Photo by William Alatriste, with permission. Tom Cabrera is at the back, on the drums.

The Long and Winding Road

A Jazz Drummer’s Journey Through the Nightmare of Focal Dystonia

By Tom Cabrera

Tom Cabrera is a jazz drummer from Long Island and a good friend. This is his story in his own words, a story I’m privileged to share with you. — George Colombo

The man sitting across from me was Dr. Keith Raskin, one of the most famous hand surgeons in New York and a Clinical Associate Professor of Orthopaedic Surgery at New York University’s School of Medicine. And if someone had shocked me with a taser, it wouldn’t have been more stunning than what he was about to say.

“Tom, I know exactly what you have.”

It was 2010 and I’d spent the previous three and a half years visiting a seemingly endless array of medical professionals and therapists but none of them knew quite what to make of my condition. Each one would listen attentively — some more attentively than others — but none of them was ever able to provide a definitive diagnosis. The problem progressed slowly but relentlessly and by the time I saw Dr. Raskin, my decades long career as a professional jazz drummer seemed to have come to a halt.

I’d been playing drums since grammar school but my professional career began in earnest when I landed a weekend gig as the house drummer at the legendary Softwinds Jazz Club in Campbell Hall, NY in 1987. A move from New York to Florida a few years later allowed me to jettison my day job and devote all of my time and attention to a full-time musical career.

By 2006, my personal life and my professional life were both unfolding in gratifying if unexpected ways. My first wife and I had jointly acknowledged that it was time to end our 26 year long marriage and we’d done so amicably. In spite of my ineptitude at dating, I soon met and married a woman who became not only my life partner but also a bandmate! Julie Lyon was an effervescent personality and a gifted singer. Luckily, she was understanding when I didn’t respond to the follow-up emails she sent right after we met. (When she asked me why I didn’t answer, she was both patient and amused as I explained that I didn’t know how to use email!) The sole cloud on the horizon was news from New York that my father was exhibiting signs of dementia.

Professionally, the Orlando area’s thriving tourist and hospitality industry provided enough performing opportunities to keep me busy but, for a variety of reasons, I’d recently relented to the entreaties of a friend who owned a drum store and wanted me to start giving drum lessons. Determined to provide a good example for my students, I added a healthy dose of rudiments into my already ambitious practice schedule.

Or maybe it wasn’t such a healthy dose. I’d always spent a lot of time practicing but now my practice extended to something like six hours a day. It was the kind of rigorous approach that I’d always taken with my music but lately I seemed to be enjoying it less. The progress I wanted to make was elusive and practice sometimes felt pointless. Then, one day I noticed that my right hand was experiencing a kind of tightness. I found myself involuntarily squeezing my stick a little more than I needed to, a little more than I wanted to.

When the tightness didn’t go away after a few days, I kept telling myself to ignore it. I tried to make myself relax but that proved impossible. I couldn’t really describe what the tightness felt like so I didn’t mention it to anyone but over the next few weeks it gradually kept getting worse. It was becoming distinctly difficult to comfortably hold a drumstick in my right hand.

And as the tightness increased so did my anxiety about what was going on. After about a month, I couldn’t ignore it or rationalize it any more so I mentioned it to Julie and to Larry Hutter, my best friend and the bass player on most of my gigs. They both encouraged me to seek out medical help and I knew it was time to do so. So, as my problem continued to gradually but steadily get worse, I began a journey to find out exactly what was wrong with me. I had no idea that three years later I’d be no closer to the truth and my career as a drummer would be all but over.

Everyone’s assumption — including mine — was that my problem was some kind of repetitive use injury so an orthopedist who specialized in sports injuries seemed like a reasonable choice. My first stop was a doctor whose initial impression was that I’d suffered some kind of nerve damage. (In fairness to her — and to all the other doctors and therapists I saw when I lived in Florida — my symptoms never manifested themselves when I was in a doctor’s office so they never saw for themselves what was going on with my hand. This was frustrating for everyone.) An intensely uncomfortable nerve conduction test showed no underlying damage to the nerves. I saw her again a couple of times but she seemed to lose interest when her diagnosis didn’t pan out.

