‘Like there is a different person inside’: After brain injury, Cape Elizabeth author helps others cope

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CAPE ELIZABETH — Eighteen years ago, Carole Starr said goodbye to the life she knew and hello to a new part of herself she now calls “Brainhilda.”

“Brainhilda” is the left side of Starr’s brain, a separate entity from the rest of her body. She can’t control when it is going to act up; it is as if Starr’s brain has had a mind of its own since July 6, 1999.

That’s when she was broadsided by another driver going about 50 mph.

“At first I thought that I had escaped with just whiplash,” Starr said.

But after weeks of doctor’s appointments and testing, she was diagnosed with traumatic brain injury.

“(Naming my injury) was kind of my way of saying, ‘I am not my brain injury,'” Starr said. “It really feels like there is a different person inside.”

It took about six weeks after the accident for Starr’s physical injuries to heal and 18 years to find the words to express how she has come to accept her injury. They’re contained in her book, “To Root & To Rise: Accepting Brain Injury,” which was released on Amazon.com at the end of May and officially launched July 11.

It wasn’t until after Starr recovered physically and attempted to return to work that she realized something was terribly wrong.

Though Starr’s injury is technically considered “mild” – because TBIs are characterized by the amount of time someone is unconscious – there is nothing minor about the impact it has had on her life.

“I was only unconscious for a minute or two, but I am going to have symptoms (of TBI) for the rest of my life,” Starr said. “It’s a big misnomer.”

Starr’s most severe symptoms are mental fatigue and hyperacusis, which is an extreme sensitivity to sound.

“I used to teach workplace education at local organizations and businesses … but I found myself forgetting students’ names and losing track of lesson plans,” Starr said.

She also used to sing and play the violin.

“I tried to go back to music rehearsals, (but) the sound would overwhelm me,” Starr said. “I couldn’t do music anymore. That was a tremendous loss for me.”

She now wears ear plugs on a daily basis. Starr recalls one fireworks show in Jackson, New Hampshire, that sent her into a five-minute state of shock, even with earplugs and headphones.

The toll “Brainhilda” took on Starr’s life was far from mild.

“Two hours of teaching would put me on the couch or bed for two days,” she said. “(And) certain sounds incapacitate me.”

According to Starr, 80 to 85 percent of people who suffer from mild brain injuries will make a full recovery.

“For whatever reason,” she said, “I’m in that 15 to 20 percent minority that won’t.”

The problem with a “mild” brain injury is that most don’t show up on an MRI or CAT scan. It took weeks for doctors to figure out what was wrong.

“It was such a confusing time … I kept thinking ‘why can’t I just wake up normal,'” Starr said. “I had my share of people who didn’t believe me because I looked just fine.”

There were many times when Starr thought her TBI would “break her.”

“It’s like the grief when someone dies, but it is worse, because you are the one who has died,” Starr said. Though the grief has subsided, Starr still struggles every day with her TBI and its limitations.

“It’s a simpler life than it used to be,” Starr said. “I’ve gotten to the point where I don’t like it, but I do accept it.”

Though she was never able to return to work or her music, Starr has found a new sense of community by facilitating Brain Injury Voices, an active volunteer group of brain injury survivors in Maine.

Along with support and help from her family, friends and peers, Starr said part of coping with her grief has been learning to find humor in her injury and acknowledging that when “Brainhilda” says it is time to slow down and rest, it is time to slow down and rest, no matter where she is.

“If I work with my brain and honor the fatigue, I get to do more,” she said. “When I push too hard … I lose more than I gain.”

Starr laughed during a July 14 interview when she recalled naps she has taken in Maine Sen. Angus King’s conference room in Washington, D.C.; outside the Canadian Potato Museum; in the bedding department in Ikea; in the coffin display room at a funeral home, and at Panera restaurants in three or four states.

She focuses on taking every day as it comes and moving forward by setting small goals for herself. One not-so-small goal Starr achieved was finishing her book, a compilation of essays she composed over the last 12 years, in the same year she turned 50.

“I like to say it takes time in life to form wisdom and it takes time as a brain injury survivor to form wisdom. I think I’m at that point now,” Starr said. “There were people in my life who were beacons of light to me … and I want to be a beacon to someone else.”

And she seems to have already become one. Starr received a call on July 10 from a mother in New York whose son suffered from a traumatic brain injury and had found comfort and inspiration from reading her book.

“It was so gratifying,” Starr said. “That is why I wrote (this book). … Helping people through their journey is such an honor and a privilege.”

Jocelyn Van Saun can be reached at 781-3661, ext. 183 or jvansaun@theforecaster.net. Follow her on Twitter @JocelynVanSaun.

Carolle Starr, of Cape Elizabeth, speaks about her experience with traumatic brain injury at the July 11 launch of her book, “To Root and To Rise: Accepting Brain Injury.”

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