Documentary portrays disease’s agonizing toll

MOVIE REVIEW

By Jim Keogh TELEGRAM & GAZETTE STAFF




Stephen Heywood with his baby, Alex, in the documentary, “So Much So Fast.”
Enlarge photo


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‘So Much So Fast’
A West City Films release
Not rated
Running time: 1 hour, 27 minutes





Stephen Heywood plays a game of reduced expectations in the heartbreaking documentary “So Much So Fast.” Suffering from amyotrophic lateral sclerosis, or Lou Gehrig’s Disease, Heywood hopes for a cure, then wants to retain as much movement as he can, and finally he just seeks to live, even if it means he’s a prisoner in his own paralyzed body.

Along the way, we witness a series of painful milestones that dash those hopes. The disintegration of his voice, to the point where he’s unintelligible (and subtitles are necessary for the film), his inability to lift his infant son Alex, the loss of his ability to swallow, which necessitates the implantation of a feeding tube into his stomach. Noting that the results of clinical trials on possible anti-ALS drugs take months and years to determine, he sighs and says, “Time is such a bastard.”

Filmmakers Steven Ascher and Jeanne Jordan spent four years chronicling the ravaging effects of ALS on 29-year-old Stephen and his family, producing a brutally honest diary not only of the Heywoods but of the disease itself, which attacks the nerves and muscles and typically kills within two to five years. Through their cameras we see the Heywoods — Stephen’s brothers and parents, and his wife Wendy — band together to stage the good fight against an enemy that attacks with unrelenting hostility. ALS itself becomes a character in the movie, not just a villain, but a baffling presence that — seemingly — if it would just listen to reason would halt its Sherman-like march through Stephen.


The film’s other intriguing character is Stephen’s brother, Jamie. When Stephen is diagnosed, Jamie transforms himself into a crusader, recruiting scientists and creating a foundation to conduct “guerrilla research” with the aim of finding a cure in time to save Stephen. As the obsessive Jamie throws himself headlong into his quixotic mission he makes a pact with the devil, sacrificing his relationship with his wife and daughter, shedding a lifelong friend, and quite possibly jeopardizing his own sanity in his desperate need to keep Stephen alive. He confesses that he’s practicing the “systematic denial of approaching reality,” and in the process turns himself into a flawed hero.

“So Much So Fast” is almost startling in its intimacy. The Heywoods, who live in Newton, become used to the cameras in their midst, and speak freely about the struggle with ALS, yet manage to retain a sense of humor throughout the ordeal. (Asked what he’d do differently during the long course of his disease, Stephen replies, “Have more sex on camera.”) We see that Stephen’s motivation for persevering rests with baby Alex, who evolves before our eyes from infant to toddler. In the film’s most wicked irony, Alex’s ability to walk and talk expand at a rate proportional to his father’s declining ability to do either.

No one voices this question directly to the camera, but it lingers uncomfortably throughout the movie: What would you do? What would you do if you were diagnosed with ALS? What would you do if you were as articulate and intelligent as Jamie Heywood? Could you give your own life over to the pursuit of a cure, even as the medical establishment insists you’re doing it all wrong?

Apparently the answer is simple. You do what you gotta do.

“So Much So Fast” will be shown at 7:30 p.m. tonight and Saturday, and at 1 and 2:50 p.m. Sunday in the Jefferson Academic Center at Clark University. It is part of the Cinema 320 film series.