Fall 2007 Alumnae Quarterly Web Extra

Conversation with Camilla Rockwell

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Following are edited excerpts from an extended conversation in July 2007 with Camilla Rockwell ’72, director of Holding Our Own: Embracing the End of Life.

Quarterly: Why did you decide to make Holding Our Own?

Camilla Rockwell: Five years ago I became a Hospice volunteer. One of my first clients was in her forties with breast cancer that had metastasized to her brain. She was clearly dying and very anxious. Even though she was in hospice care, her family would not acknowledge that she was dying. And she died without ever having written a will or having shared a conversation with her family about her impending death. That was one of my first experiences as a hospice volunteer and I was devastated witnessing the effects of fear and denial.

              After it was over, the woman’s daughter admitted that the family knew she was dying, but nobody could talk about it; [the patient] suffered so much anxiety because no one could speak the truth. 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. These were the things the family didn’t get to do. I wanted to find a way to help people begin to talk about the end of life.

              My own husband was not interested in this subject for a film at first, though he came around to seeing how important it was. When he first saw Deidre Scherer’s art, which often depicts dying people, he said, “who would want to look at that or think about that?” It’s a very typical reaction for our culture. I’d like to see people loosen up a bit about that and realize we need to talk about it. It is a fact of life for all of us.

Quarterly: How did the film idea develop?

Camilla Rockwell: Someone approached me about doing a film about Deidre Scherer’s art, and I had known Kathy Leo, the founder of Hallowell, for a long time. I thought, what if you could combine art and music to gently seduce people into engaging a topic they would rather run away from? And it seems to work, sometimes a little too well; people are so fascinated by Deidre’s art and her creative process with the fabric that sometimes they miss some of the information; the film is very densely packed.

              I had also worked on Pioneers of Hospice, an educational piece about palliative care that is now used for training in hospices all around the country—but that film is historical, not personal. I wanted something that would touch a wide range of viewers in a personal way. What thrills me is that people who have been in the end-of-life field for a long time are moved by Holding Our Own in a way that they haven’t been before. A hospice administrator of twenty-seven years wrote to me after seeing the film that this was the first time in her work she had been brought to tears. That’s what I mean by personal. It’s wonderful to see what comes out of your own heart touch the heart of somebody else.

Quarterly: You worked for years with Ken Burns and Florentine Films before directing your own films. Did this experience influence your own work?

Camilla Rockwell: I started working with Ken when he was doing the film on the Shakers, in the early days. Florentine Films was then a little company that worked out of his living room. After The Civil War series, we didn’t know what hit us [due to the publicity for that series.]      

              And, besides learning about film, what I gained from Ken was the wish to follow my own heart the way he did in his work. My two favorite films with him were the first and last I worked on—The Shakers and Thomas Jefferson. I liked The Shakers because it talked about the connection between creativity and spirituality. And I loved shooting at Monticello in all seasons and seeing how Jefferson’s life also combined invention, a sense of beauty and proportion—in thought as well as design. I realized I wanted to bring that awareness of the creative process to my work. In both Holding Our Own and Stone Rising [my last film, a portrait of a Vermont stone-wall maker], I felt very connected to the subject.

Quarterly: Tell me a bit about your approach to filmmaking.

Camilla Rockwell: Filmmaking for me is a way of learning. I dive into a project and let it educate me. I don’t begin with an idea of “I’m going to do it this way and it’ll look like this” but let it evolve. It informs me about what it wants to be. I have to let go and allow that to happen naturally.

Quarterly: What have you learned from being around dying people?

Camilla Rockwell: Starting in childhood, I had a lot of anxiety about the fact of death, it’s been more in the foreground for me than for many people. I’ve had so many questions about death. When my dad died in hospice care ten years ago, I had the powerful experience of being with him through that. It was a way of engaging my own questions, fears, and anxieties.

              One thing I liked about becoming a hospice volunteer was that, during the training, we were encouraged look behind the veil, ask our questions, and state our fears. People didn’t look askance at you or think you were morbid or strange for talking about death. I liked that freedom to speak from my heart and hear others speak from theirs.

