As I grow older with limb-girdle muscular dystrophy, one of my biggest challenges isn’t medical; it’s social isolation.
When I was younger, it was easier to say yes to all kinds of social activities. That is likely true for all of us, but with a power wheelchair, progressive muscle weakness, and general fatigue, I decline plans more often these days. The icing on the cake is the fact that I live in New Hampshire. Winters are always cold here, and this year has brought lots of snow and ice.
The COVID-19 pandemic resulted in many people with rare, chronic illnesses having to hibernate at home, sometimes for long periods of time. I realized this could become a habit, and I let it happen anyway. My isolation continued a bit too long after the height of the pandemic had passed.
Today, countless amenities are available to us at home. TVs are huge, and I can stream anything I want. Why go to a theater? I can listen to millions of songs at the touch of a button, so why bother attending a concert? With options like DoorDash and takeout, do I really want to go out to dinner? I’ve lost my ability to speak loudly, so it’s easy to talk myself out of a loud restaurant, bar, or club.
Readers of my column may recall that I am a college-educated musician. I’m a drummer, and in my late teens and early 20s, I often played in the public places I now find myself shunning. The old me would be disgusted. On top of that, everyone who knows me knows I am Mr. Extrovert: I love people, will talk with anyone about anything, and love to learn what makes all of us tick.
So how do I combat isolation as I age and muscular dystrophy (MD) threatens to rob me of yet another joy? In the same way I’ve coped with every stage of this illness: I don’t let MD take the wheel. I look for balance. I find different ways to stave off isolation, and I challenge myself to focus on the present. Of course, all of this is easier said than done.
The specific strategies that help
I may also call an old friend out of the blue just to say hello. This not only enables me to be social but also allows me to speak with someone I may not have seen or heard from in years. Life slides by, and we all wonder why the days are long but the years seem short. I try to do this once or twice a month, and I have found it to be rewarding for both myself and the recipient of my call.
If someone suggests a crowded or loud location to meet, I may pivot and suggest a bookstore café or similar relaxed setting. This way, I am avoiding isolation and leaving the house, but I don’t need to worry as much about noise. I still have a manual chair, so I’ll also visit my friends at home as long as they’ve been instructed on how to transfer me safely and don’t have a million stairs leading to their front door!
I continue to compose and share music with friends and family. Combining a hobby with socializing is another great way for me to keep my hands, heart, and mind involved in something I still enjoy, even though I can no longer play drums due to my disease progression.
Finally, I try to say yes to friends and family, sometimes forcing myself to go shopping or run errands that are best handled in person. “Forcing” might be too strong a word, but when I am on the fence, thinking it’s easier to say no and stay at home, a little voice in my head usually whispers that this is my MD trying to slow me down and stop my momentum. I welcome that voice, knowing I can silence it by continuing to move, venture out in public, and make memories with people whose time and company I value.
Being social helps me ensure that MD stays in the back seat. Once I’m out of the house, I always feel better about myself.
What helps you avoid social isolation? I’d love to hear what works for you in the comments below.
Note: Muscular Dystrophy News 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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