31-year-old Duane Bazeley died in November 2011. Though he was severely disabled, his life affected hundreds of people. In this series of articles, his sister Maureen reflects on the value of her brother's life, why he meant so much to so many, and how he disproved many of our common myths about success and fulfillment.
Myth: "Protect your independence."
Freedom – that great American right to do what we want, when we want, and the hell with everyone else! I need my own car; I'm sick of this place; I'm ready to travel. But what if you couldn't? I've tried to imagine how Duane must have felt as he watched the world go by from his wheelchair. All our frustrations, our rebel shouts, must have been incomprehensible to him. Did he ache to get out of the chair sometimes, to take even a few steps on his own, without the danger of having a seizure crash him to the ground? Possibly. And yet, what enormous satisfaction he got out of the little things that made up his day! You earned a huge smile just for shifting him to a more comfortable position. Kids fiddling with his chair were enough to bring on the giggles. A short ride in a car had him humming contentedly, one hand up in the air like a permanent high-five.
What about that compulsion to be "unique"? People spend a lot of money to look different, though not too different. (You still have to have the same style from the same label that's hot this season.) D got down to the basics on this one. If he could specify, he would have said, "It better be comfortable. Not too baggy, because little wrinkles feel like mountain ranges when you sit on them all day. Not too tight, because it chafes. Not too lightweight – you're gonna hear about it if I'm cold." Colors, cuts, name brands, logos, accessories? Hours spent carefully crafting that careless, casual look? Duane genuinely didn't care. He showed me what a lot of free time you can gain when you stop worrying about clothes and remember the person inside them. He saw souls coming through the door, not fashion statements.
Considering mobility, doing what you want, and being yourself – what is independence anyway? If we were actually free, why do we shout so loudly about freedom? If we were there already, why do we need to discuss it so much? Could it be that the greater our autonomy, the more trapped our souls?
Myth: "Party on."
Our culture tells us if we're not having fun, we're not really living – that it's best to live among the bubbles on the surface, and to forget about the deeper water below. Bubbles are fascinating. It's just that they don't last. You can't cling to them; they have no lasting value, and they won't carry you far. Plus, they're empty. To stay on top, among the bubbles, means acting like a cork. A cork is always bobbing and floating, but only because it's dry and too light for its size. Being with D made me want to opt out of the surface scene and go find the deep water.
There's a great bubble called sports. It becomes an entire world; you can lose yourself in it for what amounts to years of your life. I remember one guy who did time with Duane; he came in the door looking like his life was on the rocks. One evening he seemed so dejected and forlorn that my parents grew concerned. I heard them through the wall that evening, praying for him, and I distinctly remember rolling my eyes. Didn't they have enough to worry about already? The next morning the guy was jubilant, practically bouncing off the walls. I was prepared to concede to the power of prayer, but it turned out that after a dicey score at halftime, everything had turned out all right for the Green Bay Packers.
For the next several days the radio in D's room was kept busy reporting the latest scores, while D lay quietly and watched the trees waving out his window. Then one day the volume was down. The next day it was off. When I went in with D's lunch tray, there were two guys looking out the window watching the trees.
Music can be a bubble too. And by the way, D loved music, preferably with a good thumping beat. But it's possible to idolize music to the point where it can never be turned off. Lord forbid we experience silence, or the scariness of being alone with ourselves – please keep the soundtrack rolling. No wonder we can lose the ability to differentiate between the good, the bad, and the filthy: we have to listen to it all in order not to miss our song when it comes on.
Does it stick to your soul? I used to argue, strenuously, that it didn't. But sitting next to D when the radio was tuned to the country station, and hearing three songs in a row about a ditched lover drowning his bruised ego in self-pity and Sam Adams, I began to wonder. Next to me was someone who never had the chance to fall in or out of love, unless you count the fact that he loved everyone. After a while, those songs began to sound ridiculous: selfish rants set to a down-home tune.
D taught me that it's okay to turn off the music now and then. Vital, in fact. That life is not an endless party with continuous background noise. That it's good to sit and contemplate – to give thanks for what you have. To mourn lost chances and lost time. When you're quiet long enough, you can find your way into some great, beautiful silences. Maybe you'll begin to hear God within the silence. Sometimes you'll find a joy that isn't frothy at all. Deep-water joy.
Next article in this series: A Different Kind of Warrior.