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.
I explained to him that even though I have my symptoms mostly under control, that doesn’t mean that I can do whatever I want. I follow the ketogenic diet pretty closely and I have techniques that I use to attempt to avert disasters. Overnight flights, train rides, or buses are the least of my worries as a traveler with narcolepsy. For me, the fatigue is predictable. I know it’s going to happen and I have tools to deal with it. Cataplexy is the wild card.
Cataplexy is a symptom of narcolepsy defined as striking, sudden episodes of muscle weakness usually triggered by strong emotions such as laughter, exhilaration, surprise, or anger. The severity varies and could be as slight as jaw slackening or a full collapse for a few seconds to several minutes while the person remains fully conscious but unable to speak. I told my date I couldn’t really explain it, and he asked me to try.
I thought back to the most recent attack I had that really impacted me. I was visiting a famous Cathedral in Madrid, Spain. After visiting the roof for some incredible views of the city, it was time to descend through the church. As I gazed down at the altar, I tried not to associate any emotions with the experience. I took deep breaths and attempted to only see the beauty and not feel. At first, I just felt pain in my hands and I accepted it. I was descending the stairs toward the exit when I lost the feeling in my legs, but miraculously I was still moving. I felt like any moment I would go tumbling down. Strange electrical sensations went through my whole body as I fought off the cataplexy, forcing my muscles to do the impossible. The moment I was out the door I sank into a seat, exhausted. I was relieved that I had been able to hold it together, but the effort had taken everything I had. Although nothing disastrous happened, it was a clear message from my body that I am still not in control.
Since emotions are the main trigger point for cataplexy, for years I pulled a blanket over my head and worked hard not to feel. I started to notice the symptom in my teens, which were hard enough without having to constantly question if I could trust my body to hold me upright. At that stage, my fears of what could happen were far worse than my actual cataplexy symptoms.
I imagined leaning in for a first kiss, collapsing at the feet of my crush, and dying of embarrassment. I worried the excitement of a marching band competition or the anticipation of returning a volleyball coming over the net would trigger an attack and my life would be over. So I learned to not get too excited, not to expect too much, and accept things without feeling. I became clinically depressed and developed unhealthy coping mechanisms which only alienated me more from my friends and family. I was letting narcolepsy control my life.
In the past few years, I’ve taken steps to regain a sense of control. I know there is no cure for narcolepsy, but I have improved my general health and wellness to alleviate my symptoms. I’m also working on accepting that letting my symptoms show isn’t a sign of weakness. I have set out to travel the world and conquer my fears.
My cataplexy triggers can be fear, laughter, anticipation, disappointment, embarrassment, grief, pleasure; many of the emotions that make us human. Sometimes it seems to happen with no trigger at all. The way cataplexy feels also varies, and I have yet to find an exact science as to why or how.
I struggle not to let my fears of what cataplexy might cause prevent me from enjoying my life. It is difficult to open myself up to emotions due to what I know may happen. Explaining this phenomenon to friends or a partner is often an uncomfortable and eye-opening experience. There is no “correct” response I am looking for when I disclose. A person showing a genuine interest was actually a challenging experience for me but a welcome one.
If you enjoyed this post, check out my previous post about some other lesser known symptoms of narcolepsy here.