I just left work and I'm screaming out of the parking lot in my car. Music is blaring and it's a beautiful day. I'm ready to go to the gym. Once I get to the gym I'll run a couple laps, lift some weights, and get some good stretching in before I head home. Once I'm at home I'll take a nice long shower, Michelle likes to sit in the bathroom and talk to me about our days when I take a shower so that will be nice. After that I will cook some garlic parmesan encrusted chicken with some spinach for a nice home-cooked meal. Then, we sit down to eat I'll do the dishes and maybe chase Wrigley around the backyard. Finally I'll crack an ice cold beer and cuddle up next to Michelle for some mindless television with the warmth of her hugs and the sweet smell of her hair pressed against my chest.
Oh, wait… No I won't, I won't do any of these things, as much as I would love to, and as much as I dream about doing that every day, it doesn't happen with ALS. Rather, I will sit and wait at work until my ride can leave and can take me home because I can no longer drive. Once I get home, mind you I had to skip the gym altogether because that ain't an option with ALS, I will have to watch Michelle make dinner. Even though I would love to help her. When we are ready to eat she will have to feed me. I won't be able to help her with the dishes, and I won't be able to chase Wrigley around the backyard. I will be able to watch mindless television, but I will have to sit in my wheelchair next to the couch with an armrest in between. Michelle and I missing the embrace we once were able to have. I can't use the bathroom on my own. I can't go to bed when I want. It all has to be with someone else's assistance! And when I'm stressed and want to blog about it I can't even use my hands anymore! There isn't any way to sugarcoat this, it just flat out fucking sucks.
But, I refuse to wallow in my sorrows, let ALS rip everything I love from my grip, I refuse to lose sight of the grace in my life. I still have great friends that get me to and from work. I can still take that relaxing shower, though it might be sitting down and someone else lathering me up with soap. I can still drink that ice cold beer (through a neon straw.) I can still enjoy that home-cooked meal with my wife. And though Michelle and I don't cuddle the same we have found ways around it. Let's be honest, I can't keep myself away from her. Grace is still all around me, I just have to remind myself to pause and look around and find it.
First it hurts to read and know what a difference our realities are. NOTHING is to be taken granted of. You are teaching me grace, tenacity, love, patience, more grace, more love and more patients mixed with sassy humor. Thank you for sharing your reality with me. Hugs and much love, Lucy
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