Today is always such a profound day for me, one that requires moments of silence, a long walk, lots of reflection. My heart still breaks for those who were affected on 9/11. I’ll never forget how the people of this country rallied. How folks with different beliefs found common ground. I find hope in that memory.
If you’ll allow me, I’d like to share a different 9/11 story. It’s certainly not as important as those of the victims and heroes of that day, but it matters to me. And I want to share because I recently heard about the difficulties of a friend, and I was reminded of how bleak and lonely rock bottom can be.
Some of you might know or recall my banjo story from previous posts, but there are new developments. 9/11 is the day I discovered I had focal dystonia and would never play the banjo again. In the months that followed, I visited specialists around the world in a desperate plea to find a way to make my fingers work. About a year later, I finally left my band in Nashville to go pick up the pieces of my broken dream. Before I share my update, here is the blog post I wrote several years ago:
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A note to anyone struggling right now…
Like so many of you, my entire world changed the day the towers fell. Not in the way you might think though. I used to play the banjo professionally, but a career-ending hand disorder called focal dystonia sent me scrambling to pick up the pieces. It all started on 9/11/2001.
My struggle pales in comparison to those who lost loved ones, and today is certainly about them and the people who died and those brave souls who stepped up to assist in so many beautiful ways.But I posted the below note in a Facebook group of musicians who suffer from FD and thought that I might share with you too. We are all facing our own focal dystonias, especially right now.
Here goes…
9/11 was the day I first experienced focal dystonia symptoms. I had just moved to Nashville with a band of great friends, and we were heading into the studio to record our first big album. I drank my coffee, warmed up on the banjo, then turned on the news. The first tower had been hit. Banjo in hand, I watched in utter disbelief. We considered canceling our studio session, but our producer urged us to come in. It was the opening day of a week-long session.
I can’t remember the exact moment, but during the recording of our first song that day (“Ramblin’ Fever”), I remember thinking that my index finger wasn’t doing what I was telling it to do. I pretty quickly told the guys that something was going on, and we chalked it up to studio jitters.
That night, I read about focal dystonia on Google and knew I had it. It took a lot of money and doctors (of all varieties) before I was finally diagnosed at Johns Hopkins a year later. Though some lucky souls have found their way around the disorder, there is no cure. Shortly after accepting my fate, I left the band and Nashville with a sad heart and a broken spirit.
They say something stressful triggers FD. I’ll always wonder if seeing the towers fall on television was my moment.I’ve had bursts since when I’ve decided to find a way through it. Switched picking hands, Botox, worked with some of the best doctors in the field, read every book I could find, etc. For whatever reason, I still haven’t broken through. Maybe one day. I don’t play much anymore, as my symptoms are as strong as ever.
But… focal dystonia sure did give me a lot of good.
I wouldn’t have found my wife had I not left Nashville, and we wouldn’t have adopted our son. I can’t even FATHOM a world where those two aren’t by my side.
I wouldn’t have found my calling either, which is writing novels. After a few years of a serious decline emotionally, physically, and spiritually, I finally came to peace with my diagnosis. I dug out of my hole and found my muse in writing. No, I can’t play the banjo as fast I used to, and I wish like all hell that I could. I still tear up thinking about the thousands of hours I put into my instrument, but I’m grateful for my broken road and what ultimately led me to my place now.To all of you with FD, hell, for anyone who is struggling right now, I have an inkling of what you’re going through. Even if you can’t overcome whatever your focal dystonia is (I hope you can), there is abundant and beautiful light ahead.
For the record, I’m 41, and I’m not giving up. One day my fingers will fly again. In the meantime, I’m having a ball playing electric guitar and teaching my son his first chords. (If you’re interested, click here for the link to the blog on my website.)
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Here we are twenty-three years later. I can’t believe I’m saying it, but my fingers are working. With the encouragement of my wife and the expertise of a woman in Spain named Ruth Chiles, who has become my life guide, I have found my way back. Somewhere along the way, I lost the fun of playing music. It became my identity, the way I defined myself.
With years of deep work and the use of brainspotting, a highly focused meditative technique, I’ve shed a lot of my ego and come to love me just as I am. I no longer need to prove myself. I’ve settled my nervous system and often feel utterly satisfied in the here and now. I am also tapping deeper than ever before into my creative flow, regarding both writing and music.
A few months ago, I sat down with my banjo on the porch of our place on Peaks Island here in Maine and played absolutely dystonia-free. That was the first time in all those years. There was no part of me trying to prove myself, no part of me dwelling on what could have been, just little ol’ me plucking the five-string with the joy of the kid who first picked it up as a teenager. (Is this when someone chimes in with a banjo joke, something about my poor neighbors?) Turns out I never had a problem with my fingers; it was all in my head and heart.
Don’t get me wrong, I’m still a long way from perfect, a work-in-progress if there ever was one (especially when I’m under a seemingly impossible deadline), but I’m taking strides toward realizing my potential. Focal dystonia is the best thing that ever happened to me, as it pushed me to go find the healing I needed. Though that twenty-something kid with his heart ripped out didn’t know it at the time, I was handed an invitation to grow. After a proper dark night of the soul, I accepted this invitation, and the man I am today is steeped in gratitude and full of faith for what’s to come and full of love for my family, friends, myself, and for you too.
Maybe this story can give hope to someone out there who has it tough right now. To you, who is in the dark, who doesn’t see a way out, I hear you. And I send you love. It’s going to be all right.
Here is a video from our band’s reunion show a few years back. No, I wasn’t on stage, but I was front row with my wife and son, a giant smile stretched across my face. The song they’re playing is one I wrote with the mandolin player, Scott Simontacchi.
Since I’m a novelist, I have to throw in a little drama. As you’ll see on the link, we had to bill the reunion show as The No Dough Travelers, formerly known as The Biscuit Boys. That same year I was diagnosed with FD, Dwight Yoakam sued us and took our name. And now we call him Tighty Dwighty.
Sending you love from me and the rest of The Biscuit Boys (Drew, Charlie, Steven, and Scott), who are still my brothers and exactly where they should be at this moment too.Where were you on 9/11?