I continued to get worse. Whenever I picked up a drumstick, my hand seemed to rebel against my intention. I was still playing regularly but the accommodations I needed to make became more intrusive and more obvious. People in the audience didn’t know that anything was wrong because they’d never seen me before and didn’t have any point of comparison. My bandmates, though, could see the contortions it took for me to play — I looked like Joe Cocker at Woodstock — and the toll it was taking on me to get through each gig.

A play-by-play chronicle of my medical odyssey wouldn’t add much to this narrative but it was grueling and expensive. The box score at the end of three years showed:

Three massage therapists

Three orthopedists

Two physical therapists

A course of Hoshino therapy, a specialized type of massage therapy

Acupuncture

A chiropractor

Not only were no answers forthcoming but my symptoms had radiated out to encompass my entire hand and they now began to manifest in non-drumming activities like shaving. Most frustrating of all was the fact that I couldn’t get a diagnosis. Every practitioner was happy to ply his or her specialty regardless of how effectively it addressed my problem. One afternoon, in the middle of a session with the chiropractor, I suddenly asked him, “What are you treating me for?” He thought about it for a minute and guessed, “Neck pain?” I got dressed and left.

Meanwhile, Julie and I were both Googling like crazy to try to identify what was going on. One day, we came across information about something called “focal dystonia” that matched my symptoms pretty closely but, after reading about it, we rejected the idea out of hand. It was described as “an incurable neurological condition” and “incurable” just wasn’t something we were prepared to accept. Still, the succession of disappointments was taking its toll, both emotionally and financially.

Behind the drum set, controlling my right hand became such a tenuous thing that I started switching to a left-hand style. If Billy Cobham could do it, I could, too. At first, I did this on an “as needed” basis but it soon became my standard playing style. This newly adopted style not only allowed me to get through gigs but it also took the focus of my practice away from my problem and back to the music. But by the summer of 2009, every gig felt like an impending train wreck and I wasn’t sure how much longer I’d be able to keep it up.

And then fate intervened.

In October, I got a call from my mother, saying that she needed help with my father. A quickly organized trip to New York confirmed our fears. My father’s dementia had progressed to the point where my mother was no longer able to handle his care by herself. Julie and I didn’t have to think too much about it. We arrived in Westbury, Long Island in December and moved into the house I grew up in. But as we were unpacking, I made a decision: My drum kit went directly into a closet. Rather than continuing to wage a war with my right hand, I decided it was time to suspend my career as a jazz drummer, time to give it all a rest.

But Julie was not ready to let go yet, playfully explaining, “I just don’t want to have to find another drummer!” She had quietly started looking around for a doctor in New York and soon discovered Keith Raskin. We traveled to his office in Manhattan where he listened to my story attentively and examined my hand thoroughly. And when he was done, he knew what was wrong.

“Have you ever heard of focal dystonia?” he asked. Julie and I both remembered what we’d read on the Internet months before and our faces must have betrayed our reaction. Raskin sensed what we were thinking and reassured us immediately. “Don’t despair. There are ways to deal with this.” He recommended that I seek treatment from a neurologist who had experience with the condition. It wasn’t great news but it was a definitive diagnosis, something I didn’t have before.

As soon as we got home, I did two things: One was to locate a neurologist and the other was to identify communities on the Internet for musicians with dystonia. I wouldn’t have guessed it at the time but engaging with the online communities would ultimately prove to be more significant for me than finding the neurologist.

The neurologist I found specialized in movement disorder and had experience treating patients with dystonia. She prescribed Artane, a drug that’s primarily used to treat stiffness, tremors, spasms, and the poor muscle control associated with Parkinson’s disease. She said that if the drug worked for me, I could expect marginal improvements and that’s exactly what I got. The downside, though, is that the drug plunged me into a deep depression. I’m not a depressive guy by nature — even years of frustration with a worsening condition and no insight from almost a dozen practitioners hadn’t brought me this low. I quit taking the drug.

My neurologist weighed Botox treatments as an alternative approach but warned that I was not a good candidate. Botox was sometimes successful in patients whose issues were confined to a relatively compact area. With my dystonia now manifesting itself over my entire right arm, it didn’t seem like a promising option. Even though I now had a clear diagnosis, a viable treatment plan didn’t seem to be any more forthcoming than before. But there’s an old adage that says, “When a student is ready, the teacher will appear.” Apparently, I was ready.

