On Living While Dying
I have all my life been afraid of dying. When a year and a half ago, my husband told me he had been diagnosed with pancreatic cancer, I became determined to grow up and face my fears, and deal with the inevitability of being mortal. The way I confront things is mostly by reading. Since then I have read books from Mortality, Christopher Hitchens' amazing chronicle of the cruel progression of his cancer to Joan Didion's The Year of Magical Thinking, about her husband's illness and death. I read The Cancer Chronicles by George Johnson and The Memoir of a Debulked Woman by Susan Gubar.
I learned two things over the year. The first is that cancer sucks and it is ugly. It got down to, as I would think about my husband's suffering, muttering, "fucking cancer." I also learned over the year, I think, how to accept that it -- death -- happens to all of us. We all get there, one way or another, and then it's done. And it's okay.
Because it is not only about the cancer and the suffering. We all age from the time we are born, and in the beginning we improve the way we function. At some point, our body begins its reversal, things fall apart, and we eventually die.
In some bizarre alignment of the stars, or at least the DVD's that had just come in to the library, I spent five days watching movies that directly and poignantly dealt with dying, including Cloudburst with Olympia Dukakis ("I'm almost eighty; nobody lives forever."), Top of the Lake ("You don't have any worries because when you die you'll be gone; it's the others that will be left."), and a wonderful foreign movie with a dying child which title I'm sad to say I can't find. And two others sprinkled in that also distinctly involved death and dying.
As my husband suffered through three different and unsuccessful chemotherapy regimes, I believed I was beginning to understand and accept my own inevitable dying, as well as his. Finally, over the last two months of his life, I read three wonderful books, two written by physicians, and the last a book of essays by Terry Pratchett.
Internal Medicine: A Doctor's Stories by Terrence Holt is a collection of fictionalized accounts from the start of his medical training. Accounts of surprising misdiagnoses, twists and turns in the relationship between doctor and patient, and poignant stories about patients, families and doctors as they approach death together. New to hospice rounds, the doctor needs to be taught by hospice nurse and patient how to attend and how to treat the whole person. Patients comfort doctor. And the best doctors are always listening.
Atul Gawande has been writing game changing books about the practice of medicine for years. His latest, Being Mortal: Medicine and What Matters in the End, was prompted by his father's path to facing the limitations of aging. Beginning with the physical deterioration of our bodies, Gawande explores through stories of family and patients, the paths that we choose, or that too often choose us. He talks about how medicine has wrestled the process of death away from the dying at great cost, and then describes the various paths that are truly open to us. The development of more humane and human homes for assisted living and hospice care, the way physicians can learn to talk to patients and families so that they can better hear and help achieve the needs and desires of those nearing death. The book shook the earth for me, as I read it in the last days of my husband's life.
Sir Terry Pratchett is infamous for his fantasy series, The Discworld. At age 56, he was diagnosed with early onset dementia, a particular type that causes increasing difficulty with perception and motor skills even as he continues to write (with the help of human, mechanical and computerized aids). A Slip of the Keyboard is a collection of essays. A good portion of the book is about writing, touring and Discworld. He has since his diagnosis promoted Alzheimer's research and there are essays here about his frustrations with his illness and with the limitations of treatment. Finally, he has become a strong proponent of the assisted dying movement, and talks about the need to be able to die with dignity and how various countries have developed the means.
If you read nothing else that I have described, please read Internal Medicine, Being Mortal, and the third section of A Slip of the Keyboard. If you only have time for one read Being Mortal. These three are so, well, human. I am happy they are there to help us wander through our lives and the lives of our loved ones, and guide us to better understanding, and better decisions towards dying with dignity, and living as well as possible to the end.