A Changing Picture

It was April of 1995. Nine men, all HIV positive or with symptomatic AIDS, had come to a retreat at serene Zaca Lake in the Santa Ynez Mountains north of Santa Barbara. They sought inner peace, solace--and acceptance of their premature deaths, which seemed inevitable.

Ignorance about AIDS, and AIDS hysteria, were widespread, and it had not been easy to find a place that would welcome these men. Phyllis Shankman, founder of the sponsoring Mountains AIDS Foundation, had been turned down at eight other retreat centers. They would drive away other guests, she was told. We don’t want them using our towels, she was told.

In the years since, treatment with protease inhibitors, so-called pharmaceutical “cocktails,” has lifted the death sentence from many with AIDS or HIV. Today they struggle instead to chart the course of their lives long after they expected to be dead and buried.

In 1995, Charles Medina was 35 and had said at that first retreat: “We’re dying. Not that I’m giving up hope, but I haven’t met anyone who has been cured. I think it’s time we learn how to live with it, and learn how to die.”

Today, Medina said, “I’m playing the survival game, and I seem to be doing OK with it,” even though he had to stop taking protease inhibitors after a year because they caused devastating side effects, including nausea and fatigue.

Medina, who lives in Malibu and manages the Theodore Man boutique there, is, at 40, “more optimistic” than in 1995. “A lot of us are sort of on hold. We’re not dropping every day, although I lost my best friend recently, which really hit me hard. I thought these losses were on hold as well, but there’s still a lot of us who are dying.”

Arthur Shafer, 41 at the time of the first retreat, had shared his sadness about being denied the opportunity to “complete this journey” called life.

But today Shafer, 46, is also doing well.

“Physically, I’m great. I now have some T-cells and a pretty low viral load,” he said. “I’m pretty optimistic. The only cloud that I have is being my age and trying to get back to the work force. It’s daunting. Now that I have health, I feel like I should be doing something with it.”

Like Medina, he has been a volunteer for Mountains AIDS Foundation and for AIDS Project Los Angeles. Recalling the 1995 retreat, he said, “Death was on everyone’s mind because everyone was still dying.” Today, he added, “one has to think about the last time one went to a memorial.”

From ‘Kiss of Death’ to What Now?

Over the five days of that first retreat, the men, coming together as strangers, had shared their deepest fears. The conversation was laced not with hope but with resignation. David Kahea, then 31, a former flight attendant battling AIDS, touched everyone when he spoke of the “dark angels on my path.”

Kahea died of AIDS two years ago.

Steve Hayes, then 26, had shared his burden of being “very much alone with my dirty little secret . . . the kiss of death.”

Hayes killed himself last year. He’d lived with AIDS for a dozen years and, said Shankman, he “just couldn’t handle it anymore.” His final request was that his ashes be buried in the rose garden at Shankman’s Topanga Canyon home.

And so the nonprofit Mountains AIDS Foundation has shifted the focus of its six retreats annually--still held at Zaca Lake--from spiritual healing of the dying to helping those with the virus figure out, what now?

The retreats, said Shankman, are designed to give participants--about 12 per session--”the feeling that they are capable of creating a beautiful life for themselves again, using the learning they’ve gained from the HIV experience to create something for themselves where they can really be of service to the larger community.”

“There’s still an awful lot of doubt and fear, a lot of uncertainty, but there’s also a lot more hope,” Shankman said. “A lot of them are afraid about telling people they’re [HIV] positive--even today. In the workplace, you’re being asked right upfront, ‘Do you have an infectious disease?’ There’s also the issue about dating. ‘Do I tell people I’m HIV positive if I feel healthy?’ ”

As those with the disease on hold venture out from the AIDS community, said Shankman, a clinical social worker who has counseled people with AIDS since 1992, “They have a lot of anxiety about exposing their status. Will opportunities be limited if they tell people?” (Fewer than half of the more than 300 retreat participants hold jobs; most are on disability.)

“At one time,” she said, “everybody felt sorry for [people with HIV]. They don’t feel quite as sorry for them anymore. I think there was a fair amount of compassion because of the huge numbers who were dying, and because they were young and so attractive.”

And, said Medina, “there’s more of an attitude of let’s move on to the next disease . . . some people feel like they’ve already paid their dues to this disease, like it’s not a crisis anymore.”

The format for the retreats, the next of which is planned for April, remains essentially the same as in 1995, encompassing meditation, yoga, group discussions, rest and recreation, art and poetry. It remains a healing process, but one in which hope is now a major component. Participants’ fears surface in the discussion groups. Are the “miracle” medications going to fail them? Can they really count on having a future? And there is the grief over having lost so many years of their lives to the disease.

When Simon Warner, 36, an HIV-positive man living in West Hollywood, went on retreat in the spring of 1998, he recalled, “I’d lost a lot of friends to AIDS, and I was basically very suicidal, and it was very dark. I was thinking of killing myself quite a lot.”

