cataplexy Archives — Kayla M Douglas

23Mar 2019 by Kayla 2 Comments

Letter From a Person Living with Narcolepsy

Dear friend, Do you remember that time we had big plans to do something amazing on the weekend? I told you at the last minute that I really wanted to go but I just couldn’t do it. Well, I remember it. Because it was hard for me to make the decision to take care of myself instead of going to do something fun that I was really looking forward to. What did I do that day? Instead, I spent the day making sure I had healthy food lined up for the week. As part of my self-care routine, I took a few short controlled naps. Focused on physical and mental health, I drank a gallon of water and meditated. I arranged my calendar for the week so I would not…

Cataplexy in a Cathedral

Narcolepsy, Personal Story, Travel

Sharing a plate of fried watercress, a heaping dish of tea leaf salad, and a bowl of eggplant curry, I found myself saying more about my chronic illness than I ever expected to disclose on a first encounter. I heard myself explaining things my body does in words I had never strung together verbally before. Maybe it was the second glass of wine, or maybe it was the humid air, the colorful Myanmar decor, and the attentive listener on the other side of the able. He seemed genuinely interested in how a person with narcolepsy had come to travel as a lifestyle choice. (more…)

Scared of the Dark: The Narcolepsy Symptoms That Nobody Talks About

Narcolepsy, Personal Story

One night around age eight, I was lying in bed thinking of the fun I had had that day with my family. I opened my eyes slowly to see a huge, hairy, manlike monster hovering above me on the ceiling. His appendages stuck to the plaster effortlessly, like a giant spider, and I could see his gigantic teeth waiting to sink into my flesh. I was completely paralyzed. So much that I couldn’t even scream. I lay there on my Care Bear sheets, trapped in my own body, unable to even clench my fists, or turn my head away from the terrifying sight above me. He dropped onto my chest, and I could feel the enormous pressure of his weight. The next thing I knew, it was morning. As a…