Sleeping with the Enemy
How Narcolepsy Affects Some Working Americans
Many people don’t like discussing things that could be considered “disabilities.” I am not one of those type of people. If we cannot discuss disabilities for what they are, then how can we educate those who are suffering from those disabilities and don’t know how to handle it? I talk about the effects of Narcolepsy from the perspective of a working American. I am only speaking about myself in this manner and not from any other person’s experiences. This is not a discussion on why narcolepsy happens, I’m sure if you google it you can figure that out. This is how it affects my life on a day-to-day basis.
I remember when I was in my early 20’s. I had to drive an hour to get to work every day. Back then I couldn’t figure out how some people could come to work on three or four hours of sleep, when I never felt rested on a full eight hours. I would have to accommodate my commute. I tend to eat while I’m driving, often. I have come to the realization that driving while sleeping is not a good idea. I have unfortunately learned this the hard way, so I had to learn how to fight the exhaustion while driving. Eating is the answer, that or chewing gum (which seems to be the healthier alternative).
I remember having to count the suit wall more than once. The mundane duty of counting a couple of thousand suits was not stimulating enough to me to keep me awake. The repetition was hypnotic which is not good for a person with narcolepsy. The answer to your question is yes, people with narcolepsy can sleep while they are “awake.” Our eyes don’t have to be totally shut, and even if they are shut, we are still moving and functioning as if we were awake- just not to the same level of expertise.
I yawn a lot. I mean excessively. I yawn more than any person I know. I’m likely more tired than anyone I know. Yawning helps me to feel a little more awake. I also squirm, wiggle, stretch, walk, and move around more than anyone else I know in the workplace. In my school days, my teachers would laugh at me and say things like, “You look like you have ants in your pants.” That was me trying not to get too comfortable, in an attempt of trying to stay awake.
People see junk on TV and think that you don’t really have narcolepsy. I don’t fall out sleeping in the middle of bowling, I don’t fall asleep cooking (usually), and I don’t fall asleep during parties or other fun activities. In fact, I can even tolerate road trips, I just have to take defensive measures. I make sure whoever is driving is awake enough to drive. I make sure that if I’m the one to drive (which is often) that I have had a little caffeine (hence the diet Pepsi constantly by my side), that I have music I like, or gum to chew on. This is enough to keep me awake. The point is people with narcolepsy don’t suddenly feel tired and just collapse. We (At least I) know when we’re tired. It’s not sudden. I assume it to feel like any other person who has been up all night and they finally feel sleepy enough to fall asleep- their version of exhausted. For me, that exhaustion feeling is often, in fact, daily, and even more likely, constantly.
When I had to type notes or assignments for school, my fingers would type and I would be dreaming. I would wake up and have to review a couple of paragraphs of when the sleep began. That’s what doesn’t make sense to a lot of people… I said I was dreaming and I only had a couple of paragraphs typed. That’s the physiological effect of narcolepsy. I can dream as soon as I sleep, most people it takes an hour or more to get into dreaming. For me, dreaming happens immediately. I can also move as if I were awake, which was already mentioned above.
Nap times are amazing. They are invigorating. They help me function. When I was a young child, I would drag a blanket through the house. My favorite gift ever in my life is always my comforters, pillows, and other types of bedding. I enjoy sleeping. I have no choice but to enjoy it, my body mandates more sleep than the average human. People assume that I am lazy, depressed, or sick. The answer is, I have never dealt with depression, I’ve never really been lazy (I work 2 jobs, have 3 kids, write, and go to school!), and I’m not really sick- unless you count this as sick then the answer is I will always be sick.
There are probably some jobs that people with narcolepsy shouldn’t do. For example, you will never catch me flying an airplane. Even though I can drive, my Dr. knows I drive and I’m safe, I am not stupid enough to put myself in a plane and go a distance. Realistically it’s not a smart idea. I will never be a secret service agent. I can’t sit/stand still long enough. I move around a lot. I will never be an accountant. Numbers are not stimulating enough for me to stare at them and be able to focus for hours at a time. My career choice(s) are perfect for me. I am engaged in speaking to people, I’m engaged in learning, I’m engaged in helping. I enjoy what I do.
The biggest threat of narcolepsy is toward me. I have really vivid nightmares. Most people are terrified by them. I’m not most people. I enjoy them because they give me an invigorating feeling that allows my emotions to feel fear at its optimal level and gives me something to play off of when I write. I’m not one who hallucinates when in bed. I do not have catatonic problems as some do. I do have sleep paralysis, this happens a lot and it’s terrifying and amazing at the same time. The main problem is that as soon as I lay down, I’m sleeping and dreaming. The cool thing is, I’ve never once experienced insomnia. Most people can’t say that. I also have a really cool dream journal.
Narcolepsy doesn’t get enough discussion and it really bothers me when people think we’re lazy or boring. I choose not to be medicated, though that choice may change in the future, I don’t like the idea of having stimulants (other than caffeine) floating through my body. I understand that when I cross this threshold of my life, it will be a permanent one. However, I also realize there are a lot of people out there suffering from this illness and because it’s not a cool one (like OCD) it gets swept under the rug. It is said that Albert Einstein suffered from this as well. I always knew he was a cool person, and man do he and I have a lot in common!