The definition of shocking: causing a feeling of surprise and dismay.
Brain injury is shocking.
My exposure to brain injury has been a journey in education and life lessons. Connected to the brain injury community by circumstance, coincidence, and the universe speaking (loudly) for the past few years, I’ve learned some things.
Those roots began as a freelance journalist for a local military newspaper. I had to research brain injury for some assigned stories.
Numbers tell a story.
Big numbers tell scary stories, especially really big numbers, like millions.
Brain injury affects millions.
Facts and data, though, don’t live, breathe, think, listen and speak. Real people do. Listening to and writing about the stories of veterans, caregivers and the organizations that support the brain injury community put the real in real story.
However, a story truly comes alive when you find yourself directly in it. I witnessed a dear family member fall ill in the autumn of 2013. An epilepsy diagnosis as a result of brain injury was the next chapter in his story and mine.
Two mere days after my loved one’s formal diagnosis, I was offered the opportunity to help out at a brain injury organization whose programs were built by and for people with brain injury.
Fast forward to 2015 on a winter run that ended with a nasty fall and had me going through concussion protocol at the nearby hospital. The universe asked questions.
Why brain injury? Why now?
Why is brain injury scary?
Here are my answers.
I have no idea why brain injury entered my life. No one does (though I wish we all could have those answers, like right now).
Brain injury has shocking speed, like seconds.
Brain injury can impact anyone at any time.
Brain injury hurts physically, emotionally, mentally, socially, and economically. My past interviewees, friends in the brain injury community, and my own family members can attest to this with startling detail and experience.
Shocking enough, right?
The way brain injured people are treated continues to surprise me. For some people outside the world of brain injury, the stigmas, misunderstandings, and fears surrounding brain injury and the people who live with it, perpetuates negative behaviors, myths, and cultures.
Some people think that if you have a brain injury, you’re done; you are a sad, tragic person who is not going to change, grow or get better. Some think brain injured people can’t really do much of anything. In essence, people subconsciously and consciously write off people with brain injury.
It’s not good.
What is good is that the truth is bubbling up to the surface of some darkened waters providing a bright and reflective light. That light is found in a common thread I see time and time again in those who have kindly allowed me access to their journey and lives through a willingness to tell their stories. I mean really telling it like it is. There’s also a beautiful and breathtaking willingness to build awareness and understanding.
That’s the best answer.
All these different people from all walks of life united by brain injury but also united by the willingness to change the face of brain injury. The numbers of those willing here are beyond inspiration.
As an invested observer and one who shares words, it’s clear that the community will redefine, reshape, and rephrase the story. The book is getting re-titled. The brain injury community is demanding a re-write. They have taught me that shock propels us into action. Action propels us to change. Change propels us to hope.
Kim Thompson is a freelance writer in Washington State. She is also the communications manager for the Brain Energy Support Team (BEST), a 501c3 nonprofit organization whose programs and services were built by and for people with brain injuries and their families.