Let’s Talk: “One Man’s Quest to Change the Way We Die”

Credit: New York Times

This NY Times Magazine profile is generating lots of buzz. Why now?

BJ Miller’s TED Talk, “What really matters at the end of life,” has garnered more than 5 million views since early 2015. And now a NYT profile of this man with the remarkable survival story is striking a nerve. As the piece gets shared on Facebook from page to page, what does it tell us about the times we live in, the culture it reflects?

“To be human is really hard”

The day before my Dad’s craniotomy for his fatal brain cancer, his surgeon said to me, “Don’t worry, little girl.” I was nearly 40. “We’ll fix your Dad right up.” How much different might our family’s experience have been with a doctor like BJ Miller?

“…his job was to ‘disillusion’ [the patient] without devastating him…. ‘The question becomes,’ Miller says, ‘how do you incorporate those hard facts into your moment-by-moment life instead of trying to run away from them?’…He couldn’t do much for them, medically. ‘But I’m letting them know I see their suffering…. That message helps somehow, some way, a little.’”

Miller’s own experience with suffering as a triple-amputee – or perhaps the meaning he’s made from his experience – offers an example that counters our culture’s current enshrinement of victimhood, our belief that we have a “right” not to suffer.

“Don’t we all treat suffering as a disruption to existence, instead of an inevitable part of it? He wondered what would happen if you could ‘reincorporate your version of reality, of normalcy, to accommodate suffering.’ Miller refused… to let himself believe that his life was extra difficult now, only uniquely difficult, as all lives are. He resolved to think of his suffering as simply a ‘variation on a theme we all deal with — to be human is really hard,’ he says.”

An Achieved Death

Die Wise author Stephen Jenkinson points out that “die” is an active verb with no passive tense; death is something you do, not just something that happens to you.

Similarly, Miller focuses on how we engage with our death. “He talks about his recovery as a creative act, ‘a transformation,’ and argues that all suffering offers the same opportunity, even at the end of life….”

The writer relies on an exquisite case study to explore these questions: “What is a good death? How do you judge? In the end, what matters?”

But perhaps it’s the profile’s orientation to the Hero’s Journey that reduces this most universal act, one that occurs in and affects the fabric of a community, to a fundamental focus on the individual self. How much of Miller’s compassionate and highly skilled approach reflects our culture’s inherent bias towards “My Life, My Death, My Way”?

Miller asks the patient, “So, what’s your favorite part of yourself? What character trait do we want to make sure to protect as everything else falls apart?” His death is deemed a “good death” because “Randy got to play himself out…. Randy’s ability to be Randy was never unnecessarily constrained.”

To be clear, I’m not questioning all that’s beautiful, and helpfully corrective, in this approach. I’m adding a companion consideration: is death’s highest purpose to help us express our unique individuality?

The Death Space

“The goal, as Miller likes to put it, is to ‘de-pathologize death.'” I fully share that goal. But I also wonder whether Death was consulted in the matter of the PR firms that have now taken this on.

The article tells us there’s now something called “the death space” with a Silicon Valley design firm “helping entrepreneurs disrupt” the space.

Miller is depicted as struggling with where to direct his considerable gifts. “’If I want to keep doing this work, I have to be seeing patients,’ he told me. ‘It’s really easy to get unhelpfully abstract.’ In short, he was spending too much time in the wrong death space.”

The article ends with Miller quitting his administrative job and “committing to the parts of himself that felt most meaningful and trying to shake free of all the other, unhelpful expectations. ‘It’s the same thing I would counsel a patient.’”

A worthy endeavor, as self-help projects go – and a necessary one, for a charismatic and courageous man like Miller in a culture that insists on, then devours, its heroes.

But I’m left with the question: If we are to have a “death space” in these times, how might we broaden our understanding of the role death plays in feeding life, in binding us across time and to each other, instead of the ultimate self-absorption – and loneliness – of “My Life. My Death. My Way”?

“How we care for the dying people in our midst, and how we die when it is our turn: these together are the proving ground, the cradle and the grave both, for every conviction we have about justice and mercy, about the meaning of life, about what love should look like and what it should do. They are the sum of every political instinct we have, every dream of community we’ve nursed along and every faith we’ve been willing to have in a better day. They are where every fascination about the Other World and the Big Story live, and they are where the midnight fear of Nothing comes to call. They are where our immense technical medical wizardry and mastery is visited upon you and those you love, and where the mythic poverty of our time comes to show itself. They are surely where our love of life earns its keep, or shatters. Mostly, though, they are the place where our ability to be a people is forged, or fails. They are where our village is made or broken. They are where we are most ourselves, and most alone. Together they are The Big Tent of our time.” ~ Stephen Jenkinson