Those who know me well know that I am a big fan of peer support for brain injury survivors. While there is a lot of information to be gained from the medical community, the subtle and at times not so subtle nuances that come with living the brain injury life can’t be taught from books. In the 15+ years since my own injury, a new phrase has been gaining traction. The term “lived experience” is now becoming commonplace.
BIHN, The Brain Injury Hope Network offers online resources and hosts 16 monthly support groups.
As a TBI survivor, my own lived experience is my greatest asset in my advocacy work. When I have the opportunity to speak with another survivor, it takes just a moment for them to realize that I know my subject matter, not because I studied it, but because I've lived it. My perspectives differ from those uninjured because I am able to share from a place of deep empathy.
It’s the sharing of this lived experience that creates strong bonds and lifelong friendships within the survivor community. We often equate our relationships to that of family. Such is the strength of the ties that bind us together.
In a very real sense, we carry each other. We protect each other, and ultimately, we respect each other, all knowing what it often takes to simply get through another day. And sometimes we need to just get something “off our chest” by sharing with another brain injury survivor. Such was the case for me just this past week.
Over a dozen years ago, after I had presented at a statewide conference, I was approached by a member of the medical community. Presenting leaves me emotionally spent. I share deeply from the heart, knowing that my own lived experience can help others. In this post presentation, worn out state, the doctor who approached me let me know in no uncertain terms that I “clearly did not have a brain injury.” My mouth most likely fell open as he walked away. I was utterly devastated.
Fast forward to my most recent conference, and history came close to repeating itself. I had just keynoted to a mixed crowd of attendees that included both brain injury survivors as well as many professionals. In that worn out vulnerable state, another doctor approached me. Wasting no time, his first six words let me know what I was in for. “You got it wrong, you know.” He was firm in his assertion. His point? I had shared that traumatic brain injuries were from external forces and that acquired brain injuries were from internal causes like stroke or anoxic brain injury. “All brain injuries are acquired,” he continued, and then dropped a written explanation in my hand to refer to the next time I spoke.
You may be wondering how I reacted. The good news is that I didn’t. I thanked him for the explanation and parted company as quickly as possible. I wasn’t angry, and I wasn’t even surprised. But I was disappointed as I realized that in some respects, we haven’t come as far as I had hoped over the last decade.
I brought this experience to a recent support group. I know that very little of what I experience is unique these days. And as I fully expected, we all got a bit of a chuckle out of it and moved on with our respective days.
Therein lies one of the cardinal virtues of being part of a like-minded community. We keep each other grounded, laugh at things that might shock the uninjured, and live better lives because of it.
About the Writer
David A. Grant is the founder of BIHN, The Brain Injury Hope Network. In addition to online resources, BIHN also hosts 16 monthly support groups.