They had the remarkable luck to
survive AIDS,
and the brutal misfortune to live on.
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Peter Greene had grown used to being alone with his memories. There weren’t many people left who shared them.
So when he ran into an old friend volunteering at a banquet last Christmas Eve, he couldn’t wait to dust off the stories he rarely got to tell. The ones that made him laugh long before the punch line, the embarrassing ones that still turned his cheeks pink. All the old ones that began with “Remember when ...?”
They escaped the din of the party for a balcony overlooking City Hall, bundled up against a winter afternoon that only a pair of San Franciscans would consider chilly.
Remember the weekend at the Russian River with Peter’s business partner? Remember that wild night at the bar, with the college friend who introduced them? Remember when Peter got caught with the naked pictures of his old lover?
As the blue sky faded to pearly gray and still their stories unspooled, they were laughing hard enough to cry. What went unremarked, in every memory exchanged, was that all the men they were talking about were dead.
Peter always expected he’d be long dead, too. He lived like that back then, his friend recalled. As if any day could be his last.
“And then, the end never came,” Peter said with a chuckle, like it was just another old joke between them.
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| In three decades in San Francisco, Peter Greene saw his generation of gay men devastated by AIDS. He still frequented his old haunts – including Martuni’s for piano karaoke, followed by coffee and pancakes at It’s Tops Coffee Shop on Market Street. Photo by Tim Hussin. |
More than 30 years ago, when he learned he was infected with the virus that causes AIDS, Peter was certain his life was over. Since then, he’d lost not just his lover and his friends, but his livelihood, his community, his home.
But on this Christmas Eve, on the cusp of another new year, Peter was still here: 61, his beard flecked with gray, his eyes still a striking, youthful blue. A survivor of a plague that killed tens of thousands just like him.
“I’m the luckiest unlucky person in the world,” he often said. “No one wants to be the last man standing.”
S
ince 1981, when the first man succumbed to a disease that did not yet have a name, AIDS has taken more than 20,000 lives in San Francisco, most of them gay men, most of them decades too soon.
Students and lawyers, musicians and doctors, drugstore clerks and teachers: They were young men exploring sex and drugs, falling in love for the first time, building a political movement. They were still growing up.
When San Francisco General Hospital opened the nation’s first inpatient
AIDS ward, nurses started a scrapbook for photos of patients and staff
and thank-you cards from families. They also started a list. On the
first page, in 1983, one nurse at Ward 5B wrote: “I don’t want the names
of the folks who have died on this ward to be forgotten.” Just 28
carefully handwritten names appear on that page. A few pages later, the
list for 1985 contains nearly 200 names, each so tightly scrawled, some
are hard to read. The scrapbook is now held at the San Francisco General
Hospital AIDS Ward 5B/5A Archives at the Public Library Video by Erin
Brethauer
In San Francisco and across the country, AIDS has become an older person’s disease: More than half of those living with AIDS or HIV, the virus that causes it, are now 50 or older. In San Francisco alone, 6,000 gay men have been living with HIV or AIDS for at least 20 years. Some have been able to thrive. But most have not.
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For many, time stopped when they were diagnosed. They let go of futures they had no reason to believe would ever arrive. So they have no savings, no retirement money, no strategy for continuing to live in a city that’s increasingly unaffordable. Over the next decade or so, many will need financial aid when private disability benefits run out.
They also are suffering debilitating health problems, chronic illnesses brought on by a lifetime of living with AIDS and the toxic effects of its treatment. Many live in stark isolation, feeling abandoned and forgotten, even by the gay community they helped build here.
San Francisco, which acted urgently to battle AIDS as the epidemic took hold, today is ill-prepared to care for the disease’s long-term survivors. The city’s health and social services infrastructure never anticipated their needs, never made a plan to care for them. While doctors and public health officials focus on eradicating HIV/AIDS once and for all, precious few resources are aimed at helping those still standing.
Many survivors still have hope — they’re trying to turn toward the future. But they’re scarcely able to get by in a world that they gave up on, and now feel has given up on them.
In the throes of a plague, no one thought about those who would live.
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All data are from San Francisco
Department of Public Health epidemiology reports. Figures in most recent
years are preliminary. The definition of HIV infection stage 3 (AIDS)
cases was updated in 2014, which may be partially responsible for recent
decreases in diagnoses.
More than 14,000 people died in
San Francisco in the first 15 years of the AIDS epidemic. Everything
changed in the mid-1990s with drugs to treat HIV; just over 6,000 have
died since. Now, people can live relatively healthy lives with HIV/AIDS.
Where once the epidemic was defined by the numbers killed, it’s now
defined by the survivors. Graphics by Jeremy Yingling
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eter Greene was 22 when he hitchhiked to San Francisco just after college. It was 1977, and he was Mr. Gay Colorado, a title he had won in a barroom stunt. With his Tom Selleck mustache and athletic body, Peter was confident and fearless. He supported himself with modeling gigs for gay newspapers and magazines, posing half-naked in ads for Castro district bars.
He arrived in a city exploding with political and cultural gay life, host to a great migration that created a boomtown in the Castro. It was a thrilling time. A new live-out-loud generation was coalescing around political touchstones: the Stonewall riots in New York City, attacks on gay rights in California and the rest of the country, and in San Francisco, the 1978 assassinations of Supervisor Harvey Milk, the first openly gay elected official in a major U.S. city, and Mayor George Moscone.
For young gay men from places where living openly was out of the question, the city, especially the Castro, offered a feast of freedom and opportunity. They could walk down the street holding hands or flirt in bars with windows facing the street. In the bathhouses they could have sex with whomever, whenever, free of judgment or shame.
Still, “it wasn’t just a Sodom and Gomorrah as they like to paint San Francisco,” Peter said. “We were all just young kids trying to figure out who we were.”
