Final Frontier
Starting to Talk About the End of Life
by Emily Harrison Weir
Photos: Andy Duback • Illustrations: © Deidre Scherer
Rockwell understands that reaction, but has seen firsthand the anguish that ignoring impending death can cause patients and their families. Five years ago, Rockwell became a Hospice volunteer; one of her first clients passed away without her family ever acknowledging she had terminal cancer. “It was my first real vision that suffering is caused when people can’t speak about their fears, make plans for the end of life, and say goodbye,” Rockwell recalls. “I wanted to find a way to help people begin to talk about the end of life.”
Film is the 1972 alumna’s medium of choice. Rockwell coproduced Ken Burns’s acclaimed series on Thomas Jefferson and collaborated on his films about baseball, the Civil War, the Shakers, and early radio. One of her previous forays into directing was Stone Rising, a portrait of Vermont master stone-wall builder Dan Snow. Using skills honed during her fourteen years with Burns’s Florentine Films and her own directorial experience, Rockwell set out “to follow my heart the way I watched Ken do it in his work. Filmmaking for me is a way of learning. I just dive into it and let it educate me.”
One lesson is captured in Holding Our Own’s opening words: “People don’t want to get close to death. There’s an almost talismanic fear of having some of it rub off.” Even Rockwell’s own husband initially hoped she’d choose some other topic for a film, although he “came around to seeing how important it was,” she says.
But, in Holding Our Own, she counts on the power of art to overcome initial wariness of the subject matter. The film begins at an exhibition of fabric portraits by artist Deidre Scherer, whose stitched compositions depict aging and illness without fear or sentimentality. Her visually compelling creations show seniors wearing their wrinkles proudly, but also emaciated elders taking what may be their final breaths. Her works are often tough to look at, but Scherer’s traveling exhibitions are intended to promote an open dialogue about dying as a natural part of life.
When Scherer is invited to visit dying people, she does, sketching, listening, holding their hands, looking past her own preconceptions of “the elderly” to see an individual at the end of a full life. Using intricate layers of cloth and thread, she transforms people’s last days into immortal art.
“Singing People Over”
Holding Our Own’s other secret weapon for enticing viewers is music. Rockwell’s camera follows the Brattleboro, Vermont-based Hallowell chorus, whose members sing at the bedsides of the dying. Although “singing people over” feels new, it is actually an ancient practice, according to Hallowell director Kathy Leo.
Visiting singers break the isolation many dying people experience and bring joy at a time when it’s scarce. It can be jarring to see choristers smiling broadly at listeners with sunken frames and vacant eyes. But gradually eyes begin to sparkle, a wizened hand reaches for a singer’s hand, lips move to familiar words, and it’s clear what a balm the music provides. Hallowell offers messages both secular and sacred, and upbeat (“After all the things I’ve been through, I still have joy”) to comforting (“Whatever my lot … it is well, it is well, with my soul”).
Inspired by shooting Hallowell for the documentary, Rockwell helped start the Burlington, Vermont-based Hospice chorus, Noyana, which means “We are going there.” Among Noyana’s thirty-eight singers are three Mount Holyoke Glee Club alumnae: Rockwell, Charity M. Baker ’89, and Martha M. Dallas ’89. The group does hymns, shape-note tunes, chants, rounds … everything from “The Old Rugged Cross” to Elvis’s “Love Me Tender.”
At a recent rehearsal, the chorus struggled to pronounce the words and form the unusual tri-tones in a Bulgarian piece. But soon the haunting harmonies soared; then they moved on to the hymn “Blessed Quietness.” Afterward, Rockwell piped up, “That was lovely; now let’s do something by Johnny Cash!” And they do. This group will try just about anything a patient requests.
Patients respond in many ways. Stronger listeners may applaud, but that’s not the goal, says Rockwell. Singers have noticed changes in those close to death: agitated breathing calms, grimaces soften, and tense bodies relax as they are bathed in sound.
Noyana’s visits also let patients’ families rest a bit, Rockwell notes. “You can see the letting-go look in the eyes of the family members. Suddenly everyone is quiet and together. Then the music fills the room, and it’s a communal experience for which they don’t have to expend any energy.” Noyana’s members put out lots of effort though, rehearsing regularly to tighten their harmonies and freeing their schedules to sing several times a month. It’s a huge commitment, Rockwell admits, but “we get so much out of it—always way more then we give.”
Grateful families might beg to differ. One family recently wrote Noyana, “You filled our home with song and lifted our hearts. Mrs. G. W. passed away at 5 a.m., July 19th with many angels around her. The joy she felt from your music was the perfect note to carry her home.”
What’s Wrong with Denial?
But what if death seems a long way off for you? The young and healthy can also benefit from acknowledging death’s inevitability, Rockwell believes. “When you become more comfortable with the idea of death, you relax in your life and open up and are more available and present for other people,” she says. “The knowledge of how temporary life is makes it ever more precious.”
Tackling death as a film topic was Rockwell’s way of exploring questions she’d carried for many years. “From childhood on, I’ve had anxiety about death,” she explains. “Then ten years ago my dad died in Hospice care, and I had the powerful experience of being with him through that. And one thing I liked about becoming a Hospice volunteer is that, instead of pretending that this life is all there is, you can look behind the veil and ask your questions and state your fears.” Those who confront their fear of death often become less afraid, she’s noticed. Of those interviewed in the film, Rockwell says, “Their calmness about the fact that life ends is a fascination to me. Some are actually considering this transition to be an adventure! How amazing is that?”
But denial of death is still the norm. “In our culture … people are starting Camilla Rockwell to expect that their life will be extended indefinitely,” Rockwell says. Until recently, most people died quickly, surrounded by family. Today, medical technology means we are more likely to die gradually. “As a result, we can be more present for those who are dying. But we can either spend millions extending their lives or we can use [medicine] to control the physical pain and have the community embrace the dying people and help deal with their emotions. It’s really ancient work that’s coming back, and we just happen to be on the leading edge of it.”
Holding Our Own helps spread the word farther. It’s been ordered by Hospices in about two-thirds of the states, screened at the Boston Museum of Fine Arts and at medical conferences, used to train doctors and nurses, shown at New England film festivals, and sparked deep discussions among many viewers. One woman wrote Rockwell that her film was the first thing in twenty-seven years of volunteering for Hospice that had brought her to tears. “It’s really something to have what comes out of your own heart touch the heart of somebody else,” says Rockwell.
She wishes for more such connections, hoping that those who see Holding Our Own “will think about life as a whole and be less afraid at the end of it; that they will reach out to their families and talk about the things that aren’t being said; and that, ultimately, they have more faith in the goodness of life and death.”
Learn More: For a list of resources about death and dying, excerpts from an interview with Rockwell, a sample of Noyana’s sounds, and more about the people featured in Holding Our Own, visit alumnae.mtholyoke.edu/go/Rockwell.
The Holding Our Own movie trailer:
