The morbid book group

[FYI, readers, I have a poem in this anthology, which relates to this post.]

~

A little over a year ago, I was invited to participate in a book discussion group that  focuses on texts that offer varying perspectives concerning health, surviving cancer, different cultural views of aging, and dying; books on “dying well,” hospice and palliative care, and on hope and healing; books on chronic pain and on neurology and the medical establishment, on birth traditions, on the history of medicine. We have also read The Tibetan Book of Living and Dying by Sogyal Rinpoche, Still Here by Ram Dass, and discussed books that have topics such as placebo effects, psychology, alternative medicines, the pharmaceutical industry, hospitals, the training and practice of doctors, and the death & dying ‘industries,’ including works by authors with personal and moral perspectives on how to live (and how to die). The people involved have included a pediatric palliative care expert, a NICU nurse, a hospice team spiritual counselor, a minister, a former nurse and massage therapist who’s a tai chi instructor, and others–most of us “of a certain age,” by which euphemism I mean we have been living through the experience of having parents in extreme old age and of having long-time friends who now contend with chronic or potentially fatal illnesses. At least one of us has survived cancer.

For a perspective on how most Americans view a serious study of such topics, I offer my husband’s assessment. He calls this “the morbid book group.”

In fact whenever I mention that I participate in a book group (a popular American activity), people ask me if the group has a theme; I tell them, “The theme is medicine, and wellness, and how we die.” And there’s inevitably a pause, and usually my friend asks, “Isn’t that kind of depressing?”

No. It has not been depressing, in fact. I have gained more than I can say from these books and from our small group discussions: information, perspective, philosophy, insight, dare I say wisdom? Not to mention freedom to talk about those things we tend to evade in polite conversation, the space in which to say “This really sucks” or “This saddens me deeply” or to ask, “What can we do?” The book selections have led to great discussions–and have helped me to forge some new friendships as well as to confront and accept different points of view on controversial issues surrounding health care. And death, yes (hello morbid books!), and grief, and–most of all–compassion.

Difficult books? Challenging reading? Have I ever shied from it? I relish exploring this kind of non-fiction-fact-science-ethics-cultural criticism. Participating in this book group is one of the highlights of my current life experience; it’s up there with my long-running poetry critique group and my MFA years in terms of transformational engagement and exchange of ideas.

Below, a list of some of the books we have read and talked about. Just in case any of my readers wish to begin a morbid book group of their own.

~

Radical Remissions, Kelly A. Turner

Knocking on Heaven’s Door, Katy Butler

Buddha’s Brain, Rick Hanson

Death’s Door, Sandra Gilbert

Living with a Wild God, Barbara Ehrenreich

Still Here, Ram Dass

Being Mortal, Atul Gawande

The Anatomy of Hope, Jerome Groopman

The Tibetan Book of Living and Dying, Sogyal Rinpoche

Birth, Tina Cassidy

The Empathy Exams, Leslie Jamison

Counterclockwise, Ellen Langer

The Pain Chronicles, Melanie Thernstrom

Choosing Civility, P.M. Forni

Healing Spaces, Esther M. Sternberg

Die Wise, Stephen Jenkinson

…& more ahead, as we plumb consciousness, placebos, the medical hierarchy, and compassionate ways of living in the world. By the way, readers–suggestions for further readings are welcome!

 

 

Hope & meaning

Hope. Meaning. Zen?

I have been thinking about hope lately for a number of reasons, due in part to a conversation with a person of my acquaintance who feels very strongly that humans have destroyed the planet irreparably, that civilization is past the tipping point, and that what many people term Armageddon or apocalypse is not merely inevitable but near. One might say she has no hope for the future.

This woman is generous, creative, happy; she is a lively activist who advocates for artistic and social justice causes–even though she has no hope for the future. Why does she bother? She might serve as a real-life example for a philosopher’s thought experiment or dilemma on the self-interest theory.

She seems quite sane. I think she illustrates how hope and meaning differ.

Hope leans inevitably toward the future. It signals a desire for a circumstance we do not have and may never attain. Even when stated in the present tense, it indicates a temporal shift, an implicit recognition of a future: “I hope things stay exactly as they are” implies there is a risk of change.

Hope is related to faith, unprovable yet deeply felt, something in which we believe (against all rational proofs).

Meaning, however, has more substance. We do not believe in meaning, we discover it. Meaning is a found thing which acts upon us by allowing us to take action…meaningful action. Meaning is temporal in the sense that it takes place in time as we understand it. It possesses an unusual characteristic in that it needs no outcome even as it operates in real time in our lives. Meaningful existence keeps us moving, and when we lose life-meaning we are likely to feel even more devastated than when we lose hope.

My acquaintance lives her life in a meaningful way, doing things that nurture a sense of meaning in her life even though she is fairly certain the outcome of her actions will be negligible. Her purpose is to share with or add meaning to the lives of others, knowing she cannot rescue everyone or steer the earth’s denizens toward utopia.

She is one of the more contented and least-anxious people I know.

After mulling these ideas over, I found myself returning to an overly-familiar Dickinson poem on this topic, the one in which she calls hope “the thing with feathers”:

Hope by Dickinson.

Consider her metaphor. Hope flies; it can escape us. I have held birds and know from experience they are not easy to catch nor to maintain a hold upon. Hope flies into its future without us even while it blesses us with its singing. What have we got then, earthbound beings that we are? A wordless tune, something that comforts without asking for anything in return–if we accept the tune as comfort enough (and we may not).

Perhaps what keeps us going, really, is not hope but the dailiness of our small but meaningful pursuits. Dickinson writing even when no one was reading. Each of us accomplishing whatever seems necessary, art or baking, advocacy or gardening, regardless of result.

Chop wood, carry water.

 

Yearning

For about as long as I can remember, my favorite Christmas carol has been “O Come, O Come, Emmanuel.”

Today, as I listened to an instrumental version scored in a baroque style, I had an insight as to why I have such fondness for the piece. Partly, the appeal is the antiquity of the tone: the carol is quite old, veni veni featuring in sacred songs as far back as 8th-century antiphons, though most sources I’ve checked cite the version we know as dating from the 12th-15th c.

Hence its minor key and simple “sing-ability.” I’m not a good singer myself, but I can sing this carol. The range works for most of us.

But that wasn’t what struck me this morning as the music surrounded me in my car en route to work. What I noticed—felt, in my marrow—is the sense of yearning in this carol. There is something particularly human in the minor-key longing for release, relief, joy, escape, liberty, union with a beloved other, desire that is both physical and spiritual, the yearning for renewal. Not hope but the desire, the longing for hope.

This sense resides in the tune itself, not just in the words of the carol whether Latin or French or English. “O Come, O Come, Emmanuel!” in the text I know best is translated by John Mason Neale and Henry Sloane Coffin, yet the heart-breaking anticipation this carol captures for me has less to do with the rephrasing of Isaiah than with the poignancy of the musical prayer it evokes in me. A sigh, a wisp of possible exultation that is not exactly a promise I can understand but which stays inside me waiting to be awakened.

For various reasons, that yearning for hope resonates with me this year. And always.

Ann E. Michael