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| After decades of loss due to AIDS, Peter Greene learned to seek joy wherever he could – in particular, in music. Among his closest friends: the pianists at Martuni’s, a Market Street karaoke bar. Photo by Erin Brethauer |
AIDS was then an invisible, not-yet-deadly presence. It was never a
disease of gay men alone; women and straight men were always at risk
too. But in San Francisco it was gay men who were — and still are — most
vulnerable to AIDS. And in the earliest years, HIV, the human
immunodeficiency virus, circulated among people who had no idea it
existed, spreading silently among men exploring unprecedented sexual
freedom. But first slowly, then relentlessly, HIV and AIDS began taking
hold.
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| Graphic by Jeremy Yingling |
Peter probably was infected within a few years, maybe even a few months, of his arrival in San Francisco. By the time he tested positive in 1985, he said, “the party was over.” In those days, a decade before drugs were developed that could arrest the disease, anyone who tested positive expected to die quickly, gruesomely. Doctors did little to discourage that thinking. Make the most of the little time you have left, patients were told.
“From that day on,” Peter said, “you’re always living with that in your head.”
Just a year earlier, Peter had started a travel agency in the Castro with a friend, Jonathan Klein. For a few years, theirs was a joyful, flourishing business catering to the gay community. As the AIDS epidemic grew, they began charting final trips for young clients who needed oxygen or wheelchairs to travel.
His doctor died of AIDS just months after Peter tested positive. Friends from high school and college died. In the Castro, where he lived and worked, men his age stooped over canes, withering away. Peter offered the spare bedroom in his apartment as a refuge for families and friends keeping vigil over loved ones.
“I saw one of the great world epidemics unfold in front of my eyes,” Peter said. “I have to carry that with me the rest of my life.”
Peter’s lover got sick, too. Peter called his 15-year romance with Barry Sharp, a “big, burly fisherman” with a wife and children, a “Brokeback Mountain” affair. Most of the year, Barry worked in the icy waters off the Aleutian Islands, providing for his family. In the Castro, he lived a second life as a gay man. Peter wasn’t always happy with the arrangement, but he was deeply in love from the moment they met.
Not long after he was diagnosed, Peter began battling his own disturbing symptoms — rashes that wouldn’t heal, colds that lingered. He became obsessed with keeping himself alive, signing up for every clinical trial he could, trying every experimental drug: AZT, an early antiretroviral that offered the first real thread of hope but proved too weak on its own; and Compound Q, a Chinese cucumber extract that caused some patients to lapse into comas.
Barry died in early 1994. He was Peter’s only great love. By then he was divorced, and it was Peter who cared for him to the end. He’d lost close to 100 pounds from the wasting caused by AIDS. “It was horrible, just horrible, to watch the person you care about go through that,” Peter said.
Though Peter kept fighting for his own life, he remained convinced that AIDS would eventually kill him, too. Not long after Barry’s death, he cashed out his share of the travel agency. He decided he might as well check out on his terms. Instead of chaining himself to a business, he’d travel and enjoy the time he had left.
“If I’d died when they told me,” he said, “I would have died a wealthy man with a successful business.”
Instead, more than 20 years later, the choices he made then have had consequences he couldn’t have anticipated for a future he never expected to see. With little income and no savings, he could no longer afford the city he called home.
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| Kevin VandenBergh lives in an apartment high on Market Street with an impressive view of San Francisco and the bay. But he rarely ventures out into the city. Photo by Tim Hussin |
H
idden under the bed in his Market Street apartment is the source of Kevin VandenBergh’s greatest pride and deepest regret.
Reading it aloud, he couldn’t help but marvel a bit at his own words. He was a talented writer, no denying it. And then, suddenly, he was angry.
“This is who you were,” he said, his voice hard and unforgiving. “Where did you go?”
Thirty years ago, Kevin was a promising psychology student at the University of Chicago. His instructors lavished him with praise. In the margins of his papers they scrawled notes: the best student they’d seen in years, so gifted he was almost beyond critique. He would excel in graduate school, they said, and was poised for a career in academics or writing.
It was heady stuff for a young man from a working-class family; just getting an undergraduate degree had seemed a huge reach. But he’d begun to believe it was possible.
Then Kevin tested positive for HIV. At 27, he felt he’d been handed a death sentence.
The idea of graduate school vanished. “I thought, why bother?” Kevin said. He took a job as an entry-level computer programmer so he’d have health insurance and a steady income while he awaited the inevitable.
“In 1987, my life skittered off,” Kevin said. “It’s been a disaster ever since.”
In a support group for people diagnosed with HIV/AIDS, Kevin met men his age who were — going blind or suffering dementia from HIV invading their brains, or barely able to walk anymore. It was more terrifying than helpful.
Every day he expected to begin failing himself. He took experimental drugs, signing up for clinical trials and seeking out underground buyers’ clubs for medications not yet legal in the United States. Eventually, he began experiencing odd neurological symptoms — shaky hands, a stiff, awkward walk. Tests showed he might have an AIDS-related infection in his brain.
He quit work immediately, and followed a boyfriend to San Francisco soon after. That was in 1994. He’s been on disability ever since.
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| Kevin VandenBergh is largely isolated in his San Francisco apartment. But every now and then he volunteers at the San Francisco SPCA, where he helps socialize kittens. Photo by Erin Brethauer |
Now 56, Kevin doesn’t have a job and rarely writes. He spends hours by himself in his apartment overlooking the Castro. Sometimes he’s there all day.
If he’d thought there was any chance he would outlive AIDS, he might have stayed in school. He might have saved for retirement or bought a home. Instead, he said, “I was preparing all that time to die.”
Now money, not his health, is Kevin’s foremost worry. During the five years he worked, he paid into a disability insurance program that provides enough to cover his rent, food and small indulgences. But the policy will end when he turns 65, cutting his income nearly in half. Living on Social Security alone, about $1,600 a month, will mean he won’t be able to afford rent.
