Mental Health: João Carlos Martins tells how focal dystonia affects mental health

João Carlos Martins does not give up on music. The pianist and conductor returns to Carnegie Hall, in New York, 60 years after his first performance at the venue.

With bionic gloves, developed by designer Ubiratan Bizarro Costa, he prepares for the concert that will take place on November 19th.

At 82 years old and with symptoms of focal dystonia since he was 18, the musician has been reinventing himself for decades out of love for the profession.

The disease is caused by a problem with the central nervous system that affects movement. In the case of the pianist, the condition affects the hands. The symptoms are involuntary muscle contractions and spasms, often repetitive, that cause severe pain.

In an unpublished article, João Carlos tells his fight against dystonia and how this dysfunction affects mental health.

My Story as a Dystonic Pianist

By João Carlos Martins

Having to abandon the dream of making music is the most terrifying prospect a musician can face. And the most tragic.

This has almost happened to me several times throughout my 70-year career. I went through 25 surgeries, dozens of treatments, contradictory diagnoses and two life-changing injuries. But none of the obstacles that crossed my path could force me to leave this vital dream.

When I was just 18 years old—in 1958, just six years after making my professional debut as a pianist—I began to experience involuntary tremors in my right hand.

It took until 1982 for the chronic condition affecting me to be diagnosed as focal dystonia. This complex movement disorder wreaks havoc on the lives of at least 1% of professional musicians, according to neurologist Alexandre Kaup.

For years no one could explain what was happening. When my symptoms started, some doctors even suggested that I might not be comfortable playing in public — it was a psychological problem.

The truth was just the opposite. I loved playing recitals and live concerts as much as I loved recording in the studio. My respect for the public was uncompromising.

Even if it meant playing with a metal device on my fingers, which I also tried. The problem was agonizingly physical. Toward the end of a concert, I noticed drops of blood splattering the piano keys. But I fought the pain to the last chord.

Looking back, I don’t know how I managed to play over 1,000 recitals and concerts with major orchestras in the US, Europe, Asia and Latin America.

The pain in my hands was sometimes almost unbearable. But the determination to communicate with my audience inspired me to keep playing.

What also helped was learning to trick my brain. After all, this is where the neurological failure that causes dystonia originates. For many years, involuntary movements didn’t bother me for two or three hours after a good night’s sleep.

So no matter where I traveled, I figured out how to use that to my advantage and organized my schedule to allow me to sleep up to 15 minutes before each concert.

This trick gave me the feeling that it was always playing at 7 am, right after waking up. My right hand was spastic after the concert.

But these coping mechanisms didn’t always work. I stubbornly insisted on combining emotional expression with the perfectionism of technique. This left me satisfied with only 70% of my performances. I didn’t like 15% of them. The rest I canceled.

Sometimes I fell into depression. I even tried to escape the music altogether. This took place over two long periods, each lasting seven years. The goal was to be able to focus on my mental health.

“Living with the musician’s dystonia,” as neurologist Alexandre Kaup notes, involves “a mixture of frustration, pain, shame and struggle” that often results in a shortened career.

But this illness could not destroy a passion that is as essential to me as air or food. As much as I found ways to trick my brain, I adapted to the changing circumstances I faced.

One of the many surgeries I underwent rendered my right hand totally useless. So I focused on the repertoire for the left hand only—until I lost use of that hand as well, about 20 years ago.

But I couldn’t give up. So how do you win a battle after appearing to have lost the war? I found a way: turning my attention to conducting, putting together my own orchestra and encouraging the younger generation.

It is in this spirit that I return to Carnegie Hall, in the city that has been my home for many years. I played there for the first time 60 years ago. And it was at Carnegie that I gave one of my most memorable performances: Bach’s First Book of the Well-Tempered Clavier, in a comeback concert in 1978, after the first of the long interruptions of my career.

I am sharing my story in the hope that it can inspire others struggling with dystonia and similar challenges. I myself found inspiration in my friendship with the late Leon Fleisher—in my opinion the greatest American pianist who ever lived. His bravery in dealing with focal dystonia has become legendary.

We met in 1958. Over the years, we’ve tried to help each other by exchanging ideas on practical fingering techniques and strategies to combat the problem.

Along with its physical cost, dystonia can affect mental health. Artists in particular are susceptible because of their perfectionism and the anxiety that comes with a life dedicated to professional performance.

The work being done internationally by experts such as Dévora Kestel, Director of Mental Health and Substance Abuse at the WHO (World Health Organization), offers a beacon of hope for improving our understanding of this aspect of focal dystonia.

In the long term, I am convinced that doctors and scientists will find more lasting solutions for focal dystonia. Even at 82, I remain young in spirit: my own career and struggles have taught me to expect the unexpected.

For example, I could never have predicted that Ubiratan Bizarro Costa, a brilliant industrial designer, would invent a pair of bionic gloves for me.

Now I can play some pieces again after so many years thanks to this palliative — for me, miraculous — solution.

Even when my hands were completely gone, the music always remained in my heart. And I will continue to keep you alive as long as I can.

Follow the Mental Health blog on twitteron Instagram and Facebook.