Brain Injury Voices: Paying It Forward

Nine people sit around the table. They were all chatting when I entered the room and stopped to acknowledge and welcome me as I sat down. I look at them as a group and then as individuals. I notice nothing unusual. I tell you this because looking like ordinary people, while mostly a good thing, can be frustrating to this particular group. You see, each of them has sustained a brain injury, either because of an accident or a non-traumatic event such as a stroke. They don’t look injured, but they are.

Their personal journeys to recovery have been convoluted and challenging, and to this day they must all use various strategies to manage lingering issues, like extreme mental fatigue, sensitivity to noise or light, loss of balance, inability to speak clearly, and problems with memory and organizational skills. But outwardly they look fine and most people don’t understand what they’re up against.

These people at the table are members of Brain Injury Voices. They belong to the brain injury support group at New England Rehabilitation Hospital of Portland and formed Brain Injury Voices a few years ago because they wanted to use their “knowledge and experiences to pay it forward.” Co-facilitator Carole Starr, who was injured in a car accident, says their mission is three-fold: “We provide education, advocacy, and support.”

Group photo of Brain Injury Voices in Maine

L-R Rorie Lee, Herb Williams, Marc Hebert, Maryanne Tubbs, Beverley Bryant, Carole Starr, Paula Sparks, Judi Klingensmith, and Hilary Zayed

The list of services Brain Injury Voices offers is rather astonishing.

  • Provide peer visits for inpatient brain injury survivors
  • Provide peer support for outpatient brain injury survivors
  • Connect with inpatient and outpatient brain injury clinical teams
  • Participate in provider and community-based organizations
  • Offer information on brain injury to various government, professional and educational organizations
  • Develop brain injury workshops
  • Participate on brain injury panels
  • Offer organizational/educational/professional keynote presentations
  • Mentor new members of brain injury support groups
  • Seek out guest speakers for brain injury support groups when needed
  • Attend service trainings in member’s interest/expertise
  • Use technology to connect with other brain injury survivors

Why do they devote themselves to all these tasks when they have more than enough to cope with already? Maryanne Tubbs, who suffered a stroke, says, “We are a repository of information. By coming together we are a powerful group. And by helping others, it helps us get out of own injuries.”

“We all have different passions, different strengths and gifts to give,” adds Judi Klingensmith, who suffered the first of several head injuries at the age of 12, and her most recent three years ago when she fell on the ice.

“A brain injury can restrict your life,” concludes Carole. “It can make your life seem small. Being part of Brain Injury Voices has expanded my life.”

A year of many accomplishments
Last year the group spent hundreds of hours providing peer mentoring to other people with brain injuries. Kathy Kroll, a recreational therapist at New England Rehab, says from the hospital’s point of view, Brain Injury Voices is a huge benefit. “Therapists can show great empathy to patients, but they’ve lived it and can say, ‘I understand.’ The hospital recognizes and embraces the group. Without Brain Injury Voices we wouldn’t give the quality of care that we do. They are part of our treatment team.”

They also delivered several presentations, including two at an October Maine Brain Injury Conference — one on Grief and Loss and the other on Work and Travel. They wrote to members of Congress in support of brain injury rehabilitation services. They sent a package of art and writing supplies to Congresswoman Gabrielle Giffords. And they were fashion models at the Jazzy Johnny’s Fashion Show.

Their mission is to educate, advocate, and support. I think they should add inspire. That’s certainly what they do to me — as a group and as individuals. Want a little more inspiration? Hilary Zayed was injured when she fell off her horse. Look at her artwork. Beverley Bryant was in a car accident and then had a stroke. She’s written two books. All the members have stories to tell about their personal journeys to recovery.

Review the list of services Brain Injury Voices provides at no cost and consider inviting members to do what they do best — educate, advocate, support, and inspire.

For more information about Brain Injury Voices contact:
Carole Starr, co-facilitator
braininjuryvoices@maine.rr.com
(207) 200-4210