Living Her Dying – Lessons from a Young Woman
By: Celeyce Matthews for Zen Hospice Project and Legacy
2 years ago
The last time I saw “India” she looked like death itself – yet animated, still alert. She was in a truly dreadful state – a skeleton sitting in her wheelchair, drifting in and out of a daze of suffering, occasionally murmuring “Oh god, it burns” as her eyes rolled back into her head. I had never seen such extreme suffering up close before. Anxiety and distress at witnessing her misery welled up fast in me and there was nothing I could do to ease her pain. I did not want to add to her burden with well-meaning, ineffectual fluttering, so I merely sat – quietly close to her, offering only my caring presence.
I calmed myself, without fleeing from that reality, by remaining grounded in the room, in myself, and in the moment. I watched my thoughts and feelings struggle to deal with the situation while I maintained a strong internal anchor of loving stability. I felt an intimacy of shared humanity with her in those final days, although in that moment we were having very different human experiences, and I’m not sure she had much awareness of me at all. I stayed with her, being with her suffering and my own, letting my heart hold us both.
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For over a year I’ve been a weekly volunteer caregiver at Zen Hospice Project’s Guest House, a residential hospice in a lovely restored Victorian home in San Francisco, California, a place dedicated to mindful and compassionate end-of-life care. Every Saturday I spend five hours with people as they live their final days. In the course of these months, I’ve witnessed, listened, shared stories, cried, laughed, sat quietly, fed and bathed – whatever was needed. I’ve been immeasurably moved by the many people I’ve seen come and go, living and dying in these graceful rooms.
Although it’s been about a year since India’s death, memories of this particular young resident of the Guest House linger in my mind. India was six years younger than me, only in her late 30s, the mother of a sweet teenage boy. I watched her slowly waste away from a ruthless cancer over the couple of months she spent with us prior to her death. Yet every time I saw her, she subtly taught me profound lessons through the open and unaffected manner of living she brought to her illness and impending death.
Quirky and amiable, India lived her dying with a kind of mellow authenticity. She never seemed uncomfortably self-conscious, or emotionally cloaked. She was genuine with whatever was happening and did not hold back from expressing it. I don’t know what her process had been before. At the Guest House, I saw no resistance in her. Pain, yes. Sadness, anguish and frustration, yes. Struggle, no. An especially astonishing state of being for one dying so young – a lesson in being with what is. Her ability to be real and raw with everything she was experiencing, I believe, saved her from the further suffering created by denial, retreat and resistance.
India had an easygoing friendliness and curiosity toward everyone around her. She and I shared photos of our children and talked about hairstyles like two friends at a café, rather than as a caregiver attending to someone dying. There was a true feeling of amicable mutuality with her; she did not seem to see herself as separate from the volunteers and nursing staff. This is another one of the major lessons to be learned from being with the ill and dying: it is not “us” and “them,” rather “we.” We are all humans together somewhere on the continuum of living and dying. India’s natural affability made it easy to feel common humanity with her. It fostered an accessibility of heart, with compassion, affinity and empathy rising easily between her and most everyone who met her. It was a gift to all of us.
Despite the incredible pain and discomfort of her illness, India insisted on remaining alert over being pain-free. We who cared for her sometimes had more difficulty accepting her pain than she did herself. We had our own discomfort watching her gruesome disease process, yet she wished to be as awake as possible. She was not a martyr nor was she a drama queen. She did not revel in her suffering. She simply wanted to experience what life she had left as lucidly as possible. This was her life, her death, and she wanted to be there for all of it.
A couple of weeks before she died, longtime friends from out of town surprised India with a visit. I missed their first moment of reunion and heard that she was so moved, tears streamed down her face. Her friends dressed her up in brightly colored whimsical clothes, a floppy sunhat and oversized heart-shaped sunglasses, and took her in her wheelchair down to the garden. They had also brought hilarious fake mustaches for all of them to wear. I served as photographer while India and her friends hammed it up for the camera sporting big, black, goofy mustaches. Love and laughter co-mingled with the sadness of her approaching death and filled the garden and my heart. Another lesson from India: keep living, loving, and playing, even at the end of life.
India’s gifts to us were not sentimental or theatrically heroic. Hers were lessons in simply being with her humanity – and her mortality – as it authentically unfolded. These lessons live on in me. Although we never spoke directly about dying, she actively lived her dying with all of us. Real, alive, open and raw to the end.
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