A musical mission across the U.S. to raise epilepsy awareness

Eric Miller lost his wife of less than two years, Carolina, to an epileptic seizure in 2011, at age 26.
Eric Miller lost his wife of less than two years, Carolina, to an epileptic seizure in 2011, at age 26. (MICHAEL VITEZ / Staff)
Posted: March 23, 2013

Eric Miller felt he had waited his whole life for Carolina. "She was exceptional by every measure," he said, "smart, full of life, beautiful."

When she died, suddenly, from an epileptic seizure in August 2011, at age 26 and not even two years after their wedding, he was driven to do something in her memory, to find meaning in his grief.

So he set out to try something a tad crazy, arranging 50 concerts in 50 states this weekend - including by guitar great Eric Clapton - all to raise epilepsy awareness.

His goal is less to raise money than to create a complete cultural shift: to help people understand epileptic seizures can be fatal, to eliminate all stigma from epilepsy, which he described as an interruption in the electricity of the brain. More focus, he says, will lead to more funding and research, and a cure.

"Carolina didn't know it could be fatal," he said from Newtown, Bucks County, where he works as an IT project manager for an environmental consultant. "If all this could prevent one person from experiencing a loss, it would be a success."

Miller, 42, started this effort four months ago, borrowing the idea from folksinger Catie Curtis, who tried it for another cause, although she had an organization behind her and a budget. Miller is largely on his own. He says he will sleep in April when it's all over.

Many of the concerts were already scheduled, and he approached the artists or their managers and asked if he could put a table with information at the venue. Clapton's manager responded in a day: "Eric would be honored . . ."

Many will also be house concerts, organized by supporters of epilepsy awareness. Miller has 111 concerts scheduled in 49 states - he couldn't get Nevada. These include:

Clapton in New Orleans, Supertramp's Roger Hodgson in Clearwater, Fla., jazz singer Madeleine Peyroux at Lincoln Center in New York, and pop/country vocalist Rita Coolidge with the Dayton Orchestra in Ohio.

Concerts here include the alternative rock band Garbage on Saturday at the Electric Factory and the David Bromberg Quartet on Sunday at the Colonial Theater in Phoenixville.

"Our very own much beloved Eric Avery was diagnosed as an epileptic as a child so this cause is very dear to our hearts!" the band Garbage posted Wednesday on its website.

Miller will also be hosting a house concert featuring Gary Hoey, Jeffrey Gaines, and Jann Klose on Saturday at Trinity United Methodist Church in Ewing, N.J. For a list of concerts go to http://www.candlelightconcert.org/50.asp.

 Miller hopes some artists will promote the cause from the stage, but he has received great support from local chapters of national epilepsy groups, and just handing out information at all these venues, he says, is a huge start. He plans to make this an annual event.

"We're making noise where there was none previously," he said.

His beloved Carolina was from Brazil, and he met her on a vacation to the United States. Her full name was Carolina Barcelos Carneiro de Oliveira.

"I ruined it with Miller at the end," he jokes.

They dated on two continents, married, and moved to Hamilton, N.J. One of their first dates was to a Dan Reed concert, and Miller recalls holding her hand, listening to the song "Candlelight," and gazing on her face. "It was one of those moments that I hope everyone has," he said.

The song and moment are why he named this effort Candlelight Concerts for Epilepsy Awareness. The lyrics, he said, go like this:

Everyone's got a pain inside

Everyone's got their own private hell ...

You're not in this fight alone

You see the candlelight, baby, you are home.

In the six years he knew her, Carolina had two seizures - the second was fatal. About 50,000 people a year die from this, known as Sudden Unexpected Death in Epilepsy, or SUDEP. One in 26 Americans has epileptic seizures; people from the past and present are thought to include Michelangelo, Vincent van Gogh, and U.S. Supreme Court Chief Justice John Roberts.

Carolina died in bed. "I was tragically not there when she had her fatal seizure," Miller says. "Every day I wish I had been there for that awful moment. I may have been able to save her."

If you know how to react correctly, he says, you can save lives during a seizure: Turn the individuals on their side. Do not put something in their mouth. "That is a horribly incorrect myth," he says. Make them comfortable. Protect them from harm and stay with them. If it lasts more than five minutes, call 911.

Miller, who lives in Pennington, N.J., says his next big project will be to climb Mount Kilimanjaro, Africa's highest peak, to raise epilepsy awareness.

"It's not easy," he says of the trek, "but neither is booking 50 concerts in 50 states."

Contact Michael Vitez

at 215-854-5639, mvitez@phillynews.com or on Twitter @michaelvitez.

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