Michele DeMeo left a message on my voice mail recently. “I know you must be busy,” her message said, “but if you have time I’d like to talk to you. I am terminal with ALS.”
I called Michele back. Physically weakened from ALS, she had pneumonia to boot, and her voice was barely a whisper. We talked about her health and her prognosis. Michele told me that she was an expert in healthcare disinfection, surgical instrumentation and sterilization and that she had recently published a book.
While I can’t remember her exact words, she said something like, “This isn’t your normal book about dying.” She offered to send me a copy. Several days later, The Beauty of a Slow Death arrived. In the interim, I had searched for Michele online. Our conversation had left me curious. That was when I discovered that she wasn’t speaking in hyperbole when she had told me about her professional accomplishments. She really was an expert, up until recently giving talks about surgical instrument sterilization worldwide and publishing scholarly papers one after another. What she hadn’t told me: She is 38.
“I never expected that I would be preparing for my passing at this young age,” she writes in her book. “At the same time, I never expected that this very experience would be credited for helping me live life to its fullest, appreciating all things, big and small, that each day has to offer. I have found this journey to be a beautiful one, and I believe that if we could just begin talking about death and dying earlier we would be better prepared to focus on what really matters before life’s door begins to close.”
Self-described as a “gay, highly-functioning autistic woman,” Michele writes about the cold manner of the physicians who gave her the news about ALS, and about coming to terms with her past and future. At the same time, she manages to write a motivational book about embracing life as much as one can in the face of terminal illness, about personal growth, about the importance of humor in the face of adversity.
“Whether we’re told we have days or months to live, or we have every reason to believe that we’ll be here 50 years or more, the bottom line is we owe it to ourselves to live the best we can,” Michele says. “Our life goals and abilities may change over time, but we still have the power to take charge of our lives in a positive, meaningful and productive way.”
Despite her pearls of wisdom, Michele’s book likely won’t be a best seller, because she’s right, most people don’t want to think or talk about death, even when faced with it head on. But her very honest book is worth reading. This isn’t your normal book about dying.
Hospice Foundation of America will interview Michele DeMeo for its fall program, Artificial Nutrition and Hydration at the End of Life.
The Beauty of a Slow Death – Understanding Acceptance and Learning to Live Differently Can Lead to Peace, is available for purchase online from Amazon, Barnes & Noble and www.createspace.com/3805209. Michele is donating a portion of the proceeds from the book to the International Association of Health Central Service Materiel Management training and education.
Amy Tucci, President and CEO, Hospice Foundation of America