There is a part of me I ignore. I pretend it doesn’t exist and for the most part (as long as I take strong medication) I do OK. I get by. For the most part I am able to cast aside that part of me I don’t want to admit exists. I have a neurological disorder. My brain lacks a certain chemical that keeps me awake. My body actually attacks the hypocretin cells which means that my body cannot accurately regulate the sleep/wake cycles.
I have had to make allowances and I’ve had to accept that I won’t be able to do certain things but today, I was reminded that what I try to ignore is a serious and potentially dangerous condition.
“When I read your test back then I thought to myself ‘poor girl how does she function’?” My sleep doctor told me today when we were discussing my MSLT (Multiple Sleep Latency Test). She further explained by saying “Your test was impressive.” To which I responded “That’s not in a good way, is it?” She replied “You fell asleep within three minutes and went through several REM cycles [during your MSLT] anyone who falls asleep in less than 8 minutes has narcolepsy. You clearly have narcolepsy.”
She asked me about cataplexy and I told her that no, I don’t have it. As I write this I realize that I have experienced it- one time. I was about 12 years old and I was getting ice pops for my friends. One of our cats caught a rabbit and as I was carrying out the ice pops I saw the dead rabbit. I was shocked that it happened and I collapsed. I remember my whole body freezing up and I heard my friends say she fainted; she’s being dramatic. She fainted because of the rabbit. Once I came to I felt embarrassed. I brushed that incident off as fainting but now I realize that it was a cataplectic attack. SInce then I haven’t experienced one that bad (I’ve also learned how to play it safe). The way I’ve learned to control my symptoms has been through trial and error. Up until this point I told people I developed narcolepsy when I was in high school now I realize it began when I was in middle school. It just got worse in high school.
I remember falling asleep in almost all of my classes. When I was a junior one of my teachers asked me if anything was wrong. I told her that I had some family issues (I didn’t know I had narcolepsy). I remember struggling to make sense of why I couldn’t stay awake for more than a few minutes at a time. I always wrote it off as I was depressed and stressed and needed more sleep. I keep telling myself I’ll be ok if I get more sleep.
The thing with narcolepsy is that it makes your brain foggy. You fight the urge to sleep but during that fight you can’t retain memories or thoughts or ideas. Friends ask you “remember that time…” and you say no. People come up to you and you have no recollection of what you said or did. Good luck trying to remember conversations you’ve just had. Good luck trying to keep things straight.
The worst was when I was in high school and I was a youth leader for my church. I was helping during youth sunday by giving part of the message. I love talking in front of people; I love being the center of attention. The first service was great but I felt a sleep episode coming on. I remember telling my pastor that I wouldn’t do well the second time around. He assured me I did. I didn’t do well. I remember that I didn’t follow the script and that I felt like I was watching the whole catastrophe from a far away place. Since then I’ve avoided drawing attention to myself. Since then I’ve curled up in my shell because every time I try to expand; to become more, my mind freaks out and shuts down.
That is what is the most destructive part of narcolepsy. Instead of fight or flight my brain can’t handle the adrenaline and my body shuts down. My mind turns off and I am left dead in the water. I am left confused and uncertain as to what happened. People without narcolepsy have these moments. In the heat of battle or after a night of boozing yes, you can experience the same thing. My mind goes to that place without warning and without reason.
I am afraid to be myself because who I am is flawed. To keep the flaws at bay I have to control what I do. I have to be regimented. I have to have an iron clad schedule or else my mind shuts down. Life is about change but I fear it. I fear it because when faced with the unknown I don’t have the ability to decide what to do. The plus side is that if I have to face a similar situation I can “keep it together” I have honed certain skills out of the sheer need to be independent.
Most people with narcolepsy don’t drive because they get tired behind the wheel. My friends and family will tell you I go insane if I get myself from point A to point B. So I drive and I make sure I am safe. I down energy drinks and caffeine until I want to puke but I stay awake.
I have had to let go of my dreams of competing in eventing. I’ve had to give up jumping and I have also given up riding. At this point in my life riding isn’t something I am physically or mentally capable of. Which makes me so mad. I am furious that my body and mind are against my dreams and goals. I am furious that I have to deal with these insane symptoms. The thing I am most furious about is that I cannot explain to you how much it hurts when people brush this disease off or crack jokes about it. This disease is mysterious and therefore not serious.
Oh, how I wonder who I would be if I wasn’t constantly waging war against myself. I wonder who I would be if I was free of the desire to sleep. I sit here and write this because I’ve locked myself away. I’ve thrown out the key because letting go means I’d have to deal with emotions I cannot handle. Now, I have to decide if I should give up working full time and instead look for part time work; but how can I take care of myself if I’m unable to pay my bills. I just want answers and I just want peace. I just want to know that there is something stable in my life. I just want to be me but that isn’t an option.
Read more at: Narcolepsy Not Alone Julie Flygare has worked hard to bring awareness about Narcolepsy into popular media.