by Oliver Sacks
Not until the 1980s was this veil of secrecy finally torn away, with great courage, by two virtuoso pianists, Gary Graffman and Leon Fleisher. Their stories were remarkably similar. Fleisher, like Graffman, had been a child prodigy and one of the preeminent pianists in the world from his teenage years. In 1963, at the age of thirty-six, he found the fourth and fifth fingers of his right hand starting to curl under his hand when he played. Fleisher fought against this and continued to play, but the more he fought, the worse the spasm became. A year later, he was forced to give up performing. In 1981, in an interview with Jennifer Dunning in the New York Times, Fleisher gave a precise and graphic description of the problems that had put a stop to his performance, including the years of misdiagnosis and sometimes mistreatment he had received. Not the least of his problems, when seeking treatment, was not being believed, for his symptoms came on only with piano playing, and very few doctors had a piano in their office.
Fleisher’s public acknowledgment of his condition came soon after Graffman acknowledged his own problem in 1981, and this spurred other musicians to admit that they, too, had been having similar problems. It also stimulated the first medical and scientific attention to the problem in almost a century.
In 1982, David Marsden, a pioneer investigator of movement disorders, suggested that writer’s cramp was an expression of disordered function in the basal ganglia— and that the disorder was akin to dystonia.3 (The term “dystonia” had long been used for certain twisting and posturing spasms of the muscles such as torticollis. It is typical of dystonias, as of parkinsonism, that the reciprocal balance between agonistic and antagonistic muscles is lost, and instead of working together as they should— one set relaxing as the others contract— they contract together, producing a clench or spasm.)
Marsden’s suggestion was taken up by other researchers, most notably Hunter Fry and Mark Hallett at the National Institutes of Health, who launched an intensive investigation of task-specific focal dystonias such as writer’s cramp and musician’s dystonia. But rather than thinking of these in purely motor terms, they wondered, too, whether rapid, repetitive movements might cause a sensory overload which could then cascade into a dystonia.4
At the same time, Frank Wilson, who had long been fascinated by the speed and skill of pianists’ hands and the “dystonic” mishaps that could befall them, found himself thinking in general terms of the sort of control systems which would have to underlie the repeated, “automatic” performance of very fast, intricate sequences of small, precise finger movements, with the activity of agonist and antagonist muscles in perfect reciprocal balance. Such a system, involving the coordination of many brain structures (sensory and motor cortex, thalamic nuclei, basal ganglia, cerebellum), would be operating, he argued, at or close to its functional capacity. “The musician in full flight,” he wrote in 1988, “is an operational miracle, but a miracle with peculiar and sometimes unpredictable vulnerabilities.”
By the 1990s, the tools had become available for a minute exploration of this question, and the first surprise, given that focal dystonia seemed to be a motor problem, was to find that cortical disturbances in the sensory system were, indeed, of crucial importance. Hallett’s group found that the mapping of dystonic hands in the sensory cortex was disorganized both functionally and anatomically. These changes in mapping were greatest for the fingers which were most affected. With the onset of dystonia, the sensory representations of the affected fingers started to enlarge excessively, and then to overlap and fuse, to “de-differentiate.” This led to a deterioration in sensory discrimination and a potential loss of control— which the performer, usually, would fight against by practicing and concentrating more, or by playing with more force. A vicious cycle would develop, abnormal sensory input and abnormal motor output exacerbating each other.
Other researchers found changes in the basal ganglia (which, with the sensory and motor cortex, form an essential circuit for the control of movement). Were these changes caused by the dystonia or were they in fact primary, disposing certain susceptible individuals to the problem? The fact that the sensorimotor cortex in dystonic patients also showed changes on the “normal” side suggested that these changes were indeed primary, and that there was probably a genetic predisposition to dystonia, which might become apparent only after years of rapid, repetitive movements in adjacent muscle groups.
