Making Peace, Making Music

By Regina Reid
EpilepsyUSA staff
Posted: August 8, 2003

Not now, that means I need a pause
Not now, that means this instant
Not now, means sorry, no discussion
Not now, means I'm insistent
Not now, means simply I don't owe a single soul excuses
Not now, means see you later when my head's not blowing fuses!

These are lyrics to a song written by Dave Biro. The rest of the song describes not being able to go skating or have a sleepover because of having a seizure. These may not seem like the words of a man in his late 40s, but that's because Biro isn't writing music for his peers. He's writing for young people with epilepsy.

Even though he developed seizures a little later in life, Biro can relate to the feelings of kids with epilepsy who are often confused about their condition and have trouble accepting it.

"It's taken me some 20 years to start accepting my lot, feeling good about myself, 'coming out of the seizure closet,'" Biro said.

On his CD, "Epilepsy, Full ESTEEM Ahead!," Biro weaves rock, swing, calypso and rap into a work of original songs that he hopes will help kids accept themselves as people with epilepsy and thwart the sense of isolation they can feel.

Infection Hard to Identify

Biro developed epilepsy as an adult, after growing up a healthy, energetic and musical boy. He graduated from college and went on to become a professional baritone, singing with some of the top orchestras and for many high-profile events, including an Inaugural Ball for former New Jersey Governor Thomas Kean.

But at age 26, it all changed.

He found himself waging a valiant fight against rapidly-developing symptoms of an infection that would take some time to identify.

"It seemed like I was quickly losing my mind," he said. "Local doctors couldn't diagnose me. One neurologist called me a 'psych job.' When my parents asked if he thought they should get a second opinion, he snapped, 'Your son doesn't need a second opinion, he needs a shrink!'"

A sleep-deprived EEG had not yielded a diagnosis, and the low-grade fever he'd been running hadn't been thought serious, so Biro went home and continued to battle the undetected virus that was infecting his brain.

Soon after that distressing visit, his temperature spiked to 106 degrees.

"I had a grand mal seizure, and it seemed that a second opinion would have indeed been in order," he said. "I was misdiagnosed in another hospital before ending up at New York Presbyterian Hospital, where it was confirmed that I had viral encephalitis."

Biro spent two months in the hospital and was prescribed medication to control the seizures. After several more months of recuperation at his parents' house, he was weaned off the medication and his seizures seemed to stop.

Career Changes

Biro went right back to music, singing and playing guitar professionally and grateful he'd been able to relearn lost skills. However, other musicians laughed at him when, during performances, he'd introduce songs he'd already performed. He wasn't having seizures or taking medication, but his memory had incurred permanent damage, a result of the encephalitis.

"I left music as a career, to find a way of earning a living that didn't constantly test me," he said. "I still had my talent for lyrics and for word play, so I went into advertising where I created some very well-known commercials."

His Folgers Coffee radio spot set a record for listener recall, as did many direct response ads he later created while doing pharmaceutical marketing.

But despite these successes, Biro's seizure disorder and memory problems still lurked, tucked away where he hoped no one would see.

"I started to have what I thought were anxiety attacks," he said. "I couldn't speak and I made mouth motions like a cow chewing its cud. These symptoms turned out to be seizures again. I had to quit working full-time, which played a large part in the failure of my first marriage."

Words as Disappearing Ink

Biro has a very vivid way of describing life with a memory disorder: "having a brain with no Velcro."

"Tell me two things," he said, "and while you're telling me the second thing, I've already forgotten the first. So now I must work for myself as a freelance writer and ad man, and I do radio ads for the anti-smoking movement. I also write kid's music."

His first cassette of original music, "The Cradle Will Rock," was lauded by The New York Times as intelligent, uplifting music that "features playful phrasing and a variety of orchestral arrangements to engage and educate young listeners in a lighthearted but never condescending manner."

"I think that a lot of children's music underestimates kids' intelligence," Biro said. "When I was 9 years old, I was exposed to Tom Lehrer's musical, political poetry. I credit hearing all his polysyllabic wordplay — lyrics I didn't understand at the time — as inspiring my knack as a songwriter."

As his description of living with memory problems is sharp, so is his frustration.

"I forget things as they are being told to me, like disappearing ink," he said. "I get so frustrated by this, embarrassed by the stares of disbelief from people who can't accept that my forgetfulness is medical, who assume that my petit mal seizures and my ruminations are the actions of a nut case."

Loving Wife Keeps Him Going

His wife, Charlotte, definitely understands Biro's challenges, and does what she can to help make his days organized and productive. Her major tool is something Biro calls a "Charminder."

"Every morning she scribbles out for me a list of things I have to do to get me through that day," he said. "These include such ordinary tasks as taking the car in for a repair, going to the market, walking Jack and Cookie (our rescued Greyhound and mixed breed), returning important phone calls and following up on a client's instructions. These 'Charminders' are absolutely indispensable when I have more than one thing on the day's plate."

His plate stays full as he juggles being a husband, a musician and an ambassador for kids with epilepsy. The Epilepsy Foundation of New York City has produced about 1,000 copies of "Full ESTEEM Ahead!", distributed primarily to local neurologists, but Biro hopes this is just a beginning. He's hoping to team up with a corporate sponsor so he can get his music all over the country and meet the kids in person.

"I want to get out there and entertain kids while I'm helping them deal with their problems," he said. "This is particularly important in schools, since most children with the disorder are in public schools, where building self-esteem is more important than ever."

Always thinking of innovative ways to reach kids, Biro has recently written and produced an aria (an opera style vocal production performed by one singer) for children. Based on his greyhound dog, "The Barker of Seville" will be the first selection in a series he's calling, "The Adventures of the Greyhound Pooch-ini."

Hearing Is Believing

Much younger in spirit than in age, Biro possesses a playful, hip energy that he says often surprises the kids who see him sing.

"When I perform live at school assemblies, the kids can't believe that this balding man in his late 40s raps like I do," Biro said.

But, hearing is believing, and Biro's music and life both speak to kids about what they can become once they accept who they are.

For more information on "Epilepsy, Full ESTEEM Ahead!," contact the Epilepsy Foundation of New York City at (212) 633-2930 or via email at main@epilepsynyc.org.