In many ways, Kevin’s situation is better than most — he currently takes home more than other long-term survivors who have been making do with Social Security for decades. But Kevin and others like him have become dependent on private disability and have no means for making up the difference when their policies expire.
city report estimated that up to 1,200 people with HIV or AIDS have private disability insurance that will expire at retirement age. Helping them stay in their homes or find new ones would require as much as $19 million in rental subsidies from the city over the next five years. But at the moment, the city has no plan to allocate that money.
Last spring, Kevin worked up the courage to speak before a Board of Supervisors committee about his money problems. But he’s doubtful that there will be help coming. City leaders seem concerned, he said, but he and his peers would be easy to overlook, to forget.
“It’s a cohort that is just shuffling offstage and will be gone at one point,” he said. “Then AIDS is over and it’s not a big deal.”
He’d like to work again, but his health is an obstacle — he fatigues easily; his anxiety is often so bad that full-time employment seems impossible. In any case, he said, “Who’s going to hire me?” His computer skills are outdated, and he has no recent experience. Working also would mean forfeiting his disability income, a risk he feels he can’t take.
He feels trapped, he said. The path he’s on now was laid decades ago, when he gave up his ambitions and any chance at a career in a field he loved.
“That was a life that I was supposed to at least try to have — to achieve something I could be proud of,” Kevin said.
Among the papers in the box beneath his bed is a speech Kevin gave at his high school graduation. Every man is responsible for his own happiness, for choosing to seek joy, he wrote. He’d like to be that man, he said. But he doesn’t know how.
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| As AIDS ravaged San Francisco, and killed two men he loved, Ganymede isolated himself in his home in the Oakland hills. He swore he’d never fall in love again after his second partner died in 2006. Photo by Erin Brethauer |
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itting on the patio of his home in the Oakland hills, the afternoon just giving way to the evening’s cool, Ganymede smoked a cigarette and laughed, recalling some embarrassing incident from a road trip made ages ago. And then he said a name, and his smile disappeared.
He put a fist to his mouth, closed his eyes. The tears came without warning.
At 60, Ganymede has survived the deaths of two lovers and countless friends, and his own battle with AIDS. Though both his partners have been gone for many years now, his grief remains close to the surface. A certain song, a particular photograph, sometimes just the mention of a name can set him weeping.
Still, he said, “I’ve been so blessed.” He has his home, a family, and a perspective not often granted to someone only on the cusp of old age, one shaped by a life that’s been both tortured and full of love.
“I had so much passion and joy and happiness, and the price has been terrible sorrow and loss,” he said. “I’m certainly willing to pay that price.”
Ganymede was born Jeffrey Andrews. In his early 20s, while living in San Diego, he went to a psychology lecture that touched on the archetype of the hero in Greek mythology who stood for love unbound by gender. He identified so strongly with the character that he changed his name.
Not long after, in the summer of 1984, Ganymede sailed from San Diego into San Francisco Bay with his lover, Alain Auras. The two shared a fascination with the union of sex and spirituality, and in the coming years would build a community of queer men and women with similar interests. Their community became a kind of family, one that would be eviscerated by AIDS.
Over the next decade, Ganymede tended to more deaths than he could count. He had always ministered to the spiritual needs of his group, so he was called to his dying friends’ bedsides, praying with them through their last breaths.
He and Alain both tested positive for HIV in 1985, the same year they bought the house in the Oakland hills. Ganymede remained relatively healthy; Alain did not. “I spoon-fed him water on the day he died,” Ganymede said.
That was at the peak of the epidemic, in 1992. Later, as the deaths from the epidemic finally slowed and the wave of suffering started to recede, Ganymede fell in love again. His new partner, Steven Brown, was also HIV-positive.
Ganymede persuaded Steven to leave his Twin Peaks apartment and move to Oakland, to try to heal together away from the battlefield San Francisco had become. Steven filled their home with his collections — painting and drawings, books on sex and therapy and religion, lush ferns that Ganymede still tends to today.
Ganymede embraced their isolation. He pulled away from what remained of his community, from friends he’d relied on while Alain was dying. He and Steven leaned into each other.
“We were pillars standing amidst the ruins,” he said.
When effective HIV arrived in 1995, their vision of a future together truly seemed possible. The development of antiretroviral drugs called protease inhibitors had a sudden and dramatic impact on the epidemic. Deaths from AIDS in San Francisco dropped from nearly 1,500 in 1995 to just 424 in 1997. Three years after the drugs came along, the Bay Area Reporter, a weekly gay newspaper, ran a banner headline: “No obits.” For the first time in 15 years, there were no deaths from AIDS to report that week.
But AIDS could still grab hold. The drugs kept Ganymede alive, but they couldn’t save Steven. The virus in his body was too deeply rooted, his immune system too broken.
Losing Alain had been terrible, but Steven’s death in 2006 broke Ganymede’s heart in a way that felt beyond repair. He’d allowed himself to feel safe with Steven. He thought they’d survived.
In his grief, he drew further away from his friends. He’d quit his job as a software programmer to care for Steven, so had lost that structure, too. Soon after Steven died, in quick succession, Ganymede’s mother died, and then his cat. He’d never felt so alone.
“I didn’t want to be here with so much sorrow and loss, and not just Steven, but the whole legacy of sorrow and loss,” he said. “I felt resentful that they all left, they got to be free of their pain.”
He stopped taking the drugs that were keeping AIDS at bay, and braced for whatever future might come.
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| Jesus Guillen has tried not to let his health, in particular chronic pain, slow down his lifestyle. Last fall, he danced at a party for long-term AIDS survivors in San Francisco. But fatigue finally caught up with him, and he ended up leaving an hour or two before the dance ended. Photo by Tim Hussin |
J
esus Guillen doesn’t look like a man in pain.
He has an easy smile and carries himself like a dancer. His hair is often dyed — bright pink one day, platinum blond another — and his face is unlined and relaxed. The pain shows through, though, in a tightness around his eyes and the way he rubs his leg, firmly but absently, as if he’s not aware he’s doing it.
