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Dystonia Awareness
Dystonia is not a Country you have never heard of frequently. Dystonia is something manageable once you learn about it so to increase Dystonia Awareness we are writing about it here on Guitardoor.com as Dystonia is something that affects musicians in later life like myself.
Dystonia is a Monster that consumes a person’s lifestyle. It is a Neurological disorder somewhat in the same family as Parkinson’s disease and Multiple Sclerosis but much less known.
It also manifests differently in each individual. Some it affects the head and neck, others their hands, and in many cases such as mine, it affects every muscle in the body. This particular type is “Generalized Dystonia”.
This musical performance is presented with a backstory. It’s not just “I played a couple of songs at a gig.” It’s a visual document of a Battle on the stage, that I personally only know all the facts. Until Now. I’m going to share this story as a way to understand not only my plight but the other intricate things that can happen with a life with Dystonia.
My recently deceased friend Bart Wiseman (1975-2021) and I were talking one day about my health and finances and I was very honest. I am disabled on a fixed income. I had some unexpected expenses looming such as Dr.’s appointments and just survival.
In a world where musicians put their souls into making records and financing the projects themselves, they too often find no one buys music from many artists that aren’t the big names. Due to that and other circumstances I had been gradually selling off all my guitars and amps. As you are reading this I don’t own a guitar of my own, I’ve borrowed one from Bart and I bless him for it.
Bart took it upon himself to quickly organize a benefit for me. I have spent most of my 33-year career doing benefit work for others and he said “Well it’s about time you get your Karma back.”
I arrived at the show with Cynthia Davis, who has been an incredible friend for a long time. Before we exited the car she asked how I was feeling and my only truthful response was “Quite Frankly I’m terrified.” I had not been in public much after the successful work on the “Calvert/Fleming Project” album and the last show I had played was in North Carolina with Maya Calvert at The Little Creek Vineyard. I’m guessing somewhere around a year had passed and I had declined in health and developed a slight return of Agoraphobia.
There was about a week’s notice so the show’s attendance was sparse, but the people who were there included some friends I had not seen in years. People brought Guitars of their own to be auctioned off and it was very touching.
I sat and watched my friends play and there were a few great acts, all former bandmates and musician friends. It was looming that I needed to force myself to perform. I didn’t want to seem ungrateful, I didn’t want to allow the disorder and side effects of my medications and the side effects of my fear to be an excuse.
One thing you should know is the musicians in Southern Ohio are Musical Ninjas. We collectively have the ability to grab this person and that person, not knowing what we are going to play and just make it work. Such was the case with this video.
We refer to the impromptu Jams as “going in the cold”. Bart had played with one of his groups so his guitars and amp were there already. I went to the stage and he handed me the now-famous “Red Tele” and he got behind the drum kit and John Kahn was there with his Bass and we have a band. I’ve never touched this guitar before, we have no setlist and I am taking a seat for an important reason. This video is a play-by-play analysis of performing during a Dystonia attack.
I used to stand and my head would be forced down and I would be able to raise it up enough to deliver the vocal line and it would involuntarily go back down.For a few years playing with Black Cat Mass or being in the band “Good N’ Stout” as an honorary member I was rarely on the mic, just playing guitar and the public would think ..head down..” He’s just in the zone”. Well, now I couldn’t hold my head up Ha Ha Ha!
I had learned to sit down, lock the heel of my boot in the bottom rail of the chair, and at times place one leg over the other in case I jerked suddenly I would not fall off the seat. The same approach happened that day. “Just my Imagination” was the last song of the short set.
After the first verse and chorus, you can see and hear the vocal volume come and go. My head was wanting to lean away from the microphone. I’m in a Dystonic state now. I lost control of my right hand for a second and that means the guitar pick got dropped and I had to revert to my Banjo training in the Frailing or “Claw Hammer” playing with my hand until I can find the right moment to reach in my back pocket for a new pick.
I am also not used to the ease of the guitar’s volume knob ability to roll off, and as I play with a heavy hand I knocked the volume down once and a second time I hit it and it was all the way to zero. You can see me shaking my head as I have to correct it and recover and press forward to finish the song.
It is a study in maintaining your composure physically and mentally under adversity that only you know about. I have always gone with the ethic “The show must go on”.
