Courtesy of Lion's Roar| By Lindsay Kyte | Originally Published 11.22.2017 | Posted 12.02.2017

Buddhist wisdom for people who are dying — and those who love them.

Death Is Here Now: Koshin Paley Ellison & Robert Chodo Campbell

I didn’t know what to do. I was at the New York Zen Center for Contemplative Care to talk with Koshin Paley Ellison and Robert Chodo Campbell about their Buddhist approach to end-of-life care. But they were dealing with death right in front of me. “One of my dear friends is dying right now,” Koshin had just informed me, with tears in his eyes.

“Oh… I’m so sorry. We can reschedule if this is a bad time?” I offered, wishing I knew the right words to say. This made them both smile, and Chodo reached for my hand.

“Lindsay, isn’t this story on death and dying?” he said gently. “Yes,” I replied, terrified of the emotion so present in that moment. “Well, welcome to it,” Chodo stated. “Here it is, right now, in this room.”

“Death is the most important spiritual teaching.”


Their beloved friend, the Buddhist teacher Michael Stone, was in a coma and was expected to die, which he would three days later. The two Zen priests, along with many others in the Buddhist world, were in deep sorrow about losing him. Yet as I spent the day with Koshin and Chodo, we went through many states of being. We cried. Chodo sang show tunes. They showed me their “bling”—new rings from their wedding in June. We sat in silence after they told the stories behind the photographs on their altar. We ate excellent dumplings. Yet during each experience, Koshin’s phone would ding with a text about Michael, and we were reminded that death was in the room with us.

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Zen practice helps Koshin Palley Ellison (center) and Robert Chodo Campbell (right) stay with whatever unfolds as they care for those who are dying. Here they share a laugh with Ronald Getter. Photo by Nicole Craine.

“Death is the most important spiritual teaching,” said Chodo. “It wakes us up. If we are truly present in our lives, then death doesn’t come as such a shock. You’re here, you’re at a retreat, you’re grocery shopping—and suddenly you’re not. What is more important than understanding how quickly it can end—that there’s no rhyme or reason—and having some kind of spiritual foundation that can hold you in that?”

Chodo and Koshin met as Buddhist chaplains, and became both romantic partners and partners in end-of-life care. Their idea to start a small hospice house developed into the New York Zen Center for Contemplative Care in Manhattan. In addition to Zen Buddhist practice and study, NYZCCC offers training in end-of-life care for medical professionals, caregivers, loved ones, and those who are themselves dying.

“99.9% of people we care for are not Buddhists. These are people who are looking for an extra layer of support,” says Koshin. “But all the work we do is grounded in the Zen precepts. One of the things we continually try to address is the equality of everyone who is on the care team as well as the dying person.”

“What Zen Buddhist practice allows for is the idea that there’s no receiver and there’s no giver of care,” says Eishin Schapiro, a current chaplaincy student and a Zen student at the Zen Center. “Care is found in relationship. I find that very powerful in theory and in action. So much of my Buddhist practice didn’t make sense until I was doing this caregiving

 

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Students in the contemplative care program at NYZCCC. Photo courtesy of NYZCCC.

Compassion means allowing death to look different ways, says Koshin. He tells the story of being called to deal with someone people described as difficult and violent. “I had to drop all ideas, even what I heard about this woman—because that’s not who she is, that’s who she was to those people.”

The woman started throwing things when Koshin arrived. “She was yelling ‘GET OUT!’, her face contorted with rage. I was lightly ducking and just looking at her. When she didn’t have anything more to throw, she said, ‘What are you still doing here?’ I said, ‘Well, I’m really curious about what makes you so enraged.’ She paused, then said, ‘You want to take a seat?’”

Koshin discovered the woman had spent her life taking care of her parents. After they died, she was diagnosed with stage four ovarian cancer and her husband left her. “Of course she was angry!” says Koshin. “We got to explore that she had never really been able to be angry. It was actually enlivening to her, the feeling of anger. It felt good.

