIDS sanatorium on the outskirts of Havana. The place was called Los Cocos, named for the coconut trees peppering the area.
One guy she met was Alejandro, a computer whiz, who at seventeen had been chosen to study nuclear chemistry in Russia. He was an HIV prevention leader and founding member of Grupo de Prevención SIDA (AIDS Prevention Group). In the early eighties it was common for young Cubans to be sent to Moscow to study various tech courses. He adjusted quickly and adapted to his new culture, even though in this country, gays were not accepted either. He kept a low profile, but feeling freer to socialize, not bringing embarrassment to his family. His journey came to a halt six months early when he was told that his father was dying and was handed a ticket to fly home. His life would be forever changed.
When the plane landed on the tarmac in Havana there was a brouhaha of military men and an ambulance. Alejandro figured a VIP was ill. As he descended the stairs, military men ramped up to meet him, pulling his suitcase out of his hand and escorting him to an official room where they plainly stated, “You have AIDS.” They explained that it was discovered when he donated blood in Moscow for Chernobyl. They continued on, indicating that he probably would die soon, and that he would be transported to a hospital to be cared for.
Shocked, Alejandro knew nothing about the disease and he felt deceived by their con. This was 1988 (the same year Clarence, Elena’s husband, received his HIV-positive diagnosis), and the strict regimen was common in Cuba’s first years of the epidemic. Elena would hear similar stories over and over again.
Alejandro was one of the first AIDS patients at Los Cocos. Along with diplomats and artists, most of the several hundred residents living there were soldiers returning from Angola. They were considered heroes. It was understood that these men acquired HIV through sexual liaisons; some married, but Cuban mores were open for both husbands and wives. (Being gay was a different story, not quite accepted yet.)
The sanatorium was scattered with apartment-like dwellings among tree-lined pathways, and Elena describes it like visiting a college campus. The hefty property had been owned by a wealthy Cuban, which was then turned into a military rec center. Los Cocos was located in peaceful leafy surroundings.
Elena spent much of her time in the psychology department as a health educator. She helped establish a group from the sanatorium residents, training them to conduct community-based prevention gatherings. Many residents would turn their diagnosis into activism, assisting the government to dispense HIV prevention into the community. They would hold meetings in neighborhoods, teaching the locals how to protect themselves against AIDS. Thanks to these individuals, the group hammered out fear.
One day in a training workshop at Los Cocos, Elena posed this question to the group, “How did you first find out about your diagnosis and how did you feel?” Each person answered and told their sorrowful story, including Alejandro. It was now the newcomer’s turn. Roberto replied, “I don’t feel comfortable answering the question.” Elena didn’t anticipate this, though she assured him that it was okay. After lunch, Roberto did not return. He didn’t attend the next day either, so Elena visited him in his room.
Roberto explained. He was married, had two daughters, a job, an apartment, and one year it all erupted in a blaze. His marriage ended, he had to move, and he lost his job. Roberto fell into a deep depression. “I had an emotional breakdown,” he told Elena, both of them sitting on his bed. The only person he felt close to was his sister, who was HIV-positive and living at Los Cocos. He observed that she was living well and was hugely supported. “I decided I wanted to be here with her,” he said, rising to pet his little orange-haired kitten on the dresser. Elena kept direct eye contact, urging him to proceed. Roberto went on. “So I bought blood from someone who was infected with the virus, contaminated blood, and injected myself with it.”
Elena’s head spun. Inside, the incident jolted her. She had never encountered a narrative like this. It was beyond comprehension. She kept her cool. After a bit more talking, Roberto revealed to her that he was sorry for the horrible mistake he had made, but it was too late. He also shared that there were others living there who did the same, such as sex workers and and people who used substances. “They led disorganized lives, but I did not have that kind of life,” he admitted. Roberto’s story stayed firmly embedded in Elena’s head.
Shock eventually turned into self-examination. She was stunned about her lack of self-protection when Clarence was diagnosed. “What was I thinking? How could I have exposed myself like that? I was a professional. I counseled people about safe sex and HIV prevention all day long.” Roberto’s story now made a little more sense to her.
Roberto became part of Grupo de Prevención SIDA, teaching others about HIV. After several years, Elena found out that Roberto was doing fine and was even hopeful in getting back with his wife. One afternoon, under one of the mango trees on the estate, Elena asked him, “What prevention message can you pass on to others?” “Man doesn’t learn from the times he falls down,” Roberto quoted José Martí, hero of Cuba’s war of independence against Spain, “but from the times he picks himself up.”
One afternoon in a workshop, Elena was showing a photograph of Clarence’s AIDS Memorial Quilt panel taken at D.C.’s National Mall. No one had heard of the quilt, so she explained, telling them about Cleve Jones’ creation in 1985. They became enthusiastic, saying that there were no AIDS memorials in Cuba. Being that the tenth anniversary of the sanatorium was soon coming, they suggested making panels for those who had died.
Several weeks later, many were on the floor stitching fabric. Even Elena’s daughter, Angelica, was visiting and had brought some lovely designed material. Though, doubts began to circulate as to whether the Cuban government would permit this. The residents hemmed and hawed for several weeks under a weighted cloud of anxiety. Finally they received permission and also an invitation to display it at the sanatorium’s tenth anniversary!
This was one of Elena’s proudest moments. In the ensuing years she taught HIV prevention in Tanzania for a summer, and then worked with an organization where she could exchange and promote health between Cuba and the U.S. One time, Alejandro and others were sponsored to come to America to attend festivities in Washington, D.C., for the International Names Project, which Proyecto Memorias was now a part of. In May 2019, Cleve Jones visited Los Cocos, where Proyecto Memorias was unfurled in a stirring event.
Submerged in AIDS work most of her life, but proud of her accomplishments and overloaded with a quilt-full of cherished memories, in 2020, Elena finds herself residing in Brooklyn, living with a devoted spouse, and enjoying being a doting grandmother. Her love affair with Cuba thrives and Elena visits her second home every year.
It seems Elena’s magic continues.
Dann Dulin is a Senior Editor of A&U. Follow him on Twitter @DannDulin.