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Sleep On It: Dealing with Narcolepsy in College

An LU Alum recounts going through college with a neurological disorder.

Yes, the infamous 8 a.m. classes. It’s really not that early, you think. And you’re right – 8 a.m. isn’t that early. But have you factored in the bitterly cold walk to class? Your breakfast? Are you trying to look cute for the boy who sits next to you? And of course, have you allowed time for the 20 minutes of mental gymnastics you’ll be doing to calculate how many skips you’ve used and how your grade will be affected if you don’t get out of bed?

I honestly don’t remember much of my first semester at Liberty University, besides the fact that I slept through almost all of it.

I think I knew something was wrong about halfway through the semester when I was walking to class, falling asleep there and not waking up until the person next to me impatiently poked me to get out of their way. Then it would be a little shuffle down the hall to the next class, or, if there was no next class, sometimes I would fall asleep in the hallway because the trip back from the old Religion Hall to the quads was just simply not worth the effort.

I stopped eating, I stopped doing my homework; I just basically stopped existing for a while. I was sleeping over 18 hours a day. My friends would take pictures of me asleep in funny places. But I think we all knew something more serious was going on.

My mom came out to visit me around November, and we came to the conclusion that I needed to move home while we figured out what was happening. After extensive testing and maybe four different doctors, I was finally diagnosed with narcolepsy.

Narcolepsy, a condition whose name originates from the French word “narcolepsie”, has its roots in the Greek word “narke” meaning “stupor” or “numbness”. Paired with “lepsis”, meaning seizure, the word boils down to “sleep attacks”. The cause of narcolepsy is unknown, affecting only one out of every 2000 people.

People have a funny view of narcolepsy. Many believe that a narcoleptic person can fall asleep in the middle of a conversation, while eating, driving or doing anything. And for some people, that is the case. But it’s more complicated than that.

As a neurological disorder, narcolepsy can manifest in hallucinations and cataplexy, the sudden loss of muscle movement in the presence of extreme emotion, such as fear or laughter (think of the fainting goats).

It took maybe six months after the initial diagnosis for me to figure out how to be a productive member of society. Narcolepsy drugs are very hit-or-miss, so one has to sift through all the options, beg their insurance company to cover the cost and then play around with the drug for a few weeks to figure out if it’s a winner. I went through a lot of non-winners to finally settle on a narcolepsy drug that allowed me to feel normal.

After getting my life under control, finding the right medication, addressing the catastrophe that was my GPA after sleeping through all my classes and finding a strict sleep cycle, I started to feel like a regular human being again.

But I still had to figure out how to graduate with a major neurological disorder.  After about a year spent at a university near my home, I decided to return to Liberty.

The first key to success was learning to avoid or confront peer pressure. I also had to find myself a roommate who was understanding about my needs. Before my diagnosis, when I was sleeping 18 hours a day, I heard my roommate mock me for my excessive sleep. I assured her a hundred times that she’d never be able to wake me and to be as loud as she wanted – I understand that it’s no fun to have a zombie roommate who always has the lights off. But I heard her comment outside my door around 8 p.m. one night, “Wow, the light’s still on. Maybe she’s actually awake.”

Another huge adjustment was the hallucinations. Narcoleptic hallucinations are probably not what you’re imagining. They’re way more boring than they sound.

I dealt specifically with hypnopompic hallucinations. I would hallucinate for several hours before getting out of bed. I’d read texts that didn’t exist, I’d have imaginary conversations in my head with roommates who were out of the dorm, and I’d hear sounds that were only in my head. It sounds scarier than it really was – it was honestly just a pain that I’d believe that I had been awake for hours but, surprise, it’s actually 2 p.m., I just woke up, and I have 15 minutes to get my act together.

These days, I have my quality of life back by following very strict life guidelines. I go to bed each night at the same time, and I wake up no later than 6:30 a.m. I work a full-time job in social work and I am also in school full-time online for my MS in Psychology. I get up at 4:30 a.m. to work on homework if necessary. I don’t drink caffeine or alcohol. It’s not that easy for everyone with narcolepsy, but I think I’ve got my cycle figured out.

I certainly couldn’t have graduated without the medical and emotional support from my doctors and my family. College is a hard enough place to be already – don’t be afraid to seek help when you think something is wrong.

Ferris is an LU Alumni.

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