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Staci H: 2023 National Poetry Month

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:

 

Staci H is a 16-year-old part-time high school student and part-time college student living with type 2 narcolepsy without cataplexy. She was diagnosed with narcolepsy in the fall of 2020 and is still figuring how to live her life without letting narcolepsy take over. In the following paragraphs, Staci tells us a little about what being a poet means to her and why she is sharing her poetry with Project Sleep and the sleep community.

“Juggling school with narcolepsy. Trying not to fall asleep in class and trying to fall asleep at night. Trying to stay awake while finishing homework and trying to wake up to escape from monsters that await in my sleep. This poem has helped me express my feelings about the struggles of living with narcolepsy. Poetry has been my outlet: a place to release, express, and understand my emotions. When I write poetry, I gain a better understanding of how I feel about a certain topic. The same happens when I read poetry. From reading poetry, I can start to understand the author and their message better.

This is what Project Sleep’s National Poetry Month celebration has done for me. It has helped me see that I am not alone in this and there are people who know exactly what it is like (thank you again Project Sleep and other poets). So I wanted to do the same: share my experiences—through poetry—to help others who are struggling in isolation know they are not alone. You are not alone.” – Staci H

About the Poem:

“This poem started out as a memory. A memory of a time before sleepiness, before the nightmares, before this invisible battle, before the sleep paralysis. Then it became a way to illustrate what narcolepsy is and how it affects people. Most people in my life don’t know what narcolepsy is, don’t know I have narcolepsy, or they don’t understand what it is like and that narcolepsy isn’t this comical thing that is portrayed on TV.

This poem is my way of explaining my invisible, but very much real, chronic illness to them. It is my way of helping others feel less alone because of people who misunderstand narcolepsy. So to those who don’t know what narcolepsy is or what it’s like, I hope this helps you better understand the struggles of narcolepsy. And to those who know exactly what narcolepsy is like, I hope this takes away some of that feeling of isolation and provides a sense of being understood.”

What I Miss by Staci H

I miss not having to create my own dreams
To trick my mind into sleep

I miss not waking up in fear of that intruder in my room
Who happens to be the Joker
Only to realize that it’s just a dream
A nightmare with no escape

I miss not being trapped in my body
Not in control or able to move
Imprisoned under the covers
With a rabid beast breathing down my neck

I miss my energy
The absence of constant tiredness
The whisper from that awful voice
Owned by Narcolepsy

I miss not feeling betrayed by my own body
Having a mind that seems to be against me

I miss being understood
Not living with this invisible enemy
Fighting a war under my skin
Seeming like I’m fine
I’m not

I miss my life before narcolepsy

Thank you, Staci, for sharing your poetry. Read more poems from this incredible community here.

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