This is not a particularly unusual scene in Capitol Hill. While I’m happy to report that the number of helmeted bikers far exceeds the number without helmets in our neighborhood, I still find myself in a tizzy of emotion anytime I see a child in this precarious situation. March is TBI Awareness month and today, March 16th, is the national day of awareness here on the Hill. Just a few blocks from where I spotted this man riding helmetless with his small child, and from the grassy corner known as Turtle Park where TC was robbed and hit on the head with a baseball bat, the nation’s leading TBI organizations are gathering to spread awareness of an injury that affects 1.7 million people per year in the U.S.
Whenever I give a public speech, I always begin by explaining that I was someone who had never heard the words traumatic brain injury before meeting it head on. As far as I was concerned in my pre-caregiving universe, I had a responsibility to be empathic to the disabled, but building any deeper understanding was uncomfortable – a reminder of that thin space (also known as circumstance) that separates the fully abled from the challenged.
As I’ve been thinking about the purpose of this month and the upcoming speeches I’ll be giving, the word otherness keeps coming to mind. Otherness, as I define it, is that invisible boundary we draw around ourselves to protect that false notion that somehow we are special, protected from life’s most excruciating struggles. Otherness suggests that we are “normal,” while anyone experiencing different circumstances is the other. It’s a concept that assumes life is supposed to go one way, and that obstacles such as illness and loss don’t exist within that normalcy.
It goes without saying that I learned the hard way that otherness is a crock of nonsense. There is no other, no superpower protection from life’s bad stuff, and no justification for the arrogance that causes some people to see themselves as normal and judge the rest as something else. Numbers like 1.7 million don’t lie. There’s a lot of people being introduced to the words traumatic brain injury the hard way, just as we were.
So, what is awareness and what good does it serve? In the case of TBI, awareness is understanding that the brain is the most critical epicenter of your existence and that it’s worth taking the time and effort to protect (I hope you’re reading, Mr. Biker). It’s also knowing that the people you meet in your life who might display behaviors, quirks, or physical limitations that don’t fit the accepted mold might have a bigger story to tell than what meets the eye. Awareness is about accepting these differences without judgment and without the need to scrutinize every nuance that is unlike your own. Lastly, awareness is about accepting that brain injury can happen to anyone, including yourself, and giving credit to those who are learning to live lives complicated by TBI, particularly those who have been forced to climb the mountain of reinvention – creating new identities, new purpose, and new attitudes in the wake of tremendous loss of self.
I often say that if TC wasn’t my husband, he’d still be an enormous hero of mine. Grace is just about the most fitting word in the English language to describe his approach to life, and I am continually awed by the other TBI survivors I’ve met over the years who share his sense of calm and deliberate determination. Last night we were introduced to a few other survivors, afflicted by a little known disorder called pseudobulbar affect. More commonly referred to as PBA, this neurological disorder incites involuntary laughter and crying, which can be both isolating and embarrassing for people to live with. One of the panelists at last night’s screening of Beyond Laughter & Tears referred to PBA as emotional incontinence, the inability to control emotional reactions.
Although they may take different shapes or forms, so many of us are living with some kind of challenge. On this National Day of Awareness for TBI, please remember that our challenges needn’t divide us, but unite us instead. None of us are “normal.” None of us are exempt. So, love your brain, love your neighbor’s brain, and please, please always wear a helmet.