I haven’t written anything here in the last week or so, but I have been doing a lot of thinking and reflecting. A dangerous yet interesting and adventurous place for me to be… in my own head. As each day passes, I’ll notice a little something about myself physically here and there that was a bit different from the previous day. It really is quite mysterious and frightening all at once. Lately it’s the use of my left arm strength and dexterity of my fingers. My brain is sending the signals loud and clear to my hand… “Yo arm… reach across the table and grab that water bottle over there!” well it’s really quite frustrating because my arm’s just like, “What was that brain my friend? I’m not picking up the signal you’re trying to relay over here.” Communication breakdown! (queue Jimmy Page guitar riff). I digress… but this what I’ve had on my mind to opine about today. This mind, body connection.
I’m kinda blown away with this concept. This connection between the brain and the body happens on both physical and chemical levels. One never thinks about it…. it’s automatic, it’s instantaneous. I’m certainly not going to bore you with my findings from articles, medical journals and the consultations of amazing spiritual healers. But here it is in a nut shell, there are these little guys called “motor neurons,” or nerve cells that send electrical output signals from the brain to your muscles. And these little guys are needed for your muscles to actually work and function. So yeah, they’re important little guys. We all have em, honestly I never gave them enough credit for the hard work they do. They wield a heck of a lot of power. Those of us with ALS know all to well the frustration of having a brain that remembers how to move correctly, but a body that simply doesn’t. For us, when these motor neurons lose their strength and die, they don’t replenish. Once they’re gone… they’re gone, gone… and nothin’s gonna bring them back. They’re gone.
Yeah so for me this process started almost 5 years ago with my left leg, eventually making it’s way around to the right one. Nobody knows why. Nobody knows how. Heck a bunch of pretty good neurologists couldn’t diagnose it for almost 2 years. Crazy…. I know. Doesn’t seem to make much sense. Completely healthy one day, minding my own business and my left foot starts getting weak. And so this new journey begins. While my mind and my sight will be spared. I notice it slowly, take over parts of my body. But I’m still here, and I fight on with what motor neurons I have left! Sometimes it feels like the fight scene with the Knights in that old Monte Python movie. “It’s just a flesh wound!” haha… I freakin’ love that scene.
So why am I depressing everyone today? I swear I’m not bitching or feeling sorry for myself. I’m actually in a pretty great mood right now. Sunday night shows rock! hmmmm…. Oscars, Walking Dead or Homeland. All three? why not! I promise not to do this here often. But I need to do what I can to help my brothers and sisters who join me in this fight. There is a cure out there some where, I’m so sure of it. But the urgency and the attention to this cause is not where it needs to be. If the cure doesn’t come in my time, well I must do what I can to spread awareness for the families who will continue to suffer long after me.
I knew exactly nothing about Motor Neuron Disease, as it’s called throughout the rest of the world. I’m far from the only one that had no idea what it is, so I must do what I can to explain what the heck this is like and what it does to people. With so little attention paid to it in the general public, finding a cure is just gonna be that much harder to attain.
So while we watch these perfect movie stars walk the red carpet tonight, think about those you love around you. We all have our battles and we can choose to spread awareness to things that really matter in this world. And so I battle on… “it’s just a flesh wound!”