Defying the Dark : They gathered at a mountain retreat to face their pain. They came away feeling like ‘comrades in battle.’
They sat in a circle on the floor, nine men, strangers for the most part, but strangers who share a tragic bond. All are gay men, either HIV-positive or with symptomatic AIDS.
Pulling up a floor mat, Steve Hayes joked, somewhat uneasily, “This reminds me of Romper Room.”
They’d taken off their shoes, but had not yet let down their guard. Only hours earlier, they’d come together at this peaceful place for a retreat--four days of reflection and spiritual healing.
They would laugh, cry, embrace. Friendships would be formed, fears of death and dying and isolation would be shared.
Phyllis Shankman, executive director of the sponsoring group, had chosen Zaca Lake Retreat, a bucolic site nestled in the Santa Ynez Mountains 40 miles north of Santa Barbara, for reasons symbolic and pragmatic.
When in crisis, she has always gone to the mountains to heal. So when, in November, she decided to expand her ongoing Westside support groups into a more expansive program for those with HIV/AIDS and their families and friends, she called the new organization the Mountains AIDS Foundation.
As she scouted a site, she says, “I approached eight retreat centers. I was turned down.” One place feared other guests would stay away if they knew. “I don’t want them using our towels,” she was told at another.
But at Zaca Lake, the group was warmly welcomed, with fireplace wood in the cabins and some friendly cautions about bears and mountain lions.
“We’re here to tell the truth, to each other and to ourselves,” Shankman said as the group formed that first circle. She has worked for 2 1/2 years with people with AIDS. As she scanned the circle of healthy and fit-looking men, she knew any one of them “could be gone in a week.”
A smoking sage stick was passed, the smoke symbolically clearing a space for new ideas and experiences. For the next four days, Shankman promised, “We’re going to have a good time.”
She was first to share, telling of her affinity for the mountains, of her hope that these men, too, would find peace and solace in this place.
And she told about her gay son, Adam, 30, a choreographer, and how she views her work as “my offering to his community.” It is a challenge she took up just as she was thinking of retirement, after 25 years as a licensed clinical social worker in private practice.
She told, too, of the deaths of four men in her ongoing support groups over the last year.
It was time for others to share.
Chris Harvey, 40, Shankman’s co-facilitator, a volunteer who is himself HIV-positive, broke the ice: “I’ve had four significant relationships in my life, and they’re all gone. My best friend of 22 years, my UCLA fraternity brother, died on Saturday.”
By being here, he told the others, he hoped he could “somehow make it safer for you to be yourselves.”
David Kahea, 31, of Venice, a former flight attendant now battling AIDS--”I almost died twice”--touched everyone when he spoke of trying to shake the “dark angels on my path.” Foremost among these bleak thoughts: The fear “that I’ll probably never have another loving relationship.”
Hayes, 26, of Westchester, a former lab technician intern who was diagnosed with HIV in college and is now symptomatic, spoke of years of being “very much alone with my dirty little secret . . . the kiss of death.” Now, he is trying to find his way back into life and it is “excruciatingly painful.”
Until now, he’d been afraid to scratch the surface of his emotions, afraid to cry, “because I don’t know if I can stop.”
Charles Medina, 35, of Malibu, who worked in film development before developing AIDS, came here hoping to find a way to stop running, to “find a home on this planet where I feel comfortable.”
OK, said Shankman, in time. “Let’s put it all out on the table. What scares you most?”
“Glen,” a 37-year-old temp agency worker who asked to be anonymous: “My body degenerating, losing my mind, my bodily functions.”
Thomas Rachal, 45, who spent years in the music industry (Motown, Paramount): “Pain is one of my fears,” that and being pitied.
“Roger,” 54, a retiree: “Dying like I watched my friend die, fearing that when I die I’ll just be another statistic and maybe have to be buried by the city, just hauled away.”
Douglas Phillips, 32, a Montebello truck driver: Leaving behind “people who need me,” his mother, his sister. “I just can’t go now.”
Medina: “I fear the pain that I’ll cause other people when I’m suffering.”
Hayes: “Going through this experience alone.” That, and fear of rejection. HIV has kept him from having an intimate relationship for seven years. “I felt like damaged goods.” Now, with AIDS, “I feel like I’m in the dumpster.”
Arthur Shafer, 41, of West Los Angeles, who used to be in the fashion industry: “Not having time to do something with my life . . . to complete this journey.”
Asked by Shankman to acknowledge the one person in the circle who had most touched them, several chose Kahea. Roger, for one, related to those dark angels: “I started to cry. Everything you were saying I felt.”
Just as the tissues were getting soggy, Harvey broke the tension, saying this was beginning to be like a “Miss Congeniality” competition.
