McNeils Backbone

[Guest guest]

http://benwaltzer.org/archives/132

Like many trumpeters, McNeil has a unique brand above his upper

lip where flesh meets metal. It looks like a setting sun, and was

visible from up close, as he removed his instrument from his mouth,

rose steadily from his stool, and grasped the microphone.

" This is the part of any jazz gig where the band plays a blues and one

of us talks over it. That's how you know it's jazz…I think, " said

McNeil, 60, to the audience spread out on the lawn before the gothic

Connecticut State Capitol in Hartford. McNeil's voice was deep and

rich, like a morning-drive deejay's. " Our drummer, Jochen Rueckert,

just flew in from Germany where he lives in his ancestral castle…He

has people killed for his amusement, " he said, deadpanning.

Typically droll and self-deprecating, McNeil reaches for humor, often

of the dark sort, whenever possible. (Recovering in the hospital recently from

a staph infection that only a single type of antibiotic

could kill, he said, " It's showing signs of becoming totally drug

resistant, at which point it'll be like the 19th century, like,

`Bye.' " ) But beneath his conviviality lurk strains of disharmony.

McNeil is struggling. He always has.

" Rediscovery, " his latest recording, doesn't show it. New York Times

critic Ben Ratliff called his recent playing " astonishing in its

harmonic acuity. " This wasn't always the case, and not for lack of

talent or skill. McNeil has Charcot-Marie-Tooth disease, a painful

genetic disorder of the peripheral nerves that affects muscle control.

As if concocted to beset trumpet players, the degenerative condition

has, among other complications, attacked his diaphragm, integral to

blowing air through the horn; his facial muscles, which help produce

tone and timbre; his tongue, which controls articulation; and his

fingers, needed to work the trumpet's valves. The recurrence of

Charcot-Marie-Tooth disease — it comes in waves — has forced McNeil

to quit playing altogether several times since he came on the jazz

scene in the mid-1970s. At times, he's had to use a laundry rack to

support his trumpet while practicing. He had a dental bridge built to

refocus his embouchure. He learned to play with his left hand, to

give him an alternative when his right hand won't cooperate. And in an

art that prizes timing, the degeneration of his reflexes has demanded

he play slightly early so the notes arrive on time.

Now, his performing career is on the upswing again. But he remains on

guard, because as long as he can remember, his body and his soul have

been enemies.

Some, though, just know him as a master of the music.

" The thing about is that you can't separate his personality from

his musicianship. He's extremely funny and witty, and as a musician

he's an exemplary, studied cat. He's a great teacher, somebody who

can communicate, perform, and hand it down to others, " said

Liebman, 62, the renowned saxophonist with whom McNeil worked in

the 1980s, in a phone interview. " He is unheralded, unrecognized, in

the trenches taking care of business, constantly growing. He deserves

any kind of recognition that he gets. "

Liebman was unaware that the night before they were to record McNeil's

1983 live album, " The Things We Did Last Summer, " the trumpeter was

suddenly unable to move the fingers of his right hand, or to get enough

air through the horn to produce a clear tone. According to McNeil, he

scuffled through that concert, but soon after decided to take a hiatus

from recording and performing to fight the Charcot-Marie-Tooth

disease. He couldn't afford to sound bad. It was a battle he'd long

been familiar with.

" I might ramble, it's the drugs talking, " said McNeil, as he sat down

for coffee near his apartment in Park Slope, Brooklyn. He takes daily

doses of Oxycodone for pain (Oxycontin is the time-release version of

the same drug: " When I need it, I need it now, " he said). Over the

years, Charcot-Marie-Tooth disease has attacked his body from so many

directions that it has left him with the posture of someone frozen in

a dance to unheard music.

McNeil was born in 1948, in Yreka, Calif., in the shadow of Mount Shasta.