              I find that, with families attending their dying loved ones, there’s an openness, a willingness to be in their hearts. Both Deidre Scherer and Kathy Leo have been terrific teachers for me in the course of making this film because they are so at ease with the whole of life. Their calmness about the fact that life ends is a fascination to me. Some people I interviewed for the film not only aren’t afraid of death but actually consider the transition to be an adventure.

              The idea of losing one’s identity is talked about in the film as one of the most frightening aspects of dying. There’s a question for me there about the function of ego, needing to employ ego in life for what you have to do, and then at the end be willing to let go and be dissolved in some kind of whole that’s grander and more mysterious. One of the words that keeps coming up in the film is mystery. Instead of thinking of death as a blank, an end, an abyss, the idea that it’s a mystery is much more interesting to me.

Quarterly: In the film, someone talks about facing the idea of death as a way to embrace life more vigorously. Has this been true for you?

Camilla Rockwell: Before the film, I had spent many years in a meditative tradition learning to be present as much as possible to each moment, so that was already of concern to me. Focusing on death in the film only helped to reinforce that. Maintaining an awareness of how temporary life is makes it ever more precious.

Quarterly: How has the film been received by viewers so far?

Camilla Rockwell: At Stanford Medical Center, an interdisciplinary team of nurses, doctors, chaplains, and social workers used it to open a discussion about their personal experiences and views about their work … A woman who watched the film with her fifty-nine-year-old husband and seventeen-year-old son said that afterwards they had the most meaningful conversation they had ever had as a family. The husband was very open to it; the son was embarrassed and trying to make light of it. … Someone who saw the film at the Green Mountain Film Festival was driving home with her husband and, for the first time, he talked about the death of his mother and shared his feelings … A woman in Washington state who was having a difficult time caring for her aged mother wrote that the film helped her see things from her mother’s perspective and that completely changed her caretaking approach. Looking at elders not just as discarded shells but people who lived interesting lives and continue to live deeply helps us to care for them in a more attentive way.

              Our hospice chorus sang last week for a woman who was ninety-six, shriveled up, and gasping for breath.  She’d been a student at Julliard and her family knew she loved music. They wanted to provide beautiful music for her in the last hours before her death. If you didn’t know anything about her life, all you’d see would be this decrepit person in a bed. Everyone likes to look at young people, but who’s interested in older people and what lies within in their faces and behind their eyes? There’s a world of experience there.

Quarterly: The benefits of talking about dying are obvious for those who are close to death, and for their loved ones. But are there benefits for people who believe death is a long way off for them?

Camilla Rockwell: I believe there is a whole world of benefit. 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. It can help in making significant life decisions.

              The hospice volunteers I’ve met are generally very open, accepting, and nonjudgmental. That is one of the biggest gifts of hospice, to others and to oneself. Judging, one gets caught up in negativity and separation; if you can let go of that, it’s possible to be more available to others, freer, happier.

Quarterly: You helped start Noyana, the hospice chorus in Burlington, Vermont. What sort of music do you sing? How do you view this work?

Camilla Rockwell: When we sing for people, we choose music according to what that individual wants or needs. Yesterday we sang for someone who loved country music, and we sang “Love Me Tender” by Elvis. She loved it. We sing Christian hymns, shape-note songs, rounds, chants, and we’re learning some lovely Balkan harmonies as well as old-time tunes like “You Are My Sunshine” … We are developing quite a range.

              The group’s name, Noyana, is taken from a South African song that means “we are going there.” Because it’s in another language, we might sing it quietly for people who are actively dying, ready to depart. While people are still up and active, we might sing songs they’re familiar with that give them great pleasure and bring up fond memories, but as they get closer to death, sometimes we bring in non-English songs with lovely harmonies to help them let go.

              Our work is for the families as much as for the dying. Family members watching a loved one die are often tense, trying to hold back their grief. When we sing, they often begin to cry and hold hands, and the hand of the person in the bed; they allow their feelings to flow and begin to talk about what’s happening. While we’re singing, they don’t have to do anything but rest, listen, receive. And once their loved one has died, the families often feel the small comfort of having provided something beautiful at the end. It eases a bit of their sorrow.

