The Beauty of a Slow Death is a powerful book about the importance of living each day to the fullest. The author is Michele DeMeo, a 37-year old woman who is dying of ALS and is now receiving hospice care. Her life-affirming theme is that "Regardless of our own stories and limitations, we can choose to create a life that's truly worth living, even if our days are limited." For me, Michele embodies the principle that "when handed a lemon, make lemonade." The book will be of value to anyone, sick or well, who wants to live in a more mindful way.
Michele DeMeo is one of the most remarkable authors I've ever encountered. One day, I received a phone call to Growth House from a woman with a clear but labored voice asking to speak with someone about getting a book published. I am used to getting calls like that, but something was different about this one. The caller had to pause to catch her breath often, and her sentences were short, matching her lung capacity. I'm used to dealing with elephants in the room, so I stated the obvious, remarking "You seem to have difficulty breathing." She confirmed that was so, an effect of advanced ALS. Undaunted by her physical limitations, she was launching what was, for her, a perfectly logical project: write a book. Prior to her diagnosis, Michele worked as a highly-skilled healthcare professional, and had written for healthcare publications.
My instincts told me that one way or another she would get the book done. The result is an uplifting, simple, and transparent statement of how awareness of death can bring intensity and urgency to each moment of life. I would trade this short and intensely honest narrative for a carton of generic positive thinking books (and I have cartons of them that have been sent to Growth House by earnest authors).
The book is not a memoir or blow-by-blow description of life in hospice care. It opens with a brief review of the onset of symptoms that finally resulted in a meeting with her doctor to receive a terminal diagnosis. As she headed home from that tough session, she realized that she "had to really start living. I didn't have time to waste."
The meat of the book deals with the question, "How do you learn to live, really live, when you thought you already were?" Michelle challenges us to rethink the very meaning of "dying" within the context of our own lives. Michele challenges all of us to wake up and smell the roses while we still can. She writes:
Imagine the possibilities that would unfold if we all started looking at the world a bit differently, seeing it as an endless pot of opportunities. Committing ourselves to looking wide and broad, thinking big, loving openly and honestly, being brave, and leaving a lasting impression -- regardless of how many years or decades we are here -- would be one of our greatest gifts.
She shares her own insights while recognizing that, "(e)ach of us will likely follow a different path in this process, although many of our steps will be similar." For her, keys to rebooting her daily life included things like being more honest with herself and others, consciously seeing everything and everyone around her in a new way, learning to be more patient, and setting new goals. Putting the past into perspective, as well as letting go of old resentments, is an important part of the process. Above all, she is "freeing myself to be me". She writes:
The weight of routine and everyday burdens and obligations naturally fell away. I began to see the shape of my authentic self being reflected in the mirror. And I liked what I saw.
Diseases like ALS involve a progressive loss of function that can require a long period of demanding caregiving that affects family relationships profoundly. That is true for Michele, who describes herself as "a 37-year-old gay autistic woman with a terminal illness." One of the joys of the book is the loving and supportive bond that she has with her partner, Johann Becker, who is a registered nurse. The book concludes with an Afterword by Johann, entitled "Beauty is in the Eye of the Beholder: A Caregiver's Perspective".Overall, The Beauty of a Slow Death: Understanding Acceptance and Learning to Live Differently Can Lead to Peace (Volume 1) is an outstanding account of a resilient response to facing death. (The book's subtitle refers to it as "volume 1", reflecting the author's hopeful attitude.)