Support Groups

NERHP Brain Injury Support Group's Voice of Life-Changing Experience Best Teacher

A quick internet search reveals all sorts of information on the causes of brain injury, types of brain injury, age categories, treatment options, prognosis opinions, data, numbers and definitions. But why are there so few answers to the questions brain injury survivors and their care givers have addressing the side-effects of brain injury years after their injuries occurred?

People with brain injuries and their care givers who attend the monthly Brain Injury Support Group at New England Rehabilitation Hospital express their frustrations of not having answers to their questions and not knowing where to go for help:

"Why didn't my oncologist explain that I would experience forgetfulness and disorientation years after I completed my chemo?"

My bouts of agitation seem to come out of nowhere. How can I explain this to my wife when I don't know why I'm even agitated?"

"I get lots of rest, but am always tired. I get overwhelmed when people around me are all taking at once. My family thinks I'm faking it because my brain injury was 4 years ago. Why can't anyone understand that I don't know why I act this way?"

"Will my husband ever be the same person that I married 40 years ago?"

"How do I know if my daughter's behavior is the result of her brain injury, or that she is just acting like a teenager?"

"How do I accept that this is my new life, when I can recall some of what I used to be?"

"I'm just me. I don't even remember who I used to be, but my mom does."

Support group member Beverly Bryant's advice is probably the best. "We have to be the ones to get the message out there about what we are experiencing. We need to communicate what we are feeling, emotionally and physically, to our families, our friends, and most importantly to our doctors. We have to advocate on our own behalf."

Bev's brain injury occurred over 20 years ago. She has written 2 books of her journey through rehabilitation in order to help not only herself but others who are trying to deal with the every day side-effects after the trauma. Her breakthrough occurred after she wrote a letter saying good-by to her old "self." She is an international speaker on brain injury and her books are required reading at the University of Southern Maine.

Carole Starr sustained a brain injury from a car accident over nine years ago. She was self-employed as a contracted teacher through USM and the Maine Community College network where corporations would request various education topics to enhance their employees' skills. She played classical violin and sang high soprano in community groups. All that changed. "My own journey has taken me on a road I never could have foreseen and to lows I didn't know existed. But, I've also found courage and insight I didn't know I had." Carole will be the keynote speaker at this year's Brain Injury Association of Maine's annual conference.

These are just two of a larger group of remarkable brain injury survivors who attend New England Rehabilitation Hospital's Brain Injury Support Group and who feel passionately about helping others recognize that there is life after a brain injury. They are invaluable to educating the community, being available as "peer visitors" to new brain injury patients and families and giving back by helping those who are in search of their lost spirit. Together they are trying to work through the questions where there just are no definitive answers.