Even Seizures Can't Slow This Sixth-Grader: 'Nothing Can Stop Me!'

Feb 12, 2016
Originally published on February 12, 2016 2:22 pm

Last spring, Benny Smith began having epileptic seizures. In his fifth-grade English class, he fell out of his chair and found he couldn't move. It soon got so bad for the 11-year-old, in fact, that his falls even led to several concussions.

And when he'd wake up, he'd feel terrible, too — "a bit like a hangover," Benny tells his mother, Christine Ristaino, on a recent visit to StoryCorps.

Just don't ask him what a hangover feels like.

"You told it to me!" he tells her.

After a while, the situation made it unsafe for him to be at school. He spent much of the first half of this school year — sixth grade — being tutored at home. He returned to the classroom last month.

Still, despite the interruptions, Benny says his love of science hasn't stopped. He's had a passion for the subject since he was 4, and he says his seizures haven't made any difference.

"Nothing can stop me!" he says. "I've got a yearning. It's like the call of the sirens from Odysseus. But instead of flesh-eating monsters, it's a — like a treasure-trove of knowledge."

He's not kidding. In fact, at one point his parents took him to a counselor and remarked that Benny never sleeps. So, the counselor asked him: What does he think about at night?

The counselor thought it was anxiety. Instead, Benny's answer was, "Well, you know, I think about what it would be like to go to the edge of the universe and look out."

It must be incomprehensible, Benny says.

Recently, with his seizures, Benny has been the focal point of the family, but he says he'd like for that to change. In fact, when his mom asks what he'd like from the future, he says he'd like to see his sister start getting more attention from his parents.

That's not to say things haven't been hard on Benny, too — though lately, he's been getting better every month.

"I've gone through some depression, anger," he says, "and I finally realized: There's a galaxy of experiences, I would say. My friends have always been by my side. With friends, you're invincible."

And when you're invincible, even the improbable can happen: The kid can be the one to reassure the mom.

"Sometimes," she tells him, "you're the one that comforts me, you know?"

Audio produced for Morning Edition by Liyna Anwar.

StoryCorps is a national nonprofit that gives people the chance to interview friends and loved ones about their lives. These conversations are archived at the American Folklife Center at the Library of Congress, allowing participants to leave a legacy for future generations. Learn more, including how to interview someone in your life, at StoryCorps.org.

Copyright 2018 NPR. To see more, visit http://www.npr.org/.

(SOUNDBITE OF MUSIC)

DAVID GREENE, HOST:

That music reminds us that it is Friday today, and it is time for StoryCorps. Today, we hear from 11-year-old Benny Smith. Last spring, he started having epileptic seizures, and it became unsafe for him to go to school. He spent much of this school year being tutored at home, but last month, he returned to the classroom. To mark that occasion, his mom Christine Ristaino brought him to StoryCorps.

CHRISTINE RISTAINO: When did you notice your seizures?

BENNY: When I fell out of my chair in my fifth-grade English class and I couldn't move.

RISTAINO: And what does it feel like when you wake up?

BENNY: A bit like a hangover

RISTAINO: (Laughter) How do you know to hangover feels like?

BENNY: You told it to me.

RISTAINO: Maybe I did. I don't know. So another question that I have for you - you've been passionate about science since you were probably 4. How has having a seizure disorder affected how you study science?

BENNY: It hasn't - not at all.

RISTAINO: OK (laughter).

BENNY: Nothing can stop me

RISTAINO: You've got just so much going on in your brain. It's hard to turn it off, right?

BENNY: I've got a yearning. It's like the call of the sirens from Odysseus, but instead of flesh-eating monsters, it's like a treasure trove of knowledge.

RISTAINO: And in fact, we went to a counselor, and we were saying, Benny never sleeps. And the counselor said, oh, you know, what do you think about at night? And he was thinking maybe you were anxious. And he said, well, you know, I think about what it would be like to go to the edge of the universe and look out.

BENNY: Well, I just wonder because it must be incomprehensible.

RISTAINO: Benny, what are your hopes for the future?

BENNY: Well, we've been so busy on my seizures that my sister doesn't get very much attention. She's left in the dark. And she's an extrovert. Is that how you say it?

RISTAINO: No, I think it's the opposite. She's an introvert, and you're the extrovert.

BENNY: Yeah.

RISTAINO: You're very social.

BENNY: Yeah.

RISTAINO: You've kind of been the focal point of the family over the last few years.

BENNY: I think we need to change that.

RISTAINO: Yeah. I'm so proud of you because you're so courageous in the face of something that's very scary.

BENNY: I've gone through some depression and anger, and I finally realize there's a galaxy of experiences. And I would say my friends have always been by my side. With friends, you're invincible.

RISTAINO: I love you very much.

BENNY: I love you too, mom.

RISTAINO: Sometimes you're the one that comforts me. You know that?

BENNY: Thank you.

(SOUNDBITE OF MUSIC)

GREENE: That's Benny Smith with his mom Christine Ristaino at StoryCorps in Atlanta. That conversation will be archived at the American Folklife Center at the Library of Congress. And the StoryCorps podcast is on iTunes and also at npr.org. Transcript provided by NPR, Copyright NPR.