Nothing relieves the pain in his legs entirely. Some days he can cope with it. One Saturday in January he celebrated his 56th birthday — and 30th year of living with HIV — with a party in his home, playing guitar and singing until midnight. But most days, the pain drives him to tears. It can be exhausting, sapping his energy and making even a meal with a friend seem impossible. It’s kept him out of work for 10 years.
When he tested positive for HIV in 1986, Jesus was just 26, a naive young man from a small town in Mexico who’d moved to Los Angeles to make a new start, hoping for a career in acting and singing. He got tested after learning that someone he’d slept with had died of AIDS. He assumed he would soon die, too.
Yet he remained mostly healthy for many years. He began antiretroviral therapy in 2000, but either the drugs or the HIV left him with mild neuropathy — nerve damage that caused a numb, tingling sensation in his leg.
Then in 2007 he found a lump in his neck. It was lymphoma, a type of cancer that’s been linked to long-term infection with HIV. The chemotherapy treatment was harsh, probably made worse by his weakened immune system.
He managed to knock back the cancer, though, and avoided new AIDS complications. But the experience left him with chronic anxiety — a common problem among AIDS survivors and a symptom of post-traumatic stress disorder. Since his cancer, he has had insomnia and a recurring nightmare.
“Every night is the same dream,” he said. “I’m trying to turn on the light and I can’t.”
The cancer treatment also worsened his neuropathy, contorting it into severe chronic pain. Together, his ailments sometimes make Jesus feel far older than his years.
Doctors and scientists are beginning to understand that longtime exposure to HIV, even in those who seem to remain otherwise healthy, may cause More than a third of all people infected with HIV also have viral hepatitis, which can cause severe damage to the liver. The drugs themselves can harm the liver and kidneys too.
Frailty and mobility difficulties, typically afflicting people older than those in their 50s and 60s, are common among AIDS survivors in that age group. They also have higher-than-expected rates of heart disease, diabetes and a host of other age-related disorders.
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| When Jesus Guillen first moved to the United States from Mexico, he worked for a while as an actor and singer before becoming disabled by AIDS-related pain. Now he uses art to mask his pain. Last September, he sang at a talent show at the Mission Cultural Center for Latino Arts. Photo by Erin Brethauer |
A UCSF study of older HIV-positive men released in 2015 found further evidence that these patients suffer signs of early aging. Nearly half were suffering cognitive impairment. More than a third had some vision loss, and 14 percent were hearing-impaired. One in 4 had suffered a fall in the previous year — a sign of frailty.
Why HIV/AIDS survivors are experiencing early effects of aging isn’t entirely understood, according to the study’s lead author, Dr. Meredith Greene, a UCSF geriatrician. What’s clear is that the type of care that long-term survivors need is significantly shifting.
“It’s not just about HIV anymore,” she said. “We’re dealing with multiple, chronic medical conditions.”
Jesus was able to strike one item off his list of AIDS-related afflictions: hepatitis C. He’d been infected for many years, but with a new, exhaustive drug therapy he was able to cure it last year.
Two months into that treatment, he was sitting in his sunny Hayes Valley apartment, thinking how nice it would be to have one less ailment to worry over. His home, a warren of brightly painted rooms filled with his photos and artwork, is his sanctuary. On days when the pain is too intense or he wakes crying from nightmares, he meditates here.
With his cat, Mija, for company, Jesus said he doesn’t get lonely, but worries about being alone. What will happen if his cancer returns, if AIDS rears up again or if his pain becomes even more disabling? Whom will he turn to if he needs help?
He knows he should have a living will and someone appointed to make tough decisions about his care. His mother in Mexico is too far away, and it seems like too much responsibility to put on even a good friend.
“I keep thinking a partner should do that,” Jesus said. “And I don’t have a partner now.”
He does have close friends, people he calls family. He’s active: singing at neighborhood talent shows and fundraisers, visiting local fairs and festivals to dance or take photos. In recent years he’s taken up activism, in particular to support long-term survivors of HIV/AIDS. He volunteers nearly every day with groups trying to draw attention to their cause. Last summer, he started a Facebook group for long-term survivors that now has more than 1,400 members.
But he longs to feel more useful — for a life beyond AIDS. He wants to work and to share his art and his music with a wider audience. He wants to fall in love. He wants to be seen and embraced.
“I’ve had so much on this Earth: family, friends, creative things, studying. But that’s something I’m missing. I always wanted to be married and have a family,” Jesus said. “If that happens, it’s beautiful, and it’s enough.”
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| Slowly, a generation of long-term survivors is reuniting after living through the worst years of the AIDS epidemic. Kevin VandenBergh (center) sometimes has to talk himself into joining other survivors at dances, but he knows it’s important to step out of his self-imposed isolation. Photo by Erin Brethauer |
A
long with the physical pain and illness, the lingering grief and the anxiety, isolation is a particularly bitter side effect of survival.
Just how many survivors live largely in seclusion is difficult to determine. These men often aren’t tapped into for people with HIV. They’re hard to reach, hard to count.
They don’t have jobs that offer structure. Their parents may be dead, and other family ties severed long ago. They don’t have children. Their only connections to the larger world may be tenuous and brief — phone calls with fellow survivors, an appointment with a therapist or doctor, small talk with a cashier at the corner store.
Isolation creates both psychological and practical complications. It brings increased risk of depression, anxiety and other mental health problems. Those without partners often have less income, making them more vulnerable to financial crises, like , or the stress of a rent hike or unanticipated expense. Those who lost loved ones during the epidemic may still feel too brittle, too emotionally damaged, to form new relationships or friendships. Just the risk of losing someone again can feel too dangerous.
From his apartment window, Kevin VandenBergh has a view over the dips and swells of San Francisco to downtown and across the bay to the Oakland hills. On a clear day, Mount Diablo juts into the horizon. But Kevin hardly seems aware of it. He rarely ventures outside.
