Mine has been a life of music and joy — and gazing at the stars
It's important to talk about what makes life fulfilling
Each of my writings in this column has focused on living life with limb-girdle muscular dystrophy. While the mission of Bionews, the parent company of this website, includes sharing what it’s like to live with a chronic progressive condition, I believe it’s also paramount to share other aspects of my existence that make me who I am.
So what have I been up to that doesn’t revolve around living with limb-girdle? Well, a lot!
I’ve been in love with music my whole life, and percussion instruments and drum set playing became my major in college. I earned a bachelor’s degree in music education and then taught middle school band, jazz, and general music classes for 27 years. Working with kids has been an extremely fulfilling part of my life, and I loved being in the classroom until I retired in June 2023.
Although my disease has progressed to the point that I’m too weak to play drums, I still maintain a home studio and give private lessons to keep my hand in teaching. In addition to sharing my musical knowledge with kids, I also obtained a master’s degree in counseling and human relations to better understand how the human brain functions, grows, and learns.
Papa was a rolling stone
The high school marching band in our town also has been lucky enough to perform in the Macy’s Thanksgiving Day Parade, the Tournament of Roses Parade, and several other college football bowl games. I was able to attend and march (or rather, roll) with the kids during several of their trips.
I love to travel and have driven across the country twice: once from Cape Cod, Massachusetts, to California, and once from New Hampshire to California and back. It was amazing to see the many national parks, eat local food, and meet new people as I meandered around our great nation visiting 20 different states.
Those road trips took place when I was in my 20s and gave me an appetite to see more of the world, so I began taking trips to explore work as a public speaker and patient advocate. Through networking with different nonprofit groups, I’ve been able to tell the story of my life and my diagnosis in Perth, Australia; Rome, Italy; Amsterdam, the Netherlands; Brussels, Belgium; and several places in the United States. My family tells everyone that I’ve never met a microphone I don’t like. They’re not wrong!
As anyone living with a chronic illness will attest to, there are certainly ways to modify hobbies that make one’s life more fulfilling. One of mine is amateur astronomy.
Since childhood, I’ve always found the night sky to be a source of endless wonder. As I got older, I read and researched constellations, nebulae, and other amazing features of the universe. After some careful study, I purchased a Dobsonian telescope, which has the lens on the side of the scope, making sky-gazing easy for us wheelchair users. I’ve also networked with the online sky and telescope community about attaching binoculars to a lounge chair so I can lie out at night and watch the sky without exhausting my arms. Stay tuned for photos when I get that built.
The amateur astronomy community has been very welcoming and eager to level the world of stargazing to allow for participation by members of the disabled community.
Speaking of being outside, several years ago, I purchased an Action Trackchair, which makes hiking and my love of the woods another great adventure.
Round this out with a love of reading, jigsaw puzzles, and great conversation, and you have me!
Finally, I would be nowhere without my wonderful wife and my two young boys, who are the light of my life. Between a love of music, travel, and adventures with family, I’m often able to make living with limb-girdle muscular dystrophy an afterthought.
I’d love to hear from you about the things in your life that bring you joy. After all, the joyful things define you more than anything.
Keep on adventuring!
Note: Muscular Dystrophy News Today 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 Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to muscular dystrophy.
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