Awake at the Bedside
a guest post by Koshin Ellison
Author: Koshin Ellison
In Awake at the Bedside, pioneers of palliative and end-of-life care as well as doctors, chaplains, caregivers and even poets offer wisdom that will challenge, uplift, comfort—and change the way we think about death. The following is an excerpt from the book.
In 1997 at the King’s Highway Diner in Brooklyn, my eighty-three-year-old Grandma Mimi held up her spoon of white bean soup and said, “This is delicious. I never want to leave.” Her daughter, my aunt Carol, wanted her to move to Atlanta into an assisted living home. Her son, my dad, wanted her to move to Syracuse. Mimi was still working full-time at a law office in Manhattan.
After lunch we walked back down Ocean Parkway, stopping every five minutes or so to rest on the benches. Back at her apartment, we lay on her couches, eating the caramels she adored. Suddenly she looked at me and asked, “Can I stay here with you?” I squeezed her hand and quietly said, “Yes.”
So began our journey. At first there were occasional visits to doctors, then late-night ambulance rides to the hospital, and finally moving with her into hospice for the last six weeks of her life. “Do you know what’s strange?” Mimi asked me late one night. “So few people who work here, or visit, seem to reflect on their lives. They’re all scurrying about. Why don’t they look at me? Why is there so much fear in being with another person?”
Among the caregivers around my grandma were my fellow Zen practitioners, including my future husband and co-teacher Robert Chodo Campbell. Once people met her, they felt loved by her and kept showing up to sit, sing, and give her the manicures and pedicures she loved. One evening, four weeks into our stay at the hospice, she said, “Call the family and your friends. I think tonight is the night I’m going to die.” After four hours of quiet sitting, she peeked at her watch, sat up, and said, “It isn’t going to happen. Let’s order out for pizza—you all must be hungry.”
I stayed with her for the entire six weeks that she was in hospice, sleeping in a chair at the side of her bed and sometimes climbing in next to her when she seemed frightened or confused. One night she woke me and said, “I’m so sorry. I spent so many years thinking I knew what love was, but I didn’t know anything. I was afraid of what I didn’t understand about you. To love someone is to love everything about them, even the parts I don’t understand or feel comfortable with. Part of me contracted from loving you because of your Zen practice. I felt it was a betrayal of our Jewish heritage. Please forgive me.”
“For what?” I asked her.
“For not loving you completely,” she said. “The way I do now. I now see that there is something so direct about your Zen practice that allows you to be with me in this way. You and Chodo should start an organization that helps people learn about meditation and how to care for people. Learning how to reflect on life and how we are spending our time is the most important thing. Please teach people. Please care for them.”
On the morning of June 23, we awoke together to see the light on the tree outside the window. “Beautiful morning,” she said. “Go get the New York Times and a coffee, sit out in the park, and enjoy the morning.” She looked at me, I looked at her. We embraced, squeezed each other’s hands, and I kissed her cheek. I wept. I didn’t want to leave. I kissed her again on her forehead and walked out.
I sat in the park opposite the hospital in the morning sunshine, drinking my coffee and trying to read the Sunday Times. My cell phone rang. It was our favorite hospice nurse. “Baby, Mimi just died. Take your time and then come over.”
I leaned back on the bench and craned my head to the sky. The branches in the trees were swaying in the morning breeze. A young girl was bouncing a rainbow-colored ball. An elderly man was on the next bench basking in the sun. I felt like my chest was going to burst open.
I called Chodo from her bedside. It was almost impossible to get the words out. “She’s gone,” I said. “Please come here right now.” I squeezed Mimi’s hands. They were no longer warm, and on the windowsill the stargazer lilies she loved so much had opened fully.
We washed her body, chanted, and stayed to witness the funeral director shrouding her and whisking her down the hall. I thought of the Zen teaching that talks about how all we need to do is allow ourselves and the world to change. Easy to say, I thought. And yet, here I was in the midst of my experience of fullness of the pain, grief, love, and joy of my grandma’s death. Everything did change.
Everything I teach now, I learned from my relationship with Mimi. Being deeply in a relationship changes the world. I didn’t know then that my life would pivot to teaching others and to being with many, many Mimis.
Chodo and I changed our lives and began our vision for the New York Zen Center for Contemplative Care, a nonprofit organization that offers direct care and trains people to turn toward life’s great challenges: old age, illness, and dying. Everything we do is grounded in the meditation practice that helped to nourish my Hungarian Jewish grandma. This book you are holding is an expression of Grandma Mimi’s blessing and love—all proceeds will go back to support the center she urged us to create. May the integration of contemplative practice and caregiving serve and heal you and all those you care for.
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