The Unmasking Brain Injury Mask Project

Do you know someone living with a traumatic brain injury (TBI)?

If you know me (even if it’s only through this blog or on Facebook), you do.

And now, I know several more people living with a TBI. I recently joined a local TBI support group, and have met several others dealing with this serious and mysterious injury/condition. Turns out there’s lot of us.

Every year, about 1.7 million Americans suffer a TBI, according to the Centers for Disease Control. About 52,000 die.

Wow. Those are big numbers. Too big. I had no idea.

mask3At our most recent TBI meeting, we made masks as part of a national TBI project, which I’ll get to soon. But first…

What I’ve learned from the other members of my TBI group is the level of impairment and the obstacles we face on a daily basis range from the minimal to the extreme. It’s heartbreaking, and yet inspiring to learn about the other members of the group and see how they courageously live their lives, one day at a time, making the best of it. We’re an optimistic group for the most part, and are grateful to be alive. I know I am.

Some of the long-term effects of a TBI are: seizures, cognitive deficits, depression, anxiety, aggression, progressive dementia and an increased risk of suicide. So, while a TBI is a physical injury, many of the symptoms are mental issues – and can be permanent.

And, get this, it’s possible (but incredibly rare) to get a TBI during a storm, if you’re on the phone (a land line) and a bolt of lightning travels through the telephones lines, into your phone and then leaps into your brain. Scary? Yep.

I’m lucky I didn’t seem to suffer any cognitive damage and am pretty much the exact same person I was before Nov. 3, 2013. You’d never know I have a TBI (I think; I hope). I do have more aches and pains from head to toe, and am more anxious, a little more prone to stress and my brain gets tired a lot faster than it did back in my pre-TBI days. But I know the triggers and have learned how to avoid them … and how to (mostly) escape all the bright lights and noise around me, and to relax, breathe and rest when I start getting a little anxious or tired.

I’ve also discovered the world – especially restaurants – is a really loud place. And there’s a cascade effect in restaurants triggered by loud music, or one really loud/annoying table. I think I’ll write a future post about The Cascade Effect (sounds like a great movie title, doesn’t it?).

mask1OK, here’s the part about making our masks. And yes, it was fun, like being in elementary school art class again.

Our masks are part of Unmasking Brain Injury, a national program designed to “promote awareness of the prevalence of brain injury; to give survivors a voice and the means to educate others of what it’s like to live with a brain injury.”

Creating a mask is a way to express your TBI-related emotions.

What should I put on my mask? What emotions should I express? What TBI-related emotions do I have? Several, but they’re hard to express. And I’m no Van Gogh.

What color represents anxiety? Red?

What color is stress? A darker, angrier red?

I’m pretty sure depression is gray. No wait, feeling blue means you’re sad, right?

Should I mark all the scars on my forehead and scalp on my mask? Nah, too gruesome. Should half my mask be sad and the other half happy? Nah, too cliché.

In the end, I went with a bicycle theme. I know: “Come on Steve, a bike theme, that’s so predictable.”

Here’s why, and what I wrote on the paper that goes with your mask:

Was hit by a drunk driver while on a bike ride. It happened at about 11AM on a Sunday morning. I woke up on Wednesday afternoon. It took a long time to get back on my feet, back to work and back on my bike. But I did. I have yet to ride by the spot where the incident happened. Maybe one day. Maybe not.

To jazz it up, I added some yellow and then some glitter to my mask. I don’t know what emotion the glitter represents. Sunshine? Optimism? Mustard?

PS: Our masks will soon be on display at Riverside Methodist Hospital, and some could be on the Unmasking Brain Injury website and/or Facebook page. Check it out.

PS (part 2): This blog is my on-going TBI recovery project. You know, Unmasking Steve. I think it’s helping.

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