High School with Narcolepsy
We invited three high school students with narcolepsy to join us during our Denver conference to talk about what it’s like to be a high school student with narcolepsy.
Meet our participants:
Vanessa Waldman is a ninth grader from California
Garrett Larson, from Houston Texas, is currently in his junior year
Demetrius Berkeley is in his senior year in school in Florida
Q: What do you think is the biggest challenge of being a teen with narcolepsy?
Vanessa: Having people understand
Garrett: The school system. They don’t always get it.
Q: What have been your experiences in trying to get people, teachers, to get it?
Garrett: Either teachers will get it or they just don’t. They have to choose to.
Vanessa: I think also some people don’t take it seriously enough. That’s one of the issues for me. You have to say enough so that people don’t just think, oh you’re tired. Everyone’s tired. But you don’t want to say too much to scare them. And I think it depends. For me, students are harder because kids aren’t really serious about it.
Q: How long have you been diagnosed?
Vanessa: I’ve been diagnosed for five years.
Garrett: Since seventh grade, so about five years
Demetrius: Last year. I’ve had it since seventh grade though.
Q: What kind of reactions do you get when you tell people your own age that you have narcolepsy?
Garrett: I don’t really tell people my own age that I have it. It doesn’t really matter that much.
Vanessa: For me, I really do have to tell people actually because it can be an issue, like if I have cataplexy, I could fall. For most people it’s very new information for them. They’ve never heard of anything like that before.
Vanessa: Yeah, surprised
Garrett: Surprised, confused a little bit.
Vanessa: Sometimes scared if I tell them about my cataplexy.
Q: So do you think it changes the way your friends interact with you?
Garrett: Not really for me. We do the same things. I have a friend, he knows when I get scared I get cataplexy, so when he’s at my house, he’ll do things and scare me, but we’re just playing around, having fun.
Vanessa: For me with my friends, I get cataplexy when I laugh and so the opposite for me. My friends know not to make me laugh when I’m standing up. Usually they tend to be really cautious about that.
Garrett: My friends will say jokes but, if I’m standing they’ll try to wait.
Vanessa: They just don’t do it on purpose.
Demetrius: We were at my house and just messing around, but outside in public, they know better.
Q: What about teachers? How do teachers respond?
Garrett: I’ve had some teachers that I’ve had to take it all the way to the assistant principals. I had a teacher last year that flat out wouldn’t give me anything. She’d wake me up in the middle of class when I’d fall asleep. I had kids messing with me in that class so it was awful.
Vanessa: I go to a private school and what we did was actually since I was going to a new high school, the week before school started by mom and met with the dean and we talked to her about everything that I needed and they then told all the teachers and they set up a place for me to sleep and I can get coffee whenever I need it. For me, I’ve never really had the experience of the teacher denying me anything.
Q: Demetrius, what have your experiences been?
Demetrius: Well, we set up the 504 plan and I did have a couple of good teachers that were good with it. But I wouldn’t fall asleep as long as the class wasn’t boring.
Demetrius: I had world history and it was a great teacher. Power points, we could stand up. I never fell asleep in that class once.
But kids messing with me? Not so much. Most of my friends who I know take it as I joke. I really haven’t had any problems except freshman year, a teacher slammed a book right next to me. And when you wake me up and I’m sleeping I get up kind of grouchy so it didn’t turn out so good. I didn’t get in trouble because they explained it and it took away whatever happened.
Vanessa: I’ve never fallen asleep in class except in first grade. That’s when my mom realized something’s up. But there are times when I’ve had a sleep attack so I pinch myself, but I’ve never actually fallen asleep. I wonder how that must be. Do they wake you up? Do they not?
Demetrius: They’re not suppose to they’re supposed to let you sleep. Unless I wake myself up, then they’re supposed to try and keep me up.
Q: Do you do after-school activities?
Garrett: I don’t do sports or any of that.
Vanessa: Me neither. I tried it. I came home and said, ‘Mom I’m never doing this again.’
Demetrius: I’m so exhausted after.
Vanessa: I take the BART [Bay Area Rapid Transit] after school and it’s an issue sometimes. One time I fell asleep standing up on BART and I woke myself up because I dropped my stuff.
Demetrius: I fall asleep on my keyboard a lot.
Q: Are there other symptoms that are hard for you?
Garrett: I have problems with sleepwalking. Sleep talking.
Demetrius: Really? I feel like I do sleep walk sometimes but it’s more of a lucid dreaming. I’m out of my body. I can see myself walking. It’s weird.
Garrett: Yeah I got so bad a one point about a year ago that I was playing video games in my sleep.
Vanessa: Xyrem has some huge side effects. Like I would get confused and I would go out and do things. I went in an elevator in a hotel. One time I poured juice in cereal and ate it.
Demetrius: I did that once!
Vanessa: And I don’t remember what I’m doing. I have no recollection.
Demetrius: I don’t remember it either.
Vanessa: My parents lock the pantry doors because I will take food in the middle of the night.
Demetrius: One thing is, we don’t always remember what we do or what we say, so you can’t take everything seriously.
Vanessa: Right? Yes!
Garrett: If my little brother wakes up in the middle night, he’ll walk in and see me doing things, like standing in my room staring at the ceiling, and I won’t remember any of it. I’ve had full on conversations with my brother, apparently, and never remember any of it.
Demetrius: I never remember a thing I said.
Vanessa: It’s the same with me. Sometimes it’s blurry, like I remember little bits.
Demetrius: Yeah if you remind me. I get hallucinations. They get ridiculous.
Garrett: I don’t get hallucinations very often.
Demetrius: I get them through out the day. It’s crazy. Sometimes I can just close my eyes and I’m like, in a wonderland. I can see everything. I don’t take the hallucination really seriously though. I attempt to stay away from scary movies and things I’m not comfortable with.
Vanessa: Someone asked me if I was drunk once when I was laughing. I was at summer camp, and I was really young. It was a shocker for me. I actually stopped summer camp because of the medicine. I wasn’t able to go to sleep-away camp.
Demetrius: I went to sleep-away camp and they had to rush me to the hospital because I was sleeping while everyone was out side. The instructor tried to wake me up and I fell off the bed and he thought I was playing, but I wasn’t playing. But I slept on the bottom bunk, so it was ok.
Vanessa: Same for me
Garrett: When I was a kid sleep walking, I practically jumped off the top bunk. Dad walked in and stopped me.
Vanessa: How are you guys’ parents involved. Are they really involved?
Garrett: Very understanding.
Vanessa: Same with me.
Demetrius: Maybe it’s just me and how I take everything in, but my mom, she’s a nurse, so she’s definitely into it. But sometimes I feel like she’s into it too much. You’re doing too much.
Q: What do you hope to do in the future? What are your plans?
Demetrius: My plan is to go to a tech school, get into computers, and get out there and get a nice job, a good amount of money, so when that day comes and I just get too lazy or narcolepsy increases… I really don’t think I have it as bad as other people from hearing you guy
Vanessa: Well it depends. You have hallucinations. My cataplexy is really bad.
Demetrius: Everyone is different.
Garrett: my cataplexy is really bad, but I don’t have any hallucinations. I’ve got everything else in the extreme.
Q: Garret, Vanessa, What are you interested in doing?
Garrett: Cyber security for the government.
Vanessa: I’m still in 9th grade, but I know that I’m not a science-math person. I want to do something with writing. And I’m interested in helping people.