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Living the good death 

The terminally ill take control of their final exit

Wednesday, Mar 8 1995
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Scrubbed, gowned and flat on a gurney awaiting the cancer surgeon's knife, Garland Grizell was startled when the head nurse broached a touchy subject. "We have to talk about the Big D," she told him.

" 'The Big D'? You mean death?" Grizell asked incredulously. "What is this, Sesame Street?"

The 61-year-old former Broadway and Las Vegas dancer survived that bout with illness -- and with medicine's often-awkward efforts to avoid confronting death. Now that he's facing terminal emphysema, Grizell is relieved to have found Paradigm, the one-stop shopping center for all your dying needs.

At Paradigm's weekly meetings, experts discuss wills and trusts, spirituality, sexuality and the final stages of life. A specialist from the Hemlock Society explores the euthanasia option. Honest talk about such real-world concerns has proven to be a balm for the anxieties of the terminally ill, who often find they are expected to be unobtrusive "patients," passively awaiting the end. At subsequent meetings without the presence of experts, the afflicted take charge and apply the topics to themselves.

Wresting control from the grim reaper is the concept behind Paradigm, an innovative San Francisco organization that ministers to the dying. The 10-week program is the invention of Richard Wagner, 45, a gay Roman Catholic priest whose inexhaustible humor cushions the constant contact with death. "It's easier to work with people who aren't terminal," he acknowledges. "And it's a lot easier to find funding for programs for the living -- few people are in a position to be grateful when they're dead."

But some are. After a presentation on probate by San Francisco attorney John Goodman, several participants wrote Paradigm into their wills. One man left a car, another a computer. "Getting into the legal aspects of delegating health-care powers and writing an actual last will and testament can be a very self-confrontational step," says Goodman, whose own partner died recently. "It brings the reality of death home to people." Goodman offers pro bono estate planning to Paradigm participants.

Wagner's unapologetic homosexuality has often put him at odds with official church policy, and his own priestly order has censored him in the past. Yet the priest sees no conflict between his role as a cleric and his ministry to the dying. "Paradigm has nothing at all to do with the Catholic Church, nor am I acting in my capacity as a priest," Wagner states.

He also insists that undue influence from the Hemlock Society is a nonissue. "There's an enormous difference between suicide and the informed act we call 'self-deliverance,'" he says. "And we don't advocate anything. Paradigm just dispenses the information -- we allow our intelligent participants to decide for themselves what to do with it."

Wagner's professional experience with death dates from the first wave of AIDS cases in the early '80s, though he stresses that Paradigm is open to persons with any terminal illness. "In those days the kids were so young -- they had no idea of death at all," Wagner recalls. "They'd go, 'You mean ... no more Donna Summer?' Now we're all so used to it, but that doesn't mean we deal with it very well." In his work on the front lines of the AIDS epidemic, Wagner has counseled hundreds of terminal clients. "I feel I've died with them so many times," he reflects, "and yet I breathe and they don't."

After years working with individuals as a therapist, Wagner realized that a common set of fears and confusions apply to most of the dying -- and late last year Paradigm was born. Now, as a kind of death coach, he's often in the strange position of burying his graduates, many of whom first have brief careers as counselors to others near death. Wagner charges nothing for the course, relying on modest donations from friends plus grants from offbeat groups like the Sisters of Perpetual Indulgence who share a sensitivity to good works that are marginal and out of the mainstream. "I sent my eight-page, single-spaced Paradigm prospectus all over the place," Wagner says. "A lot of people said they'd contribute if they didn't have to read it."

Like many, Wagner once regarded death as repulsive and awful. "As a young priest out of seminary I was intimidated and frightened being around the sick and the dying," he recalls. "It's }one reason I asked for a teen ministry -- I figured nobody was going to die in high school."

When friends prevailed on him to perform graveside rites for an acquaintance, Wagner reluctantly complied. As he left the cemetery, an elderly woman told him his words had been beautiful then made him promise to do the same ceremony for her when the time came. Nervously, Wagner asked how old she was. "I'm 81," the woman said.

"Goodness, it hardly pays for you to go home then," he replied without thinking, as they strolled past the tombstones. Though the woman's sons were scandalized by the remark, she found it hilarious -- and Wagner began to realize that many people near death share different values.

"Dying people are wonderful," says Wagner as he prepares for a meeting of his Paradigm participants by baking a pecan pie in his comfortable, plant-filled apartment overlooking the Panhandle. "It's the survivors who tend to be a pain in the ass."

Wagner shared a running gag about confession with one client -- a joke that went over poorly when the man was only hours away from death in a hospital room filled with weeping relatives. "Frankly, I forgot I had my clerical collar on," Wagner says. "I went into the room, zipped right over to the bed, and asked as usual if he had anything to confess. As usual, he said no. I said, just as I noticed the distraught faces around me, 'Well, you're just going to burn then ... oops, sorry, folks.' My friend cracked up, because our black gallows humor was very uplifting and liberating to both of us. But it was shocking to the bystanders. Too bad."

