Advocating for Myself and Others Through My Journey with Narcolepsy
By Dayle Lane (Tau, Brenau University)
This article is an excerpt of a longer piece shared in the summer 2021 Lyre. Visit our website to learn how you can receive The Lyre.
I remember walking in the hallway as I headed to class in the seventh grade when all of the sudden no one was there and I was fading into darkness. How long I was in that state is a blur to me, but I remember being woken up and taken to the clinic. After several years of this unknown illness and countless doctors’ appointments, I’ll never forget the nurse making the suggestion, Maybe she fell asleep? The next doctor I went to was a sleep specialist, and by the time I was heading into ninth grade, I was officially diagnosed with narcolepsy.
Narcolepsy is a chronic neurological disorder that affects the brain’s ability to control sleep-wake cycles. Symptoms often include periods of excessive daytime sleepiness and brief involuntary sleep episodes. Many individuals with narcolepsy also experience uneven and interrupted sleep that can involve waking up frequently during the night.
My undergraduate college experience was the ultimate test of being outside of my comfort zone and a whirlwind that was figuring out life with narcolepsy. On top of normal stress and anxieties of starting college, establishing a new daily routine was crucial for my health, and I needed a new support system. My sisters were always there. From supportive talks, encouragement or even reminding me it’s past my bedtime, these best friends truly became my family.
During my sophomore year, my new member class was hearing the expectations that come with living in the house for the first time. We were talking about what to do if there is a fire, and I vividly remember my class members saying, “I’ll grab the charter!” “I’ll grab the coat of arms!” and Dana Cole saying, “And I’ll grab Dayle in case she is sleeping!” We all were laughing in the moment, but I remember my eyes filling with tears of joy because my sisters were continuing on about how important I was and saying, “While we can get a new coat of arms, we cannot get a new Dayle.” Although thankfully there was never a fire, my sisters never saw anything I needed for an accommodation as a burden on them, but as a way to show me how much love we share in our Bond.
Because of the strict sleep schedule I had to maintain in order to stay healthy, I was put on a special accommodation plan for the chapter events I could not attend. As a member of the chapter relations and standards board for three years, I was able to take that knowledge into my role as an Alpha Chi Omega chapter consultant. As a chapter consultant, I was stretched outside of my comfort zone and truly learned through that experience to ask for what I need. On my first chapter visit, I was talking to a sister about some of the things she struggled with, and we discovered that we both had narcolepsy! It was an amazing feeling knowing that not only am I not alone, I found someone who shared a bond in more ways than one.
After that visit, I became more open about my disability. Through my journey, I have taken on the responsibility to be open about the things I face in the hopes that I create a safe space for others wherever I go. By being my authentic self and sharing who I really am, I want others to feel they can be real around me and share their stories with confidence that they will be accepted.