In the world we live in, it seems there is a time set aside that’s devoted to every cause and quirky passion around the sun. For instance, in March alone we have bizarre events like “Poultry Day” (3/16), “Kiss Your Fiance’ Day” (3/19), “Nougat day” (3/26), and “Mantee Appreciation Day” (3/25). This month is also officially known as “Caffeine Awareness Month”, “Cheerleading Safety Month”, “Umbrella Month”, “Women’s Appreciation Month”, and “Craft Month.”
We are so inundated with often unnecessary information being rammed down our social-media outlets, that for me, it’s generally felt like a white noise roaring over my newsfeed, which I stopped hearing long time ago. Until brain injury ripped my life apart. Then… I was listening.
Amidst poultry and crafts, mantes and cheerleaders… March is also “Brain Injury Awareness Month.” For the 1.7 million being people who are drafted into the TBI club every year, Brain injury is reality every minute and every hour of every day. For everyone else? Likely..white noise. I had a strong desire to lift that white noise just for a moment, before they, like I once did, return to news feeds full of cat videos, political debate and selfies. So on March 1rst, 2015, Patrick and I made a quick little video talking about brain injury, uploaded it to Facebook and continued about our day!
To our surprise, people really loved our video! They shared it on their pages, asking other people in their communities to watch it. It occurred to me that if we could make a difference with one video, why not do more? There was so much to say and share about Brain Injury!
Patrick and I decided to commit ourselves to a challenge: to make one video every day for the entire month of March, talking about brain injury. And it’s turned out to be one hell of a ride…
We’ve talked about the roller coaster of emotions that comes with TBI….
And then we decided the snow in Jersey was for the birds and hopped a plane to Florida….
And discovered an amazing therapy available to both of us that we couldn’t find in rehab…
Which helped us to reflect on the blessings that come from something terrible….
We called on our TBI brothers and sisters to join us in increasing TBI awareness….
And as our trip ended, we realized that being in nature for a week had brought healing…
Even Patrick’s therapists said we should go to Florida more often!
We compared and contrasted some of the many treatments available for TBI patients…
And laughed our way through the frustrations of expressive language difficulties…..
We proved that doctors don’t have the final say in what is possible….
And proved that life doesn’t end after TBI… but is a chance to redefine what matters….
THIS EXPERIENCE HAS BEEN SO LIFE-CHANGING FOR PATRICK AND I.. AND WE ARE ONLY 18 DAYS INTO OUR WEB-SERIES!
As we laughed, cried, argued and loved, we still managed to create our videos. Imagine our surprise, when were gifted with an amazing response from the community! Emails, messages and Facebook posts poured in, thanking us for taking the time to increase awareness and share our story. Survivors wrote to Patrick telling him that the videos were inspiring them to keep going and to keep fighting. Caregivers reached out to me with warm words expressing how comforting it was to see that there could be life (and love) after TBI. The most amazing moment for me so far has been receiving a letter from a young woman in Cape Town, South Africa. Her boyfriend had only recently suffered TBI and was just awakening from a coma. “TBI is underfunded here, and there is so little awareness. Thank you from the bottom of my heart for giving me hope,” she said.
I was floored.
TBI is isolating in every way imaginable. It’s cruel and exhausting and strips you of all your resources. But there is healing in community. There is healing in knowing that you are not alone. It’s not been easy making these videos happen, as our lives are a rat-race of doctors’ appointments, referrals, chasing down specialists, fighting insurance companies, and doing research. But I’m so glad we’ve stuck with it. And I can’t wait to see what the rest of the month will bring!
On March 31, 2015, we will end our series with a “Light Up the Sky Ceremony” of our own. We’d like to encourage everyone out there to join us in lighting up the sky, and then email us at 16PetalsofBlueLight@gmail.com your videos and pictures. We will be creating a video/picture montage called “This is the Face of Brain Injury.” Please tell us where you are from when you send the footage/pictures along.
Thank you all for the endless support, and for coming along with us on this amazing, heartbreaking and rewarding journey.
Love, Light and Music,