Movie charts ALS patient's quest to prolong his life

GAYLE WORLAND
gworland@madison.com

Ben Byer was an actor and writer for 10 years when he decided he had to make a film about the journey that lay before him, a journey that no one would choose to make. In 2002, Byer learned he had the deadly disease amyotrophic lateral sclerosis, commonly known as ALS or Lou Gehrig's disease, and was told he could expect to live another two to five years.

Now 37, Byer has written, directed and produced the powerful and award-winning bio-documentary "Indestructible," to be shown at UW's Waisman Center at 6 Thursday night. Byer, along with more than a dozen family members - including his mother, Barbara, a Waisman board member, and his father, Stephen, now a Madison-based advocate for ALS patients - will join researchers for a panel discussion following the film.

Intimate, often funny, at moments hopeful and at others infuriating, "Indestructible" follows Byer's quest over three years and through five countries to find a way to prolong his own life. Along the way, he and those he meets explore questions of humanity, hope, science, spirituality, and the utterly baffling medical mystery that is neurodegenerative disease.

"Indestructible" also introduces us to other ALS patients and the tenacity of the family members who care for them, as well as insightful experts such as Oliver Sacks and the Waisman Center's Clive Svendsen. One neurologist describes ALS, which has no cure and essentially no treatment, as "the Grim Reaper of disease."

Yet throughout the 113-minute film, Byer is fiercely upbeat. "My body is about 15 percent dead," he declares as his hands become nearly useless to him, walking becomes difficult and his speech is increasingly slurred, "but I'm 85 percent alive."

Darkly handsome, Byer grew up the third of five siblings in Evanston, Ill., and now lives in Chicago with his 8-year-old son and a full-time caregiver. Though a talented writer (see his blog at indestructiblefilm.com), he says a book could never tell his story as well as a film.

"This really had to be a movie," Byer explained via e-mail, using an eye-response computer. "To be as intimate and personal and visceral as I think you need to be to catch a glimpse of a life with ALS, you need to see it and feel it for yourself."

The $225,000 it cost to make "Indestructible" came solely through donations, says Byer's sister and co-producer, Rebeccah Rush.

"We still need about another $75,000 to $100,000 to properly distribute the film and create the awareness for it that's necessary," she says. "In fact I've gone quite significantly into a huge hole of debt because of this film. We don't know if it will ever recoup its costs, but at the same time, seeing the kind of impact it's had on people has been just incredibly overwhelming. Once people get in the door, they're hooked, and they start to identify really closely with Ben and his struggle."

"Indestructible" sold out at the Midwest Independent Film Festival last fall in Chicago, where it won "Best Feature Documentary." It also took top documentary honors at Cinequest 2007 and was selected for the Montreal World Film Festival.

Byer had cinematographer Roko Belic take his camera into every corner of his life; "Indestructible" even includes a high-tension, real-life argument within a family that is otherwise close.

Byer's parents, who moved from Chicago to 100 acres near Dodgeville with an eye to retiring, now live in Madison because of the ALS research happening here. "I used to be a perfectly happy art dealer, till about seven years ago when Ben developed ALS," says Byer's father. "As devastated as we were emotionally, physically and intellectually, we were both overjoyed by Ben's decision to make this film. Ben is terribly bright, and he is a very dynamic, aggressive person. He's always been able to see through things that others can't."

The fact that "Indestructible" "even got made is something of a miracle," says Ben Byer. "On the other hand, I'm surprised it hasn't done better considering the audience response, which has been phenomenal. I'm still looking for that big-time player who can elevate the film to the national level."

IF YOU GO

What: The film "Indestructible"
When: Film screening at 6 p.m. Thursday, followed by a panel discussion with the filmmakers and ALS experts.
Where: Waisman Center, 1500 Highland Ave.
Tickets: Free, but seating is limited. RSVP required at mitchell@waisman.wisc.edu or 263-5908.
Information: http://www.indestructiblefilm.com/


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