“At the end, she sat up in her bed with fists to the sky and was like, “AUGHHH!!’ And then she died. It was magnificent. Sometimes that is a beautiful death. It’s important to realize the range of what a good death can be, because it’s not always lace pillows and very peaceful.”

“There is no single definition of death,” Koshin says. “Caring for someone who is dying means allowing them to decide what that is.” Photo by Sean Kernan.

It is Buddhist practice that prepares Koshin to be open to such moments. “One of the things I love about Zen in particular, and why it’s so well-suited for this work, is that it’s a completely experience-based practice, not belief-based.” As a graduate of the chaplaincy training and a current Zen student, Gary Dojun O’Connor agrees: “Now I know experientially that the possibility for loving action is always present, under even the most horrendous circumstances. We may not know how to do it, but the possibility is always present.”

Knowing yourself and being present can also mean knowing when you must step back, Chodo says. “For example, I’ve had a lot of experience with chaotic environments. But someone who hasn’t had that much experience with chaos may say, ‘This is too chaotic for me, or, there’s too much anger in this room.’ Skillful means and loving attention can mean realizing that I’m not the right person for this. It’s not always about how to stay there.”

When facing situations around death, adds Koshin, “You don’t know how things are going to unfold. It’s the one thing that’s totally true.”

Love in Loss: Alexandra Gersten–Vassilaros

 

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Alexandra Gersten-Vassilaros says no one wanted to say the “d-word” when her husband John was dying.

“The birth of so much love happened right at death,” says Alexandra Gersten-–Vassilaros, a playwright and Pulitzer Prize finalist. By virtue of her profession, she was especially sensitive to not having the right words to express what was happening when her husband, John, was dying of colon cancer in 2015. Their three sons, aged fourteen, eighteen, and nineteen, were looking to her for guidance. But no one wanted to mention the “d-word.”

“We didn’t want to approach it,” she says, “because John wasn’t approaching it. We were all holding on; we were resisting. John felt so guilty to be that sick. He’d always been such a hero, and now he was leaving his family and his boys.”

A friend suggested that Gersten–Vassilaros contact Chodo. Although she was initially resistant, she was exhausted, frightened, and yearning for someone to lead them through these unknown waters. Though not a practicing Buddhist, Gersten–Vassilaros reached out to him. “The minute I met Chodo, I felt infinitely safe and provided for. I knew that his gentleness and strength were exactly what my husband would respond to,” she says.

Chodo first spoke to John alone. Chodo has never revealed to Gersten–Vassilaros what they talked about, but she saw a change in John after that.

“What Chodo offered was an invitation to have a sublime experience — one that could hold a spectrum of emotion.”

“There was a lot of grief in me, and I would beg him to stay, saying, ‘How am I going to be okay, how will I do this?’ And he’d say, ‘You will, you will.’ Then one day he said, ‘Not my problem anymore.’ This is a person who was Mr. Fix-It, so it was great for him to say that, because it was true. I think Chodo gave him that language—that’s nothing he ever would have said before then.

“Chodo gave John permission to die. Then we invited in the boys to talk, all of us. Chodo said, ‘It’s time. It’s time to believe that this passing will occur.’” Gersten–Vassilaros says Chodo opened their hearts when “that which isn’t spoken” suddenly was spoken.

“What Chodo offered was an invitation to have a sublime experience,” she remembers, “one that could hold a spectrum of emotion—‘We’re going, here we go, we’re on the way, this is the nature of things, here we are together.’”

She says that moment of acknowledgment was so full of life because it included the reality of death. “Something was beginning and we would now get through it knitted together, with John. All of the contradictions were in the room with us—love, dread, fear, doubt, patience.”

Three weeks and three meetings with Chodo later, John died. Gersten–Vassilaros says it was an undeniably beautiful experience.

“John was with it and there was no more faking it. Everybody was coming to say goodbye. And when he passed, we lit candles, sang songs to him we’d sung our whole life, and said prayers to him.”

