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.