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.
“Generally, the sort of disabilities shown to the public are ones that are relatively easy to adjust to--blindness, deafness, quadriplegia,” said Alan Toy, a partially paralyzed actor who serves on the board of Media Access, a Los Angeles group aimed at improving the image of the disabled in the media. “Neil doesn’t have that kind of disability. To provide a forum where people can stare, know and learn what that disability is like is extremely valuable.”
“Storm Reading” is not the first time that Marcus has challenged frontiers of prejudice. He edits two publications devoted to improving the perception of the disabled, a sporadic newsletter called Special Effects and a once-a-year journal called Complete Elegance. Marcus has also written “The Princess and the Dragon,” a “disabled fable” for children, with a wheelchair-bound princess as its heroine.
Not content to merely write about his concerns, Marcus has participated in protests against everything from the lack of access for the disabled at Oakland City Hall--he lives in Berkeley--to apartheid.
‘Lot of Creativity’
“It requires a lot of creativity to do life,” he explained mischievously.
Humor, however, has not always been in order. Doctors originally diagnosed as psychological the ailment that suddenly made it difficult for Marcus to hold a pencil. Camp was supposed to rid the boy of his quirks.
Three rounds of cryosurgery followed. With Marcus awake, doctors inserted frozen probes into his brain in an attempt to destroy the nerves that were sending scrambled impulses to his limbs.
After all but the last bout, Marcus appeared cured but soon dissolved into telltale spasms. Meanwhile, his parents--Wil Marcus, a retired producer of industrial films, and his wife, Lydia, a former television and radio actress--would wheel him from class to class at Ojai Valley School.
Later, when his condition had improved a bit, he could wheel himself and, in fact, mastered a kind of skateboard slalom--backward.
“Of course, we were concerned,” his father said. “But he never hurt himself once.”
Partial Control Restored
Finally in 1967, a surgeon permanently restored Marcus’ control over the left side of his body.
But Marcus, the youngest of five children, acted as though full mobility had been restored to his right side too.
He traveled alone to Laos and hitchhiked to Washington State University at Bellingham, where he attended college after graduating as valedictorian from Ojai Valley School. He eventually settled in Berkeley, where he lives alone.
Marcus appeared as himself in the 1975 movie “The Other Side of the Mountain,” written by family friend and Ojai resident David Seltzer.
But Marcus’ biggest act, his friends and family say, is his own life. A self-described “performance artist,” he is prone to antics that would be considered outrageous if done by anyone else.
Invited to a dinner party, Marcus persuaded the group to dive face first into their spaghetti “the way he does,” Roger Marcus recalled. At a barbecue hosted by a friend, Oakland sculptor Paul Cotton, Marcus shocked but delighted the guests by throwing an ear of corn across the table “like a football,” his host remembered. When a photographer recently shot his portrait, Marcus suggested locating his wheelchair in the upper reaches of a tree.
“Experiencing Neil is an experience in itself,” said Cotton, 51. “It’s a sense of the way he handles himself. It’s kind of magical. I mean, no one else but him can do it.”
Two years ago, Roger Marcus suggested that Neil transform some of his writings into a theatrical piece. Roger, who has appeared in more than 70 plays in Santa Barbara, in turn approached Lathim, whose Access Theatre in Santa Barbara has a 10-year history of producing plays--some about disability, others not--with disabled actors.
Lathim gambled $30,000 on the play, which has since become Access’ most successful work, with a nationwide tour in progress. There is talk of an off-Broadway version, a documentary and a movie. “I think ‘Storm Reading’ is going to have a very long life,” he said.