Chodo had advised the family on washing the body, and had given them a piece of fabric to wrap John in. “My husband was so thin that he was wearing my little son’s shorts and my middle son’s top.

“We decided to bury him in those clothes and fabric,” says Gersten-Vassilaros. “These rituals were not familiar, but they meant something, because they were brought to us by someone who seemed so knowledgeable.”

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Alexandra’s husband John with their sons Tonio, Stefano, and Luka.

Gersten-Vassilaros says that it was the reaction of her sons that grounded her in the beauty found in loss. “The boys touched him, they kissed him, they loved him, they hugged him, they thanked him, they wailed like animals, holding his head. I kept thinking to myself, ‘Alexandra, you have everything you ever wanted right here and now.’

“I couldn’t believe how activated they were at death by love. I knew instantly my boys were going to be okay. They had had a depth of experience that most people their age don’t have. They’ll never not know death. They’ll never not know love and gratitude expressed. Death is an opportunity for expression, and we made death part of life. Chodo allowed us to do that.”

Gersten-Vassilaros now leads a writing group for healing and grief at NYZCCC. She says we resist moments when we think our hearts are going to break, but what really happens is that our hearts break open.

“The beautiful, hard truth is that we can be present in the mystery of death,” she says. “We can sit in love and be okay. It doesn’t kill us. Intimacy doesn’t kill us. Death doesn’t kill us. It’s only the inability to express ourselves that feels so dreadful. That moment we had together as a family when John died, it’s going to help me when I die. It was such a beautiful bon voyage. ‘So long. See you soon. Love you so much.’”

Simple Human Kindness: Frank Ostaseski

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The Zen Hospice Project in San Francisco was the first Buddhist hospice in the U.S. “None of us know what we were doing,” Frank Ostaseski says. “We just started taking care of each other.” Photo by A. Raja Hornstein

In the 1980s, Frank Ostaseski saw that some people had nowhere to die.

“In San Francisco, 30,000 people were diagnosed with HIV,” he says. “We were ground zero for the epidemic in the United States. Most traditional hospices at the time didn’t accept people with AIDS.” Ostaseski, then a home health aide and member of the San Francisco Zen Center, stepped in to help.

“None of us knew what we were doing. We just started taking care of each other.”

In 1987, Ostaseski helped found the Zen Hospice Project, the first Buddhist hospice in North America. “We were dedicated to people who had no support systems,” he says. “They had cancer or AIDS or an addiction or multiple mental issues. They were on the margins of society. In the beginning, we worked on the street, and later had a physical hospice and long-term care facility.”

Hospice care at the time was mostly a medically-driven model offering some emotional and psychological support. “One thing that was different about Zen Hospice was that all the caregivers, staff, and volunteers had a spiritual practice. So they could bring in calm stability, emotional availability, mindfulness, and fearlessness developed in practice,” says Ostaseski. “But we didn’t teach people to meditate, nor did we impose our ideas about death and dying. We created a beautiful and receptive environment in which the residents felt loved and supported, and where they were free to explore who they were and what they believed.”

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Frank Ostaseski has distilled the wisdom he’s gleaned from caring for thousands of people who are dying into the five invitations to live more fully. Photo by A. Raja Hornstein.

The Zen Hospice Project became a model for other Buddhist-inspired care facilities. It provided volunteers for the Maitri Hospice, which was started by Issan Dorsey, a drag performer, former drug addict, and abbot of the Hartford Street Zen Center. Maitri Hospice provided care for gay men dying of AIDS, including Issan Dorsey himself in 1990.

Ostaseski has continued his work as a leader in end-of-life care, and in 2004 he founded the Metta Institute to provide education on spirituality in dying. In his recent book, The Five Invitations, he offers the living what he’s learned at the bedside of thousands of people as they died. He distils the wisdom of the deathbed into five invitations to be fully present in life:

  1. Don’t wait.
  2. Welcome everything; push away nothing.
  3. Bring your whole self to the experience.
  4. Find the place of rest in the middle of things.
  5. Cultivate “don’t know” mind.