The online communities for musicians with focal dystonia did not provide the kind of supportive environment I was hoping to find but they certainly offered an enormous amount of information. Stories about every conceivable treatment option were available and I was exposed to all sorts of ideas. I learned that dystonia was typically found in high level players, often classical musicians who were educated at conservatories. They usually practiced rigorously and tended to be rigid in their approach to playing. Often, their symptoms appeared following a change in technique. I personally didn’t exhibit all of those characteristics but I certainly had more than one.

Eventually, though, a name popped up occasionally that caught my attention. Joaquin Fabra seemed to be a lightning rod for controversy. A classical trombonist who lived in Madrid, Fabra developed dystonic symptoms three decades ago and, like me, was having no success with conventional treatment. As a musician, he saw flaws in the medical community’s understanding of the condition and his response was to craft his own approach to the problem. I was intrigued and started to work my way through all the videos by or about him that I could find on YouTube.

Fabra’s basic premise was that task-specific focal dystonia in musicians was not a neurological condition at all. Instead he believed it was an emotionally based behavioral response to stresses that musicians encountered in their work. Most important was that he believed those responses could be unlearned over time. I needed to talk to this guy.

I emailed him and, at his request, sent along some video of what my hand looked like holding a drumstick and doing some cymbal work. Our first session (and every subsequent session but one) took place over Skype. Fabra set the tone right from the beginning: “Tom, I’m not a doctor and you’re not a sick person.”

In another life, Fabra could have been a Jesuit. He was unassuming but quietly confident. He didn’t pontificate and had no interest in telling me what I should or shouldn’t do. He was not going to be a savior who fixes me. At a very fundamental level, I was going to have to figure things out for myself. “You’ll learn to find the feeling,” he said. “And then when you do, you can begin to remember it.” Our conversations were seldom about music. When I nudged the conversation towards playing and technique, he deflected. “This isn’t about music,” he told me. “This is about life.”

The theme for our first session was acceptance. The thing that I really needed to learn, he told me, was going to be hard to digest: Dystonic Syndrome wasn’t something that happened to me. It was something that I was doing. It was a habit, a deeply ingrained behavior, and something that I could change. “You have to understand that and believe it,” he explained. “If you really believe that you have a neurological disorder, this approach isn’t going to work.”

As we were getting ready to conclude that first session, Fabra asked if I was feeling alright. I said that I was and he instructed me to find a pen. When I found one, he told me to move the pen through the air, mimicking the movement of a drummer playing a ride cymbal. I was able to do it effortlessly. The tightness wasn’t there and my hand had its normal contour. It didn’t curl up.

“What I want you to do between now and the next time we talk is to wait until you’re feeling okay and then pick the pen up and move it around. Just move it until you don’t feel okay and then put it down. Whatever happens, don’t worry about it. Just observe it.”

“How often do you want me to do this?” I asked.

“Enough times. Just enough.” And then he was gone. I wasn’t quite sure what had happened but I noticed something that had been missing from my psyche for quite a while. For the first time in four years I felt reassured. And maybe even hopeful.

My father died in May. His illness had take a toll on my mother and it became clear that she was going to need Julie and me to look after her. We weren’t going to be returning to Florida. New York would be our permanent home.

My sessions with Fabra continued. One day, he explained that it was common among musicians with dystonia to focus on mistakes. I thought back to my days of playing with Larry in Florida. After every gig, we’d do a “post mortem” and invariably focused on things that went wrong. Fabra observed that “when you focus on mistakes, you find yourself forgetting what you were actually trying to do. I’ve found that tension disappears when people enjoy what they do.”

Even though I was unable to swing behind a drum set as I had in the past, the musician inside of me yearned for an outlet. One day, I impulsively pulled out a hand drum that I’d bought back in the 1990s. Back then, my day job was working at Tower Records in Nanuet, NY. I found the hand drum in a music store and bought it for no particular reason except for the fact that it fit in my car! One of my coworkers, a talented and imaginative guitarist named Jack DeSalvo discovered me playing with it on my lunch hour one day and decided to join me. Pretty soon, we had a regular lunchtime routine that consisted of pizza followed by forty five minutes of improv.

