Mikaylie Neptune: National Poetry Month Part 3

April is National Poetry Month! Project Sleep is proud to highlight poets and poetry from our community throughout the month of April. Curated by Ana Lara.

Meet the Poet:

“My name is Mikaylie Neptune. I have lived in Austin, Texas my whole life and I’m currently a senior in high school. I was diagnosed with narcolepsy during my junior year. My symptoms, however, have been going on for years. I remember constantly being tired throughout my middle school and early high school years. I would fall asleep in bathrooms, buses, and during class lectures. Everyday was a struggle. 

I was scheduled for a sleep study and the study showed that I definitely have narcolepsy. I felt joy knowing that something explained the exhaustion I felt. I still struggle with tiredness from when my body starts adapting to the new medication. Those are the times when I want to lay in bed and sleep for days. It’s difficult when I miss big events because I can’t get up. Those moments also make me grateful for the times when I feel awake and make me try to live those days to the fullest.”

Sleep the Medicine and Yet My Disease

Sleepwalking through the days,
People saying it’s just a phase.
A call to sleep I can’t ignore,
Being awake is an all out war.
Chest tightening, eyes watering
I feel my strength faltering.
Exhaustion I never knew could cause such pain.
Tiredness that is hard to explain,
Saying I’m sleepy does not do justly.
It comes on slowly or abruptly.
Plans canceled, days slept away.
I pray everyday that today is the day,
I wake up and be okay.
Everyday the prayers are unanswered.
Pills I take give some relief
At least I can make it through the day.
As I close my eyes hoping night would last forever,
The pain stops as I fall asleep.
Sleep is a curse, and yet I dream for it.
I’m a prisoner to the bed I can’t leave.
This will get better I truly believe!
Until then I will fight through each day,
Knowing a time is coming when this pain will be gone,
Leaving only a memory of the sleepy days.

About the Poem:

“The poem I wrote was my own experience of narcolepsy and living with a sleep disorder. I wrote this poem actually for a school project, but when I started writing all my emotions from the past years came gushing out and it felt so good to express my pain. For me, writing says more than words can. Even though people close to me put in the effort to understand, they will never fully be able to comprehend what it’s like to live with a sleep disorder. Being able to write about my illness, that is usually invisible to those around me, felt very validating and has helped my friends, family, and teachers see what I fight through everyday.”

Thank you, Mikaylie for sharing your work. Stay tuned – more poems from this incredibly creative community coming soon!

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3 Comments. Leave new

  • Wonderful piece really captures the feelings of living with narcolepsy.

    Reply
  • Wow! So powerful and also so insightful. You inspire me to be a better advocate and supporter!

    Reply
  • Ernie Knight
    April 14, 2021 8:14 am

    You do a beautiful job of conveying the psychological/social aspects of living with Narcolepsy. It’s difficult enough for people to understand the medical implications of Narcolepsy, let alone the social impact. Thank you so much, Mikaylie!

    Reply

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