Ostaseski has learned that the activities of caregiving are quite ordinary. He writes, “You make soup, give a back rub, change soiled sheets, help with medications, listen to a lifetime of stories lived and now ending, show up as a calm and loving presence. Nothing special. Just simple human kindness, really.”

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One of the unique things about the Zen Hospice Project was that all of the caregivers had a spiritual practice. Photo courtesy of Zen Hospice.

Yet Ostaseski has also discovered that participating in these ordinary activities can lead to a profound awareness of your own death. “Whether we are the ones making the beds or the ones confined to it,” he writes, “we have to confront the uncertain nature of this life. We become aware of the fundamental truth that everything comes and goes: every thought, every lovemaking, every life. When I’m sitting with someone who’s dying or their family member, I’m always looking at my own relationship to death and at my own fear. Otherwise, in what I say to the other person, they will know I’m just guessing, and they will sniff out my mortality.”

Ostaseski is not romantic about dying. “It is hard work,” he writes. “Maybe the hardest work we will ever do in this life.” What he has discovered makes a good death, whatever that means individually, is the willingness to live in the deeper dimensions of what it means to be human.

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The Maitri Hospice, founded by Issan Dorsey and the Hartford Street Zen Center, care for gay men at the height of the AIDS crisis in San Francisco in the 1980s. Photo by Morgan Alexander.

Ostaseski says there are four elements to be considered when helping a person to die well:

  • Mastery: having someone who can help manage pain
  • Meaning: having someone who can help sort out what has value in life
  • Mystery: letting go of meaning and entering the land of unanswerable questions
  • Mindfulness: being present with every aspect of every state of being.

“When we only die with death as a medical event, we sell death short,” Ostaseski writes. “We rob it of its holy significance. In caring for each other, we must attend to both task and relationship. Without a relationship to each other and the realization of intrinsic values, purpose, meaning, and spiritual growth, there is a loss of soul. We split off the secular from the secret.”

Ostaseski says he has seen positive changes in end-of-life care over the decades, including a willingness to talk about death and more choices available for how people can die.

“We’re starting to deal with the whole process, the whole human being, the whole process of dying,” Ostaseski says. “Buddhism’s not enough and medical care’s not enough. But we are finding ways of integrating and blending these models.”

Spiritual Care: Joan Halifax

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Zen teacher Joan Halifax saw the gap where medicine and humanity did not meet and worked to rehumanize end-of-life care. Photo by Noah Rossetter.

As a faculty member of the University of Miami School of Medicine in 1970, Joan Halifax decided there had to be a better way to die.

“One thing that continually concerned me was the marginalization of people who were dying, the fear and loneliness they experienced, and the shame and guilt that touched physicians, nurses, people who were dying, and families as the waves of death overtook life,” Halifax writes in her book Being with Dying.

“I sensed that spiritual care could reduce fear, stress, the need for certain medications and expensive interventions, lawsuits, and the time doctors and nurses must spend reassuring people, as well as benefit professional and family caregivers, helping them to come to terms with suffering, death, loss, grief, and meaning.” Thus began Halifax’s quest to rehumanize the end of life.

Halifax is now a respected Zen roshi and founder of the Upaya Zen Center in Santa Fe, New Mexico, which offers training in end-of-life care. After almost fifty years working in the field, she has seen the gaps where medical care does not meet humanity—not only for the patient, but also for the clinician.

“Medical training can sometimes involve both vertical violence and horizontal hostility, with various forms of bullying and without an emphasis on self-care. So clinicians are stressed out and facing high-demand situations of great criticality,” Halifax says. “The sense of not being able to meet a patient intimately and to provide a connection that allows real care to happen discourages and demoralizes clinicians.”

“Buddhism has more resources for dying people than any of the other traditions that I’m currently aware of.”

