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The power of Narcolepsy

October 21st, 2009 Leave a comment Go to comments

It is hard to remember back before 10 years ago before I unlocked my secret powers.  Just like in a comic book, a balance had to be made. While my sister seemed to yield amazing levels of insomnia, I gained the power of Narcolepsy. I didn’t exactly know it was happening until much later in life, even though there were always signs.

Many people say they are always tired.  This is different, trust me.

Unlocking the Powers

A few years after I met my now wonderful wife, she convinced me to go to a sleep clinic.   Try to appreciate that she is a medical nerd, while I retain my more classic computer nerd mindset. In 2003 I went to the University of Rochester Sleep Center, for an evaluation on sleep apnea followed by a side order of narcolepsy.

I have known many people now who have gone through the sleep apnea study, where they hookup about a million and a half test leads all over your cranium and tell you to get comfortable for a good night sleep.  The narcolepsy test starts that following morning, after all of you apnea people get to go home.  The premise is simple, they wake you up at 7AM, give you some breakfast, make sure you stay awake for 2 hours, then ask you to go back to sleep.  This cycle repeats itself 4 times throughout the day, while they monitor how fast your fall asleep, enter REM sleep, and all sorts of things that only the medical nerds appreciate.

Needless to say I passed with flying colors.

Stephen: “How many people are taking the Narcolepsy test?”

Nurse: “Just you and one other person”

Stephen: “Well, am I winning?”

Nurse: “We will see after this next one.”

We are given 20 minutes to try and fall asleep, then the monitor things once they start happening.  I do my thing, and then the nurse returns.

Nurse: not actually saying anything but silent and staring at me.

Stephen: “Why are you looking at me weird”

Nurse: “How do you do that?”

Stephen: “Do what?”

Nurse: “Fall asleep so fast”

Stephen: “I thought that is what we are supposed to do”

Nurse: “You have 20 minutes to start to fall asleep.  Some people start to fall asleep during the first 20 minutes, but then it can take an hour before we see them reach REM sleep.”

Stephen: “Well how fast did I make it there”

Nurse: “2 and a half minutes”

Stephen: “Sweeet… I knew I would win.”

While the normal person goes through 5 stages of sleep before they actually reach REM sleep, I bypass them all and jump right to the good stuff.  Not knowing what is happening, the condition actually does suck.  Knowing how to control it however has become an amazing tool to be able to yield.

Before my powers

Before diagnosing that  I had narcolepsy I didn’t know what was happening.  Simply falling asleep at un-intended times was not the only downside.   When you take away somebody’s sleep and they become irritable.  I mean really irritable. I could create mood swings that would rival any pre-menstrual cycles, all within the course of an hour.  It didn’t help my relationships with people, especially with my own family.  I would turn from a normal communicative person into somebody ready to lash out at the world, or whomever was closest.  So, I would strain my body physically to stay awake, sometimes pulling muscles, all in the attempt to use pain to stay conscious. It rarely worked.

For an infliction that revolves around forcing the body to sleep, it certainly didn’t like to stay asleep.  At best, I would make it four hours every night before waking up and needing to take an hour break from sleeping.  After that first cycle of sleep, I would hear everything in the room, able to wake up when a spider burped in the adjacent room.

College is the place for Narcolepsy

I slept through most of my education. Don’t worry, I learned more on my own than I ever did in a classroom. When I actually found a teacher that was stimulating my powers were not called upon, but throw me in a classroom talking about sociology, and I was a goner.   That being said, Narcolepsy was perfect in college. With spread out classes and time in between them, crashing and waking up for a class was easy. Stretch the powers a little and I could stay awake all night working on something, as long as I let my body crash on the books when the time came. I would wake back up in that same position later and keep studying.

I remember sitting in the front row of my college class, where the teacher was adamant about not sleeping. With the proper angle of a hat, and my pen in a writing position, I could come in and out of sleep throughout the class. To the front of the classroom I did not appear any less energetic than the rest of the lethargic class. I would be able to react to changes in tone in the class room and move in and out of sleep at will. I recall performing this maneuver one morning until I awoke a change in silence in the room, only to raise my head as the teacher launched an eraser to the person behind me, obviously not so skilled in the art. I remember the rest of the class looking at me, wondering why I didn’t get caught.  Sorry Mr Woughter, I was sleeping too.

Narcolepsy in the workplace

Sleeping at Work

Sleeping before driving home after work.

While Narcolepsy may have fit into a perfect college model, it did not fair so well for corporate America. I found myself employed with different companies where my job was to be behind a desk on a computer. After 3 or 4 hours of the work day I was useless. I could not stay awake, period. I would need to put my head down and pass out, or suffer the entire afternoon, fighting to stay awake. I learned to drink coffee. It honestly has no effect, and still doesn’t to this day, but it gave me a nervous habit and a reason to get up from the desk.

So, I learned to adapt, somewhat. I would cram work into tighter deadlines that I invented, just to push my brain enough to not allow things to slow down. If I could keep busy and things were hustling, I would not feel the need to sleep. Throw in a meeting mid day however, and I might as well have brought a blanket and pillow along. I learned to stand up for meetings or to mix up activities for the day. Ideally, I would put my head down at lunch, needing to retreat to my car to avoid people waking me up for an entire 5 minutes.

The Super Power

Thank goodness I had this disease after the drug Provigil came around. Every day I take one pill, which fills that little switch in my brain, keeping it from shutting things down. That is not to say I can not take a good nap at will, but my body no longer shuts down at random times.  The drug itself does nothing to keep you awake like caffeine does.  Without provigil, my body tells me to sleep about every 3 to 4 hours. With the pill, I last through the day without my body shutting down. I try to entertain a reboot for 10 minutes at lunch, if I really want to be awake in the afternoon and into the night.

I reach REM sleep in 3 minutes. I sleep about 4-5 hours a night, realistically giving me more sound sleep in shorter amounts of time than most people. When morning comes, I wake up instantly, most of the time without an alarm. I feel no effects of waking up slow in the morning.

For road trips, I can drive those 3 or 4 hours then I start to get sleepy. If I am alone, I pull over, pass out for 10 minutes, wake up and keep driving, feeling more revived than most people have after 10 hours of sleep. Having somebody else in the car, I know to let them drive while I reboot.  It became very useful for our trip this year in One Lap of America, as I was able to stage my sleep in order to rotate the drivers seat when everybody else was getting tired.

The Kryptonite of Cataplexy

Every power has a negative side effect and for me it has been the occasional occurrence of cataplexy. Imagine listening to a conversation, ready to interject with a good joke that will bring a reaction, and upon delivery of the sentence alone, you feel like you stood up to fast and got light headed, almost blacking out.  Sound freakin weird, well it is, but that is cataplexy.  It only lasts for a second or two at most, but is enough to royally mess up a good punch line. Most people outside of myself never notice it.  You can take the Wikipedia definition as cataplexy is a sudden and transient episode of loss of muscle tone, often triggered by emotions.  That’s right, I want to shift emotional state and my whole body gives me a quick physical reboot.  Yeah that’s normal.


Now that I am awake more than the average human, with a condition that attempts to get me to sleep, I envy people who do sleep through a night.  That being said, I am grateful that I am already awake and moving, able to get more done before most people wake up in the morning.  Perhaps life will slow down enough some day where I can sleep every four hours, but for now I will enjoy the advantage I seem to have over the rest of the population.

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