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- July 14, 1997
- Vol. 48
- No. 2
A Defiant Writer Concedes Only What He Must to the Iron Lung That Sustains and Confines Him
In fact, O'Brien cannot walk or even breathe on his own. A quadriplegic ever since polio seriously damaged his nervous system 41 years ago, when he was 6, O'Brien spends 23 hours a day encased up to his neck in an iron lung, a 640-pound cylinder that forces air into his weakened lungs. But there is no machine that can contain his vigorous mind. A published poet and essayist who types his work on a laptop computer with a foot-long stick held between his teeth, O'Brien, 47, became the toast of Hollywood in April when Breathing Lessons, a riveting film about his struggles and triumphs, won the Academy Award for Best Documentary Short Subject. "Being disabled is horrible," he says. "Monstrous. But it is still being alive, and there are possibilities."
Those possibilities include commercial ones. O'Brien's autobiography, which he just finished writing, and for which he received a $20,000 advance, is due to be published in early 1998. And a feature film based on his life is in development at Oliver Stone's Illusion Entertainment. "Mark is always looking at the bigger picture of what it means to be human," says Breathing Lessons Oscar winner Jessica Yu, 31, who will direct the feature. "Making an impact on the world through your mind and thoughts is just striking to me."
Most people who meet the prickly O'Brien come away inspired—or offended. Though he uses his tongue to answer a specially rigged telephone, five attendants, who come in shifts to his one-bedroom apartment in Berkeley, Calif., are needed to clean, feed and help O'Brien with a number of daily chores—and if they're late, he chews them out. And though he is able occasionally to leave his apartment and go to a ball game or poetry reading—he can spend up to three hours a month outside his clunky iron lung, one of only about 150 still in use—it sometimes causes him to experience "a tremendous yearning for oxygen," he says. "If there is some delay in getting home, I get very angry." Nor does O'Brien care to mince words about his condition. "I call myself a cripple," he says with typical bluntness. "That term offends people, for reasons I don't think are valid, but 'cripple' is more specific than 'disabled.' "
O'Brien has always stubbornly defined his own universe. The oldest of four children born to a Boston attorney and his wife, O'Brien spent two months in a coma after being stricken with polio. He survived but was left paralyzed from the neck down (though he only had to spend nights in the iron lung). Rather than put him in a nursing home, his parents gave him round-the-clock care. "He couldn't play baseball, but he was out with us on a cot," says his brother Ken, 46, a lawyer. "He didn't seem that different."
After the family moved to California in 1966, O'Brien learned to type with a stick and get around on an electric gurney. His parents fought to enroll him in a special disabled students program at the University of California at Berkeley, and he graduated with a bachelor's degree in English in 1982. But his pursuit of a master's in journalism was halted when he was struck by post-polio syndrome, which forced him to spend more time in the iron lung. Yet that didn't stop O'Brien from writing poems and essays—about his condition, his crushes on nurses, his passion for baseball—many of which were published in literary journals.
Then, in 1994, a mutual friend introduced O'Brien to Yu, an experimental filmmaker who sold him on the idea of an unsentimental documentary that wouldn't just be "a courageous cripple story," she says. The film was a turning point for O'Brien in more ways than one. At its first screening in Berkeley, he met Susan Fernbach, 42, a writer and fund-raiser for the Oakland Children's Hospital, who is now his girlfriend (they like to watch videos and read poetry).
These days, O'Brien, who hopes his Oscar fame will help the cause of disabled rights, gamely goes about his business: writing for two hours a day, fielding e-mail from fans and arguing with his attendants when they're late. And, of course, he dreams. "Once in a while I even have dreams of a thought-controlled wheelchair," says O'Brien. "It goes wherever I want it to go."
LAIRD HARRISON in Berkeley
- Laird Harrison.
March 28, 2015
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