Taking things one day at a time after FSHD sidelines me from fun
Being unable to go on a family trip is emotionally hard to accept
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It’s been about an hour since the garage door closed and my wife, Wendy, and daughter, Jill, set off on what I hope will be an incredible adventure.
They’re headed on a 15-day vacation to Slovenia, Croatia, and Greece, and I couldn’t be happier for them. So why am I fighting back tears?
I think it’s the feeling of being left behind. I know in my head that the trip they’ve been planning for eight months isn’t something I could handle with my facioscapulohumeral muscular dystrophy (FSHD), blindness, and other physical limitations. Many of the sites aren’t accessible, so I would be spending a lot of money to end up sitting in a corner somewhere while Wendy and Jill tour a castle, swim in the Adriatic Sea, or hike a trail.
I know I’m better off staying at home in a familiar environment, where I’m safe and can function well. I have my recording equipment, so with the house to myself, I can turn up the volume and, hopefully, create some great music.
Wendy, Jill, and I thought of everything I might need while they’re away. We’ve made arrangements for every contingency. I have emergency contacts in case of a spill or fall. All manner of meals are prepared and frozen — all I need to do is grab something and throw it in the microwave. My granddaughter, Iva Jane, and her dad will be visiting daily to take care of the family cats. My son, Ryan, and his family will be dropping by to visit as well.
Before they left, Wendy and Jill double-checked that there were no obstructions in any of the parts of the house I use. I’m not concerned. I know I’ll get through the next 15 days without any major problems.
However, now that they’re out the door, it seems to be more of an emotional struggle than I had anticipated. Being unable to go on this adventure with my family has brought home just how much of life’s joys have been stolen from me by my disability.
A different scenario
This is Wendy and Jill’s second trip together. They went to Switzerland, Germany, and the Czech Republic in 2015 and had a wonderful time.
That year, I recognized that I wasn’t up for that kind of travel, particularly in parts of Europe that, for various reasons, haven’t been made accessible. At the time, I was working part time and playing music for at least a dozen nursing homes, which helped me deal with not going on the trip. I kept busy. I could rationalize that at least I was doing something useful and, hopefully, beneficial to others.
I think the emotional blow has hit harder this time around because my schedule isn’t filled with work and other activities. I’m slowly getting established in the Pittsburgh area, where I relocated last January. I’ve made some progress in becoming part of the music program at our new church. I’ve also finally started to get some bookings at nursing homes and other senior facilities in our area.
It’s not the same as it was in 2015. I have entire days with nothing on my schedule. I’ll be OK, though. As I often tell my friends, I’ll just take things one day at a time.
I have my routine: prayer, breakfast, Bible study, exercise bike, newspaper, more exercise, call my mom and a couple of friends. This takes up a large chunk of the morning. I’ll be powering up the computer and instruments to create some music in the afternoons, as long as my shoulders hold out.
I’ll continue to search for part-time remote work, as I’ve been doing for almost two years. I haven’t had any success yet, but with time on my hands, I’ll keep looking. I’ll be able to mix in a couple nursing home music sessions, along with a rehearsal or two at church. To be sure, I’ll continue to write my columns, which are always cathartic for me.
Once I get past the emotions I’m feeling right now, I plan to spend more time reconnecting with old friends. (Although honestly, I think that will have to wait a day or two. I’m not one to cry on someone’s shoulder, and I can’t stand feeling sorry for myself.)
It’s time to start counting my many blessings again!
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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