Sharing the Spotlight

When Rebecca Jo Acero talks about competing in pageants, it is with the excitement of a teenager and the emerging grace of a young woman—a fitting blend for a 19-year-old. There’s the energy of competition, the backstage camaraderie with the other contestants, and of course, the nerves. “Pageants are supposed to make you nervous, to make you work harder, and to rise above what you would normally do,” Acero says. “It’s a performance. And at the end it’s like, ‘That’s it? It’s over? Let’s go again!’”

For Acero, who lives in Phoenix and won Miss Arizona United Continents last year, pageants are about more than just staying poised under pressure. They have been a chance to showcase all that she has overcome. Acero has been living with epilepsy for nearly seven years, and her platform when she competes is epilepsy awareness. Her personal story—going from a seizure-free childhood to having seizures in her high school cafeteria—is one she is determined to share with as wide an audience as possible. 

At age 12, Acero suffered her first seizure in the shower. Minnie Acero, Acero’s mother, says her “spider sense” went off: She broke down the locked bathroom door, only to find her daughter unconscious, half-submerged in water, but otherwise okay. A few weeks later, and after another seizure, Acero was diagnosed with epilepsy.

As mother and daughter armed themselves with knowledge about the condition, fear quickly turned to empowerment. “My way of coping was giving everybody who had contact with my daughter as much information as possible,” says Minnie.

“Rebecca is a true example of taking a negative experience and making it positive, not only for her, but for those around her,” says Susan Agostini, the facilitator of a support group that Acero and Minnie joined after the diagnosis. Agostini continues, “She’s not afraid of talking to people and sharing her knowledge. She’s determined to help people and has embraced her disorder in a way that I’ve never seen before.”

The idea of serving others took tangible form for Acero shortly after her diagnosis in 2012. Realizing she could no longer celebrate the Fourth of July by watching fireworks that year—since they might trigger a seizure—Acero asked her mother if they could pass out water and food to the homeless instead. The tradition continued each summer, gradually expanding from a handful of friends and family to a group of 30 volunteers at this year’s event.

Whether at pageants, as a volunteer for the Epilepsy Foundation of Arizona, sharing her journey “Unstoppable Me” on her Facebook page or walking runways as a professional model, Acero is always finding ways to speak out. She’s also deeply connected to her Filipino heritage, and she talks to the Asian Pacific Islander community to help debunk myths about seizures and problems immigrants have accessing resources and care. “I figured if I won Miss Arizona and went on to nationals,” says Acero, “I would get the word out to even more people about the topic.”

“The simple way Rebecca states, ‘I have epilepsy, I have seizures,’ helps eliminate certain misconceptions about the disorder,” says Minnie. “Mainly, that having epilepsy means you are somehow ‘different’ or that you can’t still follow your dreams.”  

Acero’s willingness to talk about her condition and battle the stigma of the disorder makes her a rarity, says Suzanne Matsumori, executive director of the Epilepsy Foundation of Arizona. Teens who have the disease tend to hide it because they are embarrassed or ashamed, Matsumori says. But seeing Acero at an event representing epilepsy awareness produces a different reaction: “Her peers are drawn to her,” says Matsumori. “Hearing her talk about her seizures allows them to open up and accept their epilepsy as well.”

Despite her accomplishments, Acero still has moments of self-doubt. One such moment occurred in 2015 while Acero was on stage competing in the Miss Teen Earth Arizona pageant. Suspecting she was about to have a seizure, which she did soon after, Acero quickly left the stage, but with as much grace and poise as she could muster. “I walked off smiling,” Acero says—a display of courage that epitomizes what she hopes to communicate: Stay positive and keep your head up.

Originally printed in EpilepsyAdvocate, Fall 2018