              Noyana is now composed of thirty-eight people. We rehearse twice a month, and regularly meet requests that come through our local hospice for sings at private homes, in nursing homes, and at Vermont Respite House (a hospice resident facility). Twice a year we sing at the church in trade for our rehearsal space there, and more and more often we are asked to sing at memorial services … Families can’t believe that they just call and a small group of us will show up, but it’s such a joy for us to respond to what they need. We always receive much more than we give.

              It was fun to discover that, out of the thirty initial members of Noyana, three were Mount Holyoke alums who had all sung in the Glee Club. Amazing to find ourselves drawn together in this work. It is gratifying to be able to offer as a volunteer service something that we love to do anyway.

              Hallowell, the hospice chorus featured in the film, has initiated eight other hospice choruses in the state; every major town in Vermont now has one and, often, the first question after seeing the film is “How can we start a chorus here?”

Quarterly: It sounds like Noyana is part of a fairly new trend.

Camilla Rockwell: Actually, I believe this is all very ancient. Therese Schroeder-Sheker started a school, The Chalice of Repose, out west to teach musicians how to play and sing for the dying. [See http://www.dwij.org/matrix/therese_.html for more information.] She takes a much more scientific approach, choosing pitches and harmonies according to the patient’s breathing rhythm and stage of dying. She began as a medieval historian and discovered music people used to sing for the dying. Sharing what she learned became her profession.

              In our culture, I think medical technology has become too invasive and people are starting to expect that life will be extended indefinitely—we don’t accept that life has a limit. Perhaps we’re seeing a slow return to community, rather than hospitals, embracing those who are dying. Stephen Kiernan, the author of Last Rights, talks about how we used to die quickly from strokes, heart attacks, and accidents. But now we have EMTs, drugs, and medical interventions that allow us to die more gradually. As a result, more people who are dying have time to prepare, to say goodbye, to bring intention to the end of life. We can either spend millions futilely trying to extend our lives or we can use palliative means to control physical pain and offer human connection to help ease emotional pain. I think it’s really ancient work that’s coming back.

Quarterly: Since some of those you sing for are gravely ill and may not be able to speak or move, how do you know their reactions to your singing?

Camilla Rockwell: A woman at Vermont Respite House where we sing regularly was asked each week if she wanted us to sing for her. She was unable to speak, but could point to “yes” or “no” on a message board.  For several weeks, when asked about singing, she pointed to “no”. Then one day she must have heard us down the hall, and pointed to “yes.” And every week thereafter she pointed to “yes.” Even though she couldn’t smile or clap, her pointing to “yes” again and again was a clear acknowledgement that she enjoyed it. We sang to her every Saturday afternoon for months before she died.

              We’ve noticed that often the breathing of people in the final stages of dying calms down and becomes less ragged while we’re singing to them. During the songs, the families also rest a little bit. One man’s wife and grandson lay with him on the bed while we sang. Another sat up with a daughter on each side, holding his hands. Music fills the room and it’s a communal experience for which they don’t have to expend any energy, or pay any fee.

Quarterly: The Hospice chorus phenomenon has clearly caught on in Vermont. Do you know if it’s a trend elsewhere too?

Camilla Rockwell: There are the well-known Threshold Choirs in California. [See http://www.thresholdchoir.org/ for more information.] And I’m tracking the states from which hospices have ordered Holding Our Own. At least two-thirds of the states have ordered in the last two months.

              One thing I’m concerned about is the reaction to the film of “Oh, let’s start a hospice chorus.” That’s a nice reaction, but people have no idea what’s involved. (We had no idea either when we started Noyana.) There are many aspects to this work; it requires a strong commitment. Everything about it is a wonderful lesson: learning how to sing in intimate situations, becoming friends with other singers you don’t know, discovering all the administrative tasks, choosing and learning an appropriate repertoire, and rehearsing and rehearsing to make the harmonies as pure and beautiful as they can be. What could be worse than being trapped in a bed with a group of off-key singers torturing your nervous system?

Quarterly: Where will you be directing your energies in the next few months now that the film is out?

