FOR THE TIMES
As concertgoers entered Trinity United Methodist Church in Ewing for a show by musicians Jeffrey Gaines, Gary Hoey and Jann Klose last weekend, they were greeted by an unusual crew for a concert — volunteers from the Epilepsy Foundation of New Jersey, who offered them informational pamphlets about the brain disorder.
Along with statistics about epilepsy, the pamphlets told the story of the late Carolina Miller, whose experience with epilepsy inspired her husband to create the Candlelight Concert series, a set of 50 shows that took place in every state last weekend.
Attendees eagerly placed donations into a bucket and buzzed with anticipation for the music to begin. Eric Miller came forward, thanked the audience for joining in him in honoring Carolina and supporting epilepsy awareness, and offered tips on how to react when someone has a seizure.
Placing something in the person’s mouth is “horribly wrong,” he said. “They can still choke. Be sure to roll them on their side, and make them feel safe.”
Logging the incident for the person is an appreciated courtesy, he said.
The Brazilian-born Carolina Barcelos Carneiro de Oliveira Miller was 25 when she died following an epileptic seizure in August 2011. To honor her memory and bring attention to the disorder, Eric Miller organized a series of concerts across the country with a wide range of performers, including big-name musicians such as Eric Clapton and Rita Coolidge.
“There is nothing more powerful than art, particularly music,” Miller, a 42-year-old Pennington resident, said. “Since it speaks to everyone, I use it to cast a wide net and inform people about epilepsy.”
At the March 23 concert in Ewing, Miller’s speech was followed by remarks from Tony Coelho, a former U.S. Congressman from California.
“Being raised Catholic, my parents believed that I was possessed by the devil and wouldn’t tell anyone about my epilepsy. They were reluctant to take me out in public,” Coelho said. “Rejected by my parents, I wanted to be a Catholic priest, but when they discovered I had epilepsy, I was kicked out.”
Coelho, who now lives in Delaware, said he turned to politics as a vehicle to change the way society views epilepsy, sponsoring the Americans with Disabilities Act and later serving as board chair of the Epilepsy Foundation.
The audience applauded, the musicians took their places on the church’s altar, and attendees excitedly scrambled for smartphones and video recorders to capture the three performers, who were together for the first time on one stage to support epilepsy awareness. The musicians played cover songs and original hits, and the audience cheered and requested songs, singing and clapping.
“Every time I do a show for a cause like this, I always come out with more than I expected,” Hoey told the crowd.
In addition to the weekend series, musicians and comedians performed some 60 additional concerts around the country during the week, centered on a national epilepsy awareness day last Tuesday called Purple Day. Miller, an information technology project coordinator by profession, coordinated the events.
“We need to shift the culture a bit and move the message to overcome epilepsy’s stigma,” he said.
Carolina Miller suffered sudden unexpected death in epilepsy, or SUDEP, which along with prolonged seizures and other seizure-related events, such as drowning, account for about 50,000 deaths annually in the United States, according to Citizens United for Research in Epilepsy. Epilepsy affects 65 million people worldwide.
Carolina was diagnosed with epilepsy in her teenage years, her husband said.
Neurologists were unable to pinpoint a specific cause. She began taking medications to suppress her infrequent seizures, and only disclosed information about it on a “need-to-know” basis to family and friends due to the stigma often associated with the disorder, he said.
The couple married in 2009 in Brazil and later had a reception at Grounds for Sculpture in Hamilton. In the six years Eric and Carolina knew each other, she only had two seizures, the second being fatal, he said.
“One in 10 people experience a seizure in their lifetime, but most of them keep it to themselves because they don’t want to be judged. They experience loneliness as a result of the secrecy,” he said.
The couple had similar tastes in music, and Eric Miller said he has a vivid memory of a moment at a Dan Reed concert in New York City when their eyes connected as they held hands and listened to Reed perform his song “Candlelight” on the piano. The lyrics and the powerful memory inspired the Candlelight Concerts, Miller said.
They began as intimate house concerts in Miller’s living room in Pennington, and were then broadcast online while Miller used a chat window to teach viewers about epilepsy.
This year’s concerts included arena shows by nationally acclaimed touring artists such as Clapton and Coolidge, jazz singer Madeleine Peyroux and younger perfomers like Colbie Caillat and Owl City.
“Clapton responded very quickly, within a day, and was very supportive,” Miller said of the guitar legend, who played shows in Nashville, Oklahoma and New Orleans that focused on epilepsy awareness.
He did not know how much in total has been raised, but said one event in Oklahoma, created by a woman whose son has epilepsy, brought in close to $10,000 through auctions, raffles and donations.
Since Carolina’s death, Miller said he has taken on the role of “super advocate” for epilepsy, reaching out to musicians, comedians and local epilepsy awareness affiliates to organize events where volunteers distribute informational booklets and collect donations in an effort to reach people who would not normally think about the disorder.
Miller said that he plans to continue his work to honor Carolina and remove the stigma from epilepsy. He ran a successful funding campaign using the IndieGoGo crowdfunding site, and plans to climb Mount Kilimanjaro in Africa this August, on the anniversary of Carolina’s death.
For more information, visit candlelightconcert.org, the Epilepsy Foundation at efa.org, Citizens United For Research in Epilepsy at cureepilepsy.org, Team Epilepsy at teamepilepsy.org and Doose Syndrome Epilepsy Alliance at doosesyndrome.org.
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