There are a lot of analogies that can apply to what it’s like to live with Cerebral Palsy.
For a long time my muscles were like a phone dialing the wrong number.
Then I started telling people I was still working with dial up while they had Wi-Fi (thanks to John W. Quinn for that inspiration).
More recently I’ve referred to my muscles, or more accurately my nervous system, as not having an off switch.
All of these analogies can apply to my experience, and I tend to use them interchangeably. However, there are probably a few more that would apply too.
The only time all of my muscles are ever fully relaxed is during surgery, and possibly when I’m asleep but that’s a stretch.
There’s a sense of pride that comes along with being able to say that you’re “firing on all cylinders,” but there’s a downside to it that doesn’t get talked about as much as it should.
Always being “on” means it’s hard to get adequate rest, making you prone to injury (even weird ones) and making it harder to recover from injury.
There’s also the matter of fuel aka food.
If you use more energy you use more fuel to get that energy.
I often joke with my teammates that although I don’t always swim the same distance they do I’m actually working at least twice as hard as they do, except I’m not always joking.
Asking my body to sprint is like asking a car to go from 0 to 60 with the parking brake on. I start off OK but I’m quickly left in the dust. Honestly if I can see the feet of someone in front of me than that’s a success, at least for me.
Is it frustrating? Sure. But I’ve made such a dramatic change in my training that I wouldn’t have even considered swimming with these people a year ago.
I’ve made so many changes in my life in the last year that being able to be within striking distance of someone else’s feet is really an accomplishment, if you’re looking at the bigger picture here.
Living without an “off switch” can be a challenge and it always seems to be a learning process but being able to put it in a context, for me that means within swimming, helps solidify it more than I ever thought possible.