Brain-injury survivors come to grips with new lives
Email|Print| Text size – + By John Dyer
Globe Correspondent / November 18, 2007
Raymond Burns nodded his head as Peggi Robart spoke, his face expressing relief and gratitude.

“We’re no longer what we used to be,” said Robart, a Newton resident, addressing 14 others around a table at the MetroWest Wellness Center in Framingham. “You’re not going to get back to yourself again. That self is gone.”

Raymond Burns was nodding his head in enthusiastic assent. “Yes!” he agreed.

It was the first time Burns, also a Newton resident, had attended the support group, which is organized by the Brain Injury Association of Massachusetts. It was also the first time he had heard someone else articulate what he had been experiencing for more than a year. In March 2006, Burns was in a car accident that briefly knocked him unconscious. He woke relatively unscathed, though his head had jerked back and forth violently. He thought he was all right, but he was wrong.

“I started doing irrational things right away,” he said. “For example, I refused to go to the hospital. It was stupid.”

The nonprofit Brain Injury Association, based in Westborough, celebrated its 25th anniversary recently. It describes itself as the state’s foremost advocate for brain-injury survivors, which it says is the largest category of disabled people.

Each year, around 44,000 Massachusetts residents suffer traumatic brain injuries, with the causes including falls, car accidents, assaults, sports concussions, and shaken baby syndrome, the association says.

Many of those survivors suffer not only from physical wounds but from the dawning realization that while they often look normal, and retain motor functions and many cognitive abilities, they also are disabled in ways that can strike at the heart of their identities.

“We all have problems people can’t see,” said Muffi Brown of Ashland, a support group participant who installed computers in stores in the 1970s but can no longer type after suffering a stroke 10 years ago. “Some of us can’t read,” she said. “Some of us can.”

Robart joined the support group four years ago, after an electronic sign in an airport shuttle bus fell on her head.

Joining was one of the first steps Burns has taken in accepting that his life has changed dramatically and probably permanently. “I knew I needed to get some help. I’m finally coming to terms with this, but it’s very tough.”

Before his accident, Burns was the CEO of a software development company with 20 employees. In the weeks after the crash, he started losing his train of thought in conversations. He couldn’t organize papers on a desk. Sometimes, reading his own handwriting was impossible. Eventually, he realized that while the rest of his body had recuperated from the accident, the violent jerking had injured his brain.Continued…

Through its support groups and other programs, the Brain Injury Association seeks to educate the public about brain injuries, and how to prevent them, said Arlene Korab, the association’s executive director and a Westborough resident. Her son suffered a brain injury in a car accident in 1980.

“In a split second, lives can change,” she said. “We need to understand the consequences of risk-taking behavior and the importance of prevention.”

Improved expertise in detecting and treating brain injuries has radically changed the nature of the problem, Korab said, adding that doctors know much more about how the brain works than just a few years ago. As a result, brain injuries today are less likely to be fatal than they were a decade ago.

“The medical treatment is so much better. But if you have no quality of life once you survive, you’ve got to do something.”

The association, which counts 6,500 members, regularly lobbies and testifies before Beacon Hill lawmakers on behalf of brain-injury survivors. In 1985, it pushed officials to create the Statewide Head Injury Program, which provided funds and other resources to almost 1,000 brain-injury survivors last year, according to the program’s website. Ten years ago, the association created Brains at Risk, a course that state judges sometimes require people convicted of drunken driving to take to learn about brain injuries resulting from car accidents.

The association also organizes events such as the Oct. 30 Sports Concussions Conference in Marlborough, where doctors and professional football players met to educate high school coaches and others about head injuries among young athletes. It is now organizing veterans groups to help deal with brain-injury survivors coming home from Iraq.

“We never saw brain injuries in Vietnam and the Persian Gulf,” said Carol Callaghan, with the Veterans Outreach Center - MetroWest, a Marlborough-based nonprofit group that provides services for returning troops. “They didn’t know how to look for it.”

Of the 40 Iraq and Afghanistan veterans Callaghan oversees, six suffer from brain injuries, she said. She expects more such injuries to come to light, given that many soldiers have been injured by explosive devices blowing up near or under vehicles, jostling the passengers and creating perfect conditions for head injuries.

One of the first hurdles that survivors and their loved ones have to face is that victims may exhibit symptoms that make them seem mentally ill, such as not being able to concentrate or perform multiple tasks. In reality, however, these are the symptoms of their injuries, and it often takes time to identify them as such.

“There’s a stigma,” said Barbara Webster, a Hopedale resident whose injury resulted from whiplash sustained in a 1991 car accident. “People think you’re crazy.”

Webster learned to write shopping lists in the order items appeared on her route through the supermarket. She explained to her husband that certain sounds, like his rustling a bag of potato chips, were excruciatingly distracting. Over time, her condition steadily improved as she learned how her injury affected her behavior and discovered helpful coping mechanisms. She now leads the association’s group in Framingham.

“I can do quality work, but I can’t do as much. I need to pace myself and use certain strategies,” she said. “You’re re-creating this life you took 20, 30 years to build.”

© Copyright 2007 Globe Newspaper Company.
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