Narcolepsy.
It may just be a long, meaningless word to you,
But it has been a constant shadow over my life for the past nine years.
What is Narcolepsy? Well, it is a sleep disorder, a chemical imbalance in the brain, causing your body to no longer be able to regulate its sleep cycles. Basically, REM is the deepest sleep, causing you to feel most rested, and normal people fall into REM after about, 90 minutes. People with narcolepsy, it happens almost instantly, but then we wake up quickly too, causing an endless cycle of always being sleepy but never feeling fully rested, resulting in the prime symptom called excessive daytime sleepiness.
There are other symptoms too. The second most life-inhibiting one is Cataplexy. This is where you loose muscle control at the onset of strong emotion, mostly laughter. But not all laughs are the same…its only certain times. I don’t know why. Most of the time people try to be funny and make me “pass out laugh” as we call it, but it doesn’t really work like that. This nickname is also misleading because I am actually conscious the entire time, I just can’t move- temporary paralysis. These episodes can happen at any time, and generally only last for a few seconds or up to a couple minutes. Its very strange, I look weird doing it, and it used to cause me a bit of social anxiety, especially when meeting new people. However now, I just let my weird flag fly, and inform them to just please not let me hurt myself.
The last symptom that is frustrating is called automatic behavior, or “Narcoleptic Fog”. It is when I am doing an activity, and it can be anything, like driving, writing notes in class, even trying to talk on the phone, or walking around, and during the activity, things get all hazy, and my brain falls asleep but my body keeps doing whatever it was doing. Its quite strange and the best examples are when I look back at my notes at the end of class and some of the notes aren’t legible, cuz I was still trying to write while being half awake, or before I was on medication driving, and I’d come out of the fog and realize I didn’t remember the last mile or so. Yes, dangerous I know, that’s why I stopped driving for over a year until I got on good medication.
Having narcolepsy is often considered a hidden disability, because at the surface level, nothing seems wrong, but then people start to think things about us in their ignorance. That we are lazy, irresponsible because we’re always tired, dumb because we forget things a lot, or are often confused (I used to have trouble differentiating what was a dream and what really happened, because dreams can be so vivid). This leaves many people with narcolepsy feeling largely misunderstood, frustrated, and alone.
I was on two different medications for my symptoms. Narcolepsy has no known cure. The medicine made me as normal as I could be, but they had their own share of problems in side effects. But I was still very harsh on myself, holding myself up to trying to perform at a normal standard, when I’m not normal. I have gotten better about this, and the people I am surrounded with are so loving, understanding, and accepting. I don’t have to pretend to be normal. Sometimes I will fall asleep during things, sometimes I just need a nap in the middle of the day, sometimes I just need a little more help, and that’s okay.
Narcolepsy is a disability but I have tried not to let it hold me back in life. Yes there are some things I can’t do, but I still do everything I can. One thing that narcolepsy almost held me back from, however, was the World Race. Many people wondered what I’d do about my medicine, how I would be able to handle this lifestyle of constant change, and many other questions. I had these questions too, but I knew God had given me a dream, and I knew that my God and this dream was bigger than narcolepsy. I also knew that if God let me have this disease, he would find a way to use it for his glory…and He did!
**Stay tuned for part 2!!
