Let’s assume you are about to spend an afternoon with your friends. You’ve got three hours scheduled for a nice game of cards. If you’ve got muscular dystrophy, how much of that time is impacted by your disorder?
For me, I’ve calculated that of the 180 minutes, only 2 minutes are impacted by my muscular dystrophy. That’s roughly 1.1% of the scheduled time. That means 98.9% of my time is enjoyed playing a nice game of cards with friends.
To get to two minutes, I estimated that it takes me an extra 30-45 seconds to get in and out of my van once I arrive, and another 30-45 seconds to get back in. Then if I have to run to the bathroom, that takes an extra 30-45 seconds as well. Your particular additions may vary, but even if it takes you 10 extra minutes, that’s still only 5.5% of the 3-hour card game.
It’s interesting to think about how much of your day is actually affected by muscular dystrophy. True, I find myself in a wheelchair all day, but as I’ve mentioned before it’s something that is not difficult for me to deal with. So in essence, there are several small pockets of time that I might think are annoying enough to attribute to the effects of muscular dystrophy.
Let’s go extreme for a minute. Pretend six hours of your day is eaten up by dealing with muscular dystrophy. Let’s assume you’re awake for sixteen hours. That means 37.5% of your waking hours are affected by the disorder. But that also means that 62.5% of your day is not. That means most of your waking day is not affected.
This is one reason I get frustrated when people seem consumed by their disorder, particularly when it’s not as extreme as it could be. There are ways to optimize that unaffected time through hobbies, games, visiting with people, and of course, employment. Yes, everyone’s strength and skills are different. Pain could also be a factor. But the bright side for me is that I think many of us who have muscular dystrophy don’t spend a significant amount of our day actually dealing with muscular dystrophy.
Just something to think about.