Living with Musicians Focal Dystonia

 

My name is Tao Guthrie. I am an American trombonist. I live with Musician’s Focal Dystonia. Science calls it a neurological disorder characterized by involuntary muscle contractions and postures. Focal specifies that the dystonia affects a specific area of the face and or body. We call it musician’s dystonia because it is related to a musician’s task-specific repeated motions and postures. Only 1-2% of professional musicians are affected by dystonia, almost all are classically trained, and most are male. [1]

That’s how medical science sees me; a male, classically trained trombonist that experiences tremors during the combined actions of holding the instrument to my face, creating the embouchure, and passing air into the mouthpiece. At that exact moment, several things happen, beginning with a sudden absence of control. What once was a familiar posture holding the instrument, becomes a slowly spinning top about to tumble out of its balance. Simultaneously, a tremor initiates in my torso, arm, and diaphragm; always the same oscillation, always the same debilitating lack of tone control. To my audience, my once steady and strong tone now sounds anemic and uneasy. In the lower register, a very obvious tremolo is apparent, which becomes somewhat less apparent as I climb into the higher register.

Dr. Seth Pullman, a specialist in the Department of Neurology at New York-Presbyterian/Columbia University Hospital in Manhattan, first diagnosed me in 2014. I had been experiencing the tremors, and subsequently had been misdiagnosed with Essential Tremor, since 2009. Dr. Pullman, whose son is a trombonist, was the first to fully study my symptoms and determine the totality of my affliction. When someone is faced with an incurable condition such as this, it feels as though the body has betrayed them. I felt like I lived with a part of me cut off, unaffected by my efforts for self-improvement, recklessly undercutting my desire to be the best I could be in my craft. My years of practice, study, and development as a instrumentalist became empty, meaningless hours because every fine motor skill I had honed was now buried beneath the ceaseless shaking of the dystonia. I will never be cured of this.

Most brass players experience the dystonia in the corners of their mouth and jaw. Because mine is in my torso, I’m at a greater disadvantage because ordinary treatment will have no effect. After my initial diagnosis, Dr. Pullman and his colleagues injected my shoulder and back with botulinum neurotoxin, better known as Botox. Unfortunately, this had no effect, and the tremor continued unabated. Since then, during particularly stressful performances, I have taken propranolol, an anti-anxiety drug meant to reduce the heart’s workload and help it beat more regularly, commonly used to reduce tremors. This too, has done little to prohibit the tremors, but I feel somewhat less afraid of the loss of control I inevitably experience. It feels a bit like treating a stubbed toe with a margarita.

I had never heard of or encountered anyone with dystonia when I developed symptoms in the winter of 2009. I was performing in the acclaimed Broadway hit, Blast! (blasttheshow.com). I encourage readers to watch a video of Blast! to understand the physically demanding nature of the show. In short, the musicians and dancers of the show share the stage performing intricate choreography while playing their instruments. On this particular tour, I was a swing, meaning I was responsible for learning and executing the entire track of one of four individuals in any given performance. Consider the swing track as an understudy for three people that also performs in their own track when everyone is healthy.

It was a highly stressful and emotionally demanding experience that I struggled with from the beginning to the final curtain. I was constantly challenged above my abilities to handle the job and I found myself enduring what I now consider a trauma of sorts from being so overwhelmed. I was also facing an emotionally abusive relationship that even my friends were dismissive of. The toxic combination of stress and trauma is very likely, in my opinion, the cause of my dystonia. This is consistent with the stories of other dystonic cases. Joaquin Farias described the initial symptoms perfectly in his book Intertwined. How to induce neuroplasticity. (Farias, 2012)

“…the patient perceives her hand or objects in contact with her hand as different. At the time, the maladaptive plastic change or the degradation of the cortical somatosensory representation has taken place. In the subsequent phase the patient tries to align her distorted perception with outside demands. In this second phase, fast, mild tremors primarily appear, which the patient tries to control, producing tension and precipitating the third phase which is characterized by the presence of spasms that completely hinder movement.”

              Dealing with these unfamiliar and debilitating tremors while trying to perform at a high level in front of thousands of people every night created the final, most destructive element of dystonia: doubt. I have doubted my abilities each and every time I pick up the instrument since those initial symptoms to this very day. Every note I play feels like I’m trying to thread a needle with roundhouse kick. The tremor removes all subtlety and finesse, creating chaos just before the exhale of breath into the horn. The resulting inaccuracy in creating a clean sound fuels the uncertainty I live with while performing.

              During the months and years after my first symptoms and the crippling doubt I faced while trying to build my career as a musician, I found little sympathy and understanding from even my closest friends and family. Dystonia is almost entirely invisible to everyone around the sufferer. Its description even causes confusion that is absent in more common debilitating conditions, such as Parkinson’s. Even colleagues may not have heard of or have an understanding of the effects of dystonia insomuch as to respect the struggles the sufferer faces. I’ve frequently felt ashamed of my inability to perform to my personal standards, and I’m afraid my fellow musicians will consider me incapable or worse, unprofessional in my performance quality. Beyond that I fear contractors will not hire me if I tell them what I have. And for good reason.

              Before the 2009 contract with Blast!, I had been accepted into the Navy as a musician. The Navy had permitted my time away to finish my contract before I’d have to enter basic training. Upon returning and visiting my recruiter, I was forced to explain my then-undiagnosed condition. I was discharged immediately. My military career was pulled before it could even start. I often wonder what my life would have been like if I could have continued down that path.

