You Win Some
I hope you have something in your life that brings you joy the way attending concerts brings to me. You don’t have to get it, you don’t have to get my particular thing, but if you haven’t found your particular thing? Look for it, find it.
Don’t wait another second, not one more.
Whatever your “front row Barenaked Ladies concert tickets” are, drive across four states and get ’em. You will not regret spending money and time en route to bliss. We don’t hold a great deal of material wealth, my husband and I, but I will spend money for good concert tickets; I carry not one whiff of regret at having spent the money on the experiences.
Being with my friends, sitting in the front listening to MY hall of fame band play MY song means more than words. Sure, I said some stupid things to the guys in the band. Mostly stupid, probably. Once I even had to apologize for staring, pretty much unresponsive before I recovered my powers of speech (Go, Wendy! Jaysus. . .) But I’ll do it again if given the opportunity. With any luck, I’ll construct complete sentences, topic-related would be cool too, but let’s be honest–I’ll rant like an idiot or stand by mute. Having an advanced degree in communication sciences and disorders means nothing when communicating with my favorite musicians. But I’ll go. And I’ll thank them for the music, for being with me whether I need strength or a celebratory soundtrack. And I don’t know if they think I’m weird, stop asking me, but I’d like to think they appreciate their fans, and since this is my little web page, we will go with what I’d like to think, m’kay?
When they opened the encore with my song, my heart was fit to beat straight up and right out of my chest. My eyes welled up, and I was swept up in the moment–that being swept up thing actually happens! I swayed back and forth, tears in my eyes, and with my hands over my heart–don’t know what’s got a hold of me, it’s greater than gravity–but I knew what got a hold of me.
You’re rolling your eyes, whatever-ing me. It’s OK. But maybe if we were each allowed that kind of moment, the moment where everything is perfect, every single thing is perfect, we’d be a happier world.
You Lose Some(thing)
Joy can be elusive and fleeting (see above). Without it, one could easily fall down the rabbit hole that is reality. It’s easy to forget how damn incredible you can feel when your single-sightedness keeps your eyes trained on the ground and not looking up.
Muscular Dystrophy is an asshole.
I get “talked to” for being negative, for attending to what-ifs and you-don’t-know-thats. True statements, those. A part of my brain tells me that it’s not negativism, but pragmatism or keepin’ it realism–my son is losing appreciable strength in his hands and wrists. He carries an amended posture in his hands and arms, and it’s not the good kind of progress. It looks different, his bones moving as a result of the muscles not working properly. Look down at your wrists–your wrists are probably on a flattish plane between your hands and arms. His are at odds and angles against that plane. Hands turned in, fingers splayed back. Even an action simple as clapping looks labored.
He’s losing functioning. Some muscles/muscle groups work while others don’t. That leaves an imbalance of muscles–a muscular overdevelopment or overcompensation against those muscles that don’t work properly–suddenly, this imbalance seems more pronounced. I knew from Day One it wasn’t going to get better, but it’s a loss to see this decline. He says it doesn’t hurt, and he hasn’t noticed that any tasks have become more difficult, and for this I am grateful.
Being grateful it’s not worse doesn’t make me happy he has it though.
Listen to this song–it’s titled Grateful. I’ve been obsessed with it since I first heard it live last Friday. So. Good.