Sharing With Shapiro

Rebecca Shapiro is a Senior at Apopka High School. The Blue and White had the pleasure of interviewing her to share a glimpse of her story.

When I was in 6th grade, the day before spring break, I was found unresponsive in the school nurse’s bathroom. Many hospital visits and crazy things later, I got diagnosed with narcolepsy and cataplexy. Basically, I fall asleep during the day and also have a hard time staying awake.

The end of my sixth grade year, I missed almost that whole quarter of school, because I would just sleep through school and sleep through periods. Lots of medicine later, I’m actually doing really good. I have a new [medication] that’s helping me.

At the beginning, my grades were bad because I was missing a lot of school; it was really bad. I had so much missing work that I had to use the weekend to work on it, but this year it’s a lot better. I feel like never giving up and never letting people say “No” to me, because I’m the only one who knows my limits.

My guidance counselor (my middle school guidance counselor because this was when everything was going on), they still didn’t know what was going on about me. I would visit her all the time crying, and she would tell me to focus on the here and now. I would say, “What if I didn’t have narcolepsy?” “What’s going to happen now?” “What’s my future going to be like?” And she’d respond: “Just focus on the moment, don’t worry.” And that would help me a lot.

I tried to go to school through all of it. I take a stimulant for ADHD that’s supposed to help people with ADHD but I don’t have that. It’s just to help me stay awake. I also take that at night, because people with narcolepsy go straight into REM sleep. Normally when someone falls asleep, it takes them an hour or so to start dreaming, [but for] me it takes me mere minutes to go into REM sleep. This medication helps me have that time before I go into REM sleep. The whole thing is a chemical that eats the stuff that tells me when it’s time to go to sleep and time to awake. So that’s sort of how it is.

I want people to know that just because someone is tired or falling asleep doesn’t mean they’re lazy, and it doesn’t mean they don’t want to do things. It just means they can’t control it. I can’t control what I do. I also want to tell people, even when it’s not related to narcolepsy, to never give up because I never gave up even though things were very hard, and look where it’s got me.

Narcolepsy is an invisible illness but it’s still real. It’s something that could change your life, and narcolepsy has changed my life for the worse, but also the better, because without it I don’t know if I’d be as strong or independent.

I’m a lot more than a girl with narcolepsy. I try my best. I have a personality. [I would describe myself as] kind and sweet, I guess. I don’t want to be selfish.

[As a hobby] I go birding. Like flap flap in the sky. I watch them, and I also volunteer at this place called Avian Reconditioning Center. It helps rehabilitate and rescue birds of prey [such as] hawks, eagles, falcons, and owls, and stuff like that, and that’s really fun. I also like to sing. I’ve always loved animals, and especially birds. I love looking at them. It’s something that I’m passionate about.

On September 22, Rebecca’s percussion section wore pajamas in support of World Narcolepsy Day.

After high school, I plan on going to UCF and major in marine biology, because I want to work in a rescue aquarium one day.

I joined the band because my sister was in the band. She came home and started talking about it, and I thought, “Oh, that’s fun.”

I’m a percussionist, and for marching band, you have to carry your drum. Originally, I was in the front ensemble, where you don’t march. So that was 9th grade year, and I never thought I’d be able to march because of the heat– it’s a trigger for me to fall asleep. Once front ensemble was cut, I had to learn to play a carry-on (or carrier) drum. I tried the bass drum my sophomore year, but I couldn’t carry it, so they cut me from that. But I really like the bass drums, so what I did the next summer was I took it home and I carried it. The band director was still like, “I don’t know if I want you to march and carry it for your safety” but, my whole junior year was proving to them that I could march with the drum, still fall asleep and be okay. That’s what I did this year, too, and it was fun.

My friends in my percussion section are like my family. They take care of me, it’s great. I love my support system here at this school, and I feel like they should get a little bit of credit, too.

I look up to my sister because she’s amazing, and she wants to be a civil engineer. She has to face a lot of men who tell her “Women can’t be civil engineers.” She’s my role model and so is my mom. As far as famous people go, I don’t know, there was this famous football player with narcolepsy and I thought that was cool, but I don’t remember his name.

To end the interview, Rebecca wanted to say “Stay strong with a smile.” Which is also the message on her medical bracelet.