To Live Well, Read About Dying

The taboo about death has been changing recently — a rising “Death Awareness” movement has been helping to open up conversations about death and dying. “Death Cafes” allow people meet to discuss death in an open, friendly environment. Unfortunately, COVID-19 has also pressured us to consider death recently. Books written by those who are facing the end of life can help us think about what the last phase of life involves before we are thrust into the situation unexpectedly ourselves.

Thinking about dying is not merely philosophical; it is also practical. Memoirs of dying can get us talking about physician-assisted suicide or the importance of completing advance directives, and even nudge us into rethinking how we live our lives. These books deserve our attention and a wide audience. Instead of being dreary, they are nearly universally uplifting as well as fascinating.

People who are dying are the same as everyone else, but they also live in another world, apart from others. They have hidden sources of pain, vulnerabilities that are difficult to imagine unless we have been in their place. Several prominent memoirs written by dying persons have been authored in the last few years, including Paul Kalanithi’s When Breath Becomes Air, Nina Riggs’s The Bright Hour, Duke Divinity professor Kate Bowler’s Everything Happens for a Reason: And Other Lies I’ve Loved, and Christopher Hitchens’s Mortality.

As an end-of-life ethicist, I want to know as much as possible about death and dying so that I can help others navigate difficult territory. But I also want to prepare for my own death and hopefully die well once the time comes. Indeed, Plato thought that philosophy is “training for dying.” Since everyone dies, why not prepare for it? Meditation, philosophy, spirituality, and religion all offer avenues of preparing for death, but it occurred to me that the best preparation would be learning from the experiences of those who have had to face it before. So I read their books.

Authors facing death are often honest and direct. They frankly reveal the inner lives of our dying grandparents, parents, friends, and others. They want to tell us about the lives they lived, the lessons they learned, and how we can improve the dying process going forward. They shed light on the various ways we unknowingly stifle or worsen their pain.

In her memoir, The Unwinding of the Miracle: A Memoir of Life, Death, and Everything that Comes After, Julie Yip-Williams writes for instance that she hates “the rhetoric of war” we often use when speaking of illness, because wars have winners and losers: “Will you judge me a loser when I die because I succumbed to my disease? Will you judge me a loser if I simply choose to stop treatment and stop actively ‘fighting?’”

Kate Bowler goes even further and includes a helpful appendix to her book listing the things we should never say to people who are dying or grieving for a lost loved one. These include that “everything happens for a reason” or “Well, at least…,” a phrase which often minimizes suffering. The appendix is worth the price of the book all on its own, and I believe every caring person wishing to talk with ill or dying people should read it.

Dying persons write to inform us, to inspire us, and to make sense of their conditions. They do not want to be coddled. They do not want to be spoken to as if they were children or a sensitive eggshell that could break at any moment. They want to speak and laugh with visitors and others for the company, for the distraction, and for the small moments of joy in sharing something that is not about their condition. They take part in the universal struggle for the meaningful life, the happy life, the life worth living. The authors are writing for themselves and, in the case of Kalanithi’s book, as love letters to their young children. But they are also writing for all of us — for everyone who lives their lives for the sake of their future selves instead of the present, and for everyone who acts as if they are immortal.

I found Kalanithi’s When Breath Becomes Air to be the most moving and insightful of the books. Kalanithi had completed medical school and was in a neurosurgery residency at Stanford with a promising future when he suddenly fell ill. He discovered that he had a rare form of lung cancer, one which would cut short his future plans, including to have a family. Kalanithi wrote beautifully on the process of coming to terms with his impending death and viewed his experience as a way to get to know death in the most intimate terms.

“As a doctor, I had had some sense of what patients with life-changing illnesses faced — and it was exactly these moments I had wanted to explore with them,” he wrote. “Should terminal illness, then, be the perfect gift to the young man who had wanted to understand death? What better way to understand it than to live it? But I’d had no idea how hard it would be, how much terrain I would have to explore, map, settle.”

We can read and talk about death in order to take better care of our loved ones and ourselves when the inevitable occurs. The current pandemic makes the reality of death and dying omnipresent, but we should not turn away from it, despite the pain that really looking at it can bring.

Memoirs of dying can change how you think about death and dying, how you treat people who are ill and suffering, and even how you live your own life. That is, if you can summon the courage to read them.

Ben Sarbey is a PhD student in philosophy at Duke University who is writing a dissertation on dying well.

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