Personal Perspective: “The body knows how to die.”

By Greg O’Brien

“The art of living well and the art of dying well are one”
— Epicurus, ancient Greece philosopher

My close friend Paul Berry embraced both living well and dying well in his courageous battle with life-ending Bulbar Onset ALS. Paul passed away in peace recently, 15 months after diagnosis.

I wrote about him four months ago on this blog, reflecting on his state of mind in persevering against all odds in this fast track variant of ALS. A skilled psychotherapist on Cape Cod, Paul spent his work life helping others find peace, and in the end he found peace himself from within.

Paul’s final blessing to others came in a soul-searching email exchange with his brother Pete, who asked a question that only Paul could answer.

“I’ve assumed for a while that you've been trying to find peace,” Pete wrote to his brother. “How does one volunteer to end a life still going, still with consciousness and deep feelings?”

Exhibiting the brilliance of his mind in the throes of ALS, Paul responded, casting new light on this disease and how to cope—a road map for others.

I was given copy of the email exchange.

“Your questions are very good, poignant, and not the easiest to bring to closure and conclusion.” Paul wrote to his brother. “Staying alive some nights has been an enormous battle and struggle, sapping me of what little strength I have left. And leaving me fully dispirited.

“Part of this slow descent has involved finding new, simpler ways to feel and think that the struggle is worth it, and so often it is. For example, I've been able to spend some extra special moments with sons Ben and Ross, and with my wife Fran... filling them, and they me, with a deeper emotion than I had known, and I think they had known before.

“Being on the cusp of not being here… brings the reality of being alive to a sharper, almost tangible level. It really simplifies the experience, and brings back the questions that you posed or framed so well. There are still times now—after awaking from the meds hangover—and getting resituated with the new—that I simply enjoy reading my texts and emails, and being surprised or delighted by the expressions of others in kindness and care.

“Then, there's the body itself,” Paul continued. “The body knows how to die. It's almost a natural progression, a shutting down. So, how much does the question of choosing death boil down to whether there's any pleasure left in living? That answer varies, and ties in with just how much suffering is too much suffering.

“Is the answer still in my hands, and still volitional? Yes and No. The body breaking down is really driving the bus, more so now than any indomitable spirit that I may or may not have left.”

An avid New England Patriots fan, Paul concluded his email to brother Pete with characteristic wit; “So here I am with ample time to reflect, to think…Still finding traces or parts of even this precious life…So let go and let God…Either that, or Go Pats!!”

***

Toward the end of Paul’s life, six of us, good friends from church, met regularly with him on Saturday mornings at a local Dunkin Donuts just off pastoral Paines Creek marsh, on the lip of Cape Cod Bay in Brewster. Paul, confined to his feeding tube, could not join in coffee, but we weren’t there for the caffeine. We were there for Paul in faith, hope, and humor

We thrived on making Paul laugh, and he loved laughing at our dumb jokes while facing the obvious of his run. He told us all that he wanted to die with dignity, when the time was right for his family and when he knew it was time to go.

I had the blessing of a final farewell with Paul at his house, surrounded by his wife and sons. He had asked me earlier to be there at the end. In that final moment, Paul—lying in bed, his eyes closed—resonated with peace and grace, almost a glow.

They say that hearing is often the last to go. So in instinct, I put my arms around Paul, spoke gently into his left ear, telling him how much we loved him, and that we would look after Fran and his sons. I reassured him that it was ok to let go and let God. I noticed a sigh in his breathing as we talked.

Paul passed away three hours later.

Rest in peace, my friend! Keep a light on for us…You have inspired a generation.