When my late husband David Israel was diagnosed with ALS in 2010, I couldn’t imagine how I’d ever cope. Someone in his neurologist’s office handed me a manual called the “ALS Caregivers Guide.” There were sections for “Drooling,” “Choking,” and “Feeding Tubes.” The last one was “Saying Goodbye.”
“How will I possibly handle this?” I asked a friend.
“Call Ron Hoffman!” she said.
I waited for him in a café south of Boston. A long-haired guy in jeans showed up, speaking in a Southern twang. I remembered that moment when, years later, I asked a man whose father had ALS if he’d ever heard of Ron Hoffman. “You mean the hippie ALS guy?” he said.
No one, it seems, expects Ron Hoffman.
For nearly 25 years, Hoffman has been offering support and services to people living with the fatal motor neuron disease ALS, or Lou Gehrig’s Disease. He runs a unique full-service operation, offering everything from wheelchairs and ramps to conversations about death to a shoulder to cry on. He loans out wheelchair-accessible vans. He listens to family members vent. He guides them through the health insurance maze. Once he flew with a father who had ALS from New Jersey to his daughter’s college graduation in Illinois.
“All I do is show up – such a basic thing, really,” he said. “It’s just being there.”
For those who are willing, he’ll venture with them into the spiritual realm, which he’s explored with mentors from various traditions over the years, as he haltingly recovered from a traumatic early life and found his footing as an adult.
Now he’s putting the finishing touches on a breathtaking $3.5 million retreat in a restored historic inn in West Falmouth, a picturesque seaside town on Cape Cod. It was five years in the making. It’s accessible for those with ALS but – with its koi pond, yoga room, beautiful gardens, proximity to the ocean and a bike path, and spaces for meditation and contemplation – a primary function is to allow ALS caregivers to rest and recharge. Many are “battered and bruised” by their caregiver roles, he said.
It’s all part of a broader mission for Hoffman, a self-described “uneducated Southern Jew.”
Sporting a grey ponytail and accompanied, as always, by his snowy-white standard poodle Madison, Hoffman acknowledged he’s an anomaly in the health care world. He has no formal training in medicine other than as a massage therapist. He never even finished college.
But he’s taking on doctors, hospitals and medical schools, trying to change the way the health care system serves – or doesn’t serve – the terminally ill and those trying to support them. He believes not enough practitioners are equipped, or willing, to help individuals nearing death emotionally prepare for it.
“We go to Lamaze class to prepare us for the beginning of life, and yet there’s nothing available for the end of life,” he said. “I’m always there for those end-of-life conversations, for people wondering: “What is my death going to look like?”
Hoffman, who grew up in Virginia, has told the story of own near-death experience many times. When he was 10 his alcoholic, abusive father roared into the house with a gun, threatening his mother. As he was about to fire, Hoffman leaped in front of her and took the bullet. It lodged against his spine but he survived, as did his mother, who was shot twice in the chest.
Hoffman, 67, keenly recalls the trauma of his chaotic childhood, the humiliation of having a violent father who went to jail. “Our whole situation was an embarrassment to the Jewish community of Richmond,” he said. “It just wasn’t kosher.”
But had it never happened, and had it not been for an orderly in the hospital emergency room who performed a simple act of kindness, Hoffman said he’d never have found his calling. As founder and executive director of an innovative nonprofit organization called Compassionate Care ALS (CCALS), he is a pioneer in the field of holistic ALS care, serving on the front lines to help patients, whom he refers to as his “friends,” as they navigate the physical and emotional complexities of the disease.
Sometimes he just offers a listening ear, channeling the hospital orderly who gently placed a hand over the wounded boy’s heart and promised him he’d be okay.
“The day I was shot someone showed up for me completely,” Hoffman wrote in his 2014 memoir, “Sacred Bullet: Transforming Trauma to Grace While Tending the Terminally Ill.”
And now he shows up for others. The way he sees it, he’s taking the bullet for them.
“For folks with ALS he’s the go-to guy with all the equipment, the wise counselor, your minister and your doctor all wrapped up in a guy with the ponytail,” said Lisa Genova, the neuroscientist-turned-novelist whose books, including the bestselling “Still Alice,” revolve around people with neurological diseases. Genova shadowed Hoffman for months to research her 2018 novel, “Every Note Played,” about a pianist with ALS. One of the characters is inspired by Hoffman, she said. (The book is being made into a movie starring Oscar winner Christoph Waltz.)
