Disobedient Hands

This article is from the archive of The New York Sun before the launch of its new website in 2022. The Sun has neither altered nor updated such articles but will seek to correct any errors, mis-categorizations or other problems introduced during transfer.

The New York Sun

Leon Fleisher first made headlines as a virtuoso pianist, then as the tragic master with a crippled right hand. In 2004, when Mr. Fleisher made news again with “Two Hands,” his first two-handed recording in four decades, it sparked a flurry of phone calls, emails, and hushed conversations among a secretive group of performers. We will all be watching this Wednesday, when Charlie Rose interviews Mr. Fleisher on “60 Minutes.” We are New York City musicians afflicted with focal dystonia.


The condition, which has haunted Mr. Fleisher for decades, is a neurological disorder of the brain. It can affect the face, hand, neck, jaw, and leg. There is no cure for it, though a determined musician like Mr. Fleisher can perform beautifully with the aid of Botox and a regimen of stretching and deep massage called Rolfing. Mr. Fleisher also limits his engagements and strategically chooses repertoire he is able to play. That approach, however, is not an option for blue-collar musicians: Freelance musicians often work a dozen services a week and must be note perfect on an unrelenting stream of demanding literature.


Warren Deck won the coveted tuba position with the New York Philharmonic after years of weekly lessons, dedicated practice, and study at the University of Michigan. He settled in for a life of topflight music-making, but at age 39 began having trouble attacking notes cleanly. An unnerving quiver in his upper lip also made legato passages difficult. Mr. Deck fought against his own body to coax precise tones from the tuba, but his facial muscles tightened and the increased tension sometimes produced completely wrong pitches.


Mr. Deck reacted predictably for a dedicated artist. “I started practicing like a madman,” he said. “I hid it pretty well for a while, but eventually my colleagues noticed.”


Even after seven years of doctors’ visits, Mr. Deck had no idea why this was happening. At the time few medical practitioners looked for dystonia. After eight years of emotional hell, still playing poorly and still searching for a cure, Mr. Deck was diagnosed by Dr. Steven Frucht at Columbia University Medical Center. Even though music was Mr. Deck’s life, finding out there was no hope actually gave him hope.


“It was really a relief and gave me permission to stop banging my head against the wall,” Mr. Deck said. “I wasn’t lazy or stupid because I couldn’t figure this thing out.” He felt he was able to get back to living a happy life. Financially secure because of an occupational disability policy, Mr. Deck now teaches part time at the University of Denver and also attends a community college where he is “taking all the courses that I blew off in college.”


Dr. Frucht compares the brain to a supercomputer that runs thousands of applications simultaneously. Focal dystonia is like a computer virus of one small area of the brain: the part that controls a musician’s ability to play. “It’s no wonder musicians receive skepticism when they can do everything normally, except play their instruments,” Dr. Frucht said. “It’s only in the last 10 to 20 years that people have understood this. Before that, many patients were called hysterics.”


Toby Hanks can relate; dystonia made him question his own mental health. Mr. Hanks, also a tuba player, was a member of the New York City Ballet Orchestra when he began to struggle. Aside from going to doctors, Mr. Hanks took lessons with former teachers and embouchure specialists to see if he was doing it to himself. He even tried hypnosis. Mr. Hanks looked inward and delved into the situation with a psychiatrist, but unearthed nothing. Dystonia is a condition of the brain, but it is not psychosomatic.


Friends advised Mr. Hanks to keep it a secret so he could keep playing, but the affable musician isn’t wired that way. Mr. Hanks found support from his orchestral colleagues – only once was he pressured to retire – and he did his best to support them in return. Mr. Hanks wouldn’t let performances suffer, so if the program contained a dicey exposed passage, he hired a substitute. When dystonia was found to be the culprit, he retired immediately.


Mr. Hanks generously discusses his 15-year ordeal to help others, but says, “I want to be more than just a ‘dystoniac.'” Mr. Hanks teaches at Manhattan School of Music, Peabody Conservatory, and Yale, plays the guitar, and is writing a children’s book about a tuba player who lost his “oompah.”


My own story may be typical of many pay-for-play musicians. I was a woodwind doubler on Broadway, a “practiceaholic” who played all the saxophones, flutes, and clarinets. When my hands first began to mangle etudes I had once mastered, I was a young freelancer without good health insurance. Musicians live to play, but they also play to live and pay the rent. I assumed it was a problem of overuse but kept working to qualify for health insurance and find a cure.


New York City is really a small town, and I lived in morbid fear of making a mistake in concert and being discovered. The 10-year secret may have been more damaging than the physical condition. Once I got into a steady Broadway show and started hundreds of doctors’ visits, no chiropractor, physiatrist, acupuncturist, physical therapist, massage therapist ever mentioned dystonia. When I retired, financially strapped at age 38, and looked for my first “real job,” I didn’t tell potential employers about the condition because they might assume I couldn’t use a computer keyboard.


There are now upward of 25 medical professionals in the country who are trained to recognize the condition. Dr. Frucht, assistant professor of neurology at Columbia University Medical Center, is at the forefront. “The medical community has gotten much better at diagnosis,” he said. “Many patients now even ask if they might have dystonia.”


This improvement can be traced fairly directly to the dedication of Glen Estrin, a busy French hornist until severe dystonia of the jaw ended his career. Mr. Estrin and Dr. Frucht teamed up to form Musicians With Dystonia (www.dystonia-foundation.com), an organization dedicated to promoting early diagnosis, supporting afflicted musicians, and encouraging research. Mr. Fleisher enthusiastically agreed to leverage his celebrity and be their spokesman.


“Losing a career you worked years to perfect is a tragedy,” Mr. Estrin said. It is tragic when musicians are too handicapped to perform, but thanks to Musicians With Dystonia, many will not be as emotionally or financially injured as in the past.


The New York Sun

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