Camilla Rockwell: Over the next few months I’ll continue doing community screenings of Holding Our Own at town theaters, libraries, churches, medical centers, senior centers, assisted-living communities, at Hopkins Center in Hanover, N.H., the Boston Museum of Fine Arts, at hospice conferences…. The film is being shown at film festivals, and I’m looking into broadcast possibilities. It’s kind of surprising the wide range of venues. So I’m going to follow that for a while with the hope that it might help people open up with each other. And it’s a great joy to sing with the chorus; that has become a big part of my life.

              Another film project? I feel I’m mourning the end of the creative part of this one, but after the intense focus on death with the chorus and production of the film for a year, I need to give myself a little respite. The next project that rises up might have a completely different focus, which might be wise. I don’t know what will be next. I’m learning that I don’t need to make that decision from my head. It will announce itself.

Quarterly: What do you hope viewers will do, think, or feel after seeing Holding Our Own?

Camilla Rockwell: I hope they 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 can be difficult; and that, ultimately, they might discover the depths of compassion in their own hearts.

Learn More: Starting to Think About the End of Life

Camilla Rockwell ’72, director of Holding Our Own: Embracing the End of Life, offers this annotated list of resources about death and dying. Many of the sites below also have useful links to additional information.

RESOURCES RELATED TO HOLDING OUR OWN

• www.holdingourown.com The film’s Web site includes ordering information.

• www.dscherer.com See more work by Deidre Scherer, the fabric artist featured in Holding Our Own.

• www.hallowell-singers.org Learn more about Southern Vermont’s Hallowell Singers (featured in Holding Our Own) and their CD, Angels Hovering Round.

• www.dyingwell.org Learn more about Ira Byock, M.D., author of Dying Well and a featured “talking head” in Holding Our Own.

 

GENERAL RESOURCES ON DEATH AND DYING

• www.nhpco.org National Hospice and Palliative Care Organization’s consumer-focused Web site provides a wide range of free materials about end-of-life care. Topics include hospice information, palliative care, living wills, handling pain and grief, financial planning, and workplace-related issues.

• www.abcd-caring.org Americans for Better Care of the Dying works with the public, clinicians, policymakers, and other end-of-life organizations to improve end-of-life care.

• www.pioneersofhospice.org Rockwell coproduced, with director Terence Youk, Pioneers of Hospice: Changing the Face of Dying. This documentary about the history of the modern hospice movement is used by hospices nationwide. One of the visionaries featured is Florence Schorske Wald ’38, who founded the first hospice in America. (The others are Dame Cicely Saunders, Elisabeth Kubler-Ross and Balfour Mount.)

• www.reclaimtheend.org The New Hampshire-based Reclaiming the End of Life Initiative is intended to get U.S. presidential candidates to focus on this issue in the coming election. The site includes a video and information on citizens’ forums.

• www.stephenpkiernan.com Vermonter Stephen Kiernan is the author of a terrific new book, Last Rights, about reclaiming the end of life from the medical profession.

• paulinechen.typepad.com Pauline Chen, M.D., is the author of an absolutely fascinating and beautifully written new book, Final Exam: A Surgeon’s Reflections on Mortality, about how medical training affects young surgeons and how they treat patients. This link is to her blog.

• Final Gifts: Understanding the Special Awareness, Needs, and Communications of the Dying This book by Maggie Callanan and Patricia Kelley is considered essential in the hospice world.

• www.pbs.org/wnet/onourownterms/tools This site, prepared to accompany Bill Moyers’ PBS series, On Our Own Terms, includes a “financial guide to dying,” tools for patients and communities, and sections on care options, therapy, and support. You can also view video clips from the series and participate in an online discussion forum.

Listen to the Hospice Chorus, Noyana

You can listen to the Burlington, Vermont-based chorus cofounded by Camilla Rockwell ’72. Please keep in mind that these recordings were made during rehearsal, and do not reflect the quality or the range of their finished, in-person sings.

• Excerpt from the hymn “It Is Well With My Soul” (words by Horatio Spafford, music by by Philip Bliss)

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• Excerpts from the Bulgarian song Tebe Poem by Dobri Hristov

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