After dinner, the men gathered again in The Barn, a big, raftered room with a stone hearth. Shankman cut nine lengths from a huge roll of white paper. Each man was to lie down and have a partner draw the outline of his body, then each would fill in his outline.
The idea, she explained, was to begin to accept that, “You’re much more than a body.” Draw your spirits, she said--and “have fun with it.”
Medina stabbed at his outline with a pencil. Dozens of little dots flowed from his “body,” as if he were willing the AIDS virus to flee.
Kahea, describing his artwork, said, “I would have drawn in my catheter and the scar on my stomach (from surgery for AIDS-related complications) but you didn’t ask me to.” Then, smiling, he added a jagged scar. And, whimsically, earrings.
“When in doubt, accessorize,” quipped Shafer.
Phillips drew in the virus as purple squiggles on his brain. “Most of the problems I’ve had have been mental,” he said, a refusal to acknowledge having HIV. Although his condition was diagnosed in 1986, he didn’t confront the truth until 1990, when he came close to marrying.
Most of these men have long since accepted their illness though, as Hayes put it, “There are times of acceptance and times when acceptance is withdrawn, almost like a bank account.” He is one who has had what he calls “a little bag of symptoms,” pneumonia, gastrointestinal problems, lesions.
The men seemed to surprise themselves with their willingness--indeed their need--to share their innermost thoughts. “I don’t remember ever crying in front of people,” said Shafer. “I mean, it’s not like when Bambi’s mother died. So this is what a release is like.”
Because he is asymptomatic, Phillips said he felt guilty, less needy than the others. It’s OK,said Shafer, “It’s not your fault you’re not sicker.” There was appreciative laughter.
A recurring theme: Dealing with loss of friends, how to replace those friends, whether to do so was disloyal.
“It’s not about replacing,” said Harvey. “It’s more about reinvesting.” Hayes admitted to having “a fear of reinvesting in a bad market.”
They talked about the “ghost town” neighborhoods of Los Angeles, such as Silver Lake, hard hit by AIDS. And about names now deleted from their phone books, the awful burden of outliving lovers and friends.
Said Shafer, “It’s almost like you want to videotape everyone you’ve ever known.”
Now and then, Shankman reminded them, “Many of you may be here for many years and you want to have a quality life . . . love in your life.”
One or two, like Kahea, have come to see AIDS as a blessing, an opportunity to become a better human being, to toss out what’s unimportant. He can laugh now as he remembers “buying a BMW convertible so my lover would stay with me.” The lover left.
Like most of the others, he does not dwell on death. He simply has “this illness clock that runs faster than anybody else’s clock.” Still, he says, “I refuse to wear a watch.”
Most have put their anger behind them. Hayes says, “I’m not going to shake my fist in anger for the next five years because I’m being cheated out of 30 or so.” He smiles. “I don’t have to plan for an IRA. And I’m not worried about my car’s trade-in value.”
Still, he says, “There’s always the one funeral you go to and you come home and take off your suit and curl up in bed.”
Mountains AIDS Foundation plans monthly retreats and hopes to offer full scholarships. (There will be a fund-raiser in Venice on May 6.) The group’s funding is largely private donations. For this first retreat, the $695-per-person cost was paid by the foundation. Shankman volunteers her services.
Meanwhile, the first retreat-takers are talking about a reunion.
This was something different, not just “a lot of guys sitting around talking about their medications,” as Shafer put it. A week later, reflecting on Zaca Lake, the men were philosophical.
Said Rachal, “It was a very holy and sacred event in my life,” one through which he came to terms with his HIV, realized that, “it is not an end in itself, that there is life beyond diagnosis.”
For him and most of the others, the most powerful moment was the closure ceremony, in which they’d said goodby to the dead by tossing notes with their names into a bonfire.
Rachal said goodby to 47 people--”It was just like an overwhelming burden was lifted from me.”
“I was on a high for days afterward,” said Shafer.
Said Hayes, “It was kind of curious how easily and willingly I had given up all my layers of defenses. I think sometimes I’ve become a coping skill rather than a human being, coping with bad news, death, declining health, that I’ve lost touch with who I am underneath all that.”
The retreat strengthened Phillips’ resolve to go on, to keep telling himself, “Hey, regardless of test results, regardless of what other people think or say,” he’s not quitting. Too often, people found to have a catastrophic illness “just stop living.”
Medina found the retreat, “the best thing I’ve ever done in my life,” this coming together of “comrades in battle.”
“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.”
It was the first time Shankman had done a retreat for the terminally ill and she found it a powerful experience “to see these sunshiny smiles on their faces at the end.”
This week, she mentioned, there was another death in her ongoing support groups.
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