My Diagnosis with Narcolepsy Saved My Life

by Pia Salter
(Cambridge, UK )

Picture this: it's 6:45 AM. The sun is just rising over a green, flat-roofed bungalow in Puerto Rico. The neighbor's chickens are clucking happily while two dogs bark at a local jogger who makes his sweaty way past them. A middle aged lady from down the street emerges to check her mailbox, her hair still in curlers.

A large van full of laughing children turns into the street, interrupting the neighbourhood's calm with its old, wheezy engine. A girl, fourteen, with a brown school uniform and her hair in a tight braid down her back, dashes out of the house, frantically shoving a slice of toast into her mouth. As she climbs into the van and squeezes in with the other children, her mother steps out of the house. "Have a nice day, sweetheart!" she calls as the van pulls away. "Don't fall asleep in class again!"

The girl does not hear her mother's advice. She's already asleep.

...

Throughout middle school and high school, I was that girl. As soon as I'd sit down to do anything,from homework to watching movies, I'd be fast asleep. I had teachers go nuts trying to find solutions: making me stand in class didn't work. Letting me eat sometimes helped. Spraying me with a spray bottle like a badly behaved kitten was pointless, and got me bullied.

At home, my sleeping wasn't a big deal. My dad is like me; we'll both fall asleep anywhere at any moment. If my dad had known about narcolepsy back then, I might have been diagnosed before my condition affected my life severely. However, he did not know it existed and assumed that his own condition was due to sleep deprivation. So, I figured that nothing was really wrong with me either. I just tried to make up the missed classes online in my own time. Those online classes often kept me up late, and I'd bemoan the vicious cycle of sleep and work I was caught in. I wanted to get a sleep study done, but it was just too expensive.

Despite sleeping through class almost every day, I graduated from high school with an excellent GPA. I thought my troubles were over as I moved to Cambridge, in the UK. I figured college would be a chance to do things on my own schedule, without boredom. Unfortunately, it turned out to be High School on steroids, drama and all... And even more unfortunately, sleeping in class was completely unacceptable, as I couldn't just redo the lectures like my old calculus classes.

I needed help, urgently. I was failing and suicidal. I was already seeing a doctor about anxiety and depression, but my sleeping was really ruining my life and my studies. I talked to my GP who referred me to the sleep clinic at Papworth Hospital. It was scary going there; the place was intimidating, with its red bricks and disinfectant smell. However, when I stepped out of that place after my MSLT, it looked like the most beautiful place in the world. Finally, I could say for sure: I'm not lazy, I'm not sleepy, I'm narcoleptic.

A few years on, it's amazing how much better my life has gotten. Thanks to Modafinil, I can get through my day mostly awake, and I can generally sit through lectures. (I also use a backup recorder to make sure I don't miss anything.) I can leave the house more, as my EDS is improved while I take my meds. People don't call me lazy any more. No one sprays me with spray bottles. Sure, I have my awkward moments, like falling asleep in a grave on Menorca (I'm an archaeologist) but I'm not missing out on life anymore, and it feels great!

I only wish I had been diagnosed sooner. If you think you might be narcoleptic, please get checked. It could change your life.