Dream a little; sleep a little more!

By Sababa Anber

Do you ever feel that you cannot distinguish between dreams and reality? For those living with narcolepsy, the line between wakefulness and sleepiness is so blurry that one can look like they are perfectly awake, but their mind is far off on a vacation. My friend Elizabeth was diagnosed with a severe case of narcolepsy with cataplexy when she was in 6th grade. It crept up on her as she’d fall asleep at the ballet bar or in the middle of a friend’s party. It was painful for her to recognize that something her sisters assumed would be a passing personality quirk has proved itself to be a permanent burden in her life. Narcolepsy with cataplexy is a condition in which both sleep and wake states are disrupted.  Since becoming a narcoleptic, Elizabeth has never had a normal night’s sleep. It is not about her simply being tired. On a daily basis she copes with disrupted wakefulness and she will never sleep a night with normal sleep architecture. Elizabeth takes Xyrem, the most controlled substance in the U.S. that is only dispensed by one pharmacy in St Louis. It is deliberately manufactured to be short acting and foul tasting in order to discourage its abuse or use to harm someone. In fact, in drug circles it is known as the date rape drug, so she has to be extremely careful about keeping it safe and private. Xyrem knocks Elizabeth out, once at 11 pm, and then she wakes up, goes to the bathroom and takes it again around 2am, all of these just so that she can function normally; or at least hope to, like a regular person. Narcolepsy prevents Elizabeth from taking late night dance classes, having sleepovers, or reading for long hours (which she used to love to do). Plus, it can be an embarrassing disorder as well. People constantly take photos of her sleeping and laugh as she drifts off in class. Her teachers and friends sometimes question the legitimacy of the disorder. They sometimes won’t take it seriously– suggesting that she go to the nurse, or take a quick nap and then everything will be fine, frustrating her in her every step in life. She uses her functioning and awake time very carefully so that she can live the most normal life possible. She doesn’t, for example, drink alcohol (which is prohibited on her medication anyway). And she has restricted extracurricular pursuits. She spends most of her waking hours, which are very limited, studying, eating (meals are her main social life) or in class or at her job. She was in a dance group first semester which she resigned from in order to keep focused on her academics. In the past, she has fallen asleep during an exam and this resulted in the teacher having to create a substitute exam. On other occasions she has taken an exam while appearing awake and looking at the exam upon completion, it was evident that she was in a partial REM state and had written jibberish, and had to retake the exam. Lastly, an interesting part of having narcolepsy is that it comes with an incredible command over dreams. Narcoleptics have extremely vivid dreams and nightmares which are interesting to hear about. Every time I do not get sufficient sleep, I just remember that I am lucky to have the capability of sleeping normally when I want to. We must all appreciate our time awake and try to accomplish as much as possible. References: Elizabeth Sockwell, Class of 2020, Trinity College

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