Kara Sulzer: National Poetry Month Part 5

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:

Kara Sulzer began having narcolepsy symptoms at the age of 16 and was diagnosed with type 1 narcolepsy when she was 20 years old. A high school English Language Arts teacher and drama director of 13 years, this last year she has put all of her efforts into her role as mom to her two-year-old daughter. She loves to read, write poetry, and dance to records. Kara lives in Cincinnati, Ohio with her wonderful husband, amazing daughter and Glasgow the Cat. She is also a trained speaker with Project Sleep’s Rising Voices of Narcolepsy program.

About the Poem:

I wrote the first half of Seven Syllables years ago when my frustration with “the question I get” was at its height, but I never had an ending to it. It just felt like an angry rant without a satisfactory response. Then last year, after connecting with the narcolepsy community and finding it so inspiring, the answer to “the question I get” came to me and I was able to finally finish my poem. 

Seven Syllables

the question I get
from the ignorant
and I don’t mean this rudely
and I don’t mean the stupid
but those who just don’t know
whose misconceptions have been
formed by the ill interpretations
given by Deuce Bigalo, Male Gigalo

The question I get is…
“So you can just fall asleep?”
Those seven syllables fall deep inside
as once again I’m forced to explain
my existence within the confines and limitations
of a yes or no question
can, just, can, just, can, just
those words rain through my brain
like a freight train through a tunnel of invalidation
can, just, can, just
as if option and ease
were part of the narcoleptic equation

and then I contain myself and look back at them
“no” I say and I follow this up with a definition
as given to me by my physician
actually,
narcolepsy is a chronic neurological condition
an autoimmune disease
with 2 types and 4 major symptoms
EDS or excessive daytime sleepiness
Cataplexy or loss of muscle control
sleep paralysis
and the one that will scare you to death
hypnagogic hallucinations…

Oh I’m sorry was that too much information?”
I look into the innocent irises of my audience to realize
I have lost them
the medical jargon has fallen at our feet
making the canyon of understanding between us
that much more deep
and I wonder if it would be affective
if I could build a bridge with my perspective
give them some insight into my day to day life
like my constant struggle and failure to be a decent
daughter, mother, teacher and wife
or maybe I could tell them
of the questions that loom overhead
like
what exactly happens to a body and a brain, like mine
that wants to sleep only 20 minutes at a time
but every single hour of every night
and every day
for 20 years straight?

and what if my baby
who I fought so hard just to have
ending up having this too, I mean
what do I do with that guilt?

But if I go down that dark road
they will probably switch into pity mode
and no no no no no
I do have a great life
I try to live in the joy and I’m working through the strife

Or they could go the other direction
try to make it a competition
but I do not play the “adversity olympics”
and neither should they
because if we did, we wouldn’t even make the podium
so what do I say to them, to this question?

and then it hits me
I will not answer it, I will tell them
a story

Ok, so Iowa City, 2003
it’s early autumn
the leaves on the university
are turning orange and crimson
zoom in
two students walk the campus aimlessly
the conversation and their chemistry, electric
to say the least

two hours in
she stops, turns, and attempts to sound casual
when she says,
“so, um, I don’t remember if I told you this or not, but, I have narcolepsy”
he stops too, turns, stares deep into her eyes of blue
obviously something has captured him here
she meanwhile is paralyzed with fear
as to what he will say
when she hears
in his deep//ly empathetic voice
a question
“Huh, so what’s that like for you?”
Those seven syllables fall deep inside
because for the first time
she been invited to talk about narcolepsy
within the context of her life
for, you, for, you, for, you
those words fill up her heart
like a faucet turned on for a person parched
for you, for you
and the heavens seem to open with this
awesomely open-ending
and like super hot question
and then she contains herself
and looks back at him
and that my friends is the story of the moment
I knew I would marry my husband

I hope that answers your question
because I’ve got to leave it with that
it’s time for my nap.

Thank you, Kara for sharing your powerful spoken-word poetry. Stay tuned – more poems from this incredibly creative community coming soon!

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4 Comments. Leave new

  • So beautifully written and the flow is impecable. Thank you for sharing this with us. ❤️❤️

    Reply
  • Miss Kerly Bwoga
    April 23, 2021 11:48 pm

    Wow amazing

    Reply
  • I have 63 years of Narcolepsy behind me, with 36 years before it was even diagnosed. I GET that you GET it! That was a pleasure to read, and I hope to have the pleasure of meeting you someday. Knowledge is just a collection of facts. WISDOM, is knowing what to do with it! Thank you for letting us peer into your wisdom!
    -ERNIE KNIGHT

    Reply
  • Fairley Baker
    May 20, 2021 12:17 pm

    Kara u are a real star! ThAnk u for your totally amazing presentation! I have had narcolepsy since I was 17. As u said people don’t get the severity of the disorder. The moment u share with someone. So many times they would say. I think I have that too. I finally gave up sharing. Kara thanks again for sharing and many blessings ♥️

    Reply

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