Narcolepsy: nar•co•lep•sy

A disorder characterized by sudden and uncontrollable, though often brief, attacks of deep sleep, sometimes accompanied by paralysis and hallucinations. (Webster’s dictionary)

Narcolepsy is a persistent disease of the central nervous system (the brain). Symptoms consist of excessive daytime sleepiness, cataplexy (collapsing), hallucinations, sleep paralysis (inability to move or talk), disturbed nocturnal sleep, and automatic behavior (performing daily activities without being aware). The feeling of untreated narcolepsy can be likened to not sleeping for three days straight. This also greatly affects mental and emotional performance just as if you were awake for three days. Narcolepsy is a very debilitating disease that can severely change a person’s life. People with narcolepsy are often ridiculed for being depressed, lazy, and irritable. It affects people’s ability to concentrate and to lead a normal life. There is no known cure for narcolepsy and the treatments do not make life much easier. We have to take drugs with many side effects, take frequent naps, and have a fear of falling asleep at inappropriate or dangerous times. Narcolepsy often can cause depression and high irritability with no other direct causes. It is common for narcoleptics to lose jobs, careers, marriages, and even there lives (falling asleep at the wrong time).

Having narcolepsy is very frustrating especially for me. It is a contradiction to my personality. I am a very energetic and positive person. In fact when I was younger I was hyperactive. I do not like sitting around and I do not like being weak or not in control of my life. This makes it very hard for me to deal with it.

Narcolepsy has thus forced me to lead a very structured life which at times makes me seem; negative, uptight, and to have two personalities. I have to go to bed and wake up at the same time every day. This ruined my college life. I get very tired all the time and have to take naps everyday which makes a traditional desk job near imposable. Being tired all the time I get irritable some times and unfortunately take it out on my friends and family. The expression “someone needs a nap” when they are cranky is more then relevant and is very unsettling for me because I do not want to be that way. Many people think I am upset all the time or depressed. However, that is not the truth, I am just tired and people sometimes look upset when they are tired. (Although narcolepsy causes depression and many of the treatment drugs are also used for depression and those who have a hard time concentrating.) I do get angry some times when I am treated as if I am always negative and upset when I am not. I become frustrated especially when I can’t concentrate, forget whether or not I have done something, or become irritable for no reason.

I often become mad at myself for not being able to control all of this, and letting narcolepsy effect me so greatly. I have made the mistake of trying to forget that I have narcolepsy and denying the fact that it has affected me so much. This has cost me a few relationships including on of great importance. I have been able to be positive and alert when I am with strangers or acquaintances. But this takes a lot of energy and sleep attacks happen with out warning and I can become extremely tired within minutes. Luckily I have been able to actually fight of falling asleep which most narcoleptics can’t do. Because everyone needs some one to confide in I would often confide in my family and friends about things that were bothering me with out relating them to the narcolepsy for fear they would think I was making excuses. I did not realize that the narcolepsy made me so tired, fogged my thinking, and greatly affected my emotions. Therefore I would often say things I did not mean or get overly upset about things that would normally not upset me at all. I am in fact a very easygoing person. This has caused my family and friends to misunderstand the type of person I am and feel I am too negative and get upset to easily. They were right and it made me even angrier that I was hurting them and myself. I was mad at myself for being this way and I didn’t know that it was the narcolepsy that was controlling my inappropriate behavior

I have since learned that was a mistake. I forgot how much it has affected me and that much of the mistakes and uncharacteristic behavior are the results of the narcolepsy and I should not beat myself up for it. I always felt that if I gave in and admitted that my behavior was do to the narcolepsy that I was simply giving in and making excuses for myself. I didn’t even know myself how much my narcolepsy has affected me. Unfortunately this makes personal relationships very difficult. Many people understandably cannot tolerate or are not understanding enough of my disability. I only recently understood just how much narcolepsy has affected me and the ones I love when it affected my relationship with the most important person in my life and she could no longer handle it. I could not entirely blame her for feeling this way.

My New York City Scapes express my relationship with others and the world. I started the series my junior year in college. This is when I was diagnosed with narcolepsy. My art expresses how lonely I feel because I am always misunderstood and no one takes the time to try to really get to know me and understand the person I am. I felt as if my life was passing me by and no one understood what I was going through or what I had to deal with the rest of my life. I couldn’t enjoy the same things that others my age could enjoy. I don’t have the luxury of being able to stay up late, get five or six hours, of sleep and then function the next day. When most of my friends are getting ready to go out to have fun I am getting ready for bed. It has been very difficult to establish close relationships with anybody this way. When I am always tired it feels like the world is going by at light speed and I am only running on two cylinders. The photos are one second exposures showing how I feel when I capture a second of my life. The still images of the city are me and what I see. The blurred images of the people are my life and the people in my life that I feel are slipping past me which I just can’t seem to keep up with. I chose NYC because I went to school in Bowling Green Ohio. This is when my narcolepsy began to get out of control. It greatly affected my school work and my friendships. I began to lose some close relationships out in Ohio. I began to miss home. My friends and family from New York seemed to be more understanding of the situation because they new me before the narcolepsy became uncontrollable. I am doing much better with controlling my narcolepsy but it is still affecting my relationships and me. It always will. I will always be combating the feeling of helplessness, loneliness, and tiredness throughout my life. It is not in my nature to give up and I will continue to stay positive through my daily life. My art work will be where I release these feelings and try to have them captured in time so that I do not take my frustrations out on others or myself.