A glorious Sunday in September, September 27 to be exact, was marked by thousands of small steps and rolls, made by hundreds of TBI survivors.
The occasion was the first annual Walk and Roll for Brain Injury, put on by the Brain Injury Association of Massachusetts, on a track around a football field in Framingham, Massachusetts, a stone’s throw from where the National Head Injury Foundation began.
For that lap or two or three, we were all in motion as one; united by the common language of Brain Injury. In fact, I would go so far as to say that it didn’t matter how we actually made our way around that track; as we sang and walked that first lap, we were all floating on air.
There was an energy and a spirit that levitated us, almost as if we were hovercraft, gliding seamlessly around that 1/4 mile track. For those moments together, not one of us was disabled. We were all doing the best we could with the tools we had, yelling, “This is who we are,” being proud of what we could do; as individuals and together, as a group.
In a way we were going back to our roots, back to the beginning, as Marilyn Spivack eloquently reminded us. She brought with her the same good-hearted spirit, energy and determination she brought when she founded the NHIF, and made Brain Injury a national issue.
Being there with all my people – all the survivors – was moving and empowering, and struck by the spirit, I reminisced on how things had been, way back when. Back then, 35 years ago, I was the only one the NHIF had to call for peer support.
The newly opened office was small but busy. Marilyn reminded me I was the first visitor in that first office.
Look at where we are now
As much as we feel the need now to educate other people about TBI, at least Brain Injury is in our current vocabulary. Thirty five years ago we called it Head Injury, and it was a new frontier in medicine that not many people were aware of.
Walking around this track with all these brave survivors also brought me back to my own journey around a track, forty years ago.
Back then, when I was in the rehabilitation hospital, they would let me go home on weekends so I could spend the time with my family and get some understanding of what the transition to home would be like. Although I was in a wheelchair in the hospital, they would send me home with a cane so I could learn how to walk.
“Although I was in a wheelchair in the hospital, they would send me home with a cane so I could learn how to walk.”
Learning to walk was challenging, and I was discouraged at the stop/start, uneven movement of my attempts. I came up with a theory: if I moved as though I was running, I would have some fluidity to what I was doing. That meant being in motion, pumping my arms and constantly moving forward. My thought was that being fluid would allow my instincts to take over and stop me from thinking and analyzing every little thing I tried to do. Following my instincts would allow my natural balance to take over and take me where I wanted to go: I was sure of it.
My eight year old brother and my father and I went to the high school track, where I ceremoniously threw down my cane and, with my head down and my arms chugging, I began my lap. I felt as though I was running at breakneck speed, but in reality I was only taking baby steps. I did finish, and only fell once.
The pieces that made the walk so special this year was that the lap was done not only with all my fellow survivors and their supporters/caregivers, but also with my now eighty-five year old father, my brother, and my daughter.
We re-enacted that lap made forty years ago.
Lagging behind at first, my daughter and I watched and smiled as my father made his way around the track, walking fluidly and with purpose, just as all those survivors were doing. I got choked up several times, as I sensed the power and determination of all the survivors, and also thought back to my own family and how far we had all come.
Brain Injury is no longer an unknown issue. On many levels it may still be a mystery, but it is something we are all facing head on, some of us because we have to, and others because it is the right thing to do.
We still face many challenges as we work to educate and live our lives, but look where we are now: instead of traveling on a dirt road, all rutted and bumpy, the road has been paved and we are all on our way working to live a fulfilled life.
A long-time survivor, Jeff is the author of “Learning to Live with Yourself after Brain Injury.” You can read more about Jeff and his journey on his blog at www.TBISurvivor.com. This article was reproduced with permission from Jeff Sebell and TBI Hope & Inspiration.