I’m pleased it was filmed as not only a lesson in determination, against all adversity I found I was able to turn in a great performance that shocked me and play with these incredible players. We with Dystonia know the private Hell we deal with and if you can go on and do what’s laid before you in the public eye it’s a good feeling after it’s done. While it is happening you have 3 thousand thoughts that have nothing to do with the necessary thoughts of not forgetting the words, and not just stopping playing no matter how uncomfortable you are in the moment.
Musicians Like Victor Wooten have come forward and announced they have this terrible disorder. I’ve tried to contact him to no avail so Victor I wish you the best. Another amazing guitarist is Billy McGlauphlin who had already had a major career when he was struck down. His solution was ok. I can’t play as I did before as one hand was more trouble than the other so he relearned the guitar by switching it upside down and pushing through. He is still functioning in the music world today.
I am also including a video clip of an attack I had at home. This period of time was full of weekly attacks and I wanted them filmed to show Neurologists. There were many factors involved here. One was a medication that was supposed to help, that in time turned on me. The Seizure looking behavior was partly due to the medication I no longer take, and partly due to stress and caffeine.
I’ve had doctors argue with me that it did not look like Dystonia. I assure you the hallmark signs are all there and have confirmed with other Dr,’s it is Dystonic behavior, with a few other things involved. Dr.’s will often try to tell a patient what they learned in a book, while the patient does their own research and more importantly they know their body and LIVE with it.
The video is meant to show submission to it , in stark contrast to My ability to control it in the public. Fortunately, I’ve not had any events like this in a few years because not only a med change but when I feel it coming on I grab it by the horns and have to mentally say NO. The power of the mind is endless in certain aspects. I consider myself lucky as we move along to another young man. I am grateful to call my friend, Mr. Jason Dunn.
Jason Dunn Dystonia Awareness CAMPAIGNER
Dystonia is not a Musician’s only club. It walks into all manner of people’s lives. Jason suffers the worst case of this most have ever seen. He also has the best attitude and sense of humor about it. As our mutual friend Mike Delise has said “He’s never once heard Jason complain.” Ladies and Gentlemen I wish I had the capability he possesses.
I have entered into a chapter on chronic pain. I complain a lot. In all the work we have put into the articles here I have physically suffered while spending hours working anyway. Jason just is Superman and when I get weary I remind myself of him.
We became friends on Facebook and a few years back I went to his home in Michigan for his get-together. I also played at the party. I met over a dozen people with varying degrees of Dystonia. Jason is to all of us our hero. I’ve met many Rock Stars but he’s the biggest one I know and I had him autograph my old white Tele. Jason is in the first half of this National Geographic video, well worth your time to learn his personal story. He will make you rethink your bad day. It happens to me all the time.
Cynthia Davis took on the project quite a while back to document my fight with Dystonia.I Have viewed My Life and career as Chapters in a book. One might say acts in a play. I’ve had the diagnosis and treatment for Dystonia for 18 years now but I’ve had it longer than that undiagnosed and was quite a mystery. It has taken my music away for periods of time and I have to battle my way back. I’m sitting currently in act 3 of the battle. Covid has not helped matters but I am Booked in North Carolina in April of 2022 once again at Little Creek Vineyard to Tread the Boards again.
This is one thing to Look forward to and the second will be the time of releasing Cynthia’s Documentary “Witness The Rising”. It’s been a labor of love and friendship and she has captured a large portion of time and created a well-told story. A Story of achievements and realities and limitations. It’s been in my view a gift invaluable to me that you should soon be able to see as well. Her never-ending support as a friend and creative mind can never be repaid.
While I’ve been progressing as a musical journalist, she’s become an incredible Artist. She can Paint beautifully and also has the knack with a camera to capture the perfect moment. The cover of “Shotgun Pixie”, the musical collaboration of Maya Calvert and myself is her work and she is THEE Renaissance Woman. A gift to humankind.
Cynthia Davis
Dystonia is a complex issue that will challenge you beyond the point of understanding at times. It is currently incurable but it can be largely treated. It’s a hard fight, but I’m determined to try and educate those who don’t have it or are new to it in their life. For those of us who live with it, I want to ask you when you feel defeated to get up and fight some more. It’s what we must do. . We must be warriors at all times. We must lend a hand or heart to those newly diagnosed and be there for them. During the dark times, we can be the candle to help see the way until the new dawn, where we begin the fight again.