Paradigm meets in Wagner's living room, where a log fire wards off the foggy chill of a Haight-Ashbury afternoon. "Many people find great serenity in a terminal prognosis," Wagner says. "It gives some people permission to do things they've never dared. Any ending can be a sad thing, but if the wisdom gained in the process dies, too, then it's a tragedy."

Garland Grizell is eager to pass along what he's learned from Paradigm. "I've been going to groups since Noah got off the boat," says Grizell, who long has known that his progressive disease will be fatal. "In other programs about dying it was like reading the script or auditioning for the part. Paradigm is like opening night. Now I am living my death."

Grizell describes a recent meeting as disturbing, in a useful way. He attended in severe pain -- he'd misplaced his medication -- and heard Dale Borglum of the Living/Dying Project talk about directing compassion toward one's own infirmities. "I tried it right there as he was speaking," Grizell says. "It was the only tool available, and it enabled me to deal with the pain and remain with the group."

Borglum's talk on spirituality is strong on the practical approach taken by his associates, Ram Dass and poet Stephen Levine, the author of Who Dies? "We're conditioned when suffering arises to push it away," Borglum says. "But there's a healing message contained in what our bodies go through. If we can get to that, we can avoid judging ourselves or being ashamed of our approaching death."

There's little discussion at Paradigm of the reigning monarch of mortality, Elisabeth KYbler-Ross, author of On Death and Dying. "She's gone all metaphysical," complains Wagner. "She's more interested in after-death experiences than in dying itself. But the terminally ill need to deal in the physical, the here and now. A lot of people are very disappointed in her."

Veteran hospice nurse Jon Byrnes takes Paradigm participants on an armchair guided tour of the physical, mental and emotional changes likely to occur during the day or so before death. Morphine can calm the anxiety associated with shallow, gasping breathing; other drugs are available to offset the toxins produced when the kidneys start shutting down. Byrnes' "Final Stages" talk encourages the dying to muster support from loved ones well in advance of the end. One man informed friends of his condition, his wishes and his serene frame of mind well in advance -- no one was unduly alarmed when mild dementia led him to speak of sailboats arriving to carry him onward as death approached.

"Your caregivers' anxieties can be very upsetting to you as you die," Byrnes says. "With a little forethought you can talk people through it while you're still lucid and avoid last-minute panic."

Many of the terminally ill retain a strong interest in sexuality until very near the end. Syndicated sex columnist Isadora Alman visited to tell the Paradigm group about a friend who was dying of AIDS. When she asked what she could do, the man requested two favors -- that she pay to have his front tooth capped, and that she go out and buy him a sex aid she describes as "a dildo the size of a floor lamp." Alman laughs at the memory. "When all else is slipping away, vanity and lust will remain," she says. "It's not so much that death is an aphrodisiac as that it makes us realize life is brief and we have little left to lose."

Wagner believes in directly confronting all the mysteries surrounding death. It's one reason he invited the Hemlock Society's Sally Shute to be the first speaker at Paradigm's inaugural program. She arrived, armed with copies of Derek Humphry's Final Exit and prepared to discuss the distinction between the panic-driven act called suicide and the rational decision to die known as "self-deliverance."

But instead of delivering her usual spiel, Shute found herself counseling a room full of people grieving over the death a few days earlier of one of their group. Terminal cancer patient Rita Zweig, 71, had made a vivid impression as a strong, funny woman when she'd attended a single Paradigm workshop before collecting her morphine prescription and putting an end to her life.

"Most were supportive of Rita's decision," Shute recalls. "They understood her fear that the cancer was spreading from her lungs to her mind and that if she waited much longer she might be unable to act." Shute has found that many, like Zweig, realize they have no power over their terminal disease but can achieve a feeling of autonomy by controlling the manner and the timing of their deaths.

"Once they get their backup, their stash of medication, they find a sense of security that allows them to go on living -- or not," Shute says.

Wagner grew close to Zweig in the months before her death, and describes her as a woman who touched many. Shortly after they met, Zweig asked Wagner if he was married. "Honey, I'm a queer Catholic priest," he replied. "And I'm a dying old Jew," she said, "so we're made for each other." Characteristically, Wagner points out, Zweig used her death to deliver a potent message at Paradigm's very inception. "People really woke up and said, 'Wow, we're not playing house here,'" Wagner recounts. "It helped them get a grip. Our conversation became more focused. Many of the dying are better mentors to me than I can ever be to them. Thank you, Rita."

John Roemer

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John Roemer

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