Living With Focal Hand Dystonia: The 5 Stages of Grief and Loss
Living with My Focal Hand Dystonia: 5 Stages of Grief and Loss
The legendary Elisabeth Kübler-Ross became famous for developing the five stages grief model, after she published her ground-breaking book On Death and Dying in 1969.
Kubler-Ross originally developed this model to describe people facing terminal illness; however over time this soon became a model for thinking about how we navigate through grief in general.
It affected me out of the blue one morning in 2010 when I lost my ability to play the guitar. a skill that I depended on in to make a living in my professional life for many years. It was devastating.
That's when I personally was taken on my own difficult challenges through the 5 Stages of Grief and Loss.
Symptoms of Focal Hand Dystonia
There are the 4 Main symptoms of Focal Hand Dystonia:
- It can cause subtle loss of control while playing fast passages
- It causes a lack of precision
- It can cause fingers “sticking” to keys
- It can cause fingers to involuntarily curl in or fly out on either your fretting or picking hand
What makes this silent dream killer so insidious is that it is totally painless.
And it is only present in the context of specific tasks. What do I mean by this?
For example, my fingers do not “fly out” when I am playing pool or handling manual tools, but those same fingers will “fly out” when I am playing guitar.
Living with my focal hand dystonia presents ongoing challenges that continues even to this day.
However, it wasn't always this way.
Then One Day Life Came Crashing Down...
One morning in January 2010 I woke up and noticed I couldn’t play the strings the way I used to. Overnight, my left ring finger and pinky could no longer bend, and both fingers would “fly out” uncontrollably. WTF!
That’s when during that first catastrophic month I experienced the 5 stages of grief and loss: denial, anger, bargaining, depression, and acceptance.
Denial and Anger: Focal Hand Dystonia
Well, actually the first two. Denial and anger.
Over that first horrible month, my mysterious malady continued on a daily basis without any sight of improvement. Forget about even not playing the strings like I used to, I couldn’t even play the most basic open chords on guitar!
First I was in utter denial. As a result of such denial, I soon became completely stunned. This led to me walking around for one week in a fog going about my business as if nothing was wrong.
By the second week, I woke up one morning and became totally enraged.
Feeling undeserving of my plight, I was engulfed in anger.
My anger toward the world sent me on an unrelenting dire quest to see as many different doctors and hand specialists over the following 9 months (imagine being angry for 9 months!).
They all performed a wide variety of x-rays and nerve tests. Surgery was ruled out, and none of the various tests ever yielded a conclusive diagnosis.
By July, I went to see a recommended acupuncturist for a total of 4 sessions. This didn’t help either.
The Aftermath of Focal Hand Dystonia: The Grim News
Then late 2010 after witnessing additional bizarre changes in my hand, I spent countless hours of exhaustive internet research. This would lead me on a path to find a controversial specialist at Columbian-Presbyterian Hospital in rare hand disorders. Desperate and searching for answers, I made the appointment.
Within 30 minutes upon my arrival after giving him my complete detailed history, this controversial doctor offered his diagnosis of my malady.
That day on September 15, 2010 I was told officially I had a rare neurological disease called focal hand dystonia.
Bargaining: Stage 3 of Focal Hand Dystonia
For a short two-week period of time after my diagnosis, I went through the bargaining phase. I blamed myself for my own malady, citing my arduous practice sessions from late 2009 as the cause for my disease.
Practice in recent years had been sporadic and intermittent for me.
When you have been playing for many years only minimum practice is necessary.
There were days I would hardly practice for months (other than performing with the band live) followed by short bursts of heavy 3 hour per day sessions.
Second Guessing Oneself: Why Focal Hand Dystonia?
Near the end of 2009, there was an unusual three month period where I was practicing lots of complex guitar melodic patterns, scales, and riffs with the metronome. Soon I was working these practice exercises up to break neck speeds, playing in tandem with You Tube videos by speed demons i.e. Paul Gilbert, Joe Satriani, Paco De Lucia, etc.at times reaching 184 rpm’s on the metronome.
