Health & Medicine

Epilepsy patient uses song to thank Lexington doctor who preserved her ability to sing

UK epilepsy patient Celeste Shearer, left, and Dr. Siddharth Kapoor, right, were interviewed after she sang in the lobby of UK HealthCare's Albert B. Chandler Hospital in Lexington, Ky., Wednesday, November 26 2014. Celeste Shearer, from Hart Co., beat leukemia at age 5, only to develop crippling seizures as a teen. UK physicians performed surgery to remove the diseased part of her brain. Celeste is  now seizure free and a freshman at NKU on a fine arts scholarship and as a thank you, performed a concert for her doctors and patients.  Photo by Charles Bertram | Staff
UK epilepsy patient Celeste Shearer, left, and Dr. Siddharth Kapoor, right, were interviewed after she sang in the lobby of UK HealthCare's Albert B. Chandler Hospital in Lexington, Ky., Wednesday, November 26 2014. Celeste Shearer, from Hart Co., beat leukemia at age 5, only to develop crippling seizures as a teen. UK physicians performed surgery to remove the diseased part of her brain. Celeste is now seizure free and a freshman at NKU on a fine arts scholarship and as a thank you, performed a concert for her doctors and patients. Photo by Charles Bertram | Staff Herald-Leader

Celeste Shearer chose the Shel Silverstein poem Listen to the Mustn'ts and the Green Day song Good Riddance (Time of Your Life) to thank her doctor for taking the extra steps necessary to preserve Shearer's most prized gift — her singing voice.

"I can't put into words what UK has done for me," she said, just before launching into a passionate but brief performance. "I could have lost my singing voice and my dream."

An unexpectedly deep alto erupted from Shearer, who is slight and fair, as she belted out the Green Day song a cappella: "Time grasps you by the wrist, directs you where to go."

As Shearer sang, the tune echoed through the massive lobby of the University of Kentucky Chandler Hospital, as did the applause from the small audience gathered to listen.

On the day before Thanksgiving, Shearer, a performing arts major at Northern Kentucky University, held a short concert to thank her doctor and medical team and to raise awareness about the surgical options for dealing with epilepsy.

November is also Epilepsy Awareness Month.

What brought the 19-year-old Hart County native to this performance?

Chemotherapy that helped Shearer beat leukemia when she was 5 scarred portions of her brain, leaving her with epilepsy. Her life, Shearer said, was overtaken by seizures. She couldn't do the things teens do. She couldn't have sleepovers with her friends. She had to check in via cellphone with her parents on the hour.

She took tremendous amounts of medicine that made her tired and sometimes depressed, and made eating or putting on weight difficult.

Removing part of her brain was determined to be the best option to combat the debilitating seizures, said Dr. Siddharth Kapoor, director of UK's Epilepsy Network. Typically, he said, doctors remove a sizable portion of the right brain.

After talking with Shearer, who was concerned that surgery might rob her of her ability to sing, Kapoor and his team began a series of tests to locate where Shearer's brain processed music. "Finding the music" is how Kapoor described the testing. While it was unusual to embark on the extensive testing, focusing on what matters most to the patient is crucial to the process, he said.

Over nine months through a series of complex, sometimes painful tests, the team determined exactly where Shearer held her songs by watching her brain activity while she sang and listened to music.

Kapoor said Shearer was to be commended for being willing to share her story with the public. Even in 2014, he said, having epilepsy can be a stigma. Patients are reluctant to talk about their disease.

Many, he said, have suffered so long from seizures that they have lost hope and aren't aware that surgery might be an option.

Since March 2013, when Shearer had surgery, she has not had a seizure. She takes a fourth of the medicine she once did. She calls her first summer following the surgery "my first summer as a teenager."

She stayed up late talking to her best friend, watching movies and texting. If she missed a dose of medicine she didn't have to panic. Her mom and dad stopped needing her to check in every hour.

If she remains seizure-free on limited medication into next year, she might be able to get off medicine altogether.

Kapoor said in Shearer's case he is hoping for a cure. Her willingness to withstand such rigorous testing also might also help other patients.

There have been rare cases in which other hospitals have used similar testing to deal with maintaining musical ability, but Shearer's case could prove useful to future patients. "We are standing on the shoulders of others," Kapoor said. "But I do believe we have also advanced the cause.

As for Shearer, never has a young woman been so glad to sweat.

The anti-seizure medication compromised her body's ability to regulate heat. "I didn't sweat," she said, "but now I do.

"Now I am like a normal young adult."

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