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Amanda’s Story

by Amanda Vasas

When thought of logically, there are approximately 3,750,000 people on the planet that have narcolepsy. That’s A LOT of people. But a lot of the time for those of us WITH narcolepsy, it feels much more like that “1 in 2,000″, with most of the emphasis on the “1″, than anything else.

Life Pre-Narcolepsy
When I was 16 years old – a sophomore in high school – I started passing out up to 5 times a day. I would be in the middle of a conversation, or walking to the bathroom, or watching TV and just fall over, completely dead weight, and be unknown to the world for about 3 minutes. I even had a security guard at a concert complete the “pain stimuli” tactic to “make sure I was really unresponsive” once and he did it so hard and for so long that when I woke up I had a hole of my skin worn out on my sternum and was bleeding profusely from it. (Pain stimuli response: take your index finger, bend it, place your knuckle on top of your sternum, and rub. It hurts even if you don’t add pressure, but imagine a 250lb man doing that to you as hard as he can.) My mom and I went back and forth from doctors office to doctors office and no one could figure out what was going on with me.

Eventually, I had to be taken out of school. Up until then, I had been an honors student and on the JV softball team, as well as taking part in tons of other after school activities. My life was in shambles. My mother was a complete wreck and wouldn’t let me out of her sight, or even out of the house, out of fear that I would inevitably come crashing down to my doom. When I went to the bathroom I had to keep the door open. When I showered my mom sat on the toilet. Since I could never go out, my friends stopped talking to me. I already felt like nothing, and it was very easy to feel like not only was I nothing, but I was more alone than the most alone person on the planet. I would spend sleepless nights playing The Sims, or reading, or starring up at my ceiling and trying to cry myself to sleep, but just silently soaking my pillow with my tears instead. I stopped eating, I wanted to do nothing other than lie in bed and wallow. I even told my tutor to stop coming over to the house because I didn’t even want to do school work, and I was that kid that could never have ENOUGH school work to do.

The Diagnosis
One day I passed out and smacked my head on the concrete floor. After being checked out, my mom was told to wake me up every hour or so in case I had a concussion so I wouldn’t fall into a coma. My mother never even had to set foot inside my room once because I would either go out to her, or shout out “I’m alive” whenever it was time for one of her checks. She always knew I had a problem with sleep (when I was little I would sit up in my crib playing with my toys until about 2 in the morning. When I could walk, I would go out into the living room and watch TV in the middle of the night without my mothers knowledge. She would even have to wake me up on Christmas morning because I’d sleep until 11am and my brother and cousins would be waiting for me to open gifts. What kid sleeps after the crack of dawn on Christmas? One with narcolepsy, that’s who) but the fact that I was actually up all night and she was completely aware of it got her thinking. The next day she asked for a referral for a sleep study.

I had your typical sleep study: in bed at 10pm, sleep until 8am. Day two consisted of 4 scheduled naps for 10am-1030am, 12pm-1230pm, 2pm-230pm, and 4pm-430pm. I hardly slept at all during the night, and was awake when the tech came in at 8am to wake me up. When I had my first nap I was asleep before the tech even left the room and dreaming a minute or two later. By the time I had my second nap I was dreaming before I was even asleep, but sleep came very quickly. After my second nap the tech told me my study was complete, there was no way they would need me to do the final two nap cycles. When I inquired about it, he told me that while he was in NO position to diagnose anybody, he could see my brain waves matched and surpassed any of the other he had seen who were diagnosed with narcolepsy. Then he told me not to drive home, haha.

Post-Diagnosis
I don’t think I’ve ever been so happy in my entire life to be told something was wrong with me, and especially something like this. I had always been so engaging and upbeat, but I constantly felt physically drained, and no matter how much I slept I would always feel just as drained. I could sleep 16 hours and still need 3 naps during the day to feel okay. I felt like an idiot, a lazy sack of nothing useful to nobody, someone who was never going to be able to do anything with my life because I would never be awake enough to do it. I had to shoot past the moon and into the universe in the HOPE I would MAYBE land on a star, even just a dwarf one. The concept of “being a morning person” was so alien to me because I was a “never person”: not morning, not afternoon, not night. My first thought when I did anything was “ugh but I’m so tired!” and if I voiced this to anyone I would be called lazy or be told to get a grip – I tried so hard to hang on all the time but it was getting more and more difficult. Being diagnosed mentally fixed it. It was someone saying “hey kid, you’re right, there IS something wrong. You’re not lazy, you’re not broken, you’re not useless – you have a disorder you have no control over and IT is what is doing this to you.” I felt renewed, reborn. To go your whole life thinking you’re being silly or overdramatic and then be told that what you’re going through is a real thing and there are even tons of other people going through it too is like a warm blanket in the middle of the coldest day of the year. And it gave me hope that I could go on.

I never want another person to feel as alone as I did. I still have my moments of loneliness because I truly believe that unless you have this disorder you will never – ever – understand how it can make you feel. I know people look at me awkwardly when I say I’m tired, and I know I’m a little bitter when someone says to me “Ugh, I didn’t sleep at all last night. I’m so tired – you just don’t get it.” Oh, I get it, and I get it far and beyond your microscopic idea of what “being tired” is. But this is who I am, and I’m not going to let a disorder confine me. I have since gone to, and finished, college. I work full-time in an incredibly fulfilling job where the people I work with understand and respect what I go through living with this every day. I have a partner in my life who doesn’t belittle me or make me feel silly when I tell him I’m tired or need to sleep. I have a hero of a mother who still asks me how I’m sleeping every time I talk to her, and who only sleeps soundly when I’m home with her because she knows I’m truly safe. I have an apartment which I pay my own rent on. I pay my own bills. I have a dog. I have my own life and I’m in charge of all of it.

My name is Amanda Vasas. I’m 26 years old, I live in Boston Massachusetts, and I have narcolepsy. I am one in over 3 million, and I can finally say that I’m not alone. And neither are you, and you never have to feel that way ever again.

email Amanda

2014