For years, his social life has been thin. He has a roommate, but they don’t get along. There’s a weekly lunch with an ex-boyfriend, the staff he sees at the animal shelter where he sometimes volunteers, occasional meetings with an informal support group for long-term survivors. But just working up the will to go out each time is a struggle.
In his living room, the only obvious signs of his presence are a stack of DVDs of favorite TV shows and mementos of his beloved cat, Truman, who died two years ago. A framed photo of Truman sits on a shelf; the cat’s tall, carpeted play structure stands in one corner.
Out of work for more than 20 years and alone for much of that time, Kevin is awkward and tense in social situations. He often over-shares, only to become self-conscious and withdraw. He fidgets, his hands in constant motion — rubbing his thighs, knotting his fingers, tugging at his clothes.
When he meets new people, he dreads the moment when they ask what he does for a living.
“I feel like my life has been a total waste,” Kevin said. “I’ve accomplished nothing. I have nothing to offer.”
MICK ROBINSON
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| Still standing despite AIDS and addtiction. |
Years ago, after he tested positive for HIV, Kevin constantly feared rejection from other men. He would feel indebted to potential partners who accepted him, even if there wasn’t a spark of romance. These days, dating men his age can feel like a minefield, so he’s largely avoided it. Everyone’s damaged. Everyone carries baggage.
For 10 years, Truman was his . He talked to the cat constantly, confided his thoughts and feelings. When he was so depressed he stayed in bed day after day, Truman was there, curled up at his side.
“He was the love of my life, the most intimate relationship I have ever had,” he said. “He was my reason for living.”
Truman’s death hit Kevin harder than that of any friend he’d lost during the epidemic. When Truman died, Kevin started thinking seriously about suicide. He made a plan.
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| Peter Greene opened his Castro travel agency, Now, Voyager, early in the epidemic, and later sold his share to his business partner, Jonathan Klein. But he continued to be involved, and more recently took it over once again. Photo by Tim Hussin |
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hen Peter Greene opened the Castro travel agency with Jonathan Klein in 1984, it was among the first catering to gay men, who were just starting to travel openly in couples and in groups. The business partners came up with the idea while on a gay bike tour of China that Peter had organized. They named the agency Now, Voyager, after a classic Bette Davis film.
They’d co-owned the agency on 18th Street for a decade when Peter decided to cash out and sell his share to Jonathan. But he was still involved; his apartment was right above the office, and he’d sometimes pitch in when Jonathan was away.
The two men remained close, though there was never a romantic spark between them. They’d always shared a love of travel and adventure. They’d both been popular figures in the Castro, circling many of the same social scenes.
One early spring night in 2013, they went with a group of friends to the Castro Theatre to see the comedian Coco Peru. After the show, not ready to let the evening end, they walked to Peter’s apartment. Jonathan played host, setting out cheese and crackers, decanting wine, keeping everyone’s glasses filled.
Jonathan, his friends knew, had been under increasing stress in recent months. He’d lost his apartment when the building was sold and been forced to move out of the city. The building housing Now, Voyager and Peter’s apartment also was up for sale, and Jonathan worried both that his business might fold and his friend might also lose his home.
So on this night, his friends were heartened to see him gracious and witty, his old charming self. No one knew he was saying goodbye.
“He’d already written his suicide note,” Peter said. “He already knew what he was going to do.”
Two days later, on a cold April morning, Jonathan drove to the Golden Gate Bridge. He parked, walked out on the span and jumped to his death. He was 61.
Jonathan had tested positive for HIV in 1985, the same time as Peter. It wasn’t AIDS that killed Jonathan, and it wasn’t AIDS, at least not entirely, that drove him to suicide. Before depression and a host of anxieties, he’d been one of the survivors.
Not long after Jonathan’s death, the 18th Street building was sold, and Peter was forced out of his apartment. Now, Voyager, which Jonathan had willed to him, was displaced too. Suddenly Peter, like his friend before him, was being pushed out of San Francisco, his home for more than 30 years.
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| Peter Greene lost dozens of friends during the worst years of the AIDS epidemic, but the losses kept coming even after HIV became a treatable disease. In 2013, his longtime business partner and fellow AIDS survivor, Jonathan Klein, committed suicide. Photo by Tim Hussin |
He would never consider suicide, Peter said. But he was scared about being cut off from everyone and everything familiar. He saw no easy answers to the knot of problems before him.
“It was the perfect storm for him,” he said. “Sometimes it feels that way for me.”
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uicide has been an escape from AIDS since the epidemic began. In the horrifying, hopeless early years, men would hoard drugs to end things themselves before AIDS could kill them. Some would throw themselves farewell parties.
But even after antiretrovirals came along and AIDS no longer meant certain death, the suicides didn’t stop. Between 2009 and 2012, suicide accounted for 4 percent of all deaths among people with HIV or AIDS in San Francisco — a rate far above the overall national average of about 1.5 percent of all deaths.
Though HIV drugs now are widely available and much easier to tolerate, it’s not uncommon for survivors to stop taking their medication — for days, weeks or months — in what may be less an overt death wish than a retreat from a life so fractured. Nearly half of survivors suffer bouts of depression, studies show. For many, suicidal feelings may be triggered by loneliness and isolation, or by grief that can seem never-ending.
When Ganymede stopped taking his HIV drugs, his doctor asked him if he was suicidal. “I just don’t want to hurt anymore,” he answered.
It would take him years to spin out of his grief over Steven’s death, to decide that he could be someone other than a man consumed by sorrow. “In the face of such adversity and wanting to give up, you have to choose — you have to make a choice to be happy, to be grateful,” Ganymede said. “That was a very difficult journey for me.”
By the time he decided to live again, though, his health was failing. His immune system had crashed; restoring it was a long, painful ordeal. For months in 2009, he received daily infusions of drugs, and was in and out of the hospital all year.
