Many high schoolers have serious problems with sleep. For freshman Nya Nelson, her narcolepsy makes these problems even more excruciating.
The media may portray narcoleptics simply as people who can’t stay awake; Nelson explains how it is not the full picture.
“It’s not just sleeping. Yes, I will sleep a lot,” Nelson said “But also, there will be days where I just don’t sleep, [and have] been up for 24 hours.”
Narcolepsy is a chronic neurological disorder that disrupts the ability of your body to regulate sleep-wake cycles. This induces sleepiness throughout the day and also insomnia, or the inability to fall asleep. It affects about one in 2,000 people worldwide, and an estimated 50 percent of those with the disorder go undiagnosed.
“It’s not entirely well understood. We’re still trying to figure a lot of it out,” nurse Benjamin Bernier said.
Bernier says it’s important to understand that narcolepsy isn’t just sleep-related.
“It can be debilitating to your daily life in the sense that you’re trying really hard to stay safe,” Bernier said. “If you’re walking or running or anything else is going on, it could be hard to keep your body safe.”
For Nelson, the condition can complicate social outings. Her parents have the challenge of balancing support with reminders about her limitations.
“From a parent’s standpoint, [the concern is] the safety of falling asleep in a public space,” Nelson’s father, Tyler, said. “She’s in high school, she has friends, and she wants to go out and socialize and do all that stuff, but we have to remind her all the time, you’re not built like that. That’s not what your strengths are.”
Nelson’s diagnosis certainly wasn’t a surprise, though, given her family history.
“My mom has always known that something was wrong with me,” Nelson said. “And my dad is undiagnosed, but he also has narcolepsy. It [was] pretty obvious.”
Yet unlike her dad, who was simply called ‘lazy’ for his tendency to fall asleep, her diagnosis helps her get accommodations, such as being able to go to the nurse to rest if needed. There are many instances where Nelson feels as if she can’t survive without sleep.
“I need to sleep more than I need to breathe. I can’t function without having my eyes closed or being asleep,” Nelson said.
Beyond disrupting sleep cycles and regulation, the condition can interfere with emotional stability, sometimes leading to sudden episodes of passing out.
Nelson and her father both have the symptoms of narcolepsy, and can relate to the effects that it has on their rhythms.
“She and I were just two peas in a pod,” Tyler Nelson said. “If she’s asleep, I’m asleep. If she’s up in the middle of the night, I’m up in the middle of the night.”
Freshman Sammy DeHerrera has known Nelson since second grade, for about 10 years. She was not shocked to learn her friend had narcolepsy.
“I’ve watched her struggle for such a long time with it. The hardest thing for me was her realizing it,” DeHerrera said. “But it took a really long time for her to get that figured out, and it was really sad to watch.”
DeHerrera believes that Nelson’s biggest struggle is having connections with others.
“She loves people, but she would get so tired that she couldn’t deal with people,” Herrera said.
Nelson also sees her friends and family as being integral to supporting her through her struggles. Her friends help her sleep when she needs to, and her mom checks to make sure she is okay throughout the day.
“We laugh about it a lot because it’s just, where’s Nya? She’s sleeping. Where’s daddy? Oh, he’s sleeping. So I think we’ve just accepted it as part of who she is, and being part of us,” Tyler Nelson said.
