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Community Corner

BHS Senior Concert Examines Two Lives Touched by Pain

A recital celebrates a family's triumph over debilitating conditions.

 

Branford High School senior Sarah Talbott pulls out the piano bench and takes a few battered pages of sheet music from the small storage space inside.

"This is my favorite piece of music," she says, and places a selection from the score of the film Prince of Egypt on the music stand. She's practicing, getting ready for her moment in the spotlight. On Friday, she's performing her senior project, an original piece of music called

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 "It's my first time really writing a song, going off of nothing. But I'm one of those people who's always writing a song in their head," she says.

Talbott is a music lover - she says she "lives, breathes, and sleeps music" - and the concert is a big moment for her. It's a chance for her to tell two stories. Because both Sarah and her mother, Deborah, deal with debilitating conditions. They're the kind a lot of people can't imagine. In fact, most people don't know they exist.

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In 2007, Sarah was diagnosed with RSD -- Reflex Sympathetic Dystrophy. It's a neurological condition that causes intense pain in her legs, coupled with blinding migraines. The same year, her mother was diagnosed with a traumatic brain injury as the result of a 2002 car accident. Both had lived with the conditions for years in Illinois, where Deborah worked as a pastor in the United Methodist Church, without receiving the proper treatment. In fact, Deborah didn't even know she'd received a brain injury. She remembers the shock of learning how serious her injuries were when she met a woman who'd gone through a similar accident.

"She'd had the correct care from the very beginning, and was describing her accident and her injuries," Deborah says. "And I said, 'Oh, that's what that is!' It was the first time I'd had any idea I had paralysis. I just hadn't known. I'd just kept working through it because I didn't know any other way."

 

Pulling Through, Thanks to Top Care and Good Friends

The family -- Deborah, her husband Brent, and their children, Sarah, Amos and Ally -- relocated to Branford in 2007. Sarah started receiving therapy at Boston's Pediatric Pain Rehabilitation Center, a top program for treating RSD. When she started the program, she was in a dark place -- barely able to walk and virtually bedridden by the pain. She spent months in and out of school, missing most of several semesters.

"It was really hard at the beginning," she says. "I don't think I spent more than a day at the hospital not crying. The pain was so bad. But I knew I wanted to do it. I wanted to go back to school to be with my friends."

And with the help of sympathetic staff and some very good friends in Boston, she started the huge task of bringing her life back to normal. She smiles when she remembers her best friend, Sammy -- the two met at a point when neither could walk and both looked at the future bleakly.

"She gave me the strength to want to keep going forward, because she wanted to go forward," Sarah says. "We held onto each other every time we walked. And she took her first steps while I was there. It was literally like watching a baby walk for the first time. And that's truly what made me realize I could do this. If she can do it, I can."

Sarah says Sammy felt the same -- and the two fed off each other's ambition. Then the day came when Sarah had to fight through the pain and literally get back on her feet.

"And I don't know how I did it, and I don't know if I'll ever be able to describe it," she says. "I just did it. It was kind of like my brain shut off for a minute, and my body took over. And then when my brain came back on, it was just like ... Wow. You're walking."

She laughs.

"And then I was running."

The move improved Deborah's life too. Her condition causes painful spasms to roll through her body -- spasms she says are getting worse and more frequent. She takes every opportunity she can to walk on her own, using walking sticks and her family's help. But as time passed, doctors told her she would need to find another way to get around.

"If I'm in a chair, it's safer for everybody," she says.

Finally, last year, she got a motorized wheelchair that she says has revolutionized her life, allowing her to get outside to see her daughter's musical performances and even participate in this year's Memorial Day Parade.

"The fact that I can actually get out, that I can get around town and support my children ... It's been awesome."

But it's been expensive.

"After mom got the wheelchair, we needed to find a way to raise money," Sarah says. "So I thought, how about we have a concert?"

So Sarah took the idea to her music teachers at BHS, Cathyann Roding and Ted Samodel. They loved it. Sarah hopes the proceeds from the concert can go toward building a proper wheelchair ramp for the family's house. (The ramp Deborah uses now simply isn't effective enough to allow her to get inside and outside easily.) But, she says, the concert is also a powerful tool to let others know not all pain can be easily spotted.

 

Hidden Pain

While the effects of Deborah's injuries are visible, Sarah's condition is internal - you wouldn't know what she's dealing with unless she told you. And that's the most important message she hopes to pass on.

For a senior project, Sarah created a video to tell the family's story. Set to "Not Alone" by Red, the video is a montage of photos interspersed with a message for the viewer: "Do you ever think about the pain you can't see?"

They've both gone through their share of pain. But in talking to Sarah and Deborah, I was struck by how much they smiled, and even laughed, when talking candidly about the worst of it. Of course, music has played a huge role.

"Sarah has always used music to calm herself down," Deborah says. "The music program at the high school has been fantastic for Sarah and our whole family. The concert is kind of a gift back to them, to say thank you. Music has been a way we've gotten through this."

Sarah isn't done giving back for all music has done for her. Because, back on her feet, working a job at Kohl's and on the doorstep of high school graduation, Sarah now has a dream for the future.

"I don't know if I'll be able to go," she says. "But I hope I can. I hope I can go to Nazareth College in Rochester, New York, to get my Master's in Music Therapy."

Music therapy. It's the idea that music can help inspire others who find themselves facing problems like those Sarah and her mother have faced. If she achieves her dream and goes to Nazareth, Sarah will be able to help those who, like her, find themselves having to push through pain that can seem impossible, insurmountable.

"It just makes sense," she says, "Because that's truly what saved my life. Music saved my life."

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