On a Sunday morning in late August, sunlight slants through the tall paned windows of the Quaker Meeting House in North Sandwich, New Hampshire. Phil Simmons sits, unmoving in his wheelchair. He gazes out across the faces in the congregation, offers an opening prayer, and begins his sermon. He is describing what it is like to confront the limitations of the flesh.
“I’ve had to give up one kind of control,” he says, “in order to learn another: how to control my responses to those things I can’t control.” Simmons speaks slowly, his voice quavering. His breathing is labored. Every word is an effort. This is a man who, not so long ago, was living his life in hyper-drive—skiing Mt. Washington’s Tuckerman Ravine, hiking the Grand Canyon, exploring Kauai’s treacherous Na Pali Coast. Today, Phil Simmons, can barely lift his own hand.
Simmons uses his affliction—Lou Gehrig’s disease—as a metaphorical springboard to confront the larger human condition. He is matter-of-fact about his suffering and, even, his impending death. “My situation is only a particular instance of what we all face,” he says, “for we all live in bodies that are by their nature imperfect. . . .Whatever peace I’ve gained has come from using these challenges as opportunities to practice acceptance, the art of letting go.”
Simmons has chosen the jazz classic “Body and Soul” as the closing solo, his final message. “Take it away, Peggy,” he says, turning toward the organ. Peggy Johnson, a professional musician, sings with gusto, her voice filling the sanctuary. Most people are wiping their eyes. Many weep openly. But Simmons is grinning, nodding his head to the rhythm, relishing the music. Suddenly we find ourselves confronting, in this small meeting house, a great paradox. We see before us all that Simmons has lost-the mystery lies in what remains.
Phil Simmons was 35 years old when he was diagnosed with ALS (amyotrophic lateral sclerosis), a degenerative neurological condition commonly known as Lou Gehrig’s disease. He was given two to five years to live.
Instead of succumbing to discouragement, Simmons forged ahead. He continued his career, teaching literature and creative writing at Lake Forest College in Lake Forest, Illinois. During the first years after the diagnosis, he climbed mountains, finishing the last of the 49 New Hampshire mountains above 4,000 feet, an undertaking he had begun during childhood summers. When he could no longer walk, and now, when he can not even type for himself, he remains a prolific writer.
His recent collection of essays, Learning to Fall: The Blessings of an Imperfect Life, grew out of his frequent sermons and other speaking engagements. Originally published by Xlibris Press, the book has been a top royalty earner. It was republished by Bantam in January.
It has been nine years now since Simmons’s diagnosis, far beyond the typical survival rate for ALS patients. His wife, Kathryn Field, attributes his longevity to three things: their children, his passion for his work, and his ability to live in the mind. “Most people,” she says, “would not be able to endure such physical discomfort. He has an incredible will to live.”
In 1999, when his physical condition finally forced him to quit teaching, Simmons moved with his family to Sandwich, New Hampshire, to the house he and Kathryn had built together over the years. The house sits at the edge of a sweeping field. Simmons’s parents live within shouting distance. This is a place dear to his heart, a place abundant with happy memories. It is also, it turns out, a place rich in friends and neighbors.
“Phil and Kathryn had some big needs,” says Peggy Johnson, “and we all wanted to respond to those needs. So we called a meeting. Everyone sat in a circle, and we went around saying why we were there—what we hoped to get out of the experience.” Afterward, people filled out questionnaires outlining what they could do to help and when they were available.
That first meeting was modeled after a book Simmons had read, Share the Care, by Cappy Capposela with Sheila Warnock. “He passed it along to me and a couple of other people,” remembers close friend Derek Marshall. “He said, ‘Here. Read this. It’s something we should think about.’ At the time, I think it was more for Kathryn than for him. He knew that, as his illness progressed, she would need help.”
These days, though they meet rarely as a group, keeping in touch mostly by phone and email, the circle of 35 friends who first rallied around Simmons and his family has become official. They even adopted an acronym, FOPAK (Friends of Phil and Kathryn). Frances Strayer, FOPAK’s organizing wizard, has transformed the group into a smoothly functioning team. She keeps track of all the volunteers, signs people up for jobs, and handles scheduling changes. Along with daily afternoon check-ins, there are two evening visits each week, so that Fields can have time off from making dinners and putting Phil to bed. Chauffeurs get the children to activities and work parties ready the house and yard for the changing seasons. For Strayer, whose mother had ALS, participating in FOPAK is an opportunity. “I wasn’t able to help her when she was sick,” she says. “This is a way for me to help someone else.”
Field, an accomplished painter and sculptor, credits FOPAK’s network of support with saving her career. “I’m constantly awe-struck by what they’re doing,” she says, during a break from her work in the studio for lunch with Simmons. “FOPAK has allowed me to continue to be me, instead of becoming a full-time nurse.” She picks up a sandwich and holds it so that Simmons can take a bite. While he chews, she grabs a bite from her own plate. Then offers him another. Her timing is perfect, her motions deft. All the while she is talking-about their kids, about her work, about the house they built together, about what a great parent Simmons is, about their friends. “FOPAK,” she says, “gives us a sense of being loved by our community.” It has also helped ease the financial strain. “Many families facing this disease go into bankruptcy,” says Field, whose commissioned work, together with Simmons’s disability coverage, supports the family.
Adjusting to this new life has been far from been easy. “The first year it was mostly emotional,” says Field. “I’d constantly be measuring the time I thought we had left together. These past couple of years the physical needs have been extreme.” That’s where FOPAK comes in. The friends launched in when the demands of Simmons’s care went beyond what a single person could provide.
