Every morning I walk to my local Starbucks for my beverage of choice -- which varies from day to day, but whatever it is, it's iced, so I can use a straw -- and find a warm place to sit and people watch.
It is obvious with every new caffeine-seeking customer that we all treat our bodies differently. There are those, let's call them "temples," who specify non-fat or maybe even soy in their latte. Maybe they order a bite to eat -- a banana or perhaps even some yogurt -- but either way, it's clear that they are taking care of their bodies.
Then there is another group, we'll call them the "playgrounds," who typically order big with whip and caramel on top. Their quick morning snack usually consists of a piece of cake disguised as a "breakfast pastry." The coffee guzzlers know what they like and are not afraid to enjoy it.
The one common thread, besides being over-caffeinated, is choice. They are actively making a choice that will directly affect their body and how it functions. I, unfortunately, do not have that luxury. Every day is a challenge, even in a battle between my body and me. Don't get me wrong, I do have a choice in what I put in my body, but how my body functions or even appears is outside of my control because of ALS.
The disease affects both upper and lower motor neurons. If you are like me, you are probably asking, "What the hell is a motor neuron?" That is just one of the many kickers of ALS -- not only is there no known cause or cure, the disease itself is hard to describe. If I say breast cancer, people know what that looks like. If I say autoimmune disorder, people know what that means. But a motor neuron, it's like the Rodney Dangerfield of the disease world.
I get asked all the time, "What does it feel like, or does it hurt?" My body, while at rest, feels the same way it has for the previous 31 years. It's not until I want or need my body to follow directions that I am reminded of its limitations. Picture sitting in your parked car. As you look through the windshield, it appears to be the same car as it was yesterday. However, once you start to hit the road, it just seems different. Maybe it doesn't have the same speed or handling, but there is no doubt in your mind you're in the right car.
Thankfully, and I can say that in all seriousness, it does not hurt. Although my muscles, especially in my shoulders, arms, and hands have greatly weakened, I am not in any pain. My body has changed, I know that, but I can tell you that my self image has not. Just like the "temples" and the "playgrounds," I actively make a decision. A decision that says, "Who cares if I have super skinny arms? Mick Jagger has been making them work for over 60 years." A decision that says, "I choose to be seen as a body of work rather than a body not working."
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