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

By Roxana Alvarez

Have you ever woken up not knowing where you are or who the people around you are? Lydia Velez-Herrera has. On Thursday during common hour, November 9th 2017, students and faculty were given the opportunity to hear Lydia Velez-Herrera, founder and president of “Lilly Sin Barreras”, discuss her experience as a traumatic brain injury survivor. According to Ghajar (2000), traumatic brain injury is one of the most common causes of death and disability (Ghajar, 2000). Carlson (2014) goes on to say that traumatic brain injury is a serious problem in which approximately 1.4 million people are treated and released from an emergency department, 270,000 people are hospitalized, and 52,000 people die from each year (Carlson, 2014). Translated in English, “Lilly Without Borders” is an organization that provides legal, informative, and personal support to those that have suffered from brain injury or those that experience cultural, language, or financial barriers. As Herrera’s presentation title “Can You See Me, Can You Hear Me” suggests, she and her organization are driven by the motto, “I Can See You, I Can You Hear You”, as they aim to provide resources to those who don’t have them or don’t know where to find them. During her talk, Lydia described how she was moved by her own experiences with TBI. Through them, she came to understand that sometimes all a person needs is an extended hand. At the age of forty-one, Lydia Herrera woke up and didn’t know where she was. During her talk, Lydia described how the members of her family became strangers to her. She became somewhat of an “adult child” and travelled to Puerto Rico to be with her mother who had to care for her. She expressed how, in Puerto Rico, she spent her time in eight hospital units, all contributing to her becoming overly medicated. During this time, Herrera felt as if she was constantly being watched. Her confusion with the disorder and, and with the way she felt she had to act, often led her to ask herself the question, “What’s happening?” She described that even the act of watching TV affected her negatively; she was easily overstimulated by the people and noises coming from the screen. As her emotional rollercoaster progressed, she was anchored by one quote that she repeated to herself constantly, “You can shake this.” Herrera was put in a position where she was made to understand many realities. At this time, judgement became an important quality in people to her. She claimed that when it comes down to it—intention is important. Perhaps she would be asked questions, (for example, “Do you speak Spanish?” or “Do you have a disorder?”) and that was okay—so long as the intention behind people’s words were not hurtful. As she progressed in her recovery, she also realized that it is important to not submit one’s self to his/her limitations (whether physical/mental/psychological/etc.). She met many people that pushed the idea, “I’ve always been this way” and, because of this, didn’t believe they could get better. She refused to hold on to this. On her search for healthcare providers, she learned that sometimes it takes people that are completely different from you to help you and that it’s important to be patient with, and stand up for, people with neurological disorders. Though Lydia’s TBI contributed to her struggling physically, socially, and emotionally, she expressed how, because of it, she grew stronger—especially in the fact that she never gave up on her own growth/improvement and refused to ever be anybody but herself. In having this experience, Lydia now aims to be a source of help and support to all of those in need—whether it be by providing them with information, legal help, or a general helping hand.

For more information on Lydia or Lilly sin Barreras, call +1.8609668955 or e-mail lillysinbarreras@yahoo.com

References Carlson, N. R., & Carlson, N. R. (2014). Foundations of behavioral neuroscience. Harlow: Pearson Ghajar, J. (2000). Traumatic brain injury doi:https://doi.org/10.1016/S0140-6736