When he was found to have problems with his legs as a toddler, it was assumed

he had muscular dystrophy like his disabled uncle. McNeil's father, a grocer

and the town's mayor,

had already lost his first son, , to cystic fibrosis. He

encouraged McNeil, who could hardly grasp a pen, and lived for years

in various braces for his legs and twisted spine, to fight the

disease.

" Back then doctors expected you to live only to twelve or thirteen, "

said McNeil, passing the crooked fingers of his left hand over

half-shuttered eyes and a white goatee. " The attitude was, `Don't

worry about it, you're not going to be around.' "

McNeil's father, who experienced late-onset Charcot-Marie-Tooth

disease in his 70s, enlisted the help of a local trainer to work with

his son. Every week they would exercise with weights together,

building McNeil's stamina and body control.

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 , who invited McNeil to sit in with his big band, co-led

with drummer Mel , 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.' " 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, 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. " 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.

" So once again he quit performing, " said Bienenfeld, who had been

supporting them both financially through the difficult period. McNeil

began teaching at the New England Conservatory of Music in Boston,

Mass. He has now been on the faculty there for over 20 years. " He

put himself on a tedious six-hour a day practice routine…to be able to

hold his horn to his face for so many hours he used a laundry drying

rack to support the trumpet. "

McNeil practiced this way, ritualistically, for two years. And just

when his facial muscles were getting back into shape, he suddenly lost

control of his right hand. McNeil's response was to have the

trumpet-maker he endorsed, Kanstul, build him two left-handed

instruments. But he had to learn to play with his left hand.

When jazz musicians improvise, they try to play what they hear in

their mind's ear. So often, McNeil had to learn to hear what might be

possible for him to play given his physical limitations. Over the

years, his ordeals have also demanded he approach the instrument in

every way possible, in fact, in ways that perhaps no other trumpet

player ever has, said Russ , a Brooklyn-based trumpeter who

counts McNeil as a mentor.

" His physical limitations have helped a lot of trumpet players, " he

said by telephone. " His trumpet book had you practice difficult

passages with the left hand so that they're easier to do when you

switched back to your right. It forced your brain to work to work a

different way. "

McNeil made a record, " Fortuity, " left-handed. He also started to

take daily doses of human growth hormone, which combats muscle

wasting. It brought his right hand back to life. But his back had

also started to bother him.

" In `93 basically my spine disintegrated, " said McNeil, who was then

experiencing insufferable pain, and the feeling that his legs were

either crawling with bugs, or on fire, or both. Doctors at the

Hospital For Special Surgery in New York determined that he had

neuropathic spine, a condition related to Charcot-Marie-Tooth disease.

Two upper vertebrae had dissolved, internally exposing his spinal

cord. Doctors told him a wrong move could bring paralysis, even

death. He was asked if he had his will.

Collapsing a lung to gain access, it took doctors 13.5 hours to

reconstruct his upper spine using bone from his ribs and both hips

held in place by screws, and metal rods. Before the surgery McNeil

asked if the screwdriver used in such a sophisticated procedure might

be " special. " The surgeon said, " No. "

McNeil's surgery was a success, making him 1.5 inches taller despite

having had two discs removed. As he recovered, he began again to

exercise and build muscle tone. He also increased his growth hormone

dosage, which now costs him and Bienenfeld between six and eight

hundred dollars a month. McNeil railed against a bill sponsored by

New York Sen. Schumer, a Democrat and Iowa Sen.

Grassley, a Republican, which aims to curb the abuse of growth hormone

among professional athletes and others by classifying it a controlled

substance. Doing so, McNeil said, would make it more difficult to

obtain for the sick people who really need it.

" I'm not trying to hit home runs, I'm trying to climb stairs. Without

growth hormone, my career would be over, " said McNeil, walking briskly

back to his apartment, fortified also by caffeine.

The last few years have been especially productive for him. His

records have garnered critical acclaim. He's led his own week-long

engagement at the Village Vanguard, the same club where he was once

set straight by Thad .

" Take the body away, you can think about music, but nobody can hear

it, " he said before ascending to his third floor walk-up. ###