In addition to genetic vulnerabilities, there may be, as Wilson has pointed out, significant biomechanical considerations: the shape of a pianist’s hands and the way he holds them, for example, might play a part in determining whether or not, after years of intensive practice and performance, he gets a dystonia.5
The fact that similar cortical abnormalities can be experimentally induced in monkeys has allowed Michael Merzenich and his colleagues in San Francisco to explore an animal model of focal dystonia, and to demonstrate the abnormal feedbacks in the sensory loop and the motor misfirings that, once started, grow relentlessly worse.6
Could the cortical plasticity that allows focal dystonia to develop also be used to reverse it? Victor Candia and his colleagues in Germany have used sensory retraining to redifferentiate the degraded finger representations. Though the investment of time and effort is considerable and success is not certain, they have shown that, in some cases at least, this sensorimotor “retuning” can restore relative normality of finger movement and its representation in the cortex.
A sort of perverse learning is involved in the genesis of focal dystonia, and once the mappings in the sensory cortex have gone wrong, a massive act of unlearning is needed if a healthier relearning is to occur. And unlearning, as all teachers and trainers know, is very difficult, sometimes impossible.
* * *
AN ENTIRELY DIFFERENT approach was introduced in the late 1980s. One form of botulinum toxin, which in large doses causes paralysis, had been used in tiny doses to control various conditions in which muscles are so tense, or in such spasm, that they can hardly be moved. Mark Hallett and his group were pioneers in the experimental use of Botox to treat musician’s dystonia, and they found that small, carefully placed injections might allow a level of muscular relaxation that did not trigger the chaotic feedback, the aberrant motor programs, of focal dystonia. Such injections— though not always effective— have enabled some musicians to resume playing their instruments.
Botox does not remove the underlying neural and perhaps genetic disposition to dystonia, and it may be unwise or provocative to attempt a return to performance. This was the case, for example, with Glen Estrin, a gifted French horn player who developed an embouchure dystonia affecting the muscles of the lower face, jaw, and tongue. Though dystonias of the hand usually occur only in the particular act of making music (this is why it is called “task-specific”), dystonias in the lower face and jaw may be different. Steven Frucht and his colleagues, in a pioneer study of twenty-six professional brass and woodwind players affected with this type of dystonia, observed that in more than a quarter of them, the dystonia spread to other activities. This happened with Estrin, who developed disabling mouth movements not only when playing the horn, but when eating or speaking, severely disabling him in daily life.
Estrin has been treated with Botox but has stopped playing, given the danger of recurrence and the disabling nature of his symptoms. Instead, he has turned his attention to working with Musicians with Dystonia, a group that he and Frucht founded in 2000 to publicize the condition and help musicians who are struggling with it. A few years ago, musicians like Fleisher and Graffman, or the Italian violinist who wrote to me in 1997, might go for years without a proper diagnosis or treatment, but now the situation has been transformed. Neurologists are much more aware of musician’s dystonia, as are musicians themselves.
* * *
RECENTLY LEON FLEISHER came to visit me a few days before he was to give a performance at Carnegie Hall. He spoke of how his own dystonia had first hit him: “I remember the piece that brought it on,” he began, and descri
bed how he had been practicing the Schubert Wanderer Fantasy for eight or ninehours a day. Then he had to take an enforced rest— he had a small accident to his right thumb and could not play for a few days. It was on his return to the keyboard after this that he noticed the fourth and fifth fingers of that hand starting to curl under. His reaction to this, he said, was to work through it, as athletes are often told to “work through” the pain. But “pianists,” he said, “should not work through pain or other symptoms. I warn other musicians about this. I warn them to treat themselves as athletes of the small muscles. They make extraordinary demands on the small muscles of their hands and fingers.”
In 1963, however, when the problem first arose, Fleisher had no one to advise him, no idea what was happening to his hand. He forced himself to work harder, and more and more effort was needed as other muscles were brought into play. But the more he exerted himself, the worse it became, until finally, after a year, he gave up the struggle. “When the gods go after you,” he said, “they really know where to strike.”