Doubt. Fear. Isolation. Eventually, my self confidence eroded so far that, in 2014, I gave up. I turned away from performing and half-heartedly embraced a life outside of music. I was 31, living in New York with my then-girlfriend, trying to ‘face the music’, or lack thereof. I had sought out alternative methods of taking back control of the tremors including Alexander Technique, Meditation, and Yoga. I even tried auditioning for the Blue Man Group on one occasion, and as a guitarist on cruise ships on another occasion. Both resulted in contractors scratching their heads over why my entire resume is full of trombone experience. Regardless of the fact that I could probably handle any gig on guitar, bass, or another low brass instrument, employers were reluctant to risk a well-paid position on someone without the experience on those instruments.

I spent 2014 ensconced in my doubt bubble, angry at the industry, sick of the New York hustle, and continually at odds with my partner over my anemic efforts to move forward. When I was at my lowest, I needed support. What I got instead was denigration. Not that I blame her; who wants to constantly hold someone up that won’t help themselves?

I put what little energy and enthusiasm (and money) I had remaining into a yoga certification. I used the yoga mat and the focus on others as a way to escape my self-pity. I was depressed and constantly thinking about suicide, so I took on every teaching job I could find, even those that were extremely inconvenient, such as 6 am classes in another borough. After working until 10 pm the night before. I barely slept in 2014. I digress.

Did yoga help? I think so. I think it helped me with the fallout of being a human being with no purpose in life. After music was taken away from me, yoga helped me release some of the self-doubt and shattered confidence. I was focused outward, on my students, and my friends and family, rather than inward. It was the recalibration I needed, and ultimately the reason I was able to move on.

Among the many things I learned that year was the fact that I’m a musician first and foremost, and I will never feel comfortable pretending to be anything else. I loved teaching yoga and will always seek to subsidize my music career with the giving nature of building others up with yoga. Armed with renewed self-worth and confidence, I accepted one theatre contract after another for the next couple years as I rebuilt my career.

Over the years I developed my own methods of working around the dystonia. Namely, a device that holds the instrument on a stand so that I don’t have to. The Ergobone[2] support system takes the weight of the horn off of my left side, the afflicted side, and allows me to perform with almost no tremor. There is still a bit of unease at the moment just before I play a note, but it’s been reduced significantly as a result. It comes with a shoulder/chest brace that could allow me to stand and play, but I find it awkward and unwieldy enough to avoid using. For a while that suited me just fine, for pit musicians sit while they work anyway. I was just happy to be working again.

At the beginning of 2017, I received an offer to return to the stage on the new Japan tour of Blast: The Music of Disney [3] - building upon the exemplary artistry of the original show with a fresh look, sound, and choreography. I can’t put into words how excited I was to receive that call. But also, worried; I wondered if I could handle not only the challenges Blast! presents, but also if I could manage playing while standing. So, I redoubled my efforts in combating dystonia. A week later, I was on a skype call with renowned flautist and dystonia sufferer Anna Détári.[4] Her story of recovery emboldened me in my fight to return to the stage. She introduced me to inducing neuroplasticity, a rehabilitative method that attempts to retrain the nervous system to perform without triggering symptoms. I was expected to start rehearsals for Blast in May. I had 2 months to do years of retraining.

Again, I didn’t sleep. But this time, I had a purpose. I was driven. The ghost of my underwhelming performance in 2009 haunted me; this time I’d be prepared, focused, impressive. The doubt that I could perform for thousands each night devoid of symptoms tore at me, so I tore off the Ergobone and played my final 2 months with 42nd Street National Tour without it, slowly rebuilding my strength. Fear of disappointing everyone, all the fans, all my colleagues, and myself loomed over every moment. A small voice in the back of my head begged me not to revisit the trauma that had caused all this in the first place. Why tempt that which had brought so much anguish?

Because I needed to be on that stage. I needed to prove to myself I can win this fight. The highlight of my entire career was the Blast experience. The most fantastic feelings I’ve ever felt were enshrined in my memories of those performances. The exhilaration of the risk, the lights, the pace, the unexplainable connection between performers, between the music and the movement, between the past and the present; I needed to be on that stage.

I won’t bore you with the journey from discovering a work around to play while standing, (lifted my elbow above my shoulder; although awkward looking and feeling, relieved the tremor significantly) or the acceptance I developed in what would be my best version of myself. I will only say this; after falling so far, the climb back to the top was the hardest I’ve ever worked in my life.

On opening night, we performed to the Nanyo city, Yamagata Prefecture audience of 1400. As we stood in the final applause, I couldn’t see the audience through my tears. For the first time in eight years, I was proud of myself. I felt relief. Contentment. I’m still broken, and I will always have to work a little bit harder to be my best, but I cannot, and will not let it control me. In fact, it has made me stronger, able to accept any challenge, ready to face my ghosts and doubts head on. For a moment, every night on our five-month tour, I was exactly where I was meant to be. And nothing can take that away from me.

 

[1] Dystonia Medical Research Foundation – www.dystonia-foundation.org/musicians

[2] Ergobone (ERGObrass Ltd) support system developed by Jouko Antere – www.ergobrass.com

[3] Blast: The Music of Disney 2017 Japan Tour – www.blast-tour.jp/

[4] Anna Détári’s story - http://musicians-focal-dystonia.com/anna-detari-focal-dystonia-story/

Naoki-san teaching me percussion for Blast

He's a Pirate - third from the front, in front of the tuba

Yoga - overcome fear by not letting it control you