One Small Step for Man, One Giant Leap for TBI Survivors – Jeff Sebell

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.

jeff sebellAbout Jeff Sebell

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.

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