What You Will Call Me

Listen to this poem here:

Origin Story

What does it mean for people living with Sickle Cell Disease to be seen, heard, and understood? For this person, it meant finding – and using – her voice to advocate for herself and for others.

During our conversation she shared the huge difference between the way she was treated as a pediatric patient and the way she was treated in healthcare settings seeking care as an adult. Following one such negative experience in which she nearly died because of substandard care, she determined to no longer remain silent.

With this poem I aimed to capture her growing sense of empowerment, even in the face of the disrespect and stigma from others.

Yvette Perry, Listener Poet
Listener Poet Session
November 2024

By Yvette Perry, Listener Poet

Drug seeker! Sickler!

Pain faker; bed taker

I am a Human Being

I am who you swore an

oath to care for with compassion—not

a stray dog to degrade with your words, and

step over in the street

Drug seeker sickler

Pain faker; bed taker

Hospital hopper doctor shopper

I am a Patient—the same person

you saw as a pediatric patient

who you listened to and tried to

turn each hospital stay into Christmas day

Turning 18 didn’t change what I need from you

Arriving at your door by myself doesn’t mean I must content myself with your miserable scraps

Drug seeker sickler

Pain faker, bed taker

Hospital hopper doctor shopper

Early death hopeless caser—

emergency room taking up spacer

I am a Storyteller

who’ll keep memories alive

of my young brother who died

and of the stranger who live-streamed you

laughing at her pain then later passed away

in her home after Security kicked her out your ER

Drug seeker sickler

pain faker bed taker

hospital hopper doctor shopper

Early death hopeless caser—ER taking up spacer

Survivor’s guilt hoarder family discorder

I am a Mother, a Sister, a Daughter,

a Friend and a Partner

I am a Child of God

I will be here for a long time

for those who depend on me, love me

I will heal the bonds I can, and pray for the rest

Charge nurse hustler! Attention guzzler!

—I am an Advocate

I shouldn’t have to impress you

with my accomplishments before you to treat me

with the care that everyone deserves

I’m creating community

and seizing custody of hope and

helping others take back their voices as I

have taken back mine

Broken blood blocker SICKLED CELL SQUAWKER!

drugseekersickler sickler sickler

faker…hop doc hospital up…hopeless…take…ER er er er…

I am a Woman and a Warrior

living with and

not perishing from this disease

I take spa days and make art to

manage the stress

My supapower is my determination

to thrive, not just survive

You know nothing about me,

and no, you won’t define me

But if nothing else, you

will call me

by my

Name

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What You Will Call Me

What does it mean for people living with Sickle Cell Disease to be seen, heard, and understood? For this person, it meant finding – and using – her voice to advocate for herself and for others.