The Season of My Dystonia

Living in the Middle Voice

Reflections on Mindfulness and Musicianship

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I've probably played Vivaldi's Le quattro stagioni, or at least parts of it, several dozen times. A recording—on cassette tape, for anyone who remembers those—appeared in my Christmas stocking when I was about ten, and I practically wore it out from repeated listening. I couldn't have known at the time that ironing it deeply into the grooves of my brain would anchor me now, as I gathered myself for my first public performance in almost three years.

That it was happening at all was a complete miracle. I'd been called at the last minute—more precisely, my husband had been called, but since he couldn't do the gig, he'd offered it to me. “I don't know if you feel ready yet, but let me know?” he'd said, forwarding me the text. My stomach clutched, and I mulled it over: string quartet, music I knew well, with good friends who happened to be exceptionally kind people. I still didn't know what would happen, but I recognized this as my best chance.

“Ok, I'll do it,” I said, my heart in my throat. Finally, it was time.

The Crisis

In early July of 2018, in the space of just several weeks, I descended into every musician's worst nightmare: something strange started happening with my left hand. The signs at first were incredibly subtle—impossible to distinguish from a run-of-the-mill “off day.” A few weeks earlier, fresh off a much-needed vacation, I'd begun experimenting with less tension in my hand. At first, it felt fantastic; my fingers seemed to fly around the fingerboard with less inhibition and better coordination. The unfamiliarity of it didn't intimidate me—I'd reworked my technique many times over the years, willing to try virtually anything that promised increased accuracy, reliability, and comfort.

But after a week or two, I could sense something wasn't right. My fingers felt sluggish, difficult to control. I figured I was just adjusting to the new technique. And I was adamant that I didn't want to go back to the “old” way—after a taste of fluidity and freedom, it seemed nonsensical to return to the hammering and squeezing I'd relied on before. So I tried to brush off my anxiety. But instead it only grew as the days went by, bringing me ever closer to a series of solo recitals I'd been anticipating for months.

About three weeks after things first started feeling off, while at a musicians' meditation program where I was teaching, I noticed the first definitive sign. Shifting up into third position on the A string, I watched in horror as my ring and pinky fingers reflexively curled back toward my palm, as if trying to get out of the way. I froze. Do they always do that?

I tried the shift again. Again the fingers curled backward. Eventually I realized that, with effort, I could prevent them from contracting. But as I continued to practice, the fingers began curling more and more: I no longer had control over my hand.

Over the previous weeks, with the background chorus of my anxiety humming ever louder, my sleep had deteriorated. But that night I struggled to find any rest at all as my mind raced through all the scenarios, including the one I wanted most to deny:

I had focal dystonia.

At the time, I knew almost nothing about dystonia, except that it was a condition with origins in the brain, and widely considered to be incurable. You're just overworked, one of my faculty friends suggested. Maybe it's tendinitis, others volunteered. Stress, muscular overuse, the change in my technique...there were so many excuses I could throw at the situation. Whatever it was, I would deal with it after I got home.

The Long Road Back

Two weeks later, I returned to New York, deeply shaken and exhausted after a week of intense teaching and three recitals in Canada, which I'd somehow managed to survive despite my increasing loss of dexterity. At the last one, in a sweltering cathedral in Montreal, I'd received my first standing ovation. It should have felt like the high point of my career, but even as others cheered, I couldn't celebrate my ascent: I was already staring straight into the abyss below.

I tried taking a week off to “recover” and scheduled some doctors appointments, all the while furiously Googling symptoms and treatments. Will I be back in shape by the start of the season? Will I ever feel normal again? I slept less and less each night, and my daytime anxiety increased to the point that I had trouble being alone. Nothing and nowhere felt safe.

Eventually I realized that whatever the diagnosis was, I wouldn't survive it without my sanity, so I got the help I needed to get my sleeping back on track. During the day, I leaned on my meditation experience to access self-compassion and stay in the present moment—any thoughts of the future immediately invited panic.

In the course of my research, I was relieved to discover my most harrowing belief about dystonia—that it is incurable—was a misconception. Despite conventional medical wisdom favoring treatments like Botox, which ameliorated symptoms but did not treat the underlying cause, a small but important number of musicians had freed themselves from dystonia with neither drugs nor surgery, by patiently and thoroughly retraining their bodies and brains.

Over the next several months, I repeatedly returned to these stories of recovery as I navigated the world of rehab medicine specialists, neurologists, and physical therapists, embarking on a journey of recovery that is now in its final stages. Some of the resources I encountered were helpful, others less so. I just kept following my instincts, cultivating determination and kindness toward myself as I took apart everything I'd known about playing—physically, emotionally, psychologically—and started over.

About a year after my initial diagnosis, I had the enormous good fortune of meeting the person who definitively put me on a path to recovery, violinist Sophie Till. With her help, I totally reconfigured my technique, healing my brain as a result. And the reward for committing to this arduous, time-consuming process was double: not only could I play again, but previously intractable technical problems evaporated with the use of sensible, biomechanically efficient movements that felt effortless in comparison to my old technique.

Rebirth

I tried to lean into the common-sense, proven reliability of my new technique as I waited backstage to begin the Vivaldi. A chill from the open door to the gallery made me shiver and tremble, but I knew the austere, dead winter of my dystonia was behind me. This moment, like early spring—blustery, unpredictable—nonetheless held the promise of renewal. And as the four of us emerged, warmly greeted by the audience, I was struck with a reassuring insight: after nearly three years of self-imposed exile, I was no longer alone. This was my space, too, and I was welcome in it.

Of course I'm thrilled that, after three years of near-constant worry that I would never return to professional playing, I've stepped back onstage. And in the meantime I've absorbed immeasurable wisdom about string playing, the nervous system, and the learning process. But as I reflect on both the trials and gifts of this challenging period, I have to conclude that the most powerful lessons have been even more profound and personal.

I lived for three years with the emblem of my “specialness” stripped away, and I survived. I found reasons to believe in myself and my ability to be of service, to contribute something of value, because collapsing into despair just wasn't an option. I discovered who I am and what matters to me when no one is paying attention to what I'm doing—or how well I'm doing it. I've found that the answer to the question, “This is what is—now what?” is the source of my greatest empowerment, because it means saying yes to life, without conditions. Even when it breaks your heart.

I wish I could say I would've found the courage to write this—to re-emerge—without having recovered, but I don't know if that's true. What I can say is that I can now look back at my viola-less self, shivering through the frigid darkness of three long winters of dystonia, and see her with the admiration and respect she deserved all along.