As he recovered, he resumed relationships with old friends who’d also survived the epidemic. He reclaimed the lonely home he’d shared with the two lovers he mourned. He kept mementos of them in every room, but started thinking toward the future.
He was determined, though, to resist falling in love again. He couldn’t imagine bearing any more loss. But in 2010, at a sex party in San Francisco, he met someone. “By the end of the evening, I knew this was my next chapter,” Ganymede said.
 |
| Ganymede (right) once said he would never let himself fall in love again. Then he met Cullen Frandsen. The two men married in 2013, and they share their Oakland home with a third partner, Warren Page. Photo by Erin Brethauer |
A month after they met, Cullen Frandsen moved into Ganymede’s home. Two years later, Cullen’s former partner, Warren Page, moved in with them. Ganymede and Cullen married in 2013, in a ceremony in their living room.
“First I moved in my boyfriend. Then I moved in his boyfriend,” Ganymede said with a laugh, sitting in the sun with Cullen and Warren, smoking pot and cigarettes and sipping iced tea on their patio. “Which does not even begin to describe the relationship. Now it’s family. We all love each other.”
Both Cullen, 58, and Warren, 69, are also HIV-positive. For Cullen, though, it’s been a far different journey. He tested positive in 2005 and went on antiretrovirals within days. He hasn’t experienced AIDS as a death threat, has never lost a lover or close friend to AIDS.
And so, even as he embraces the future again, Ganymede worries about it in a way that Cullen does not.
“I live in fear that this time, I will be the one who leaves behind a partner.”
 |
| David Spiher (left) met Ralph Thurlow in 2004, not long after Ralph tested positive for HIV. Their life in the East Bay was mostly happy and uncomplicated until Ralph’s health took a turn. Photo by Erin Brethauer |
I
n early 2013, David Spiher and Ralph Thurlow were spending a quiet night at their Hayward home after the chaos of the holidays. Sitting at the kitchen table, their cats weaving between their legs, they played cribbage, a favorite card game.
Ralph looked over the cards he’d been dealt. To finish the hand, he needed to add up a five and an eight. He couldn’t.
“What’s five and eight?” David prompted. Ralph stared at his cards.
“Do you know what five and eight make?” David asked again, gently.
“Give me a minute,” Ralph said.
“It took an inordinate time of my life, him not answering,” David said later, recalling that night.
For two men who had survived the scourge of AIDS in relatively good health, that evening transformed what had been a mostly simple, happy life. The disease, they would soon learn, had reached Ralph’s brain.
David, who has been HIV-positive since 1985, spent much of his life convinced AIDS would kill him — that he wouldn’t outlive his dog, never mind own a home or grow old with someone. But medical science helped save him. He’d like to believe it can save the man he loves.
They met 12 years ago at a meeting for recovering alcoholics in Manhattan. Ralph, newly diagnosed with HIV, was panicked. Feeling scared and alone, he announced to the group of strangers that he’d tested positive.
At the end of the meeting, David introduced himself. “You’re going to be OK,” he told Ralph. “You’re going to live.”
They started dating about six months later, and moved together to the Bay Area in 2006, when Ralph, a veterinary surgeon, got a job caring for animals in a research lab. They made new friends and started a new life. They bought a small house and filled a large yard of tangled gardens with dozens of animals. David found work at a private school in Oakland. They were alive, and they were healthy.
They’re an odd couple, a fact both acknowledge and enjoy. David, 57, often seems laid back — he wears well the rumpled look of an artist — but has the spit and fire of a New Yorker. Ralph, 56, is small and compact, his sharp eyes serious behind his glasses. He’s quiet until he’s not, and then will tell his life story, slipping in wry details without cracking a smile.
The cribbage game that night made it clear something was wrong with Ralph. He’d lost his job a few months before, and David had figured it was just a layoff due to the economy. Ralph later admitted he’d been struggling at work, needing a calculator to add grams as he measured drugs for his animals. He’d told himself it was just from getting older, and if it was something more serious, it wasn’t anything he wanted to think too hard about.
They saw the first doctor in February 2013, kicking off a year and a half of testing and visits with specialists. Finally, Ralph was diagnosed with
HAND can occur when HIV breaches the nervous system. Most people experience relatively mild cognitive symptoms that can impair memory, language and decision-making skills, but are still able to go about their daily lives. Ralph has a more severe form that causes dementia and is ultimately fatal. Before he dies, he will lose the ability to walk, to speak, to bathe or feed himself. His prognosis, doctors say, is five to seven more years.
David has taken ownership of Ralph’s medical care, working for months to get him on disability. To deal with his stress, David paints — portraits and scenes from their life, splashy, colorful oils that are both painful and beautiful to view.
There are days no one but David can tell there is anything off about Ralph. Other days, Ralph clearly struggles for words, clutches at memories that are slipping away. He can drive and shop, clean the house and care for their animals. But a few months ago, David realized that Ralph had stopped cooking lunch for himself. He was afraid of starting a fire.
Ralph would gladly take an experimental medicine — anything that might help him and add to research around his dementia. “If there was a clinical trial I’d go on it,” he said. “I’d go on all of them.”
But there are no drugs that can save Ralph — not yet. After the global AIDS community fought so hard to find antiretrovirals and other drugs to fight HIV, it feels to David that long-term survivors like himself and Ralph have been left adrift.
Still, David has seen miracles. That he’s alive today is one. So he tells himself a lot can happen in the time doctors say Ralph has left.
“On some level I don’t lose heart,” David said. “I can’t decide for myself that it’s over and done.”
I
n a drab corner conference room in a city building at Van Ness Avenue and Market Street, Jesus Guillen and a dozen other AIDS survivors arranged themselves in faded chairs.
Jesus had been anticipating this December afternoon for months. His group was there to meet with San Francisco’s Long Term Care Coordinating Council, an advisory group to Mayor Ed Lee on care for the city’s elderly and disabled. It was their first chance to reach the mayor’s ear.