While economic pressures contribute to the dehumanization of medical care, Halifax says that medical technology, while offering great benefit, also creates a separation between clinician and patient. “It disallows the kind of intimate contact that doctors and nurses had in the past with their patients, which was so much more focused on care. Now the emphasis is on cure.”

Compassion is the key to balancing the scales of cure and care, Halifax says. “When we work with clinicians at Upaya, we acknowledge the challenges they face—pathological altruism, burnout, moral suffering, empathic distress, and disrespect. We teach them how to work skillfully with these challenges and give them tools to help understand the value of compassion in relating to patients.”

That involves discovering and cultivating intimate connection—with oneself and with others. A Zen priest who has explored many different religious traditions, Halifax began to practice Buddhism in 1965. “As I worked with dying people, caregivers, and others experiencing catastrophe, I practiced meditation to give my life a strong spine of practice and an open heart from which I could see beyond what I thought I knew,” she writes. “Buddhism has more resources for dying people than any of the other traditions that I’m currently aware of. Each of the Buddhist traditions offers various contemplative technologies that are profoundly helpful in supporting us not only in living, but also in dying.”

“The Buddhist traditions offer contemplative technologies that are profoundly helpful in supporting us not only in living, but also in dying.” Photo courtesy of Upaya Zen Center.

In Being With Dying, Halifax offers tangible tools for navigating the unknown. “I wanted to essentialize some of the key practices that I feel both people who are dying and caregivers can use as they face suffering and face death,” she says. Practices such as meditation and asking specific questions bring out the value of inquiry, Halifax says. “It’s not just somebody telling you what death is like or why it’s important to prepare for dying and death. It’s asking ourselves questions so we understand that wisdom exists within us. We can develop the capacity to discern deeply and to live our questions.”

Mediation practices are particularly beneficial when we feel helpless, when we don’t know what to do or say. “Often we feel that silence and stillness aren’t good enough when suffering is present,” Halifax writes. “We feel compelled to ‘do something’—to talk, console, work, clean, move around, ‘help.’ But in the shared embrace of meditation, a caregiver and the person who is dying can be held in an intimate silence beyond consolation or assistance.”

“Language can loosen the knot that has tied a person to the hard edge of fear and bring them home to compassionate, heart-opening truths.”

Halifax says that when she is sitting with a person who is dying, she asks herself, “What words will benefit this person? Does anything really need to be said? Can I know greater intimacy with this person through a mutuality beyond words and actions? Can I relax and trust in simply being here, without needing my personality to mediate the tender connection we share?”

Halifax acknowledges language does play an important role in end-of-life care. “Language can be a distraction and a way that we push away intimacy. But language that is authentic, honest, unprescribed, spontaneous, and about connecting can be very important for both the caregiver and the person who is dying. Language can loosen the knot that has tied a person to the hard edge of fear and bring them home to compassionate, heart-opening truths.” Halifax says language and silence are sister gifts we can use to prepare us both for dying and for caregiving.

At NYZCCC, Koshin confessed to me that the night before, when he got the call from Michael Stone’s wife, he didn’t know what to do.

“I said, ‘What can I do for you?’ Carina said, ‘He loved you so much and just for you to know that he’s dying right now is what you can do for me.’”

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Robert Chodo Campbell says that sometimes what is needed most is simply to acknowledge that death is in the room. Photo by Sean Kernan.

“I wouldn’t have thought that was what was needed,” Koshin marveled. “I have lots of skills to offer, but what was needed in that moment was just to hold the whole thing in my heart, because we were loving friends.

“I was reminded, once again, that you don’t know what is needed. Those are the fundamentals of this work—dropping your ideas and coming back into your direct experience. That’s scary shit for most of us. I know it was, and still is, for me.”

As I left NYZCCC after a day of sorrow, stories, learning, and laughing, I realized that I knew only one thing for sure. That I too didn’t know what to do when death met me at the door that morning. And starting with not knowing, when facing death, is perfectly okay.