Dormez-vous? Dormez-vous?

In Recent years Narcolepsy has been getting diagnosed earlier and earlier now that more people are aware of what to watch for. Many of us who are older did not have that advantage when we were young, and for those of us born with Narcolepsy, or got it very early, it had always been normal to us so we would not have known any different.

I was the oldest child in my family, I have been symptomatic pretty much from the very get go. But my mom being a new mom didn’t realize this.  Babies were supposed to sleep like that. (It’s just that I never really stopped!) That made me a pretty easy baby to work with I imagine.

Easy did not last long however, because by age three, I was going into sleep paralysis and hallucinating. And just as soon as I could shake it off and move, I was screaming for my parents. (They could not understand that it really wasn’t ” just a bad dream ”  The things I would see were very real and in my room!)

By time I was 11, I was having severe issues with automatic behavior and having “light” cataplexy, (which became full-blown, drop to the floor style, by time I was 13.) The school I was in at the time wanted to put me in “special” classes. Though no one could seem to figure out what kind of “special” I was.

A new school and years later at 16, when this school insisted I was on drugs, my parents did what any normal parents would do. Drug tested me and put me in counseling.  When I ended up with a “clean bill of health” I switched schools again. But by then, I already knew, I was off in some way, and had already learned to hide it pretty well, except from my friends, who just thought I was being funny.

So there is the “peripheral” version of my childhood. Which sucked by the way. It was predestined to suck, and there is no fault to be laid anywhere really. When you have a disorder like Narcolepsy go undiagnosed, sucky is just the way its going to be.

Now for the “internal” version. I was the weird kid. Not the “Beat the crap out of you stuff you in your locker” weird kid, the “avoid at all cost” weird kid. It was rather irritating when I was in elementary school, though I really didn’t care much because I really didn’t have much interest in many things.

I was pulled from class on several occasions to talk with the school counselors, to ask about home life, they were searching  for reasons…  I would have to take test that other kids didn’t have to take, Once someone special came from another town to do a stupid test with blocks and such. ( It was an IQ test of some sort, BTW I am brilliant apparently. Even back then I was.) All these things they were doing did not help me out socially either.  And really, I didn’t care. I just wanted to go back to class, put my head down and go to sleep. Usually about a third into the year, the teachers would quit trying, and leave me in peace. And that is how much of my academics continued.

What started getting hinky, was the counselors. I was depressed. I was suicidal. I was manic-depressive. All this according to them. They decided these things, based on the fact that I sleep so much. Based on the fact that I had a tremendous amount of death in the family. Based on the fact that I would show up in their offices, sit on the couch and go to sleep. Because we certainly did not talk about anything. I already knew I was in trouble for something, I just wasn’t sure what so I wasn’t talking! My parents paid god knows what an hour for me to take a nap in at a shrinks.

There is a little thing called power of suggestion. It’s actually a pretty big thing. If you get told you are depressed often enough and by all the right people who “know” things about psychological disorders, you actually begin to believe them.  And then suddenly, just like that, you are. So you take on that persona. And that is when I quit being weird and started being cool… That kind of worked for me. (Between “Ghost”,”The Crow”, and damn near every Christian Slater movie in between, death was pretty romanticized in the 90’s!)

I was not Diagnosed until I was 23. I can’t say my childhood was robbed because of these misdiagnosis. You can’t be robbed of what you didn’t know you were missing. But my life would be much different now if I had known, had gotten treatment, had a chance to do it all over.  I would get to do the things I would like to do. or at least have gotten to try them and decide to hate them later. LOL. But instead I do what I can, when I am able, when I am awake.

One of the thing I CAN do is write so that parents, teachers, nurses, paramedics, and yes, even doctors, are aware of this disorder. So that some little kid, who is just trying to sleep, wont go through the hell I did. The hell too many of us remember.


One thought on “Dormez-vous? Dormez-vous?

  1. plexyvogue says:

    Great story Marcia 🙂

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