16 Jun Narcolepsy Diagnosis Leads To Strength, Perseverance And Purpose
“Going Beyond The Impossibilities” by Ashley Deneen
“ASHLEY GET UP! BABY PLEASE GET OFF THE FLOOR!” Those were the first words I remember my parents frantically screaming after I unexpectedly collapsed, and hit the bathroom door while standing in the hallway of my house. That was in early 2008. It wasn’t until 2009, during my first year of junior college, that I was diagnosed with Narcolepsy without cataplexy. My doctor went on to tell me that I went into REM within two-minutes of me falling asleep. Wow!
I remembered in my psychology class in high school, I learned about rapid eye movement stage. It really amazed me because I could remember most of my dreams. I also noticed that there was a change in my behavior. I was cranky about everything. I would forget where I put the remote, car keys, etc. Even if I went to bed early, I would wake up extremely tired. I promised myself, I wouldn’t tell anybody about this. I wanted to live life as normal as possible.
After I finished two years at junior-college, I decided to move to Nashville, TN with my sister and cousin to finish my undergrad degree. I didn’t really talk about Narcolepsy; I just wanted to prove to myself I could be independent. The majority of the people, including my close family, did not understand my condition. I would have my good days, along with bad ones. I mean just imagine, being in your early 20s being so forgetful, making plans with friends, and you have to cancel last minute because you’re sleepy.
While in Tennessee, my social media posts showed that I was doing great in Nashville. I was an intern at a local radio station, working with the Communication Department on campus, and enjoying life. What people didn’t know is that I was oversleeping for some of my classes. There were some days I would wake up so late, I wouldn’t even go because I didn’t want people to stare at me as I walked in and there was ten minutes left of class. I had the accommodation of recording my lectures during class, but the downfall is, I would forget the material during the test. My anxiety would kick in during exams, and sometimes it wouldn’t be a great outcome for me. These kind of things are hard to deal with. I kept telling myself that things would be great, “just try to blend in with everyone else.” After joining a few organizations, life was good. I still continued to only share my disorder with a few people. Too many people would make assumptions about me, wondering if I was really faking, or would joke about me having Narcolepsy; some people would ask me really weird questions. I remembered in high school, during my junior English class, I had a hard time staying awake. The teacher would purposely stand behind me to read from my book (out of all students), just to make me stay awake. I would fall asleep, and wake right back up, and the other students would snicker about the fact that the teacher would do that because I guess everyone thought that I was just sleeping casually. I believe that situation ensured me not to talk to many people about it after I was diagnosed shortly after. However, staying in the campus apartments, I had to let a roommate or two know about my condition. I gained two close friends because of experiences of me sleeping in random places in the apartment, scaring them half to death! One in particular would ask me all the time after was I OK? It was fun hanging out with these two because they knew what I was dealing with, and accepted me for who I am.
I didn’t notice until I was approaching my last year that something was not right. I will never forget having a brain fog while on Briley Parkway. I forgot where I was completely. I just knew that I wasn’t happy with the way my life is going and knew this disorder was bringing the worst in me. I was crying A LOT, and wasn’t happy about anything. I flew back home for a weekend to get some paperwork done for school. Even being surrounded by loved ones, I was so depressed. I would just cry, and stay to myself. On my way back, I cried so horribly! My mother called my doctor, and he said not to let me get back on that plane. I went to the doctor and was told I needed to be under evaluation for a while. I could go back next semester. “Ok you aren’t crazy Ashley” is what I said to myself. “Try yoga.” After talking to my grandma, she told me simply I worried too much. I have to realize that things happen. ‘You’re just going through something right now”.
It wasn’t until I came home that I finally did some soul-searching with myself. Getting in tune with who I am, and what I’m dealing with helped me realize that the race is not given to the swift and the fast. I stopped trying to figure out how my life would go and realized that people who want to understand will understand. I can’t make anyone understand me, all I can do is LIVE! This is me! I have a neurological disorder and I have to accept this. So staying home really did some good for me.
I stayed home and recently graduated from the University of Missouri-St. Louis in the spring. Even though it took me a while to graduate, this experience showed me that I was delayed not denied the opportunity to do so. Now I serve as the youth director at my church, and I have kids that look up to me and tell me I inspire them to do great things. Just imagine, if I wanted to do things my way, I wouldn’t have been able to accomplish some of the things I’ve done. This past fall, I had the chance to speak as a past recipient of the scholarship fund at my church. With the variety of age groups, I was able to inspire those of all ages. I will never forget an older woman who told me she wanted to go back to school because of what I said. My story helped someone realize you can go beyond all impossibilities. Now as a graduate, I want to continue my education, and inspire everyone. In this life, we are offered the same opportunities to do anything we want. Though grandma isn’t here anymore, her words will never leave me. Life is not a fast race. I know for me, this is only the beginning!
Wake Up Narcolepsy appreciates people like Ashley sharing their stories with us. It allows all of us to learn what it is like to live with Narcolepsy from a variety of perspectives and experiences. Thank you, Ashley!