Narcolepsy Ruined My College Graduation
My type 1 narcolepsy onset began in 2016, in the beginning of my junior year of college. My cataplexy attacks, constant uncontrollable sleep attacks, and hallucinations did not respond well to medication options available to me at the time.
I struggled intensely in college due to my multiple disabilities, which was what made my graduation day so important to me.
A high achiever with uncontrolled anxiety
I was a first-generation university graduate, and there was a lot of pressure and pride that came along with that title. I graduated summa cum laude, with honors, at the top of my class. I truly believe that the chronic stress that I was under to make that happen took years off of my life.
I also had severe uncontrolled anxiety and depression during this time, worsened not only by my new narcolepsy symptoms but also by the medication that I was taking to treat them. I hated how much my new symptoms limited me. I hated myself for not being able to control them.
In and out of consciousness on the big day
On my graduation day, sitting in crowds of people thrilled that they finally MADE it, the air vibrated with a hum of excitement. The sounds, smells, and emotions were at an all-time high – and yet I couldn’t keep my eyes open.
I pinched myself with my fingernails, hard enough to break the skin, and I was still dozing in and out of consciousness. I couldn’t understand the speeches very well because of my inability to keep my brain awake – and my severe hearing impairment sure didn’t help either.
Feeling hopeless in my fight against my own body
I cried in the parking lot after my graduation, enraged at myself for being unable to stay awake and feeling hopeless about the fight against my own neuroscience.
I had recently decided to stop studying for the MCATs because of the lack of disability resources centers located at any medical school I could find in the U.S. I did not want to have to continue to fight the system (even more than I already had to in my college days just to get the bare minimum of accommodations) as well as constantly fighting my own body.
I wasn't able to fully appreciate my accomplishments
My experience at graduation felt very representative of my experience at college with narcolepsy. Even though I was sitting in the same classes as other people, I was receiving a lower quality education because of my disabilities.
Staying awake in class had become impossible for me. I would drift into my paper, taking notes through the sleep, and wake up to gibberish on my page. I’d sit at a lecture and catch maybe 30 percent of what was covered due to my inability to stay awake and properly hear them.
And yet I’d pushed myself to the limits and made it to graduation day. Sitting amongst the swarm of new graduates, I wasn’t even able to fully appreciate my accomplishments and the whole experience because I was falling asleep.
Finding ways to appreciate and reward myself
Three years later, I am on disability due to the severity of my symptoms. Working a “normal” job proved too much for the severity of my condition.
I’ve found ways to still create, despite it. I have my writing and my art. I still have a bachelor’s and master’s degree in biology. And today I bought myself flowers.
That all has to count for something, right?
Do you feel that others judge the severity of your narcolepsy based on how you look?