March is Brain Injury Awareness Month, my 16th as a brain injury survivor. My social news feed and LinkedIn updates are overflowing with posts, comments, graphics, and other content by others acknowledging and actively participating in this month long event. Years ago, in my youthful naivete as a brain injury survivor, I assumed that the national mainstream media spotlight would shine brightly on those affected by brain injury. While there may be media coverage outside of those within the brain injury community, it’s largely a siloed happening. Step outside of the brain injury community, and you’ll hear a whole lot of crickets. This is neither good nor bad, it just is.
Looking back on my own life, until my life became defined by brain injury, I had never heard of Brain Injury Awareness Month. Started in 1980 by the National Head Injury Foundation (which later became the Brain Injury Association of America), a month dedicated to awareness had been around for just over 30 years before my own head injury.
For several years after my injury, the goal was simple: I wanted to be the person I was prior to my injury. I wanted to be “the old me.” Brain injury old timers all said the same thing, that recovery was lifelong, but I was determined to be different. I was going to recover completely. Time, frustration, and eventually radical acceptance have shown me that impossibility.
But what if I told you I could be better than my old self in ways I never saw coming?
Many years ago, my wife Sarah said something that has stayed with me. “You and I were decent people before your injury, but we never served a greater good.” That has all changed.
Most of my writing revolves around the day to day challenges that come with living with a brain injury, but today I’m going to break stride and do something I don’t usually do. Today it’s time for a victory lap!
Based on the success of a smaller, private online social community to serve those at my local brain injury support group, I was left wondering if there might be a greater need. Being in the company, both in person and online, of other survivors was a veritable game changer. I was no longer alone. In early 2013, I started what I envisioned to be a smaller group open to all Facebook community for those affected by brain injury. By the time the first year had passed, the group had grown to a couple thousand members. By January of this year, after 13 years, the social communities numbered over 55,000 members. No one was more surprised than me.
In 2024, we became a 501(c)(3) nonprofit, positioned a passion driven board, and continued to refine our mission. Last year, member engagement on social numbered just under 5 million, making the group one of the most active groups of its kind worldwide. Our growing number of volunteers have made the unimaginable, well… imaginable. Our organization hosts fifteen support groups a month, all virtual. This has opened the door for members who simply do not have access to local support. They all know our organization as BIHN, short for the Brain Injury Hope Network.
Day by day, as we move forward, we see the lives of those we serve uplifted. Isolation ends, friendships are formed, and person by person, hope grows.
I used to think that my injury was the worst thing that could have happened to me. Today I see it as the best thing. With my injury came hardships unimaginable to the “old me,” but like fire tempers steel, those difficulties shaped me into the person I am today.
Walt Disney once said, “Let’s not forget that this all started with a mouse.” As I look at what has come to pass, I can’t help but think that this all started with a cyclist being struck by a car. And the rest, as they say, is history.
To join the BIHN community, visit their Facebook page, website, or sign up for their newsletter.