When I was a kid, music from the likes of Led Zeppelin, Fleetwood Mac, and Jim Croce swirled around the house. The three were staples in my dad’s vast collection of vinyl records. Being from Wisconsin, he stored them in steel-wire milk crates that would leave a metallic odor on my hands for hours.
I was always drawn to records; how, in order to listen to them, you need to first remove the jacket and then the sleeve that protects the vinyl. It took effort, and my dad believed it was the best way to not only listen to music, but also experience it. He wanted me to feel those experiences even as my Becker symptoms silently crept ever closer. He knew I’d need passions to lean on once my muscle disease further complicated life.
My dad really enjoyed rock ‘n’ roll. His favorite musician was Alice Cooper. As an adult, I follow in his classic rock footsteps.
My dad often took me to live shows, the first being Alice Cooper on Halloween night when I was 12 or so. The loud music pounded straight into my heart, leaving me thrumming. My ears rang for hours after that show had ended. It was one of the first moments I realized my hunger to learn to play music, even if only for my own enjoyment.
Deep down, my dad knew there could come a day when Becker muscular dystrophy would monkey-wrench my physical ability to play instruments, yet he continually encouraged me.
I started by playing trumpet. My lungs remained unaffected by Becker so it was a good fit. Initially, I wanted to play drums, but the school band director didn’t need another drummer. With the trumpet, I may not have felt like a rock star strutting around in leather pants but I did learn how to read music.
As I grew older, I began to create music like what I had grown up listening to, and I became interested in guitar. In the Midwest, it’s an unspoken rule that one must have a beat-up acoustic guitar hiding away, sleeping in a closet. Our home was no different. I would tinker here and there but I really started to practice more intentionally in my teenage years. My dad took notice and fueled my interest by talking to me about different guitars. When he did, I found myself gazing at the same model time and again: the Gibson Les Paul, a rock ‘n’ roll icon.
I saw the Les Paul everywhere, and soon enough I was compelled to discover what made it such a legendary instrument to people like Jimmy Page, Slash, even Les Paul himself. I would go to the local guitar shops in search of the Gibsons but at the time most of the music shops in my area catered toward the student musician, renting things like saxophones to clarinets. The guitars they did carry were meant for beginners so I had trouble getting my hands on “the real deal.”
In high school, I played in a few bands, only making it as famous as the local coffee house. Aside from stages with stairs, my nemesis, I managed Becker well. My gear consisted of more affordable, lightweight guitars. It wasn’t until I was an adult I would purchase my first Gibson Les Paul, a wine-red beauty named “Thora.”
But there was a problem. It was heavy.
Les Pauls are notoriously hefty because they are solid-body mahogany wood guitars. This is what gives the Les Pauls their signature tone. The weight is tolerable for me now but due to Becker muscular dystrophy, the instrument’s weight wears my body down more and more quickly, so I can only play for short periods.
Thankfully, the newer models have chambered bodies. This means wood is carved out in certain areas to relieve some weight while retaining the wood’s tone. My back and shoulders are grateful for this advance in the guitar-building process, though the guitar still has some heft. While I can still play and handle the weight, I am fearful there may come a day when I no longer can.
With luck and human ingenuity, technological advances in the musical instrument industry will keep the party going. Guitar stands, for example, are an option for me down the road should the Les Paul become an unbearable weight.
Becker’s effects on my body may be out of my control, but I can adapt and evolve even if my muscles decide they’ve played their swan song.
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.
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