The meeting began, and members of the group laid out a list of demands: They need help with housing; improved mental health services; better access to health care; help with legal, financial and employment services. To begin of older survivors and to boost mental health aid, they said, would cost $175,000.
The council members made a few inquiries; there was some polite discussion, and then a vote. The council agreed unanimously to endorse their requests.
But then a question: Why aren’t you asking for more? the council members said. What they’d requested amounted to just $29 for each of the city’s 6,000 long-term survivors. Surely that was far from enough.
HARRY BREAUX
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| At 70, still battling for survivors like himself. |
The man who led the presentation, Vince Crisostomo, spoke up. The time will come when they’ll aim higher, he said; in fact, a few weeks later, the group would increase its request to $1 million. But first, he told the council, they need assurance that someone is really listening.
It hasn’t been easy to rouse his fellow survivors, he said. At the San Francisco AIDS Foundation, where he leads an informal support group, he’s sometimes asked if anyone thinks they’re worth the effort. Whether it would just be easier to ignore them and let them die.
Yes, you matter, he tells them. You’re the last of your generation. You hold all of its memories, all of its history.
“I tell them they need to speak up,” he said to the council. “What good did it do to survive if you’re just going to sit in a room and let life pass you by?”
Some of these men fought in the AIDS battles of the 1980s and 1990s. They protested in San Francisco and in Washington, D.C., screaming for attention, for treatment, for resources and support.
In the earliest years of the epidemic, the federal government allowed homophobia to guide policy, doing little to inform the public or fund basic research. But in San Francisco, pleas for aid were rewarded with support from city and public health leaders. That established a grassroots network of care, called the San Francisco Model, now emulated worldwide.
 |
| Jesus Guillen wakes up every morning in pain from neuropathy. He’s turned his Hayes Valley home into a colorful sanctuary to help alleviate the pain when narcotics aren’t enough. He tries to stay active too, especially by volunteering to help other long-term AIDS survivors. Photo by Erin Brethaue |
In the decades since, the needs of those earliest patients have changed, as has the city’s model of care. The focus has shifted to for younger people and the newly infected, with the ultimate aim of ending the epidemic.
Long-term survivors feel they are being ignored again. Only in the past year or so have city leaders and health care providers begun .
“We as a community are starting to have awareness. More will happen,” said Supervisor Scott Wiener, whose district includes the Castro.
“But we’re in the early stages, and we’re definitely behind.”
Jesus wasn’t an activist back in the epidemic’s early days. But over the past several years, watching so many of his peers struggle, he has been moved to act.
As he slipped through middle age, he started thinking of his grandparents and other elders, of how much he admired and respected them when he was young. He doesn’t sense that admiration from the gay community, not even in San Francisco. He hates to see men who already have struggled so much feeling tossed aside.
Creating the list of demands for the mayor’s advisers was important work, but it often felt futile, too. Jesus and the spent months talking passionately among themselves, but no one else — no one who could actually accomplish anything — seemed to be listening. Meeting with the mayor’s council was a critical step. But he wonders what, if anything, will happen next.
“Some of the things we mention now are the same things that we mentioned five years ago,” he said. “And they never went anywhere.”
 |
| It’s hard sometimes for Kevin VandenBergh to venture outside, and dances for long-term survivors provide a rare opportunity for connection with other people. Here, he hugs a friend at the end of a dance at the Episcopal Church of St. John the Evangelist in the Mission. Photo by Erin Brethauer |
K
evin
VandenBergh entered the Episcopal Church of St. John the Evangelist
before the music started. It was a warm Thursday night, and he was among
the first to arrive for a casual dinner-dance for long-term survivors.
As always, he was nervous, hands shaking, talking a bit too fast. He almost walked out. But then a man he’d met once or twice took him by the arm and steered him to a table. Within a few minutes, he’d persuaded Kevin to march with a contingent of long-term survivors in the Pride Parade a few days later.
Soon Kevin was dancing, feeling overstimulated but happy that he’d stepped outside his quiet, lonely life. He danced for a few hours before leaving, but he’d gone only half a block when a familiar song lured him back inside.
It was “I Will Survive,” a song he’d loved to dance to at clubs in his native Chicago in the late 1970s. Later, he’d smile sheepishly at how fitting the song was. But in the moment, the song and the happy memories it carried made him want to celebrate just a little longer. And when the lights in the church finally came up, Kevin was still there — sweat-drenched, beaming, one of a handful of men still on the dance floor.
Three days later he marched in the Pride Parade, holding up a banner declaring “Love Heals.” Carrying the other end of the banner was John, a man Kevin met at the dance. They’d clicked; Kevin made John laugh. They marched down Market Street together, Kevin cheering himself hoarse, waving at the crowds and pumping his fist in the air.
The parade dumped them in Civic Center Plaza, where they were swallowed by the crowd. Kevin reached for John so they wouldn’t lose each other.
“And all of a sudden I realized, we were holding hands,” Kevin said. It’s weeks later, but his eyes are bright with the memory. “I can’t tell you the last time I held someone’s hand.”
 |
| Ganymede (center) has built a new family with his partners, Cullen Frandsen (right) and Warren Page (left). Ganymede is the most fragile of the three of them, having lived with AIDS the longest. Warren and Cullen do most of the cooking and other chores around their house, though Ganymede’s strength has been improving and he’s helping out more. Photo by Erin Brethauer |
S
ome
days, Ganymede can hardly believe that he got another chance to fall in
love, that he has built a new family — vibrant Cullen to argue and
laugh with, Warren to bake chocolate chip cookies on a too-hot summer
day.
It’s clear, though, that Ganymede is more fragile than his partners. Neuropathy makes his feet tingle constantly with pain; scars from a skin infection brought on by immunotherapy drugs cover his shins.
His body is often stiff and painful, and he’s easily fatigued. He’s been gaining strength lately — he’s walking more, able now to negotiate the steep stairs to his home without a cane — but Cullen and Warren still do most of the cooking and cleaning. For a long time, Ganymede felt useless in his own home.
