Medical technology has gotten so good at keeping people alive, we’ve forgotten how to die. This forgetting has happened with the best of intentions—namely, we want to preserve life because it is precious and fleeting. But because so many of us are stuck in this mentality of trying to postpone death through medical miracles, we often miss unique opportunities for insight and connection at the end of life.
Fortunately there are a growing number of organizations that are working to remind us how to die by showing us what compassionate care at the end of life looks like. Last month I attended the annual fundraiser for New York Zen Center for Contemplative Care (NYZCCC), an organization that trains caregivers in the art of helping people prioritize their personal goals and values at the end of life. They emphasize quality of life and emotional healing while working in a healthcare environment that often sees death as a failure to cure disease and illness, rather than a human event that we will each experience. “We are trying to change the dialogue around end of life care,” NYZCCC co-founder Robert Chodo Campbell said. “To show that dying is a very ordinary thing.”
The fundraiser featured a performance of The Healing Monologues, performed by Michael Cunningham, Anthony Edwards, Marie Howe, Eve Ensler, and Richard Thomas, vignettes drawn from the experiences NYZCCC caregivers. As expected, many of the stories were deeply moving—sad, funny, and intense—but what was surprising was how many of them were, as Chodo would say, ordinary.
The monologues ran the spectrum of human experience, from a patient’s noticing the everyday details around her hospital bed to the description of a mother smiling while holding her recently deceased newborn. The best stories highlighted moments of unexpected connection, reminding the audience that life is so much more mysterious and complex than we might be comfortable with. One of my favorites was drawn from Chodo’s own experience of trying to remind a patient in the psych ward, recently diagnosed with Alzheimer’s, how to walk.
“Do you remember how to dance?”
She smiles. “Yeah. You bet I do.”
“Come on then, let’s dance.” I begin to hum “The Blue Danube” waltz.
We dance slowly, ever so slowly, out of her room and down the corridor with the staff and patients looking on, not quite believing what is happening. We are like two lovers unencumbered by frail limbs and failing mental capacity, totally and fully in the present moment.
Her eyes shine as if something in the recess of her mind is suddenly awakened. She smiles and I think for a split second that we are in love. We are in love, with each other, with life.
With poignant and human stories like this one—that emphasize spontaneous possibility, the present moment, and sudden awakening—perhaps it isn’t a surprise that Zen groups are at the forefront of modeling what compassionate caregiving and good dying looks like. Zen Hospice Project, an organization similar to NYZCCC based in San Francisco, was recently written up in the New York Times; its Executive Director, BJ Miller, has a popular new TED Talk, “What really matters at the end of life.” Katy Butler, author of the recent bestselling Knocking on Heaven’s Door, which recounts her family’s experiences with her father’s slow decline into dementia and death, is a Zen practitioner. What’s with Zen and death?
The evening meditation at a zendo ends with practitioners chanting, “The Great Matter is birth and death. Life slips past and time is gone. Right now, wake up! Wake up! Do not waste time.” This is a message that our deathphobic culture would do well to hear. In the same way that NYZCCC caregivers help dying patients prioritize their remaining time on earth, reflecting on the reality of death is a powerful spiritual practice that can help each of us shift our perspective on our life. We’re each dying, after all.
The Great Matter is Tricycle’s blog on death and dying by contributing editor Sam Mowe.
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