Article published Nov 21, 2004
By AMANDA PARRY
Concord Monitor
© 2003, Telegraph Publishing Company, Nashua, New Hampshire

The last thing this world needs is another film about a nice guy dying. That’s what Phil Simmons said when he was approached by a man who wanted to make a documentary about him.

Simmons, 43, was dying from amyotrophic lateral sclerosis, or Lou Gehrig’s disease. He was also nice. However, the film turned out to be anything but a sob story about a husband and father cut down in the prime of life. It’s a movie about living, about rising to challenges, about appreciating everything from the first summer berries on the bush to the sight of your children swallowing snowflakes in a late fall flurry.

In other words, it’s exactly what Simmons would have wanted.

In the nine years from when he was diagnosed with Lou Gehrig’s disease to when he died in July 2001, Simmons became something of a guru on life. An English professor, he put his writing talents to use and published “Learning to Fall: The Blessings of an Imperfect Life.” The book featured 12 essays not about dying, but about living.

“Life, after all, is a terminal condition,” Simmons wrote.

Simmons became a favored speaker at colleges and medical schools around the country and in Canada. And he caught the attention of a doctor who thought even more people needed exposure to Simmons’ take on life.

The doctor knew a documentary maker. The documentary maker found Simmons’ story intriguing. He and a crew spent 12 months following Simmons and his family around in their Center Sandwich home.

The result is “The Man Who Learned to Fall,” a 77-minute movie that had its New Hampshire debut this month at the Holderness School. Simmons’ wife, Kathryn Field, said it’s gratifying to be able to show the movie to the people in the community who helped care for her husband in the last years of his life.

“It brings him alive again,” said Field, sitting in the living room of the home she built with her husband.

Field first saw the movie when it premiered at McGill University in Montreal in September. More than 800 people turned out to watch it and many were surprised, according to Gary Beitel, the filmmaker.

“I had a lot of people say to me, ‘I wasn’t really looking forward to seeing this. I thought it would be really depressing,’ ” Beitel said. “But when they saw what Phil did, how he reacted to his situation, with grace and humor and wisdom, they felt uplifted.”

It was this concern, that the film would be too sad, that originally kept Beitel from getting funding to make the movie. Based in Montreal, Beitel gets most of his funding for documentaries from Canadian television networks. But when he pitched his idea for this film, no one wanted to touch it.

“It was interesting because they all said, ‘No, we won’t fund it. But we’d love to see it when you’re finished,’ ” Beitel said. “They just didn’t want to take a chance.”

So Beitel raised the money from private investors and convinced people who worked on the movie to donate their time and services. He estimates the movie would have cost $200,000 (Canadian) to make, although he received about half of

that in free labor.

For Field, watching the film provided a bit of a jolt. It had been three years since she had seen so much of her husband. It brought back memories of how she and her family lived in the last years of her husband’s life.

Simmons was only 35 when he was diagnosed with ALS, a disease that causes degeneration of the brain and spinal cord. The doctors said he would lose his ability to move and walk and talk and would probably live only three or four years. At the time, he was teaching at Lake Forest College in Illinois. His children, Aaron and Amelia, were 4 and 2 years old.

There were some things Simmons took care of right away. He finished hiking the 48 New Hampshire mountains - more than 4,000 feet - a task he had started as a boy when he and his family spent summers in Center Sandwich.

He also grieved and cried and was angry, emotions that don’t show up in the film.

“There was plenty of heartbreak, but it was not what either of us felt comfortable showing the camera,” Field said.

In fact, Simmons was so upbeat in the film that one woman in the audience in Montreal asked if it was really that nice living with ALS. Not all the time, Field admitted, but the smiles and jokes and laughter on the film are all genuine.

They are the result of Simmons learning not just to cope with his illness but to embrace it. With time and contemplation, he learned that the disease had given him what years of meditation, reading and reflection had not: the understanding that life is supposed to include suffering. Avoiding and ignoring suffering doesn’t lead to happiness; experiencing it does.

“Choosing the world means choosing all of it,” Simmons wrote. “In my case, it means choosing a world that includes both raspberry ice cream cones and my weakening arms, which will soon be unable to raise the ice cream to my lips.”

By the time Beitel and his crews started filming, the family had moved to Center Sandwich, where Simmons’s parents still live. Simmons was using a wheelchair. His speech was slurred, and he had difficulty moving his arms.

Friends and neighbors were over at the house regularly. They had formed an organization called FOPAK - Friends Of Philip and Kathryn - and members took turns driving the children to school and soccer practice, putting Simmons to bed a couple of times a week, and caring for him during the day.

It was watching these scenes, where a relative stranger patiently fed her husband or washed berries for him to eat, that reminded Field of all the support she and her husband were given by the community of Center Sandwich. It also reminded her of how full and busy the house used to be, when people were constantly coming and going.

“When you live with a terminal illness, it tends to take over,” she said.

The film also reminded Field of her husband’s efforts to spend as much time as he could with the children, even if he couldn’t do the things he used to. In one scene, Simmons plays defense from his wheelchair as his son shoots hoops in the driveway. In another, his son feeds Simmons salad. In more than one scene, Simmons’s eyes light up as he listens to his daughter tell a story or explain a drawing she’s made.

And finally, the film reminded Field of what her husband was like before the illness. Throughout the documentary, Simmons can be heard singing the blues and playing guitar in recordings made before he succumbed to the disease. There are also voiceover clips of Simmons reading from his book.

“I didn’t realize it was him at first,” Field said. “I had forgotten what he sounded like before his speech became affected.”