Awake at the Bedside: Contemplative Teachings on Palliative and End-of-Life Care. Edited by Koshin Paley Ellison and Matt Weingast. Wisdom Publications. 346 pp. $19.95.
This all began when Koshin Paley Ellison’s Grandma Mimi—certainly the most adorable character in this book, and perhaps the wisest—asked if he could look after her while she stayed in New York. One daughter wanted her to move to an assisted living place in Atlanta. Her son wanted her to move to Syracuse. But she wanted to stay where she lived and worked; she was still going into her law office full time at 83. I don’t find it surprising that she asked. What seems astonishing in this day and age is that her grandson said yes. Not only did he help her with occasional visits to doctors, then late-night ambulance rides to the hospital, but he moved into hospice with her during the last six weeks of her life.
I’m full of admiration at such devotion. It was her suggestion that Koshin and his husband Chodo start “an organization that helps people learn about meditation and how to care for people.” The two men changed their lives and started the New York Zen Center for Contemplative Care. Thus their life’s work and, indirectly, this book.
The story of Mimi—two pages of expert storytelling—really includes the whole message. It’s while they’re in hospice that she says, “Do you know what’s strange? So few people who work here, or visit, seem to reflect on their own lives. They’re all scurrying about. Why don’t they look at me? Why is there so much fear in being with another person?”
Good question. I suspect that in this case the reason had to do with the fact that she was dying, and that they would be facing death (though one might think they’d be ready to do that, since they worked in a hospice facility). But that isn’t the only reason. Just look around.
What she found was that Koshin and Chodo were present with her in a way that other people could not be, and she credited their meditation practice. She had been prejudiced against it before, because she thought it went against their Jewish heritage, but saw the value of it over time. Everyone who practices knows that not all Buddhists are terribly present, just because they’re Buddhists. But these men apparently were.
I’d love to tell the whole story of this remarkable relationship, but I’ll leave the rest to Ellison. I do think that everything you need to know about caring for the dying is in that two-page preface. You could read that and skip the rest of the book.
But don’t do that, because you’ll miss a great deal of excellent material. Ellison and Matt Weingast have done a remarkable job of collecting teaching that is helpful of end-of-life care. Everyone is here from Elizabeth Kubler-Ross to Ram Dass to Issan Dorsey to Shodo Harada to poets like W.S. Merwin. (And I should mention for full disclosure that there is a chapter I worked on myself with my teacher Larry Rosenberg, from Living in the Light of Death.)
All of the teaching in this book is helpful, but it seems apparent when people are reciting teachings they’ve heard somewhere, as opposed to telling lessons they’ve lived. The lived lessons are always better. I would also say—something I’ve told writing students for years—that the most effective thing in any kind of teaching is telling stories, or letting people tell their own. We learn more from stories than from any number of “wisdom” teachings. I’ll remember Grandma Mimi long after I’ve forgotten passages of scripture.
What becomes apparent is that the most important thing in end-of-life care is physical presence. Some of us are more present than others, but even if it’s difficult for you, even if you can’t be as present as you’d like, physically being there is the most important thing. And you don’t need to bring anything. It would actually be preferable if you didn’t. People who try to bring wisdom to someone who is dying are usually just talking over them, giving them something they don’t want. What’s important is to watch and listen, and find from them what they need. I vividly remember Larry Rosenberg describing his mother’s death bed, how when he told her just to let go, that it was all right for her to go, she clutched his hand all the more fiercely, but when he told her what a wonderful mother she had been, how much her whole family loved her, her grip relaxed. So much, he said, for preaching the dharma to his dying mother.
The problem with reviewing an anthology is that you want to mention every piece you liked. I put check marks beside the pieces I especially liked, and found I had checked two-thirds of the prose pieces (I liked all the poems, which are scattered throughout), so I won’t be able to mention everything. I hate to focus on this one couple, but the other story that moved me the most is by Ellison’s husband Robert Chodo Campbell, who works as a chaplain in a New York hospital. (This piece is featured in the current issue of Tricycle.)
Campbell was confronting a situation that seemed difficult but common: a 62 year old Puerto Rican man was dying with cancer and had actually accepted it, but his wife of forty years, three months, two weeks, and three days (she was counting) was not. She wasn’t a close-minded person; when Campbell admitted he was a Buddhist priest, not Catholic—after she had called him Father—she said, “That’s okay, Father. The Lord has sent you to us.” And he, for his part, didn’t worry about the dogma of Buddhism. He was happy to join hands and pray with them, for relief of Marcelo’s suffering, and for God to watch over them both in the difficult days ahead.
With great skill and sympathy, Campbell was present with this situation, listening to the two of them, allowing Marcello to be the one to explain what he meant when he said, “I want to go home and be with my father in his garden. . . . I won’t be sick when I am there. I will be happy, and I will be waiting for my darling Maria, but she does not have to rush.” It was because Maria loved her husband so much that she didn’t want him to go. It wasn’t fear that was in the way for her. It was love.
Campbell is actually present with Marcelo as he dies, and doesn’t summon Maria, because there isn’t time. He asked the doctor and a nurse to stay while he prayed for Marcelo, and had a moment of silence—“It was the first time I saw a doctor cry”—and he stayed with Marcelo long afterwards. His presence was important even then.
“If you have ever been in the room at the moment of someone’s death, you have probably experienced the shift in energy that occurs and sometimes remains for minutes or hours afterwards. I call it the Silence of the Leaving. …
“Within the silence that follows the final breath of the dying person is the certainty that something is occurring. In the nonmoving movement of air in the room one senses a deep, deep loneliness and at the same time the connectedness of everything.”
I respect Buddhist teachings and well-known Buddhist teachers, and was not surprised at the excellent selections from Judy Lief, Rodney Smith, and Norman Fischer, but the most moving stories in this book were by people I had never heard of, like Kirsten DeLeo, Betsy MacGregor, Fernando Kogen Kawai, Frank Ostaseski, Rachel Naomi Remen, and Ira Byock. The editors of this book have put it together with the same care that they take over the dying. It’s a vital book for those interested in dying, and in living.
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