I’ve always been good at coping with change, but not this time

I was raised to put my best foot forward, keep a stiff upper lip, and always keep going. My favorite Bible verse is Romans 8:28: “And we know that all things work together for good to those who love God, to those who are the called according to his purpose.”

All that being said, I have a confession to make: I’m really struggling to stay positive with the changes going on in my life.

It’s not like change is a new thing for me. For the first 40 years of my story with facioscapulohumeral muscular dystrophy (FSHD), I often had periods when things would get worse, then plateau. I’d get used to it and move on.

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After a terrible traffic accident cost me my eyesight and teaching career, I recreated myself as a creator of music, making personalized recordings for children. But FSHD affected my voice, and I could only sing for short intervals. Some days, I couldn’t sing at all. So I adjusted and founded an organization to provide services for folks who are vision impaired.

My FSHD progression has gained momentum over the past decade. I liken it to a snowball picking up speed as it rolls downhill. As this happened, I had to adjust to using a wheelchair much more than I had wanted to. I also adjusted to giving up my white cane for a stability cane. And I adjusted from touching walls and door frames for orientation to furniture surfing, holding on for dear life to avoid falling.

Because of all of this, I made the mistake of thinking I was an expert in change. I thought I could handle just about anything that life threw at me. Then we moved.

Getting stuck

I knew our move to Pittsburgh after 41 years in our former home in Shanksville, Pennsylvania, would be an adjustment, but I thought that after a couple months I’d be making connections and moving forward.

That just hasn’t happened, and I’m not dealing with it well. Back in Shanksville, I was playing once a week at area nursing facilities. I also had weekly practice with my church music group. I had a column in our local newspaper and the responsibility of staying in touch with our church shut-ins. I performed and recorded with local singers as well.

These activities not only kept me occupied, but also made me feel like I was being useful. Most of them didn’t pay, but they did help my attitude a lot. Now, without them, I’m struggling. I think it’s time for an attitude checkup.

I’ve battled depression a few times over the years, and I’ve been on antidepressants. I’ve benefited from Christian counseling as well. I’ve found that the best way to improve my attitude has been to find ways to help people.

I feel tired after playing for folks in a nursing home, but I also feel better about myself. I’m lifted up when a shut-in ends a conversation with, “Thanks for calling. Please call again.” When someone tells me that a song I performed during church service lifted their spirits, I find my own spirits lifted.

I think part of my struggle is that I want to recreate my Shanksville world in Pittsburgh. And that’s simply not going to happen.

I have to leave that world behind me and see what doors open as I create a new world for myself. I also need to practice having patience, which I’m not very good at. My mom says I was born in a hurry and haven’t slowed down since. I’ll have to take her word for the being born part, but I definitely still have more to learn about practicing patience.

I need to stretch myself and be more open to the opportunities I already have. I need to focus less on the doors I’ve unsuccessfully tried to open. They may open at some point, but in the meantime, I can take advantage of the doors that are already open and waiting for me to step through.

Writing for Bionews, the publisher of Muscular Dystrophy News Today, is one such door. I hope that sharing my thoughts and feelings about life with muscular dystrophy will help someone else on their journey. I can still call folks. I can still record music on CDs to send to fans. I can still advocate for a more accessible world for those who struggle with muscular dystrophy and other disabilities. I can be in the present and help out with the grandkids when they visit. And I can focus on all that I’ve been blessed with instead of what I don’t have or can no longer do.

Thank you for allowing me to share my struggles! I’ll be honest, I feel better after doing so. One thing is certain: We’re all in this battle together, my friends!

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.