NPR 07-26:After Years of Stigma, Prayers Answered我与癫痫病魔斗争的难忘

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Gloria Mengual was treated differently because of epilepsy; one day changed that

On Friday mornings, we bring you StoryCorps, the project that collects your stories across the country. And today we will meet Gloria Mengual, who described one thing that always set her apart. She was diagnosed with temporal lobe¹ epilepsy when she was 5 years old. That caused seizures³, multiple seizures, sometimes on the same day. And as Gloria explains to her partner Charles Gregory, epilepsy colored much of her childhood.

When I was 12 years old, I had a teacher in her first or second year of teaching. And I had a seizure² in her class. My seizures didn't last very long, maybe a minute. But within that minute she managed to get all 20 something other students out of the classroom. And I was sitting there in my desk. And I looked over to the doorway⁴ of the classroom. And I could see the teacher peeking⁵ in with this scared look on her face. And I saw a couple of my classmates' heads kind of under her face and over her face. And my math book was on the floor, and so was a pencil. And all these desks were empty. That image stayed in my head for years.

In your family, how did they respond to your seizures as you were growing up?

I’d be coming out of a seizure and I’d hear my father saying, “Why does this have to happen to her? What did we do wrong?” And my mother would often be praying over me or putting holy water on my forehead. She was determined⁶ to find me the best in terms of medicine. And there was always this hope on her part that her little girl was going to find a cure. So I would see tons of doctors and they tried many medications. And when I was in my 20s, they suggested that I would be a candidate for a brain surgery.

But back then in 83 when I had the surgery, it was fairly new. And my mother, after all those years of trying to get me cured, the thought of them opening up her daughter’s head scared the hell out of her. And I don’t think she could bear the thought of losing me. So, that morning, she begged me not to do it. And I looked at her, I kissed her forehead, and I said, “Mommy, get out of the room.” It was a 7-hour surgery. I remember lying in the hospital room for 3 weeks. Man, I’ve never prayed so much in my life.

How has your life changed since that surgery?

It is completely different. You know, I’ve gone from somebody who's shy and withdrawn⁷ and scared of when I’d have the next seizure. And now, as the whole world is open to me.

That’s Gloria Mengual with Charles Gregory at a SotryCorps booth in Hartford, Connecticut. Because of the surgery Gloria no longer has seizures. Her StoryCorps interview will be archived along with all the others in the Library of Congress. And you can subscribe⁸ to the projects' Podcast by going to NPR.org.