ALS in the Family
State of the Arts
None of us really wants to know what it's like to live with ALS -- that is, Amyotrophic Lateral Sclerosis, more commonly called Lou Gehrig's Disease. But a new, Vermont-made documentary makes doing so entirely watchable, even uplifting. Mind Games: A Love Story, by Barnard filmmaker Teo Zagar, tells the story of Dr. Tom French, also of Barnard, who beat the odds of ALS' typical "life sentence" -- instead of three to five years, he survived nine. The film screens this Friday in Burlington's City Hall Auditorium.
Introduced to the French family by the owner of the town's general store, Zagar, 27, spent a year hanging out at the unusual household, interviewing and videotaping its members -- Tom, his wife Jacquie and their 6-year-old daughter Lauren. Two full-time male nurses, a couple of dogs and a cat were also constant companions, along with a regular stream of visiting friends.
The occasions captured on film are the stuff of anyone's home movies -- dinners, birthday parties, holidays, vacations -- except for the presence of a quadriplegic man in a wheelchair, hooked up to a ventilator and feeding tube. Though Tom French is physically withered and motionless, his eyes and smile reveal an active engagement. Jacquie has learned to "read" the slight movements of Tom's jaw, and occasionally interprets for the camera what he has to say. It is Jacquie's extraordinary strength, determination and zest for life that enable this family to deal with her husband's disease on their own terms, in their own home. "They were so hopeful and optimistic," says Zagar. "I never heard any talk about 'What will happen when he's not able to use his eyes' -- it was really just day to day."
An award-winning film student at Hampshire College and a former intern for documentary guru Ken Burns, Zagar put his acquired skills to work for Mind Games. With a cinema verite style, it has the raw immediacy, intimacy and often humor of a family video, and is interspersed with vintage footage, still photographs and quotes from Tom -- these presented as white text over black ground, à la silent films. Zagar is entering Mind Games in Sundance and hoping for distribution.
French, once a successful plastic surgeon, is far from passive despite his condition: He started an online business, TwoNationsRx.com, importing discount drugs from Canada. The film shows him "writing" on his computer via an infrared technology that tracks his eye movements. In much the same way, we learn, French has written a chapter for a book entitled Who's/Whose Right? Seeking Answers and Dignity in the Debate Over the Right to Die (DC Press). Zagar's film title was borrowed from Tom, who calls ALS the "ultimate mind game." In the book he writes, "I became more optimistic, not necessarily about being cured, but with accepting my co-host/parasite and setting limits. It was psychological warfare and I intended to win."
But it's the rest of the title -- A Love Story -- that conveys the heart of this film. In interviews with Jacquie we learn the couple's remarkable backstory: Best friends in high school (in Shrewsbury, Mass.), Tom and Jacquie soon discovered they were soulmates, and married young. While Tom spent 10 grueling years in med school, residency and practice, Jacquie tried to get pregnant, enduring numerous miscarriages and a life-threatening ectopic pregnancy. Finally, she was diagnosed as infertile. The strain of all this led to the couple's divorce. But when Tom called her a couple years later, in 1996, to tell her of his own diagnosis, Jacquie rushed to his side, this time to stay, she says.
Tom retired to enjoy what little time he had left with a functioning body; the couple relocated to Barnard and remodeled a falling-down home on a gorgeous wooded property, where they remarried. During a trip to New York to see The Phantom of the Opera, a miracle happened: Jacquie got pregnant. The unexpected birth of his baby daughter inspired Tom to reverse his "Do Not Resuscitate" order.
Mind Games is an unflinching portrait of living with a dreadful disease, but it has more to do with "love, hope and faith," says Zagar, "and how these most fundamental aspects of the human spirit can be found in the most unexpected places."
Tom French passed away last Thursday, September 8, at age 44. His heart stopped beating while he was getting ready to attend a screening of Mind Games in Woodstock. "He died perfectly, with his wife and his parents there," says Zagar. This Friday, Jacquie French will attend the film, with her husband's ashes, in Burlington. On Saturday, a memorial service in Barnard will be followed by "a big party at the Frenches' house," Zagar says. "Then I'll probably sleep for a week."