My unbroken spirit defines me, not things I can no longer do
Struggling with identity is understandable as losses from FSHD mount
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Each of us dealing with facioscapulohumeral muscular dystrophy (FSHD) is on a slightly different trajectory. For some, the disease is a series of small losses that level out to a period of relative stability. For others, the disease is a steady, steep decline.
For some, the disease remains confined to the classic affected areas of the face, shoulders, upper arms, calves, and feet. For others, the disease spreads to the trunk, hips, buttocks, hands, and in my case, even the vocal cords.
As we progress through the various stages of FSHD, it’s easy to lose our identity if it’s tied to things we can no longer do. I won’t talk much about the “good old days” when I cut, stacked, and carried wood to heat our home. It would also be ancient history to tell you about painting houses and doing a little roofing in the summertime when I wasn’t teaching school.
I could tell you about the massive sound system and multiple keyboards I used to haul around to play music on the weekends. I’ve been reliving those days for the last week or so as I’ve digitized old recordings of bands I used to play with.
More recently, I was our primary housekeeper. I had to turn that over to my wife and daughter, as I’m no longer stable enough to run the sweeper and do the dusting and other tasks.
I’m struggling to hold on to my job as the family dishwasher. Leaning on the sink keeps me more stable, but it’s getting hard to hold up heavier pots and pans to rinse them. It’s also a struggle to put enough “elbow grease” into getting frying pans or baking sheets clean when your shoulder goes back instead of your arm going forward. It’s a battle I’m losing, but I’m fighting it all the way.
Who am I?
It’s easy to struggle with your identity as losses mount. If I’m no longer a log splitter, teacher, house painter, professional musician, or even just a house cleaner, who am I? Am I perhaps The Beatles’ proverbial “Nowhere Man?”
I’m happy to tell you that all I’ve lost are some titles. I’m still me. My body may be broken, but my spirit is intact. I still have wonderful relationships with family and friends.
As a Christian, I believe that my soul, which was made in the image of God, is still filled with light, love, and hope! I believe this light, love, and hope are born in all of us. The real me is the unbroken spirit that wants to share that light, love, and hope with others. The part of me that continues to look for opportunities to help others is the real me.
I wrote a song a while back titled “Share a Smile.” The point of the song is that we can all make the world a better place, even if all we can do is share a smile. I know there are some folks with FSHD who physically struggle to smile. I want to encourage those folks to continue smiling in your heart. That “smile” will come across in your eyes if nowhere else. It’ll come across in a thumbs up gesture or a smiling emoji in a text. You’ll help people get past the titles you’ve lost to see that the real you is still alive and kicking.
Focus less on what you’ve lost and more on doing what you can with what you’ve got. I’ll continue to try to be the best husband, father, and grandfather I can be. I’ll continue to share with others any knowledge I’ve gained over the years. I’ll keep on playing music and be glad I’m not hauling a truckload of equipment around to do it.
Yeah, right. That’s not happening any time soon, but a video of me trying to load all that stuff into our van would be hilarious!
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 or its parent company, Bionews, and are intended to spark discussion about issues pertaining to muscular dystrophy.
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Comments
Lee Capalbo
Hello Robin, I smiled many times while reading your enjoyable uplifting writing. It can be difficult to keep positive as you lose the physical abilities you once had. I recently lost my potato peeling job to the electric peeling machine. I'm still holding firm to the dishwashing detail, however. May God continue to bless your kind soul. All the best, Lee