When Neil Marcus was 8 years old--a nice, normal boy with a slight twitch in his right hand--his parents sent him to summer camp.
A virtual stranger stepped off an airplane a month later, both fists involuntarily clenched, his hip awkwardly tilted, and his tongue torpid and uncooperative.
"There's a boa in my coat," Marcus struggled to tell his bewildered family.
An older brother eventually extracted a pet snake from the lining of the boy's jacket where it had escaped from a pocket, but Marcus was not so easily rid of his constricting ailment or people's dumbfounded reaction to it.
He would spend the next three decades coming to terms with life in the clutches of dystonic musculorum deformans, a rare and incurable neurological disorder that leaves the mind of its victims untouched but savagely twists their torsos and extremities.
The result of his ordeal is "Storm Reading," a play based on the writings and experiences of Marcus that begins a three-day run at 8 p.m. Friday at the Dorrill B. Wright Cultural Center in Port Hueneme.
The play stars Neil Marcus, a 35-year-old Ojai native, wheelchair and all, splitting the role of himself with his 41-year-old, able-bodied brother Roger Marcus, who owns a Camarillo computer firm.
Roger, who bears a striking resemblance to his brother, speaks lines that, if delivered by Neil, would be too difficult for the audience to understand, while Kathryn Voice, a veteran of Santa Barbara theatrical productions, translates the play into sign language for the deaf.
Predictably, the play, which made its debut a year ago at Santa Barbara's Lobero Theatre and has since played in six cities across the United States, seeks to increase understanding of the disabled.
"Some people, when they see my twisted frame, dystonic disarray, embrace the storm," Marcus says in the play. "Their eyes light up and they rush to hug me as a long-lost brother, as if embracing a storm was food for their soul. I can teach you to read a storm."
Not so predictable, however, is the irreverent and upbeat tone of the play--a string of vignettes, really--that follows Neil Marcus through a series of situations, real and imagined.
He tries to talk a male friend out of suicide; he tries to talk a female friend into bed. His life is a series of misadventures.
When his wheelchair is stolen in front of a hospital, a doctor and a nurse tackle him, mistaking him for a drug addict. A passer-by views his grotesque spasms indignantly: "If you're joking about being disabled," the man tells Marcus, "you'd better quit it."
"Storm" reveals the quirky and unswervingly optimistic outlook of a man who believes that it is "natural, not harsh or cruel, to laugh at people who are different" and who likens his contorted form to "a sensuous pretzel" and his disability to "an art form."
"Most people think, 'Handicapped--that's going to be a bummer,' " said the show's producer and director, Rod Lathim. "But it isn't. It's a very bright piece of work."
Others have agreed. The Santa Barbara Independent, a weekly entertainment newspaper, lauded Marcus' work as "direct and convincing and often funny."
And in the least, "Storm Reading" is "impossible to forget," as Maria Shriver said last year in a profile of Marcus on NBC-TV's "Today Show."
The work has especially moved the disabled.
"Neil Marcus lets you see that you can have joy in any way you are," said Abbie Spellman, a Camarillo woman who suffers from a degenerative disease called Friedrich's ataxia. Spellman made headlines in July by raising $10,000 for world hunger in a marathon swim.
At first, Marcus--who with unruly hair, pointed beard and ice-blue eyes straddles a line between monstrous and elfin--is not easy to watch.
The involuntary muscle spasms of dystonia so tax him that he goes through two changes of perspiration-soaked clothes during each performance. His fists swing wildly. His right foot, pointed as if it belonged to a ballerina, rises unbidden. A friend once compared his speech to the gasps of a drowning person.
"It can be very uncomfortable, even frightening," said Burton Danet, a Ventura publisher who is co-sponsoring the performance with Lathim. "But you start to relax and these feelings give way."
'Feel for Him'
By the end of the play, "you feel for him, you sympathize with him, you even love him," said Danet, who publishes Gold Coast Health Examiner, a free monthly newsletter on health issues. He plans to use the performance as a fund-raiser for a newly founded group called Partnerships for a Better Community, which hopes to find jobs for the disabled.
Advocates for the disabled hail the play for dispelling prejudice.