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: "Choose your friends."
Okay, maybe the rulebook doesn't spell it out so bluntly, but it's fairly easy for most of us to make a judgment call within seconds of meeting someone, and then hit "save." We want "our kind" of friends; we want "normal," by our definition of normality, which can be very strange. They have to look cool, to reinforce our coolness if we're caught standing around together. They definitely need to pat us on the shoulder when we're down, and bolster our egos (or flick off our warning lights) when we doubt some of the actions we've taken.
So along comes Duane. Because he was my best brother, it was hard to see him through a new acquaintance's eyes, but if I hadn't known him and maybe had never encountered someone with a disability, well...there he sat, his eyes often vacant, staring a hole in the ceiling. One of his wrists was noticeably contracted, and yes, he drooled. His favorite occupation seemed to be chewing on a large rag. He often didn't respond when someone said hello, even if they loudly enunciated their greeting in his ear. He was always in a high-support wheelchair or some involved piece of therapy equipment. But talk to any of the 70-some caregivers who spent time with him over the last three decades, and none of them will mention any of this. Because that wasn't who he was. Not even close.
D didn't get the chance to pick his friends at all. People flowed into his life in an uninterrupted stream, and he took all comers. No matter how messed up or how great you thought you were, you started out on a basis of trust, and a "let's see where we go from here" attitude.
Since Duane didn't judge people, we did it for him. Our family was very close. All five of us kids were born within a year of the next, with D right in the middle. We were fiercely proud of him, and if we felt anyone was staring at him, ignoring him, or talking down to him, our hackles rose. But over time it became obvious that we were too quick on the draw. We should have understood that if given time, D would always introduce himself on his own terms.
Introductions did take time – the sort where the clock slows waaay down and communication signals can't be cracked without a code. But once you knew Duane and he knew you (the latter usually happened first), you had a friend for life. And it was the kind of friend people wish for and never get: mercilessly honest and completely steadfast.
Myth: "Get ahead."
Leading the pack is exhausting, unhappy work. But somehow, for many of us, it's the only place to be. Whatever gifts we're landed with have to be cultivated and magnified to assure we stay ahead of the game, though the game changes constantly. D stripped away our assumption that "that's just the way it is," so we could see the desperation beneath.
As D left boyhood and became a man, a support network organized by our church began sending young volunteers to our home to help care for him. Their stints usually lasted several months, during which they became like members of the family.
In retrospect, it says a lot about someone's character if, in the midst of contemplating post-high school dreams and plans, he opts to try something so completely out of sync with coolness, in waters that will test his confidence level to the max. But as teenagers do, my brothers and I sometimes made snap judgments. We doubted that someone whose claim to fame was his athletic abilities or his academic prowess would make the cut in company where those accomplishments meant nothing. Of course, we thought these thoughts while ignoring our own pedestals of pride, and had ample opportunities to relearn D's last-first rule first hand.
As Duane's buddy, your new crash course includes pushing his tricycle for hours, massaging his thin legs to relieve muscle cramps, spooning oatmeal with cheese into his mouth, and making silly farting noises – even if you thought it was below your dignity to blow a raspberry in someone's ear.
It also includes finding out that nothing you've excelled at till now is needed. Best tackle on the field? Meaningless. D needs help simply turning over in bed. Straight-A student with a scholarship in the mail? Who cares? D never even graduated from kindergarten. You're sociable, witty? A "people" person? Useless. Conversations with D are basically a one-way street, unless you tell him, "Hey, Duane, there's a train coming," in which case you'll definitely get an ear-to-ear grin.
The real kicker is standing by him through a seizure, which may go on for minutes – minutes that seem like hours. There is absolutely nothing you can do to stop or ease it, no off-button, no password; even if you were a neurosurgeon, you couldn't do a thing. All you can do is keep him clear of hard surfaces and stroke his shaking shoulder. And cry. (Something incredible happens to your heart the first time you truly feel helpless or not in control. It makes you wonder about why innocents suffer. Maybe that's what it is meant to do.)
After even a few days, the lack of scramble, the absence of a cheering crowd, and the non-competition would get to even the toughest and coolest caregiver. It made me wonder, Why can't we all be like that, all the time? Like nobody's watching or grading or judging us, and it's okay to laugh at the goofy, simple stuff of life?
Next article in this series: More Lessons from Duane.