2014-03-14 / Community

Brain injury patients heard, thanks to area residents

By Sean P. Milligan
Contributing Writer

SOUTH PORTLAND/CAPE ELIZABETH – Walking into Briggs conference room at New England Rehabilitation Hospital of Portland, visitors may notice only half the lights are on. This is done intentionally, as many of the people who visit the office have a light sensitivity and would experience sensory overload from the numerous florescent bulbs.

Those same people are part of a local group of national award-winning volunteers who advocate for patients with brain injuries called Brain Injury Voices.

Founded in April 2010 by Carole Starr and Beverly Bryant, two former teachers who both sustained brain injuries in car accidents, Brain Injury Voices has been awarded the American Hospital Association’s 2014 Hospital Award for Volunteer Excellence in the in-service category. They are amidst fundraising to get all 12 of their members to the ceremony in Washington, D.C., in May.

Brain Injury Voices will hold a benefit with Sparks’ Ark, an animal rescue and caretaking organization, Saturday, March 22 at the Portland Armory. There is a suggested donation of $5. The group will also hold several raffles and a bake sale before May.

Starr and Bryant started the organization after their brain injury support groups had met and exceeded their needs. They wanted to help those in similar situations learn to cope and flourish as they had.

“We grew out of the brain injury support group that meets here at New England Rehab when a group of us realized we didn’t really need support anymore,” said Starr, a Cape Elizabeth resident. “We were ready to give back to other people.”

Through one-on-one mentoring sessions, group members were able to assist those who were in the same situations they had been in. Maryanne Tubbs, a Brain Injury Voices member since its inception and a South Portland resident, described one woman she remembers in particular.

Like Tubbs, this woman was a stroke victim who had aphasia and physical limitations. When her recovery plateaued the woman was transferred from New England Rehab to a nursing home, where Tubbs visited her regularly. Although Tubbs regained her speech, her friend would never fully regain that ability.

“I saw the pictures she had hanging up on the wall and she was a mere shell of herself, but she still had her sense of humor. She still had her values,” Tubbs said through tears.

Brain Injury Voices members have given presentations across the country to advocate for the needs of people with acquired brain injuries. In an effort to make the recovery process even more personal and achievable, they held 153 one-on-one mentoring sessions in addition to the approximately 300 hours of support group meetings they provided in 2013. They awarded 24 scholarships to brain injury survivors and their family members to attend last year’s Maine Brain Injury Conference.

Within the hospital they have started art classes led by member Hilary Zayed, monthly bingo sessions for patients, created a lending library of books pertinent to stroke and brain injuries, and have held numerous fundraisers to benefit the brain injury community in Maine. If this seems like a lot for 12 people to accomplish, that’s because it is.

“That’s a legacy of my fellow co-founder and co-facilitator Beth Bryant: dreaming big,” Starr said. “When we had been a group for less than six months she said, ‘I want us to do four workshops at the annual conference plus the keynote (speech).’ And we did it.”

Bryant died Jan. 25, less than two weeks before Brain Injury Voices received the HAVE award. Bryant was the author of two books, “In Search of Wings” and “To Wherever Oceans Go,” both of which chronicle her journey after the 1990 automobile crash that caused her injury. The books are on sale through Brain Injury Voices with proceeds going toward funding for the trip to Washington, D.C. For more information, see the group’s website, BrainInjuryVoices.org.

Brain Injury Voices continues its mission to bring light to what they describe as an otherwise “invisible” condition. The group hopes the award will provide an even greater platform to educate the world on the needs and emotional conditions of brain injury survivors.

“The idea is, if you have a brain injury you’re going to deteriorate, you’re going to become more and more disabled. That’s not true,” said BI Voices’ newest member, Carolyn Civitarese of South Portland. “We slowly improve. You learn skills and cope.”

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