“Making a big request of people was scary at first,” Simmons acknowledges. “All along we’ve had to get over our resistance to asking-and then receiving help without feeling an obligation or guilt. The irony is, that most people love to provide this help.”
At three o’clock on a Tuesday afternoon, Tom Thiel lets himself in through the open front door. He pokes his head into Simmon’s office to say hello, then heads off to make a cup of tea. “It’s pretty tough to get any work done around here,” Simmons jokes. “I’d say there’s an average of seven minutes between phone calls and arrivals.”
As if on cue, a high voice calls out from the front door: “Hi, Daddy!” When Amelia, Simmons’s 10-year old daughter, skips into his office to report on her first day of school, he beams. “I fell out of a tree,” she announces, offering all the details. Simmons nods, taking it all in, laughing at the right moments.
Suddenly the phone rings. Thiel turns on the speaker phone, and Simmons takes over. The school principal is calling about soccer scheduling. When he begins to rattle off a mailing address, Thiel is at Simmons’s side in an instant, taking down the information. “It’s a privilege and an honor to be part of Phil’s life in this way,” says Thiel, who often volunteers for the daily check-in. “I think we all yearn for this sort of significant interaction in our lives. FOPAK works sort of like an extended family.”
Except for a morning nurse to help Phil get up, dressed, and ready for his day, this extended family is Phil and Kathryn’s sole source of support. “FOPAK is like a vessel, a container that holds our lives,” says Simmons. “There’s so much pressure on us and on our family, so much psychological stress and worry beyond the physical demands of my care. FOPAK gives us support and relief. Without it our energy and creativity would leak away.”
The degree of help Simmons requires, especially in the evenings, has been an adjustment on both sides. Putting on pajamas, brushing his teeth, taking his medicine, dealing with the bathroom routine, getting into bed-these are things most of us never share except with our spouses and children. “It’s been a hard thing, learning to have people in my life in ways more intimate than I might have imagined,” says Simmons, who needs his head aligned, his hands positioned, his pillows adjusted every night before sleep will come.
“Initially, I would not have thought of helping someone this way, but I got over that fear,” says Derek Marshall, who often does the evening shift. He is matter-of-fact now about his role. “I just see myself as an extension of Phil’s hands.”
Simmons’s FOPAK friends say it is his grace and good humor that have helped them learn the delicate art of giving, even as Simmons has had to learn the difficult art of receiving. Over time, they’ve both discovered that working together to brush teeth isn’t so different from working together to dig a hole or chop wood. “We could be doing anything,” Simmons says. “It’s the companionship, the exchange, that matters.”
After tea, Simmons asks if I’d be willing to help him edit the audio tape version of his essay, “Winter Mind.” When we are settled by the stereo, I stare at the bank of buttons and realize, with a flutter of panic, that I am about to become “an extension of Phil’s hands.” “See those buttons on the bottom left?” he nods in the general direction. “Push button A in, push button B out.” Patiently, he explains every step of the process. Then he rolls into position in front of the speakers and we begin.
“I want to tell you about the sound of winter wind through a New Hampshire forest.” Simmons’s recorded voice, caught on tape a year ago, is stronger, less quavering than his voice is now. As he listens, his head is tilted back against the headrest of his wheelchair. His eyes are closed. He is absolutely still, immersed in the sound of his own voice. Occasionally he utters a single word: “Pause.” I make a notation in the margin for the editor of the tapes. We continue, listening and pausing, listening and pausing.
He is reading now about the sound of wind through the pines. “Theirs is a finely sifted sound, a soft hiss through un-numbered needles. Stand by one as it takes the air, and you’ll know how God breathes. Hear the accumulated sound of such trees coming at you over the miles, and you hear something like the breath of Being itself. . . .Whenever I hear it, I think: surely this is the sound I heard as I was born, the sound I will hear as I die.”
When we are finished, I ask Simmons if people treat him like a guru. He laughs. “In Tibet,” he says, “they have this saying that your guru should live at least three mountain ranges away.” He pauses for the punch line. “The only people who treat me like a guru are those who live very far away.” Simmons is only half joking. Those who rise to their feet applauding after his talks and those who write to him after reading his books, see him as a hero—which he is. But he’s also “just Phil,” a person with foibles and character flaws, good days and bad. This is another reason FOPAK means so much to him. These are friends who know his faults and failings and love him anyway.
Still, those who spend time helping Simmons insist they are the ones receiving the gift. “There are many days now, when I think I’ve got some problem,” says Tim Miner, who often takes the evening shift. “Then I think about Phil not being able to go out hiking or do most anything for himself. It’s a slap in the face for me, and I try to wake up and make a better go of it. I’m sure he wouldn’t choose to be the bearer of this message, but I think all of us who are involved feel thankful to have the opportunity to be around him.”
At five o’ clock, Peggy Johnson sweeps through the kitchen door, juggling paper bags filled with casseroles made by FOPAK volunteers. When we sit down to supper, dusk is falling. Mist hovers low over the field outside the kitchen windows, and an orange moon rises into the late-summer sky. Since this is a FOPAK night, and Field is snatching a few precious hours in her studio, Johnson takes her seat, just to Simmons’s left. His son Aaron, who is 12, sits to his right. We pause.
“Let’s say a prayer before we eat,” says Simmons, turning to Aaron and nodding. “I’m tired.” Aaron reaches for his father’s right hand, lifts it from his lap onto the table, then takes it in his own. Johnson clasps his other hand. Amelia and I complete the circle, bowing our heads as Aaron begins to speak.
“Thank you for this good food,” he says. “And thank you for the good friends who made it for us. Thank you for the blessings of this life. And may we have a few good days. Amen.”