Immediately I began questioning and blaming myself with “What if this” or “What If that”.
For instance, I would say “What if I didn’t subject myself to those rigorous speed practice sessions and exercises, could I have averted this horrible hand disorder?”
Depression: Stage 4 of Focal Hand Dystonia
By the beginning of October 2010, my world was rocked and steadily collapsing inward around me.
Quickly I became severely depressed over my hand disorder. Compare this to an athlete or a writer. How would such an athlete runner or writer feel if he or she could no longer have the facility to run without a limp or the ability to see the written page?
However, I was lucky. Due to unique opportunities created, not everything was gloom and doom.
To cope with my depression, fortunately I became involved in several projects which became necessary diversions. Several of these “diversions” were fortunate accidents by themselves.
Gospel Fest and Television
These were performances on the short-lived “Karaoke Battle USA” ABC-TV show in 2011, and singing and playing guitar for the “Don’t Give Up Gospel Choir” from Japan to raise funds to support the tragic tsunami victims of March 11, 2011.
Our group commanded an outstanding performance in front of a crowd of 20,000+ strong at Gospel Fest.
That was one electrifying concert at the Prudential Center under the direction of Danny Eason where we opened for legends Kirk Franklin and Donny McKlurkin.
Charitable Work and Activity
As I’ve always cherished helping others especially the ones most in need.
Soon I became involved by contributing my time and efforts to several philanthropic activities for the Red Cross and the Memorial-Sloan Kettering Cancer Center also provided great comfort and solace for me.
There were two radio interviews on WGBB with Lou Telano covering “Karaoke Battle USA” and the Japan choir that provided a necessary distraction.
A Passion That Never Dies
My depression eventually turned into apathy.
By 2012, Off the Hook had an old website hosted for several years on Network Solutions and I let it go. Whatever prior interest I maintained with band marketing and promotion slowly waned.
However, my overreaching passion for live music performance never died.
That’s the only reason why the band continued playing regularly despite my hand disorder, at least on our regular monthly club date. It;s the same passion which still gives me the motivation and perseverance to drive forward.
By this time the group took a long hiatus from performing special private events save a few.
Acceptance: Stage 5 of Focal Hand Dystonia
Facing my new reality, I continued to trudge forward playing every gig using only “2 to 3 fingers.” This exercise became extremely frustrating for me. In fact, at first it seemed to be an exercise in futility.
As a strictly-trained guitarist who played one finger per fret “by the book”, I was at first very resistant to accepting my new found condition or to changing my playing to unconventional fingerings.
Eventually however, in order to get through every performance I had to change the left-hand fingerings on practically all the songs we performed.
Overcompensating for my new limited status as a guitar player soon became the norm. Slowly I began to make adjustments while living with focal hand dystonia.
I had reached a point of acceptance.
Gigs started to get better and slowly were becoming fun again.
Through my process of learning to accept, open-mindedness, and self-discovery, in time I turned toward Eastern medicine. To this day I continue to be treated by the Hands of the Master.
Coming Full Circle!
In 2016, Kaju’s Off the Hook performed our annual Waldorf Astoria private black tie event for Young Audiences on the third week of November. Then on December 9, we performed a phenomenal show at Capitale NY in front of 1600+ frenzied guests and completely knocked it out of the park!
This was a complete breath of fresh air. I’d come full circle!
Fast forward to 2022.
To this day. I still struggle with focal hand dystonia, but I have able to adjust. And now with new ground-breaking treatments, there is hope on the horizon.
I go in for a new set of treatments on May 6th.
Let’s continue the conversation. I would love to invite you to share any comments below.
I hope you enjoyed and learned something from this abridged article on the 5 Stages of Grief and Loss.
If you want to read the complete article, check it out here.