“Nobody has any idea what it is to live with ALS,” Hoffman said. “Most people don’t have the capacity to navigate all this. I’ve never met anyone who could do it alone.”
Hoffman found his way into ALS care almost by accident. He briefly went to college, moved to Philadelphia, then California, and later New York. He sold men’s clothing, eyeglasses, portable speakers. He tried working as a hair stylist. Meanwhile, he partied a lot, had a course of “serial relationships,” drank too much and used drugs.
“I was a ship unmoored,” he writes in his book. “A deeply wounded man, a desperate, dangerous lost soul.”
In his early 30s, he moved South again to manage a clothing store, then moved back to the Northeast to open more stores. Eventually he went to work for a Massachusetts businessman named Gordon Heald who owned a catering company; Hoffman’s job was to prepare hors d’oeuvres and help with parties.
But in 1997, Gordon was diagnosed with ALS. His wife Betsy asked Hoffman to be Gordon’s driver, and then his full-time caregiver. “I thought: ‘I don’t have a wife. I don’t have a dog. That’s literally how I got started.’”
He quickly saw that he had to constantly improvise solutions to the many challenges of caring for someone with ALS, such as how to get Gordon who was 6’ 4” up a flight of stairs, or to lift him when he fell. When Gordon died in 1998, Betsy started a fund for Hoffman to oversee in Gordon’s name.
The fund was meant to help families with “tending and caring,” said Hoffman, who is unabashedly prickly about how so much of the money raised for ALS causes goes to research and not to helping families struggling with patient care. “The care component is incredibly undervalued,” he said.
In 2003 the Heald fund morphed into CCALS which Hoffman founded as a nonprofit, expanding the services. It’s funded by a large donor base, grants, and fundraisers and is based out of a small cottage in West Falmouth. A few miles away, a warehouse stores a staggering array of tools and devices necessary for living with a progressive and debilitating disease – ramps, electric wheelchairs, portable showers, bidets, reclining chairs, augmentative equipment for communication, lifts, bath benches, scooters, even beach wheelchairs. Everything is loaned out free of charge, with no forms to fill out because Hoffman hates red tape.
Sometimes he still has to improvise, as he did when he worked with the acclaimed Boston painter Jon Imber, who developed ALS in 2012. Before too long, Imber, whose great-great-great uncle Naftali Herz Imber wrote the lyrics for “Hatikvah,” the Israeli national anthem, stopped being able to paint with his dominant right hand. He switched to his left, then Hoffman stepped in, said his wife Jill Hoy, herself a painter.
“At the end when he couldn’t do anything with his arms or legs and only his neck worked, Ron got us this strapping that went on his head and we attached a paint brush to it,” Hoy said. “If you gave Ron an idea of what you needed, he figured it out. If you wanted to go into the spiritual realm he knew body workers. He knew a woman in California who would Zoom with us and do guided meditations.”
Hoffman and his team of 15 have helped nearly 3,000 “friends” and their family members, who are often exhausted and alone. They work primarily in New England but they’ve also helped families in about 40 other states and abroad, as far away as South Africa and Peru.
Last year CCALS had a $2.19 million budget and raised more than $4 million in grants and donations. Many gifts to CCALS have come from those affected by the disease, including Arthur Cohen, a respected New York portrait photographer and son of a Holocaust survivor whose hobby was making pickles.
After he was diagnosed in 2014, he devoted the rest of his life to making pickles to raise money for ALS research and care. He started a small business and sold jars of “Pickals” (Motto: “From A Cuke to a Cure”), sponsoring pickle parties with friends he called the Brine Trust. He died in 2017, having raised more than $250,000.
Over time Hoffman has developed long-term relationships with multiple medical equipment vendors, including those I came to know and appreciate as “the wheelchair guy,” the “stairlift guy,” and “the communication device lady.” And he’s earned the respect of some of the country’s top researchers and neurologists.
One of them is Dr. Merit Cudkowicz, chief of neurology at Massachusetts General Hospital and director of the hospital’s ALS research center. Since 2017 CCALS has partnered with the hospital on an ALS House Call Program which gives homebound patients access to medical services in their homes.
“I always tell people how fortunate we are in New England to have him,” she said. “He just has to train a bunch of future Rons.”
Linda Matchan is a Boston journalist and documentary filmmaker.
Facing illness or death? Call Ron Hoffman