His libido has faded too. He misses some of the activities that were once so key to his spirituality. Though he still has sex, he’s found comfort in a gentler sort of physical intimacy.
He only just turned 60, “but I feel closer to 70,” he said.
Ganymede tries to be patient with himself and his infirmity. Every morning, when he wakes to the aches in his legs, he tells himself to be grateful. To choose to be happy.
“I get to go through the awful process of aging with this disease that literally 100 of my friends never got to do,” he said. “They never got the chance to do even this.”
 |
| Peter Greene was forced out of San Francisco, his home for more than 30 years, to Palm Springs. But he missed the city, and spent all of last summer with his friend Eileen Glutzer at her San Francisco home. He said goodbye to her cat before he left in September. Photo by Tim Hussin |
P
eter Greene stretched out on a red granite rock at the edge of Tahquitz Canyon, head pillowed on his day pack, booted feet dangling over the edge, eyes squinting into a perfect blue sky. Below him was the desert, the oasis of Palm Springs cradled neatly in the valley.
“Today,” Peter said, closing his eyes as if he could nap right there, “is a nice day. I’m out here and the sky is blue and I feel good. I can’t think about the next day. Or the day after that.”
He moved to the desert two years ago, after losing his apartment in the Castro. A few close friends helped buy him a mobile home; it’s small but charming, tucked against the base of a mountain, walking distance from this canyon where he likes to hike.
But he hasn’t been happy here. Though there’s a community of older gay men in Palm Springs — many of them survivors, too — Peter has felt like an outsider. The quiet monotony of desert life doesn’t suit him, he said. San Francisco, where he’d lived for more than three decades, was still home.
“I was banished from the kingdom I knew,” he said. “I don’t have a purpose here. And I want the time I have left to matter.”
Even on beautiful days like this one, he found himself thinking constantly about the city, dreaming up fantastical, maybe impossible, plans to somehow get back again permanently. He’d need to find an affordable apartment, maybe get a roommate. The travel agency, which was barely staying afloat, would have to make money again.
He spent all of last summer in San Francisco, bunking with a woman who was once his nurse but long ago became a friend. He was there for Christmas, and for a few days after the new year to look after Now, Voyager.
His last trip was in early February. He saw the doctors who are familiar with his complex medical history and have treated him for almost all of his adult life. He sang at Martuni’s, the Market Street karaoke bar where the pianist knows all his favorite songs. He had dinner with a friend, one who still remembers Peter as a brash, dashing young entrepreneur.
Back in Palm Springs, he began feeling ill. He went to the emergency room of the Desert Regional Medical Center, complaining of nausea, a rapid heartbeat, confusion, pain. Tests showed internal bleeding, and then that his liver was failing due to complications from hepatitis B. He was moved to the intensive care unit.
In text messages from the hospital, Peter wrote that he was scared and frustrated. “Just want to come back to San Francisco.” And later: “Whatever happens now, I know that I’ve had the best and that’s what’s kept me alive. At some point I just have to let the fates take me wherever.”
Early on the morning of Feb. 10, Peter died.
He had once admitted, quietly, grudgingly, that he was scared of dying alone. That he was afraid he’d be 500 miles from home, from the friends he called family, when the end came.
At times he’d allowed himself to feel bitter at the path that AIDS — that survival — had forced him down. But he’d always wind up laughing at his self-pity: He was, after all, still here. He wouldn’t give up on the unexpected life he’d been granted. Even if that life was in Palm Springs. Even if he never did make it back home.
W
hen David Spiher proposed to Ralph Thurlow in late 2013, Ralph responded with a quick and sincere no. He knew too many people with terrible marriages. Yet just a few months later, on Valentine’s Day, Ralph proposed to David.
He’d forgotten to buy a gift, David said with a grin. Ralph said he doesn’t remember that.
They married on July 25, on a sunny afternoon at the Zen center they attend in Berkeley, in front of 50 friends and family members. The grooms both wore white shirts and pants, with prayer beads around their necks.
In the corner of the room was a three-tiered cake shaped like the mountains around Yosemite Valley, a place they both love. Over one side spilled a blue frosting waterfall, and perched on top was a 3-D-printed sculpture made by an artist friend: David and Ralph sitting side by side in a rowboat, their hands grasping each other’s knees. The boat was suspended over the edge of the waterfall, against the current; their backs were to the turbulent, unknown future.
 |
| Ralph Thurlow (left) at first was reluctant to get married when David Spiher proposed, but he came around after a few months. The men were married at a Berkeley Zen center on July 25. Their cake was topped by a 3-D-printed sculpture of the two of them in a rowboat, poised on the edge of a waterfall. Photo by Leah Millis |
David gently guided Ralph through parts of the ceremony, whispering reminders to bow or turn, to grasp hands during the vows. Maybe it was just wedding day nerves.
These are not young men, the Zen master said as he began the service. The crowd chuckled, and the grooms smiled too. “These are two men who have lived a life,” he continued, “who understand the sadness and the suffering that’s connected with the deep well of love and passion.
“Probably the most important thing in a marriage is to be big enough to hold everything. If we can hold it then we’re not afraid of it. Please, in your marriage, hold your whole experience. All of it.”
Acknowledge and reflect on the largeness of life, the Zen master advised them. Then live it, day to day, breath to breath.
“Will you?” he asked the grooms.
“Yes. We can,” David said, his eyes on Ralph. Ralph paused. “We can,” he echoed.
“You can?” the Zen master said.
David laughed. “We do.”
“We do,” Ralph said, only a breath behind.
In a life defined by a plague and measured in loss and pain, in fear and loneliness, sometimes it’s the smallest steps forward, the briefest moments of gratitude, that matter most. Waking up to the sunlight. Taking someone’s hand.
Saying yes.
Read more articles from the San Francisco Chronicle, here.
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