ALS awareness month is wrapping up and I've got to admit I'm worried the craze and support we PALS have been receiving is going to cool off. Don't get me wrong, the support and outcry has been amazing, but don't get it twisted, we need the enthusiasm year round to push congress, drug companies, anyone with money to listen. That's frankly a thought that I just don't know how to squeeze into a blog post but felt like it had to be said.
I've fully started using my power chair on a daily basis. This thing is awesome. I can drive off-road, Abram, my nephew loves rides. So is the van many of you helped Chelle and I buy so that I can get around and regain some normalcy. With that normalcy comes another ALS milestone. This chair has solidified that this speed demon won't be running anytime soon, or he at least won't be speeding the way he used to. Transferring to and from the toilet and shower chair has become a two person job, a decision that required falling flat on my face a few times.
I get so mad sometimes that I have to rely on Chelle to help me in the bathroom or pulling my pants up. I don't mess with the stove, too many burns to count. Cooking is something I loved doing and right now it seems like a lost art. I'll start swearing, cursing at silverware, iPhones, the mail, because the feeling of losing your independence is fucking terrible. I swore at the mailbox just a few minutes ago because I couldn't reach the mail at the back of the box.
The deck, what perfect timing. The sun is out, the birds are singing, I've got chilled beers in the fridge. I took a deep breath, grabbed a cold one, started the iTunes playlist and stared at the beauty God created in my backyard. Chelle put together some burgers, the grill is going, Wrigley is hunting, what could be better? Not having ALS I suppose. But wishing for something I can't currently change gets me nowhere. I can however find Grace in the beauty I see in my wife's eyes, the barley in my cold beer, the dove's song, the smell of melted cheddar cheese on top of a burger, Grace that I'm still here and have so much to be thankful for.