For Willie, On his Birthday
Today is my brother Willie's long-awaited 25th birthday. Since I awaken a bit later than anticipated, I race to call him before his bus arrives to take him in to work. As it turns out, I needn't have hurried; Willie is home with a bad cold today. When my dad hands me the phone, I say, “Hi Willie, it's Caroline!”
For once, he doesn't mirror my chipper tone; instead, he replies sleepily, “Hi, Caroline.” His voice is deeper than I've ever heard it, a combination of illness and maturity that catches me off-guard.
We chat for a few minutes, and I ask, “Would you like for me to sing to you?”
“Yes!” he says, with just a hint of enthusiasm.
Me being me, I latch on to that glimmer of gold and run with it. “All right! Happy Birthdayyyy to youuuuu...” I ham it up a bit, hoping it will cheer him. It's hard being sick on your birthday.
As Willie and I say our goodbyes, I'm thinking about the talk I'll be giving tonight, entitled, “Not A Burden, But A Privilege: Ministry Alongside People With Special Needs.” It's hard to know what to expect; there might be five people in the audience, and there might be 50. Despite the outline I've made and the readings I've prepared, I'm nervous. What if nobody shows up at all? What if a ton of people do show up, and then everything goes wrong? What if I botch it somehow? It's ironic, really—here I am, preparing a talk about the art of acceptance and inclusion, about how we need to welcome those who communicate and think differently, and I'm having performance anxiety. It's enough to make me laugh.
With laughter comes clarity, and I'm reminded of a poignant moment in my recent interview with Keri Bowers, who produced the documentary, “Normal People Scare Me” along with her son on the spectrum, Taylor Cross. When I asked Keri if there were ways in which “normal” people could make themselves less scary to individuals on the spectrum, she mentioned a staring exercise. When she speaks, she asks audience members to stare into a stranger's eyes for a full minute. As Keri notes, “Most find it uncomfortable … [And then] I say, 'Imagine if your minute was never up. Imagine if every day of your life, you had to be in a situation where the world is coming at you and you can't just look away.' I try to help people feel what special needs feel like, what autism feels like. Remember a situation where you felt vulnerable or unsure of yourself, a time when you couldn't communicate and got frustrated … and see [a person with autism] as a person who experiences that all the time.”
As Keri spoke the words, “Imagine if your minute was never up,” I felt as though I'd had the wind knocked out of me. Her statement had a ring of truth, and it gave me a new perspective on how social interaction might feel for Willie. With this statement held firmly in mind, I think to myself, You have to just feel the discomfort, the nerves, the not-knowing. You have to accept it, and be willing to wait it out. For Willie, on his birthday, that's what you have to do.
And I wonder if Willie ever wakes up nervous about the day before him. Does he feel anxious at the thought that he might have a meltdown? If his rages are in fact as unpredictable and sudden as they appear to be, they might take him by surprise. If that is the case, it must take tremendous strength for him to wake up each day and try to move through a routine, not knowing when or if that routine might be broken by a destructive force from within.
Willie and I love our routines. We love knowing what comes next. And the terrible truth of life is that we never know. Anything can happen, and often does. This uncertainty has the power to paralyze or free us, to lead us to despair or hope. It's our choice. And today, on my brother's 25th birthday, I will choose the latter.