But once at the retreat, he said, “for the first time in my life I actually felt love. It was a really life-changing experience for me.” And, he added, the program was free of “New Age fascism. Some of that New Age stuff makes you feel bad because you aren’t perfect. They weren’t trying to come across like, ‘Oh, you must think good thoughts. . . .’ ”

‘Renewed Sense

of Hope, Purpose’

Warner, who recently quit a warehouse job, has been on protease inhibitors for about 18 months and is responding well.

“The retreat helped bring me out of denial about my HIV,” he said. “I started taking care of myself.” He’s now a foundation volunteer.

Ron Gelb, a Los Angeles psychotherapist who coordinates the retreats with Shankman, is a gay man who has counseled clients with HIV and AIDS since 1985 and in 1991 lost his partner to AIDS.

“It’s a very confusing time,” he said. “Some people, the majority, are responding very well to treatment; some are not doing well at all.” He cited side effects from the drugs, including heart disease and diabetes.

These issues are discussed at retreats, as are such nitty-gritty financial matters as the unsettling specter of losing long-term private disability insurance by returning to the workplace. Another common fear: not being able to handle the stress of a 9-to-5 job.

“People who are newly diagnosed have a much more hopeful sense,” Gelb has found. “But we have people who two or three years ago really were near death’s door. They’re a bit more guarded. And, there is a little more skepticism than there was two or three years ago. The death rate dropped dramatically in 1997 and 1998. Now it seems to have leveled off.”

Nevertheless, Gelb said, at retreats the shift is decidedly away from facing death with grace toward “how to make this a more livable disease, emotionally and spiritually.” That includes dealing with parental issues and with depression. The approach is that some healing comes from inside. “Once you have that groundedness, you can challenge yourself a bit more. When people are confused and anxious and fearful, it has a profound effect on their physical well-being.”

He added, “People really do come away with a renewed sense of hope and purpose, and more fight in them. I think that’s worth its weight in gold. Medications may keep them alive, but that doesn’t mean that they’re living. Staying alive is not worth a hill of beans unless you are living with a sense of hope.”

About 20% of retreat-takers are women. One recent participant was “Sally,” a 32-year-old Los Angeles woman who asked for anonymity because only her mother knows she is HIV positive. She has kept her secret for fear of losing her job, and to protect herself and her boyfriend, who is free of the virus, from gossip.

“The retreat actually gave me back my sanity and my life,” said Sally, who contracted HIV through a relationship with a married man who had assured her he had tested negative.

She spoke of the prejudice she encountered as a middle-class white woman newly diagnosed with HIV. “You’re seen as a slut if you have it.” But at Zaca Lake, in the company of HIV-positive men, she found “there was no shame, no judgment. It just inspired me.”

At a retreat, she added, “You’re free to fall apart, if that’s what you need to do. When I got the virus, there was no me left. I felt like a leper. I was able to separate that. I’m someone who has a virus, but that doesn’t mean I don’t have all the qualities I had before.

“Those men I met there were some of the bravest human beings I’ve ever met. What they’ve seen in the last 14 years, men dying right and left--and they can still wake up every day and hope and be happy. I really learned a lot from them.”

Jeffrey Erdman, a Los Angeles attorney and a gay man in his third year as board chairman of the Mountains AIDS Foundation, oversees a budget of $106,800 for next year, the lion’s share earmarked for retreat scholarships. (Ninety percent of participants attend on scholarship.)

“By taking people into this serene, natural mountain setting where there’s no phones, no television . . . for the first time they begin to start sorting through the issues in their heads,” Erdman said.

A Program

With Open Arms

Although the vast majority of retreat participants are men with HIV, the program is open to anyone with a life-challenging illness and has included women with breast cancer.

“There’s nothing about the program that’s disease-specific,” Erdman said. “It really works with anyone who’s facing these tremendous challenges in their life.”

Six years since its founding, the foundation--started on a shoestring--has stayed alive by slashing overhead. For a while, it operated from a private home, only last month opening an office in Hollywood. While many AIDS organizations have lost funding as a result both of a perception that the crisis is over and of cutbacks in government grants, this one survives.

The foundation has never had government money. Today the major funder is the San Francisco-based Moonwalk Foundation, at $25,000 a year. Mountains AIDS Foundation’s annual garden party and silent auction last year raised $11,000. The 12 board members, many of whom came to the foundation as retreat participants, each must give or raise $1,000 annually. Other grantors include Macy’s Foundation, Wells Fargo Foundation and New York-based Broadway Cares, an arm of Equity Fights Aids.

A year ago, Shankman, suffering from burnout, relinquished administrative duties, sold her Topanga Canyon home and moved to Palm Springs. But she retains strong ties to the foundation, as founding director and co-coordinator of retreats.

Of about 360 people who have attended the 30 retreats since 1995, she said, “I would guess that 60 to 70 have died, and this is when they’re not supposed to be dying.” The others? “I would like to think it’s our program that inspired them to stay alive.”

* The Mountains AIDS Foundation is at 4274 Melrose Ave., Los Angeles, CA 90029; (323) 666-3355.

* Beverly Beyette can be reached by e-mail at beverly.beyette@latimes.com.