Be The Change: The realities of narcolepsy

Published: 10/8/2020 2:37:26 PM


I was diagnosed with narcolepsy when I was seven, after seeing a long line of doctors. If you don’t know what narcolepsy is – congrats, you have the same knowledge of it as most medical doctors.

Narcolepsy is a rare disorder where a person has way lower levels of hypocretin than they should. Hypocretin is a chemical that regulates your sleep-wake cycle. People with narcolepsy sometimes also have cataplexy, which is a condition when your body basically collapses onto itself when you experience strong emotions. For me, it’s usually laughter.

A lot of what people know about narcolepsy is from movies, which means all they’ve seen is my disorder being used as a joke. People don’t understand that we don’t just fall asleep standing up, (at least not frequently) and if we do, it’s not funny. We cannot control our sleep attacks, it can be really dangerous. People with narcolepsy experience higher levels of depression and anxiety, are three times more likely to have BPD, experience hallucinations, and can have frequent sleep paralysis.

In 2010, the mortality rate for people with narcolepsy was almost double that of people without. Please keep all of this in mind when reading. I do not remember being a child. Not in the way I think my parents do. There are memories of a child, with curly hair and roller skates, bright pink cheeks flushed underneath the summer sun. But I am not that child. I think I stopped being a child long before I grew out of my training wheels. I stopped being a child the first time I fell asleep in class, or the first time my bubbling laughter brought me to my knees.

Narcolepsy isn’t funny. It hurts to have to try so hard to be normal. I lost friends because I couldn’t keep up with their boundless energy. I have a distinct memory of having a cataplexy attack in elementary school. I was alone in the woods, reading a book. Something was funny, and I felt my neck give out, my face hit the pages, and before I could react my legs and wrists gave out. I slumped to the ground, knocking over the fairy house I had spent months on. I couldn’t even cry. I just had to wait to regain strength in my limbs.

My family thinks it’s funny when I have cataplexy attacks. I can’t really blame them, it looks silly, my whole face droops, and I kind of jerk around. But it’s scary to not have control of your body.My cousin was born a few years ago. I didn’t hold her until she could keep her head up on her own. I was so afraid I would have an attack and drop her. It happened once, during an Easter dinner at my grandparents. My aunt said something funny, and Maddie (my cousin) was in my arms. I can feel it coming sometimes, but my face was already slack, and I couldn’t speak. Those few moments of desperation, trying so hard to keep my arms strong, are a source of recurring terror to me. What if I hadn’t been strong enough? What if I had dropped her?

I’ve made the decision not to drive. It’s technically legal, but there’s this voice in the back of my head that reminds me: one second of laughter could send me off the road. It’s not my life I’m worried about, it’s the people around me. Maybe one day I’ll be able to hold my sister’s children. But I don’t ever think I will ever be able to trust my body. Illness that you can’t see is always painful. I’ve had people tell me they wish they had narcolepsy, so they could sleep whenever they want. People assume a lot about people in general.

If they meet me on a day when I have a lot of energy – I can’t have narcolepsy because I seem so awake! If they meet me on a bad day, they assume that’s how I am all the time. The comments on good days about ‘how much energy I seem to have’ get old quick. Trivializing the experience of others because you don’t see them struggle alienates them, and never leads to anything good. I know many people don’t think a lot about what they say, and I, myself, am guilty of that, but I hope we can all work to be more understanding of others’ experiences.

Charlie Foecking is a student at ConVal High School


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