Now, my old hand drum became a life preserver. It allowed me to start playing music again, not the jazz standards that I’d been playing for the past couple of decades but the kind of improvisational music that Jack and I played back in the day. Jack and I had remained close during my Florida years so it was easy to reconnect and pick up where we left off in the Tower Records parking lot. Another Tower Records alum, Matt Lavelle, joined us. Matt was a trumpet player whose repertoire began with swing but kept right on going into more spiritual and esoteric stylings. I assembled a brand new drum kit based on hand percussion instruments and the three of us started to play regularly, exploring musical avenues that were thoroughly improvisational, a far cry from the jazz standards that had been my forte. I embraced music from an entirely different perspective with a new and different set of tools.

Tellingly, this new music complemented and reflected my work with Fabra perfectly. He once explained, “The cause of dystonia is almost always invisible but, at a certain level, your body is telling you a truth you can’t see.”

Part of my truth was that I’d become locked into a mental rigidity that permeated every aspect of my playing. I had dogmatic opinions on everything from what kind of brushes were acceptable (wire ones, of course) to what kind of grip was best (traditional grip, without a doubt). My practice sessions had been focused on quantitative achievements and sometimes took on the aspect of a “life or death” struggle as I pushed myself to reach a certain tempo. All of that was gone now and the only thing what was left was the music.

Fabra encouraged me to design my own recovery and emphasized that any recovery would emanate from me as a person, not me as a musician. One afternoon, a thought occurred to me that would have been unthinkable a couple of years before: “If I’m never able to play the drums again, things will still be okay.” As I let that idea envelop me, I could literally feel the grip of the dystonia melting away. It didn’t disappear altogether but its power was evaporating.

Jack and I went into the studio in early 2012 to record and album called Libra Moon. Our collaboration with Matt morphed into an improvisational trio called Sumari. We began gigging in the city and were so pleased with the results that we headed back into the recording studio and produced an eponymous album later that year.

While my foray into improvisational hand drumming was satisfying — even joyful — I also started getting curious about what would happen if I got back behind my old Gretsch set again. My first attempts were a mixed bag but I followed the basic formula that Fabra had laid out a year before in my experiment with the pen. I picked up my drumsticks when I felt good and put them down when I didn’t.

This began what Julie refers to as the “roller coaster period,” a phrase that described both my progress and my frame of mind. At first, I’d have a good day, then a bad day, but over time I began to have more and more good days between the bad days. My recovery was a gradual process as I “unlearned” the dystonic behaviors I had adopted. Eventually, my “good days” and my “bad days” simply became “days.” I no longer saw them as measures of my recovery as much as they were reflections of my attitude.

When I sat behind a standard drum kit, my playing had changed considerably — and not simply the changes I’d made to accommodate the dystonia. My rigidity was gone and there was nothing separating me from the music. As I played, I’d change grips on the fly — switching from left-handed to right-handed, from traditional grip to matched grip — without even thinking about it. Fabra’s wisdom had given me an entirely different conceptual framework for my drumming: “If it makes you feel good, then it’s good.” It was as simple as that. My friend and former bandmate Larry said that he’d never seen a musician transform himself so fundamentally, so completely.

Today, I consider myself “recovered.” When I use that term, I don’t mean that my symptoms have disappeared entirely. I exhibit symptoms from time to time but now those symptoms never interfere with my life nor do they interfere with my playing. In fact, I don’t consider the symptoms that remain as dystonia, per se. Instead, I think of them the residue of dystonia. When I’m uncomfortable, I recall Fabra’s emphasis on acceptance. And, besides, who said I always need to be comfortable? These days, I don’t resist dystonia and I don’t fight it. I accept it, observe it, and then get on with doing what I love to do.

In fact, the best postscript to my story is something I heard Julie mention to a friend of ours. “Tom never gave up on the music,” she said. “And eventually the music won.”

The first 55 seconds of this video show’s Tom Cabrera suffering from Focal Dystonia. Midway through, you can see him getting his chops back.

☞ This is Tom Cabrera’s first story for Midcentury Modern. Read more about him here. Drum schematic from Wikimedia.