Despite being diagnosed with ALS, Brewster man finds the will to persevere

“I have heard that our culture does not suffer so much from the forces of darkness as from the forces of superficiality.”

– Kathleen D. Singh, “Grace in Dying”

Paul Berry knows something about the state of mind. Nothing superficial about this man.

My close friend Brewster earned a master’s degree in social work from Boston University in 1978 – working first with the Massachusetts Department of Mental Health and Department of Social Services, then as a Licensed Independent Social Worker (LICSW ) in the Boston area and on Cape Cod.

Berry, 71, has dedicated his professional life to helping others find peace – often a flash of daylight through thick fog.

Writer Greg O'Brien, left, and his friend Paul Berry take

Paul himself has been an avid runner most of his life, including two Boston Marathon appearances. His best time: a respectable three hours and 48 minutes, or an average of eight minutes over a 26.2-mile course.

Now Paul is running for his life.

In July 2021, he was diagnosed with bulbar-onset ALS, a complicated and accelerated variant of this horrible disease that goes far beyond the dark symbolism of an ice bucket challenge.

ALS, also known as “Lou Gehrig’s disease”, can strike in two ways: limb onset and bulbar onset. Limb onset initially affects the limbs (arms and legs) and accounts for the majority of all ALS cases. With bulbar onset, symptoms begin in the neck, disappearing much faster than limb onset.

Stephen King could not have devised a more gruesome plot.

After the diagnosis was confirmed at Mass General (originally diagnosed by Cape Cod Hospital expert neurologist Dr. Michael Markowski), Paul’s hopes were dashed, but his faith persevered. Yet he was devastated and asked for parole from this death sentence.

But there isn’t. The realization stunned his wife Fran Schofield and two sons, Ben, 31, a paramedic in Virginia, and Ross, 27, a union organizer for the Massachusetts Teachers Association.

Learn more about the author:‘Have you heard of Greg?’ documentary about O’Brien’s early onset Alzheimer’s disease

Today, Paul has lost most of his speech, often communicating via a laptop keyboard and a voice-activated device similar to that used by the late theoretical physicist Stephen Hawking. Paul can no longer swallow or eat solid food. Mass General doctors fitted him with a gravity-fed gastric feeding tube, a device that delivers vital nutrition to the stomach through an incision in the abdomen.

He lifts his shirt to show me.

A brave fighter, Paul always advises his clients via Zoom, however he can. He still has the use of his limbs. Tenacity defines Paul, though he counts his future in months, not years.

How Paul accepts his diagnosis

On a cloudy and foggy day recently, Paul met with me in the privacy of my studio near Stony Brook Road to speak openly about his diagnosis, his progress, his faith and his love of family. He used a variety of strategies to communicate. I have known Paul for almost 30 years; it was a solemn, tearful moment for us — two old friends, one with ALS, the other with Alzheimer’s.

I felt guilty, knowing that I would survive longer in my Alzheimer’s than in his ALS: The mind is slowly stolen; the other consumes the body in a rapid form. Paul’s mind is still bright in rapidly declining physical function.

A few days earlier, Paul and I cycled from Orleans to Coast Guard Beach in Eastham along the bucolic Cape Cod Rail Trail. In his humor, Paul gave us both a nickname: “Al”.

Local health:Seashore partners with Cape Cod Healthcare to combine health talks and hikes

“It’s a code,” he said. “for ALS and Alzheimer’s disease.” I tell Paul halfway through the bike ride that if we get lost, we’re screwed. He laughs heartily.

Back in the studio, Paul said to me, “I encourage my wife and my sons to walk by accepting this situation.

Faith played a crucial role in Paul’s final tricks. A strong Christian, he regularly attends Brewster Baptist Church with me and on some days the nearby First Parish Brewster Universalist Unitarian Church. He is also active with a Buddhist meditation group.

“My faith and my understanding of God are central to my life,” he adds. “The teaching of Buddhism brought me back to my Christian faith.”

I ask Paul if he is afraid of dying.

“Strangely, I’m not,” he said. “I accepted the fact that death comes faster than I wanted. Dying is part of life. It matters so much what you do when you go out. … ALS has brought me to a closer experience with family, friends and even strangers through love.

Paul reflects on the “iron horse,” New York Yankees Hall of Famer Lou Gehrig, whose strength and stamina are a role model for all seasons of life.

“I felt confused as a boy listening to Lou Gehrig’s lyrics at Yankee Stadium,” Paul says. “Despite having to retire earlier than expected due to ALS, Gehrig declared himself to be ‘the luckiest man on the face of this earth’.”

“I understand now,” he adds, “in a way that most people wouldn’t imagine.”

How Paul’s friends and family are doing

Still, Paul’s family and friends, those left behind, are trying to fully understand.

In a separate interview, his wife Fran, a Cape Town political and environmental activist and estate agent, said: ‘My husband accepted the terrible hand of Bulbar Onset ALS with a spirit of strength, endurance and dignity. These have been tremendous gifts for our family as we strive to come to terms with Paul’s condition and our collective future. The Christian faith and Buddhist teachings – the lessons Paul gives to clients – enabled this spirit. We are grateful for his strength and courage.”

Paul’s customers too. One of them, a client for several years, notes: “It was an easy decision for me to continue working with Paul after his diagnosis. As I knew, this would require a significant degree of letting go – also that it would require me to practice accepting the way things are in the present moment.

Writes my friend Lisa Genova -– New York Times bestselling novelist, Harvard-trained neuroscientist and author of the award-winning ALS novel ‘Every Note Played’, ‘Still Alice’ and others – “I have witnessed the silence heroes (like Paul) of this disease. …

“If we don’t ignore, delegate, resist or panic about our death, if we can understand that we are still living dying, we have the opportunity to die with grace.”

Annual help:Not ‘your grandmother’s disease’: Today’s Washburn Island challenge and associated beer aim to raise awareness of Alzheimer’s disease

Grace in death returns full force to faith. Paul’s pastor, Doug Scalise, of Brewster Baptist Church, notes, “I have deep respect for who Paul is as a person and for the way he handled a very difficult situation. None of us make it out of this world alive, but accepting the reality of death is still difficult, especially when it approaches earlier than we would like and in such an insidious way.

It is now late afternoon; Paul is tired — a lot of emotion spent today. He is ready to go home. Leaving my studio, he hands me a printed copy of something he had written for the interview: “Though God is beyond the comprehension of my mind, my faith comforts me and gives me hope that life has meaning, and that it really matters that I – or any of us – have been here at all.

Paul pauses, then quotes scripture: “So, death, where is your sting?

Greg O’Brien, former editor and publisher of The Cape Codder newspaper, is the author of “On Pluto: Inside the Mind of Alzheimer’s” and co-producer/screenwriter of the Alzheimer’s documentary “Have You Heard About Greg » ; HYHAG.com.