Mentally preparing for the day I can’t play piano because of FSHD
In the past six months, FSHD has destroyed the muscles in my arms and hands
Written by |
My regular readers know that I love to play music. I’ve been performing nearly my entire life.
Music began for me when I was 5 years old. My dad taught my brother, Tim, and me to play guitar and banjo. These were the right instruments for Tim, who is an incredibly talented musician who also plays an extensive list of brass and woodwind instruments. As a premier instrument repairman, he must be able to play an instrument he’s repaired to ensure that it’s working properly.
Guitar and banjo weren’t a good fit for me. When I was 8, I switched to piano. As a Christian, I truly believe that this was part of God’s plan for my life. Today, with the progression of my facioscapulohumeral muscular dystrophy (FSHD), I could never hold my left arm up to finger the strings of a guitar for any length of time. The piano keyboard is still something I can get my hands on.
After a few years of piano lessons, I took a year of accordion lessons when I was 12. The next year, I began playing with a Polish polka band. The rest of the guys in the group were in their 20s and 30s.
I moved from the polka band to a rock group after a couple of years and played with them until I graduated from high school and went to college. Again, the rest of the group were adults.
I took a year off from performing to concentrate on getting through my freshman year at Carnegie Mellon University (CMU) in Pittsburgh. After a third semester at CMU, I realized I didn’t want to be an engineer.
I thought I wanted to be a special education teacher, so I transferred to California State College (now called PennWest California), a Pennsylvania state school with an excellent reputation for their special education program.
While it was a good school, the academic challenges didn’t compare to CMU. With a little more time on my hands, and in need of spending money, I began playing bass guitar with the polka band my brothers were playing in.
During my senior year, I left the polka band and joined a pop and disco group. Two years later, I was offered a teaching position in rural Somerset County. After taking the job and moving to Shanksville, I played with several variety and wedding bands until a head-on collision with a drunk driver left me blind and ended that chapter of my life.
After the accident, part of my rehabilitation program was playing piano. I quickly realized I could still play without seeing the keys and was able to play many of the songs I’d learned over the years.
After a year of rehabilitation, I began playing regularly at my church again, as well as at a few area nursing homes. I enjoyed performing as a volunteer for the next three decades.
When my wife, Wendy, and I moved to Pittsburgh to be closer to our children and grandchildren, I began playing at our new church and became a regular at a number of local senior care facilities.
Playing with ‘someone else’s hands’
It’s taken a lot of effort for me to continue performing. Last year, I stopped bringing my accordion along. I just couldn’t get my right hand positioned to play it anymore. I also did everything I could to lighten my music rig.
Over the past six months, my FSHD has destroyed the muscles in my arms and hands. When I move my arms up and down the keyboard, my hands frequently land on the wrong spot. My forearms are always in tension, and my fingers are painful and stiff and don’t seem to be under my control anymore. I think the right notes, but my crazy fingers seem to play whatever they want.
I’m pretty good at covering up mistakes. For a professional musician, that’s an essential skill. That said, it’s getting to the point that I can’t get my fingers to cooperate as I try to make the notes sound like “I meant to play that.”
The activities folks tell me that my playing sounds fine. My fans still tell me how much they enjoy the music as I’m rolling toward the exit, but they’re a very forgiving audience.
In a matter of months, I’ve gone from professional-level playing to “Whose arms and hands are these anyway?” I feel unwarranted shame for the way I’m playing, even though I’m giving it all I’ve got.
I’ve always told people that I would continue playing until I can’t. That day may be coming soon, so I’m preparing myself for when it arrives. Even so, it’s going to be a tough bridge to cross. With help from my family and friends, I’ll cross over to the next adventure, whatever that might be.
Note: Muscular Dystrophy News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Muscular Dystrophy News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to muscular dystrophy.
Leave a comment
Fill in the required fields to post. Your email address will not be published.