ALS hits close to home for Newton filmmakers and actor
By Ed Symkus/ Senior Staff Writer
Wednesday, October 25, 2006

The Newton-based husband and wife team of Steve Ascher and Jeanne Jordan have been making documentaries together for more than a decade. One of their earliest films was "Troublesome Creek: A Midwestern," which chronicled a year of the struggle by Jordan's family to keep their Iowa farm. No one knew it at the time, but her family would again figure - in a totally different way - in their new film, "So Much So Fast," which opens Friday at the West Newton Cinema.

"As we were finishing 'Troublesome Creek,' Jeannie's mother, Mary Jane, was diagnosed with ALS," says Ascher, of the fatal, degenerative condition also known as Lou Gehrig's disease. "After that we were looking around for a way to make a film about ALS that wouldn't just be about someone with the illness, but would also have the vitality and dynamism ofthis film - which is about living with ALS and about trying to find a solution to it.



They didn't have to look very far. At the center of "So Much So Fast" is another Newton family, the Heywoods. In 1999, then-29-year-old Stephen Heywood was diagnosed with ALS. His brother Jamie soon helped start the ALS Therapy Development Foundation, and Stephen and his girlfriend Wendy were married. Ascher and Jordan saw a piece on the family in the New Yorker and contacted them.

"They were feeling kind of media-saturated at that point," says Ascher. "So they initially said no. But Peggy, their mom, had grown up on a farm in South Dakota, and had seen 'Troublesome Creek,' and loved it, and couldn't believe that Mary Jane had ALS. She said to her sons, 'Before you say no, you have to see this film.'

"We met with them and talked about the kind of film we wanted to make, and the intimacy it would require," he adds. "We were asking, in some ways, to let us be their best friend. We would be around in their lives that much. And they said yes."

The resulting film is indeed intimate. It follows not only the trials and tribulations of Stephen's gradual loss of muscle control, but also looks at the tireless love and support of Wendy and of the ever-challenged crusade mounted by Jamie to keep the foundation up and running.

Yet as serious as the topic is, the film maintains a mood of hope and provides, strange as it may seem, a plentiful supply of laughs.

"One of the reasons we wanted to make this film with the Heywoods is they have a terrific black sense of humor," explains Ascher. "Jeannie and I think humor is really important in getting through life and understanding things. There's nothing depressing about being around the Heywoods. They're an incredibly upbeat, energized family. They're constantly doing things. Both their lives and the film are about the fact that you're living with illness, you're not suffering all the time."

One of the reasons Ascher and Jordan wanted to make the film in the first place was because of what their own family went through with Mary Jane.

"ALS is a poorly understood disease," says Ascher. "And it's considered an orphan disease, because drug companies don't see it as profitable enough to solve the problem, even though a few hundred thousand people in the world have it at any one time. In the '90s when Mary Jane had it, very little was known and it was hard to find out whatwas known. Now you can Google 'ALS research' and find hundreds of things that are going on, but then it was an isolating experience. We wanted to do something about that. That was part of the impetus."



The film was made over a period of four years, and is edited down to 90 minutes from 200 hours of material. Ascher and Jordan weren't there all of the time because they were busy on other projects. They would often stop by for a day or two, go away, then come back. It's fascinating to see how they've captured the passage of time, involving Stephen's deterioration, the ups and downs of the foundation, and the growth of Stephen and Wendy's son Alex.

"It was a privilege to tell this story and to be that close to Stephen and the whole family," says Ascher. "He's a model of resilience, he has an upbeat attitude, and he takes what he's got and makes the most of it. Whether the Heywoods knew it at the time, we felt that telling this story was something that would enhance their lives a lot. Filming Stephen when he was speaking and walking would be a fabulous record for his kids to be able to see that side of him."

Asked what he would say to people who don't want to watch this type of subject matter, Ascher says, "When people hear about this film they assume that it's going to be depressing or very sad. But it's not. It's not a sentimental film, it's not maudlin, there's a lot of humor in it, and it's very dramatic."

"So Much So Fast" opens on Oct. 27 at the West Newton Cinema for a one-week engagement. Steve Ascher and Jeanne Jordan will appear for Q&A sessions at the evening shows on Oct. 27 and 28.

Ed Symkus can be reached at esymkus@cnc.com.

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