He had a period of deep depression and despair, feeling his career as a performer was over. But he had always loved teaching, and now he turned to conducting as well. In the 1970s, he made a discovery— in retrospect, he is surprised he did not make it earlier. Paul Wittgenstein, the dazzlingly gifted (and immensely wealthy) Viennese pianist who had lost his right arm in the Great War, had commissioned the great composers of the world— Prokofiev, Hindemith, Ravel, Strauss, Korngold, Britten, and others— to write piano solos and concertos for the left hand. And this was the treasure trove that Fleisher discovered, one that enabled him to resume his career as a performing artist— but now, like Wittgenstein and Graffman, as a one-handed pianist.
Playing only with the left hand at first seemed to Fleisher a great loss, a narrowing of possibilities, but gradually he came to feel that he had been “on automatic,” following a brilliant but (in a sense) one-directional course. “You play your concerts, you play with orchestras, you make your records…that’s it, until you have a heart attack on stage and die.” But now he started to feel that his loss could be “a growth experience.”
“Suddenly I realized that the most important thing in my life was not playing with two hands, it was music.…In order to be able to make it across these last thirty or forty years, I’ve had to somehow de-emphasize the number of hands or the number of fingers and go back to the concept of music as music. The instrumentation becomes unimportant, and it’s the substance and content that take over.”
And yet, throughout those decades, he never fully accepted that his one-handedness was irrevocable. “The way it came upon me,” he thought, “might be the way it would leave me.” Every morning for thirty-odd years, he tested his hand, always hoping.
Though Fleisher had met Mark Hallett and tried Botox treatments in the late 1980s, it seemed that he needed an additional mode of treatment, in the form of Rolfing to soften up the dystonic muscles in his arm and hand— a hand so clenched that he could not open it and an arm “as hard as petrified wood.” The combination of Rolfing and Botox was a breakthrough for him, and he was able to give a two-hand performance with the Cleveland Orchestra in 1996 and a solo recital at Carnegie Hall in 2003. His first two-handed recording in forty years was entitled, simply, Two Hands.
Botox treatments do not always work; the dose must be minutely calibrated or it will weaken the muscles too much, and it must be repeated every few months. But Fleisher has been one of the lucky ones, and gently, humbly, gratefully, cautiously, he has returned to playing with two hands— though never forgetting for a moment that, as he puts it, “once a dystonic, always a dystonic.”
Fleisher now performs once again around the world, and he speaks of this return as a rebirth, “a state of grace, of ecstasy.” But the situation is a delicate one. He still has regular Rolfing therapy and takes care to stretch each finger before playing. He is careful to avoid provocative (“scaley”) music, which may trigger his dystonia. Occasionally, too, he will “redistribute some of the material,” as he puts it, modifying the fingering, shifting what might be too taxing for the right hand to the left hand.
At the end of our visit, Fleisher agreed to play something on my piano, a beautiful old 1894 Bechstein concert grand that I had grown up with, my father’s piano. Fleisher sat at the piano and carefully, tenderly, stretched each finger in turn, and then, with arms and hands almost flat, he started to play. He played a piano transcription of Bach’s “Sheep May Safely Graze,” as arranged for piano by Egon Petri. Never in its 112 years, I thought, had this piano been played by such a master— I had the feeling that Fleisher had sized up the piano’s character and perhaps its idiosyncrasies within seconds, that he had matched his playing to the instrument, to bring out its greatest potential, its particularity. Fleisher seemed to distill the beauty, drop by drop, like an alchemist, into flowing notes of an almost unbearable beauty— and, after this, there was nothing more to be said.
Part IV
Emotion, Identity, and Music
23
Awake and Asleep: Musical Dreams
Like most people, I dream of music occasionally. Sometimes I have panicked dreams that I have to perform in public music that I have never played before, but generally, in my dreams, I am listening to or playing music I know well. And though I may be deeply affected by the music while I am dreaming, when I awake I sometimes have only the recollection that I have dreamed of music or of the feelings that went with it, without being able to say what the music actually was.
