Good to know that I can still handle living independently, sort of

With family members away from home, I found ways to manage on my own

by Robin Stemple | August 30, 2023

Those who read my columns regularly will know that my last one was written just after my wife, Wendy, and my daughter, Jill, took off for a vacation in Croatia, Greece, and Slovenia. Over their two-week trip, we communicated by FaceTime a lot, and they seemed to be having fun. They also reported having tired feet from miles of walking and hundreds of steps climbed. As we thought when they were planning the trip, much of it would’ve been inaccessible to me, as I’m blind and have facioscapulohumeral muscular dystrophy (FSHD), along with other limitations.

I shared last time around that I had to get past the feeling that FSHD was curtailing what I could do and stealing some of the joy of life from me. While I may have missed out on some joy by not traveling with Wendy and Jill, I still experienced a healthy share of joy while they were gone.

It was a pleasure to see my granddaughter Iva frequently. She enjoyed playtime in our kid-friendly living room while her dad took care of our three cats and watered Wendy’s plants. My son, Ryan, his wife, Danielle, and my two other grandchildren, Julia and Theo, also went out of their way to visit me often over the two weeks. While they were here, they did some cleaning and Ryan mowed the lawn. The additional grandkid time was a real blessing.

However, I think the best part of my two-week adventure in bachelorhood was the confirmation that I can still do almost everything I need to do to live independently.

Couple with FSHD Relish Shared Independence, Advocacy Work

I won’t claim total self-sufficiency, though. Wendy and Jill prepared all the meals I’d need for the two weeks. All I needed to do was take them out of the fridge, heat them in the microwave, get them to the table, sit down, and eat.

Still, I’m going to take 80% of the credit for preparing my meals. At this point, getting something out of the fridge can be an adventure as I hold on with one hand and explore the refrigerator with the other. Perhaps I shouldn’t feel this way, but I’m just a little proud that I figured out which buttons to push to get something heated properly in the microwave without melting any containers. I’m happy to report that I was able to carry my meals from the microwave to the kitchen table without a fall or spill.

I’m also happy that I can still get in and out of a chair without assistance.

Moments of self-sufficient joy

At the end of my last column, I indicated that it was time I start counting my blessings. In addition to the blessings mentioned above, here are some instances of independence I enjoyed over those two weeks:

I was able to shower and shave without incident.
I played music at a memory care facility, a personal care home, a senior apartment complex, and church.
I learned some new material for my “senior citizen” set list.
I found some excellent shows to listen to on my phone.
I made several calls every day to check in on people and reconnect with old friends.
I managed to pick up almost everything I dropped without falling on my head.
There were no major messes for anybody to clean up.

Meanwhile, my new neighbors were kind enough to bring over some cookies and fruit that I enjoyed. And the overall experience has provided material for two Muscular Dystrophy News columns that I hope you, my readers, enjoyed!

Wendy and Jill got back late last evening as I write these words. I’m happy they had a great trip, but I’m also glad they’re home. I’m not kidding myself. I know the prep work they did was essential for me those two weeks. I also know I wouldn’t have done well at all without the support of my kids, grandkids, and neighbors. It was pretty quiet around here with just the cats and me.

Overall, though, I think the cats and I did pretty well on our own!

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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About the Author

Robin Stemple Rob Stemple is a lifelong advocate for people with disabilities. He was diagnosed with FSHD in 1971 at age 14. Rob struggled with its’ affects for over 50 years. He lost his eyesight in a devastating crash with a drunk driver. Rob has been a special education teacher, director of a nonprofit organization serving the blind and a newspaper columnist. He lives in Pittsburgh with his wife, Wendy, where they both enjoy hanging out with their kids and grandkids. Rob is a musician, composer, and recording artist. His theory of life is, “Do the best you can with what you’ve got to work with!”