John McNeil's Backbone
McNeil's sister Rory, 50, who didn't inherit either disease, and until recently was also Yreka's mayor, remembered their childhood.
"I didn't realize he had those disabilities. If he was walking by I'd throw a snow ball right at him. He would have expected nothing less," she said, laughing. "It's hard to be different. It shaped his personality, which is a little cynical, a little tough. The disease has ravaged him, but fortunately it hasn't damaged his spirit or his brains. He's a special guy."
McNeil was inspired to become a trumpeter when he saw Louis Armstrong with his signature handkerchief on an episode of the "Milton Berle Show" in the late-1950s. But when McNeil's family took him to the Mayo clinic in Minnesota where he was finally diagnosed with Charcot-Marie-Tooth disease, a doctor said that exercise would only hurt him, and that he could never achieve the coordination to be a professional musician.
"I realized, 'He doesn't know anything. He really doesn't know anything," said McNeil, whose health had improved from physical activity. He became skeptical of medical authority; he would have to deal with his disease on his own.
McNeil briefly attended college in Oregon and Florida, settling in Louisville, Ky., where he paid his dues as a musician, working pickup gigs and making occasional forays to New York. He finally moved to New York City in 1974, at the age of 26. By that time, his symptoms had stabilized.
"I used to go to Roseland where all the club date agencies booked musicians. I bugged them until they called me, 'our friend the paper cut,'" said McNeil. He started to get sent out on gigs, one of which was for a big band that performed with music stands but no music. "The leader would give you a feature and say, 'Waltz, C, go.' And that would be it."
McNeil would go jam with Art Blakey and the Jazz Messengers at Boomer's, the long defunct downtown club. His reputation spread, earning him an audition with Horace Silver. "I never laughed so hard in my life," said McNeil of his reaction to Silver's phone call welcoming him to the band. McNeil lasted a year and a half before being fired for "insubordination." "I called him a 'deaf motherfucker,'" he said, remembering his retort when Silver blamed him for another band member's repeated mistakes.
His bravado, though, was cooled by his idol, trumpeter and composer, Thad Jones, who invited McNeil to sit in with his big band, co-led with drummer Mel Lewis, at the Village Vanguard.
"He wasn't kind," said McNeil, remembering their exchange. "'Why are you stupid?' he said. 'You've got a lot of ideas but you've got to make them work for you...or sooner or later you're going to run out of them.'" Jones was referring to the tendency of young improvisers to play too many notes too quickly, rather than patiently developing melodic ideas that reveal thought patterns.
"In one day I was a different player. He got my attention...I was left with the feeling I should be ashamed of myself," McNeil said. After McNeil returned and played again, Jones said nothing, but slowly, the corners of his mouth crawled upward to form a smile. "It was the best reward I ever got in my life."
McNeil began to lead his own groups and make records on the Steeplechase label. It was then that he met Lolly Bienenfield, a freelance trombonist from Long Island. They've been together romantically for more than 30 years.
"After we met, he left Billie Holiday's 'P.S. I Love You' on my answering machine," she said. Their bond became essential to McNeil's survival in the years to come.
In his early 30s, McNeil started having difficult days. He would drop things. He couldn't blow air through his horn. He didn't have any energy. He couldn't write. McNeil retreated from the scene. He had the dental bridge custom built to strengthen his embouchure. And he practiced.
"It's always been important for him not to pity him. He's an unbelievable optimist, someone who knows who he is," said Bienenfeld. "He's part undaunted spirit, part coot."
No Zen master, McNeil has a temper. "John yells. He made me yell rather than doing the classic female thing, which is shut it all in," she said. "I remember one time his face was so close, he was spitting."
By 1986, McNeil had written new music for an important record date, only to have to cancel once again due to a relapse.