But on two occasions in 1974 it was different. I was severely insomniac and had been taking chloral hydrate, an old-fashioned hypnotic, in rather large doses. This disposed me to excessively vivid dreams, which could sometimes continue as a sort of quasi-hallucination even after waking. On one such occasion, I dreamed of the Mozart horn quintet, and this continued, delightfully, when I got up. I heard (as I never do with my normal musical imagery) every instrument clearly. The piece unfolded, played itself unhurriedly, at its proper tempo, in my mind. And then suddenly, as I was drinking a cup of tea, it stopped, vanished like the bursting of a bubble.
During the same period, I had another musical dream, and this too continued into the waking state. Here, in contrast to the Mozart, I found something deeply disturbing and unpleasant about the music, and longed for it to stop. I had a shower, a cup of coffee, went for a walk, shook my head, played a mazurka on the piano— to no avail. The hateful hallucinatory music continued unabated. Finally I phoned a friend, Orlan Fox, and said that I was hearing songs that I could not stop, songs that seemed to me full of melancholy and a sort of horror. The worst thing, I added, was that the songs were in German, a language I did not know. Orlan asked me to sing or hum some of the songs. I did so, and there was a long pause.
“Have you abandoned some of your young patients?” he asked. “Or destroyed some of your literary children?”
“Both,” I answered. “Yesterday. I resigned from the children’s unit at the hospital where I have been working, and I burned a book of essays I had just written…. How did you guess?”
“Your mind is playing Mahler’s Kindertotenlieder,” he said, “his songs of mourning for the death of children.” I was amazed by this, for I rather dislike Mahler’s music and would normally find it quite difficult to remember in detail, let alone sing, any of his Kindertotenlieder. But here my dreaming mind, with infallible precision, had come up with an appropriate symbol of the previous day’s events. And in the moment that Orlan interpreted the dream, the music disappeared; it has never recurred in the thirty years since.
In the curious intermediate states between waking and sleep— the “hypnagogic” state that may precede sleep or the “hypnopompic” state that may follow awakening— free-floating reverie and dreamlike or hallucinatory apparitions are particularly common. These tend to be highly visual, kaleidoscopic, elusive, and difficult to remember— but on occasion they may take the form of coherent musical hallucina
tion. Later in 1974, I had an accident requiring surgery to one leg and was hospitalized for several weeks in a tiny windowless room that did not allow any radio reception. A friend brought me a tape recorder, along with a single cassette— of the Mendelssohn Violin Concerto.1 I played this constantly, dozens of times a day, and one morning, in that delicious hypnopompic state that follows waking, I heard the Mendelssohn playing. I was not dreaming but fully aware that I was lying in a hospital bed, and that my tape recorder was by my side. One of the nurses, I thought, must have put it on, as a novel way of waking me up. Gradually I surfaced, the music continuing all the while, until I was able to stretch out a sleepy hand to turn the recorder off. When I did this, I found that the machine was off. In the moment of realizing this, and being startled into full wakefulness, the hallucinatory Mendelssohn abruptly ceased.
I had never experienced coherent, continuous, perception-like music in hypnagogic or hypnopompic states before this, nor have I since. I suspect that it was a combination of events that tipped me into “hearing” music in this way: the almost nonstop exposure to Mendelssohn, which had supersaturated my brain, plus the hypnopompic state.
But after speaking to a number of professional musicians about this, I find that intensely vivid musical imagery or quasi-hallucination is not uncommon in such states. Melanie Challenger, a poet who writes libretti for operas, told me that when she wakes from her afternoon siesta and is in a “borderline” state, she may experience very loud, very vivid orchestral music— “it is like having an orchestra in the room.” She is perfectly aware at such times that she is lying in bed in her own room and that there is no orchestra, but she can hear all the individual instruments and their combinations with a richness and a realness that she does not have with her ordinary musical imagery. She says that it is never a single piece that she hears, but a patchwork of musical fragments and musical devices “stitched together,” a sort of kaleidoscopic playing with music. Nonetheless, some of these hypnopompic fragments may stick in her mind and play an important role in her subsequent compositions.2
