In life with FSHD, find as much joy and laughter as you can

My facioscapulohumeral muscular dystrophy (FSHD) causes a variety of symptoms that affect every aspect of my life. Sitting up in bed is a challenge. Getting dressed is tiring. Standing up has become a laborious process. I’ve had to adapt the way I brush my teeth. Eating is a messy ordeal. I’m totally fatigued after a shower.

The challenges involved with activities of daily living can be overwhelming and depressing. It’s vitally important to laugh when you can and mix as much joy into your life as possible. Sometimes, you have to find the humor in the situation.

Falling is certainly no laughing matter, but last year, after a fall, my wife, Wendy, my daughter Jill, and I found humor in the process of getting me back on my feet. As I flail my towel around after a shower, trying to dry body parts I can no longer reach, I chuckle and ask myself, “How did I get here?”

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Humor and showmanship

I’ve often written about performing music for nursing homes and senior facilities. My FSHD has affected my voice and makes the singing part of my performances difficult. Some days are better than others, but I never know what will come out when I sing.

A couple weeks ago, while driving home from a nursing home performance, I said something about my voice not always working the way I’d like it to. My driver said he’d describe my voice as “serviceable.” I thought his choice of words was the very definition of a left-handed compliment. But he was only being funny, and we cracked up laughing. The next time I performed, I related this conversation to my audience. As I’d hoped, they thought it was totally hilarious!

While I’m talking about “left-handed” issues, since my right arm and hand aren’t working these days, I’ve experimented with trying to eat with my left hand. I think Wendy or Jill should shoot a video of me trying to eat left-handed. I’m pretty sure it could be a winner on “America’s Funniest Home Videos.” I know it makes me laugh.

I think my musical performances are pretty good, most of the time. A couple of times lately, however, I’ve started a song in the wrong key, making it impossible for me to reach the high or low notes at some point. Once or twice, I’ve also taken requests, only to realize halfway through the song that I only know part of it. As the music crashes and burns, I just start laughing. Fortunately, my audiences laugh along with me.

Back in August, I was performing at my favorite care home with my friend Richard. Richard not only drives for me, but he also adds percussion on a drum box. We launched into “Wipe Out,” but when we got to the famous drum solo, I’m not sure what went wrong. As a blind guy, I couldn’t see what Richard was up to, but instead of a rapid drumbeat, all I could hear was a thump every once in a while. Our audience roared with laughter. Is there a more beautiful sound? The busted solo was, in actuality, just perfect.

Intentional laughs

Sometimes, you have to take intentional steps to bring more joy and laughter into your life. Lately, Wendy and I have begun watching an episode or two of the television classic “M*A*S*H” a couple of afternoons every week. Despite being set in the middle of a war, I can’t listen to an episode of the show without lots of laughter. We also found a series on YouTube titled “Dry Bar Comedy” that always leaves me laughing.

I’ve written about my incredible family quite often. In spite of the physical challenges I face, I try to see them as much as I can. I enjoy hearing about what’s going on in their lives, and nothing brings me more joy than the sounds of my grandkids playing, singing, dancing, swimming, riding amusement park rides, or even having a meltdown. It’s just a joy to be a part of their lives.

I played music for a funeral recently, but they didn’t call it a funeral; they described the service as a celebration of life. Most of the service was a retelling of wonderful stories from the life of their departed family member and friend.

I don’t think we should wait for a memorial service to celebrate our lives. Life with FSHD can be difficult, but joy and laughter can offset the pain and sorrow. Do what you can to find humor in your circumstances, and remember to count your blessings every day. Doing so hasn’t changed my situation, but it’s changed my perception.

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.