Members of the Aphasia Tones, a choir for people with aphasia, perform at their end-of-semester event at CSU East Bay in Hayward. (Natalia Estrada/KQED)
The day before Thanksgiving in 2009, college student Drew Sperling collapsed in his San Luis Obispo apartment. He was 21 years old and having a stroke.
Instead of meeting their son that day for golf, Drew’s parents met him at the hospital, where he was in a medically induced coma to allow his brain to heal.
"We brought his computer into the room and we started to play music that he had recorded on his computer," his father, Frank, remembers. "And at one point as Drew started to come out of his coma you could see his lips move in time to the music. And that was our first indication that he was going to be okay."
Six years later Drew’s made remarkable progress. Like many stroke survivors, however, he has a condition called aphasia, which makes communication complicated.
In the hospital and in the months that followed, Drew slowly regained his speech. At first, though, he was only able to say three words: no, go, and a swear word. Thoughts would form clearly in his mind but come out as some other variation of language. For the second time in his life, Drew had to learn to speak.
Today Drew's communicating with near-fluency. One thing that has helped him do that is song.
Drew is a member of a choir called the Aphasia Tones, based at California State University, East Bay, in Hayward.
Aphasia is a language impairment caused by brain injury, not an intellectual disability. The majority of people who have aphasia acquire it through stroke, but it can also be caused by other serious brain injuries, like car accidents or military combat. The disorder interrupts all aspects of communication, not just speaking, but reading, writing and listening.
About 2 million people in the U.S. have it, making it more common than Parkinson's Disease, but less well-known.
All 25 members of the Aphasia Tones have the disorder. The choir began in 2011 and is part of a larger aphasia treatment program at the university. Program director Ellen Bernstein-Ellis says choirs for people with aphasia are catching on globally, too. She regularly collaborates with an aphasia choir director in Australia.
Carmen Preston is another member of the Aphasia Tones. She’s in her mid-60s and had a stroke six years ago.
"Aphasia can lock you up in your body," she says. "When I practice for myself, singing is much better. Then I can hear it in my ears how to say it -- the words."
She demonstrates by saying the word "participate." It's challenging to get out, and she stutters a bit. She then sings the word three times. It flows.
Nidhi Mahendra is an associate professor of speech pathology at CSU, East Bay and works with program participants. She says there are several factors at play that make singing easier than speaking for people with aphasia.
"You’re thinking about the music rather than the specific words and that actually allows the words to flow better," Mahendra says.
There's also the help of the rhythm and repetition involved in singing, she says. "If that’s not enough, there’s the other part about emotions. We sing in the shower or we hum to ourselves. It usually does put us in a good mood."
Today, the Aphasia Tones sit in a campus classroom, facing an audience of mostly friends and family at this end-of-semester performance. They wear matching black polo shirts, the choir’s name embroidered in gold. The choir sings songs with messages of survival or aphasia-awareness, like Katy Perry's "Roar" or "This Land is Your Land," with lyrics rewritten to educate audiences about aphasia.
In the audience, Frank Sperling watches his son Drew.
"They continue to get better and better," Frank Sperling says, welling up with emotion. "It touches on your heart to hear these people and to hear Drew in particular perform."
Being in the choir offers a meaningful way to step back into a life when everything you’ve identified with disappears. It gives members a purpose, and a community.
"I like the interaction," Drew says. "I really like having a choir. I really like to sing. Honestly it’s fantastic."
After years with the Aphasia Tones, Drew recently joined another choir -- a community one -- where he’s the only one with aphasia.
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