Berry Minott's crew and subjects work together in Guam.

Minott Tracks ‘Illness’ to Guam

Michael Fox August 3, 2011

Politicians did a bang-up job this week of spooking baby boomers and younger generations with the specter of reduced Social Security and Medicare benefits. Worse, they compounded the amorphous health fears that shadow Americans of a certain age—fears that launched documentary filmmaker Berry Minott on The Illness and the Odyssey.

“I've been researching the issue of neurodegenerative diseases since 2007, when my cousin was diagnosed with an early on-set dementia called primary progressive aphasia,” Minott related in an email interview. “This particular dementia robs you of your ability to use words, either spoken or written.”

Minott’s investigation took a fateful turn when she read Dr. Oliver Sacks’ The Island of the Colorblind, in which the famed neurologist described a visit to Guam. The indigenous Chamorro people are afflicted with an unusually high rate of what’s called Lytico-Bodig, and scientists have various hypotheses for the phenomenon. There’s a lot riding on the correct answer, which neuroscientists believe may explain the baffling cause, and lead to the elusive cure, for Alzheimer’s, Parkinson’s and Lou Gehrig’s disease (amyotrophic lateral sclerosis, or ALS).

Sacks wrote about one man in particular, Dr. John Steele, who treats the Chamorro and has arrived at his own iconoclastic theory about Lytico-Bodig. Minott, naturally, sought him out when she visited Guam to shoot interviews and footage for The Illness and the Odyssey.

“I would say John Steele is one major character in that he has devoted the past 30 years of his life to finding the cause,” Minott wrote. “He had left a distinguished career in Canada to move to Guam to find the answer. He has no proof but believes [Lytico-Bodig] was caused by an infectious agent. But there are other ‘characters’ who are equally compelling, such as the New Yorker writer Jonathan Weiner, who was lambasted by all of the researchers when his article on Guam came out.”

Minott describes her work-in-progress as “a scientific mystery film.” The puzzle at its core is accompanied by a good deal of conflict between professionals with wildly varying and strongly held opinions. “It's also a film about competing scientists each combating to be right,” she noted.

The stakes of the debate are enormous, but there’s something inherently entertaining in watching large egos collide. It’s not surprising, therefore, that Minott described the tone of The Illness and the Odyssey as “earnest with an edge of dark humor.”

The film will likely take an even-handed approach with the various neuroscientists interviewed, even though Minott had exceptional access to one doctor in particular.

“While I've made only one trip to Guam for the filming, I've been in a daily email communication with Dr. Steele about the various theories on the cause of the diseases,” Minott said.

The filmmaker is working on the script with Rick Goldsmith (The Most Dangerous Man in America: Daniel Ellsberg and the Pentagon Papers) in preparation for going into the editing room in September. Minott offers an intriguing last word about the mystery that propels The Illness and the Odyssey.

“I might have an answer by the time fundraising and editing has been completed,” she confided.

For more information about the project, visit

Notes from the Underground
Belated congratulations and best wishes to new BAVC Executive Director Marc Vogl, who took the reins July 11....Bill Cunningham New York finally closed in SF after a 16-week run....Better This World and Miss Representation open August 12 at IFC Center as part of DocuWeeks, continuing the 2011 parade of Bay Area documentaries at New York theaters. We Were Here opens September 9 at the Angelika....Francis Ford Coppola’s Twixt will receive its world premiere at the Toronto International Film Festival. … Lucasfilm’s Red Tails, a drama about the Tuskegee Airmen directed by Anthony Hemingway and starring Cuba Gooding, Jr., and Terrence Howard, will be released January 20, 2012 by 20th Century Fox.

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