When Charles Perry was diagnosed with HIV in 1988, his diagnosis was considered a death sentence. At the peak of the AIDS epidemic in the 1980s, funerals for victims of HIV were held nearly every week in the Seattle area.
Perry sat down last year with Rosette Royale, the story-gathering coordinator for The AMP: AIDS Memorial Pathway, to tell his story, and the two became friends.
Last month, Royale was heartbroken to learn that Perry had died of COVID-19 days after contracting the coronavirus. He had lived with HIV for three decades. He was 66 years old.
“What’s happening now it seems in a way so abstract,” said Royale. “When you see The Seattle Times’ list of how many people died … they’re just numbers, but then to find out that someone I knew was one of the numbers really shook me.”
Like Perry, many long-term survivors of HIV and AIDS never expected to live this long. Some have been wracked with survivor’s guilt for decades. Many who are not HIV-positive themselves but lived through the height of the AIDS crisis have had the trauma of watching many friends and loved ones die.
Now, they find themselves in the middle of another worldwide public health crisis, once again watching helplessly as death tolls rise.
“Some are feeling a sense of déjà vu,” said Royale, whose partner died of HIV in 1994.
There are stark and important differences between the current pandemic and the AIDS crisis, but for many who lived through the worst of the AIDS epidemic, the death and isolation that COVID-19 has wrought harbors echoes of a time when they endured hatred, fear and isolation all while attending funerals of friends on an almost weekly basis.
In the early years of the HIV/AIDS crisis, the federal government was apathetic toward those most impacted because AIDS was seen derogatorily as a “gay plague.” The apathy and stigma associated with HIV/AIDS was later reinforced as it became known that the Black community and intravenous drug users were among those disproportionately affected by the virus.
“It was killing all the ‘right’ people,” says Jack Orion Barker, 70, a queer corset maker who lived through the AIDS crisis in Seattle. “We were considered pariahs, because we were dying like flies.”
Now, amid a new pandemic, those who experienced the AIDS crisis in Seattle look back on those tragic decades and are horrified to see certain parallels, heartened to see people supporting each other as some did in the past, and hopeful that the lessons learned from the HIV and AIDS epidemic can be helpful today.
“All of our lives have been touched in some way by HIV, even if we can’t see it,” said Royale. “This current pandemic is reminding us, once again, that we’re all connected.”
“I got used to people dying”
As a retired physician who spent much of his career caring for patients with HIV and AIDS, Dr. Bob Wood is no stranger to death.
Wood was the director of King County’s HIV/AIDS program for more than two decades. During the height of the AIDS crisis in Seattle, Wood was also a clinical professor of medicine at the University of Washington School of Medicine. In these roles, he witnessed countless patients and friends die.
“I did a lot of crying in the early days when people were dying,” he said. “They all became my friends.”
Wood often found himself crying in a colleague’s office or, after particularly hard days, listening to Mozart’s melancholy “Requiem” at home with his partner.
“I couldn’t go to all the funerals, because it was just too painful sometimes,” he said.
Wood’s partner, who was HIV positive, died of complications from hepatitis C in 2005.
Diagnosed with HIV himself in 1985, Wood never expected to live long enough to see another epidemic. Now retired, he sees parallels between the toll that the AIDS crisis took on caregivers and the role of health care workers in today’s pandemic.
“I got used to people dying, and I guess doctors are overwhelmed and getting used to people dying now,” Wood said. “People would say ‘thank you’ like we’re thanking doctors nowadays for the courage to take care of these infectious people.”
After more than 20 years spent caring for AIDS patients, Wood retired at 67 partly because he feared he would die from HIV before he could enjoy a later retirement, but also in part because he was burning out.
Today, health care workers in cities like New York that have been decimated by the coronavirus have expressed horror at watching patients and co-workers die and fear of contracting the virus themselves due to the lack of adequate personal protective equipment.
Still, like Wood did, health care workers continue to show up, risk their lives and do all they can to support those dying of COVID-19 without their loved ones nearby.
“A basic need to know that we’re not alone”
During the AIDS crisis, many of those with HIV and AIDS also died alone — but for very different reasons. Family and friends avoided the ill because they were afraid and misinformed about how AIDS is transmitted, or because they were ashamed of the queer lifestyle they saw as the cause of their loved ones’ illness.
