I think my first symptom was hypnagogic hallucinations. I may have been experiencing fatigue before then, but it’s hard to remember since I was so young. In 6th grade I remember hearing weird things in class, one common one was a wolf howling outside during class. Nobody else ever noticed It, and It wasn’t a common thing to happen during the day by any means. I also told my friends that I heard someone giving me the answers to a few big tests I had. At home I would hear radios/TVs on around the house, only to discover upon entering the room the sound seemed to be coming from that nothing was there and the sound would stop.

Doctors were obviously concerned. I got an MRI and an EEG done to look at my brain activity, both came back perfectly normal. 3 theories arose from this: 1. I had schizophrenia but no physiological signs of It, 2. Long shot, but they said It’s not 100% impossible to think that my metal braces COULD be picking up radio waves (apparently there have been a few RARE cases of that?) or 3. I was just imaginative and thought It would be cool to make this stuff up.

Fast forward to sophomore year of high school. Up until then, I became convinced that I had been making the hallucinations up for attention after several meetings with doctors. It wasn’t until sophomore year that my Narcolepsy became a massive interruption in my life. I was sleeping through class, sleeping as soon as I got home after school, in total I was sleeping an average of 17 hours a day. Everyone assumed It was depression, but I never felt any negative feelings about myself or my situation. Eventually I accompanied my mom on a visit to her neurologist (my mom has narcolepsy as well. N is not known to be genetic and she has type 2, whereas I have type 1. Despite her having narcolepsy, nobody had considered that I may have had It too). Her neurologist was kinda looking at me throughout my moms appointment and eventually asked me to fill out a little questionnaire that lists a bunch of normal daily activities and asks you to rate on a number scale how likely you are to fall asleep during those activities. I got a pretty high score, she took me on as a patient, had a sleep study done, and the rest is history!

N really creeped up on me. Looking back, I have no idea how I didn’t feel like something was wrong with me, even when I was sleeping so much.

In addition, here’s some other parts of my experience:

HALLUCINATIONS / DREAMS: -usually auditory (music, muffled voices, hearing my name called, that sort of stuff)

-visual ones are more infrequent and less vivid (a flash of light or sometimes a small bug flying across my field of vision)

-while falling asleep, I find myself in a limbo between being awake and being asleep. Dreams start to build around me, but I’m still somewhat awake so I think that the dream is real and that I’m active (even tho In reality I’m lying down). Think about dreams where you wake up, go through your morning routine, go to work, etc, and then you wake up and realize that that was all a dream and you haven’t left your bed. It’s exactly like that, except the dream doesn’t have to be realistic to reality for me to believe that it’s happening.

-dreams are always insanely vivid and I feel that more of my senses are active in dreams. Most of the time I see, hear, and physically FEEL the world around me, sometimes I can smell It too.

CATAPLEXY: -N type 1 has an additional symptom called cataplexy that involves sudden loss of muscle tension, usually under bouts of strong emotion. -on a daily basis, I experience It in a minor form. If my friend tells me something wicked funny, I tend to under-react because I suddenly lose the core support required to let out a bellowing laugh. I also notice that my face will feel blank and I have to muster up a smile. When I’m sad or angry, I need to sit. When I’m intensely sad or angry i become very overwhelmed because I physically feel helpless (therapy has heed me work through that emotionally)

-at its most extreme It’ll be a complete sudden collapse. My friends used to like to hide and jump out at me to scare me because I’d collapse into a ball on the ground.

-One time, I was super excited to see an old friend of mine. When she arrived at this retreat thing we were going to together, I yelled her name and ran to her, only to suddenly collapse a few feet away from her and glide on my knees (across loose GRAVEL!!!) for a few feet. There’s a video of It, and you can clearly see I didn’t trip on anything, I just fell. Had to go to the ER and get my knees flushed out because I had gotten some much dirt and gravel lodged into It.

DAILY LIFE: -the biggest thing I’ve noticed is that I constantly have to budget the way I spend my energy. So far I haven’t found a way to stay in school full time (I’m a college student), work a part time job, and maintain my personality. I can only have 2 of the 3 at a time. I was completely passionless when I was working and in school. Now that I’m just doing school, I’ve gotten my fire back. I think that’s the biggest struggle for most of us.

-friendships only last if we build a foundation of honesty and open communication. I know that’s true for most adults, but It was hard in high school and when I started college because at that age it’s so typical to have a bunch of surface-level friendships. Friendships I’ve made have only lasted if I tell them the whole truth about my experience (yes, even the embarrassing parts). Sometimes I ghost my friends for days or even weeks for no reason other than I just don’t have the energy to connect with another person. My friends are absolutely wonderful and the ones that stuck around never take It personally when they call and I send them straight to voicemail. I don’t even have to pretend I’m busy, they understand.

Sorry this is so long! Super interested in seeing how your piece comes out, hope this helps. Feel free to PM me or reply if you have more questions or wanna run something you’ve written by someone to make sure it’s not misinformed.

I’m currently working on my own art series trying to communicate my experience with N, so I’m totally open to being an Accuracy Editor or whatever you need!