What We’re Reading: We Know How This Ends

We Know How This Ends: Living While Dying by Bruce Kramer (University of Minnesota Press, 2015)

In 2010 Bruce Kramer was, as he describes it, “reborn in diagnosis.” He had been chalking up physical symptoms (a floppy foot, loss of coordination, fatigue, falls) to aging and a pinched nerve, but an appointment with a neurologist confirmed that it was much more serious: ALS. His book, We Know How This Ends: Living While Dying (co-authored with MPR’s Cathy Wurzer), is a thoughtful, contemplative memoir about relationships, time, happiness, and finding ways to be alive while racing towards death.

ALS is a fast moving, progressive disease for which there is no cure. Everything Kramer had taken for granted about his future goes into a tailspin the moment after a brusque doctor gives him his diagnosis.

In the car, wondering if I can drive. Winter is coming, the hoarfrost coats the few trees lining the parking lot, but the sun illuminates the next few minutes, the day yet to come, life as we know it melting in its weak light. Ev looks at me. She is crushed … And then she quietly says, “Couldn’t they have at least given us a goddamn pamphlet?”

Prior to his diagnosis, Kramer led a very active and full life, both personally and professionally: He took long bike rides with his wife, Ev; went on frequent overseas trips; and was the Dean of St. Thomas University. The nature of ALS would not allow him much time to wallow in despair about the monumental changes that were forthcoming; most sufferers pass away from complications three to five years after being diagnosed. Symptoms that were initially bothersome soon became major challenges.

It’s the unrelenting swiftness of ALS from which this book was born. Essentially, ALS puts the aging process into overdrive. As Kramer acknowledges, we all know that aging and death will come. Yet, most of us march into the future with only an abstract fear of death and, as Kramer puts it, “dis ease.” He uses the term dis ease to describe any difficult event that massively reshapes a person’s future:

Dis ease had always been with me, lying in depths of collective human need, illuminating life’s inevitable sharp edges, its dangerous borders, its precarious balance between good living and catastrophic existence. … Dis ease is true love, soaring in the stratosphere, yet plummeting to earth in betrayal unforeseen. Dis ease is the newborn child … vandalized by the reality of overwhelming disability. … There is not a person who does not know dis ease, boiling in the pit of their gut, on the tip of their tongue, in their muscle memory, in the discord between the life they know and the life they fear.

As Kramer sees it, dis ease need not be a physical ailment, per se, but a significant job loss, the death or illness of a loved one, or the end of an important relationship. His conceptualization of the phenomena that is dis ease is what drives the book — and what makes it much more than an autobiographical account of his experience with ALS. The book becomes, largely, a philosophical and thoughtful account of how Kramer was able to change his perception in an effort to find joy and meaning within the context of his new reality. It isn’t all joyfulness on his part, of course (“I’m no saint and I am pissed” he writes in a blog post); however, the book is laden with meaningful passages about his faith, his family, his friends, his physical experiences in a changing body (skydiving!), and most importantly, love.

 … I have sought to be engaged fully with life as I knew it. Now, it seems more important to engage with life as it is. I hope this means more time with loved ones, both friends and family; more evenings with Ev listening to the local classical station, drinking in each other’s presence and knowing full well it will never be enough; more yoga…more joyful loving visits with Hypatia and Athena, family meals … deep sleep at night … I hope this means more time to think, to listen, to perceive that in the silence is life and death and life again.

Kramer met MPR broadcast journalist Cathy Wurzer in 2008 for a radio piece on Kramer’s work with a local Indonesian gamelan group. They reconnected through mutual friends following his diagnosis, and MPR decided to do a recurring segment featuring Kramer and Wurzer discussing his life with ALS. The two developed a close friendship during the last several years of Kramer’s life. Wurzer prefaces each chapter with brief anecdotes or stories about the dis ease she was facing in her own life during the years she was interviewing Kramer (namely her father’s progressive dementia and eventual death from lymphoma). Her contributions run parallel to Kramer’s, and they provide a helpful framework for the rest of the book. She writes beautifully (“We know how this ends. It ends with sadness that is achingly beautiful and pure love for a life lived full and well.”), and the deep respect towards and connection she felt with Kramer is very apparent in her contributions.

We Know How This Ends is a beautiful book that is vastly more than a memoir about coping with disease. It’s a book about finding meaning and joy in life while being open to our dis ease, no matter the gravity of our external circumstances — because, as Kramer points out, our external circumstances will, at times, be grave. In the end, the lesson here is remarkably simple: we need to seek out ways to find love and peace, if not happiness, in our lives as they are — not as they “should be,” and certainly not as we assumed they would be — by being present, by being open, and by giving, accepting, and recognizing love.

Have you read a book lately that changed your perspective on how you live, or how you view your life? What was it about the book that you found so affecting?

*Cathy Wurzer and Bruce Kramer’s wife, Ev Emerson, will appear at the Har Mar Barnes & Noble on July 27 to discuss We Know How This Ends. Find event details here.