Back then, the LGBTQ+ community — LGBTQ+ stands for lesbian, gay, bisexual, transgender and queer/questioning, with the + denoting everything along the gender and sexuality spectrum — banded together to care for HIV-positive people who were abandoned by families and friends. They provided food, shelter and palliative care to the ill, and sometimes gathered at Volunteer Park on Capitol Hill to informally commemorate the lives of those who were denied church funeral services.
The highly infectious nature of COVID-19 means those who want to help have no choice but to keep their distance — even when their loved ones are dying.
“One of the things about HIV is you could be close to people,” Wood said. “Nowadays you can’t do that.”
To avoid contracting or spreading COVID-19, many have had to say goodbye to loved ones dying of the disease from afar; that prospect of dying alone is what makes COVID-19 such a terrifying disease.
Trudy James, a chaplain who offers end-of-life consultations, spent years working with terminal AIDS patients, and eventually produced the film “Speaking of Dying.”
Her advice for those who must say goodbye to loved ones from afar these days? Find a way to show that you want to be there with them.
“I believe in doing little simple rituals to show your intention to be in touch with them,” she said. “People often feel so powerless, and I say light a candle or write a letter to the person, even if you have no way to get it to them. It will carry your intention somehow to them.”
Experiencing another epidemic has resurfaced past trauma for many who lived through the AIDS crisis, but James says that like her, many of those people learned skills and coping mechanisms that taught them how to help themselves and others this time around.
Trauma and grief are part of the legacy of the AIDS crisis. But so is activism and the strengthened ties and organized service groups that developed out of the LGBTQ+ community’s efforts to support one another when no one else would.
In the decades since the height of the AIDS epidemic, Royale says collecting the stories of people like Perry who lived through the crisis has shown him how resilient we are and how looking back at our painful history can help fortify us as we face new challenges — like the fight against the novel coronavirus.
“There’s so much to this story,” he said. “It isn’t just a story of grief, though that is there, but it’s courage, strength, determination.”
“I’ve had a wonderful life”
Mario Estany, 55, was visiting family in Miami when the coronavirus began its rampant spread throughout the U.S. Estany, a Madison Valley resident who is HIV positive and has no family in Seattle, decided not to risk a flight back to Washington, and has been in Miami for roughly a month.
Because he had not planned to be away from home for so long, he grew worried about missing his medications. Without them, Estany is more susceptible to severe symptoms if he contracts COVID-19. Entre Hermanos, a Washington organization that began during the AIDS crisis as a support group for the LGBTQ+ Latinx community, stepped in.
“I almost cried when they said they can send [my medications] by mail,” Estany said from a family member’s house in Miami. “I lived almost 30 years with HIV. I don’t want to die of this virus.”
COVID-19 is particularly concerning for HIV-positive people in their 50s, 60s and 70s, such as Wood and the late Perry.
As of press time, the Centers for Disease Control and Prevention has no conclusive information about the risk of COVID-19 for those living with HIV. However, those with underlying conditions, those who are older, and those whose HIV is not being treated or well-managed are at higher risk for contracting it.
“The communities who are most at risk [for COVID-19] are also the communities that are suffering most from HIV,” said Steven Sawyer, director of the People of Color Against AIDS Network (POCAAN). “They tend to be poor, they’re disenfranchised, some of them are homeless. It just piles trauma on top of trauma.”
Many community organizations like POCAAN that grew out of the AIDS crisis are doing their best to help those living with HIV get through the current crisis too.
Wood is particularly proud of how he helped Seattle become the world’s first city to achieve the 90-90-90 treatment target to help end the AIDS epidemic. That’s a situation where 90% of people with HIV are aware of their infection, 90% of those people are on treatment, and 90% of those people are effectively treated and have no virus detectable.
These days, Wood, 77, is carefully self-quarantining at home. He says he is most afraid of contracting the illness because he doesn’t want to have to be intubated and put on a ventilator to stay alive.
Even in his retirement, the doctor continues trying to help others.
“If I got coronavirus now and they were short on ventilators, I think I would say, ‘Hey use the ventilators on somebody who’s younger and has a longer life ahead of him or her, and don’t use it on me,’ because I’ve had a wonderful life,” Wood said. “I’ve been dealing with HIV for a long time — which you think would be a downer, but it’s been a real challenge. I’ve had a wonderful opportunity to help people. I’ve helped people to die. I’m still helping people to die, and I’ve had a wonderful life.
“If I were to die tomorrow, I would say ‘Hey, it’s been great, and I feel really fortunate.’ ”