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Living With ALS for the World to See

Ben Byer died just weeks before the local premiere of his documentary about fighting the disease.

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Ben Byer was 31 when he was diagnosed with amyotrophic lateral sclerosis, or ALS, and given two to five years to live. His son, John, was just two. As he walked John to preschool one day afterward, the boy asked, "Are you afraid to die?"

"No," he replied. "I'm not."

Byer didn't know whether he was protecting his son or himself by denying his fear. But years into his illness when he heard John proclaim, "My dad is not afraid to die," he accepted the words as "in a way" true. "I've had so much time to think about my mortality that I've exhausted the fear out of my body," he wrote in a December 2006 blog post.

Byer died July 3. His life will be celebrated by friends and supporters Thursday night, July 17, at the party he and his sister, Rebeccah Rush, organized to toast Indestructible, the documentary he made about his battle with ALS and efforts to find a cure. It opens Friday for a short run at the Gene Siskel Film Center.

As a journalism student at Indiana University, the Evanston native traveled to Paris to study film and ended up dropping out of school to stay a while. When he returned to the U.S. a year later, he packed a pickup truck and headed west to produce movies. By 1994 he was back in Chicago and had switched to acting, performing in off-off-Loop plays and chauffeuring tourists around in a horse-drawn carriage to make ends meet. He gave Hollywood another brief shot years later, driving a meat truck to pay the bills. By the time he returned to Chicago yet again in the late 90s, he was seasoned enough to secure regular acting and writing gigs and eventually produce his own plays. He'd just finished Take It Deep, a semiautobiographical play about a door-to-door meat salesman, when he started to lose strength in his hands and slur his words. In September 2002 he was diagnosed with ALS, the degenerative neuromuscular condition also known as Lou Gehrig's disease.

Byer's physical strength and speech deteriorated quickly. Not long after his diagnosis he found himself unable to act or write (though he later learned to use an eye-controlled computer and blogged prolifically at indestructiblefilm.com). He turned to video diaries, and after nine months of that he started interviewing other ALS patients. That's when he decided that what he was making was a movie.

"Film was a natural progression," says Rush, who coproduced Indestructible with Byer. "It was a way to have a creative outlet in a medium that was still accessible to him. I know he liked being on film. As his body deteriorated I think he realized how important it was to be visible. He wasn't going to retreat and disappear as many ALS patients do." Financed with $200,000 in donations, the documentary was shot over three years, during which Byer traveled to six countries, meeting other patients and their families as well as doctors, scientists, and healers in search of insight into the condition and any means to fight it. These journeys are interspersed with domestic scenes of Byer with his young son. Despite his physical decline, Byer demonstrates courage and humor throughout.

Around the time of his diagnosis, Byer had separated from his wife, Josephine Christopher, and moved into Rush's north-side apartment. But he continued to share parenting duties. "Ben's disease never really took away from that," says Rush. She served as Byer's primary caretaker until her first pregnancy in 2006, when he got his own place in Albany Park with bedrooms for both John and a live-in assistant.

"John understood him better than anybody," Rush says. When she struggled to make out his words, his son would reply "OK, Daddy" and do as asked. Ben even still disciplined him. "Sometimes he would do it with his eyebrows," says Rush. "They developed a way of communicating that didn't always involve words."

There's no known cure or proven effective treatment for ALS. Byer's parents became passionate advocates for alternative remedies. His father, Stephen, developed a distribution network for the Chinese herbal mixture BuNaoGao (literally, "to nourish the brain"), which alleviated some of Byer's symptoms for a while. And Byer went to China to undergo a controversial—sometimes fatal—procedure in which fetal cells were injected into his brain and spine. The results seemed promising—within days, his speech was remarkably clearer—but didn't last.

Over time Byer tried more than 30 treatments to stop the loss of nerve and muscle function. "I thought surely there must be something somewhere to fix this problem," he wrote in a June 2006 blog post. "I have come to understand that this was part of my denial. But denial is a powerful drug." The list ranged from prescription drugs like Minocycline ("really for acne, but someone thought it would help with ALS)" to mass-building supplements like beta-hydroxy beta-methylbutyrate ("HMB, or Tastes Like Shit") to Buddhism ("I really thought this would help") to medical marijuana ("tastes really good").

The closest he came to an effective treatment was Iplex, a growth hormone developed by Insmed to treat dwarfism in children. Within days of taking it, he wrote last November, "I experienced rapid improvements in walking, speaking, appetite, swallowing and—critically—breathing." But after a patent infringement claim by Genentech, manufacturers of rival drug Increlex, which Byer found less effective, Iplex was pulled from the market. Byer's parents fought for its return to no avail.

Byer maintained an outrageous sense of humor throughout his illness. Unable to travel to Australia this spring to accept the jury prize for best feature documentary at the Byron Bay Film Festival, he sent video of himself dressed in a bunny suit, sitting solemnly in an armchair as a heartfelt thank-you speech scrolled over the red curtain behind him.

After winning acclaim at dozens of festivals, Rush and Byer began arranging for independent screenings and a DVD version. Presales of $50 signed DVDs raised an initial $100,000 distribution budget. They opened the movie in Madison in May, then took it to Los Angeles and San Francisco. Rush continues to seek bookings in other cities and is trying to set up a TV deal. She plans to put the DVD in general release this fall.

Rush believes that even in death her brother can further the search for effective treatments. "Michael J. Fox and the pope [John Paul II] did so much for Parkinson's research because people could identify with them," she says. "Ben can be that person for ALS. He's so charismatic. He's anybody's brother or friend or son or father."

Byer continued working right up to the end. He was in Cleveland when he died after having a diaphragmatic pacemaker implanted to improve his breathing capacity. He'd had the surgery filmed and interviewed his doctor and several members of the hospital staff. "He had already started on his next project," Rush said. "We never talked about what his ultimate goal was but I know he had some plan for it." A few days after surgery, Byer's lungs gave out. He had left notes behind for last-minute edits he wanted made to Indestructible before the Chicago screening.

Rush says that before her brother began work on the film, he felt isolated by the disease. "I hope people with ALS feel that they're not alone when they see it. Even people with no connection to ALS, they see the film and realize what their own mortality means. I don't plan to die any time soon, but I need to know that if I did, I can be proud of the choices I've made and the relationships I've had."v

Care to comment? Find this story at chicagoreader.com. And for more on movies, see our blog On Film.

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