Sickle cell does not have me

A pantoum on sickle cell disease

Note: a pantoum is a poem composed of four-line stanzas in which the second and fourth lines of each stanza serve as the first and third lines of the next stanza. The last line of a pantoum is often the same as the first.

I am not a sickler
though daggered storms pierce me, snakes
weaving through each crescent crevice
I always remember Mother’s words

Though daggered storms pierce me, snakes’
jaded glances doubt my deepening pain
I always remember Mother’s words:
“You have sickle cell. Sickle cell does not have you.”

Jaded glances doubt my deepening pain
the morphine isn’t working anymore–I know
I have sickle cell. Sickle cell does not have me.
Is anyone listening?

The morphine isn’t working anymore–I know
I am human before I am patient
but is anyone listening?
I close my ears and journey to my moon.

I am human before I am patient
weaving through each crescent crevice
I close my ears and journey to the moon:
I am not a sickler.

This poem was inspired by an encounter I had with a patient living with sickle cell disease. I tried to capture their complex emotions and experiences. I chose the pantoum structure to reflect the cyclical nature of pain and adversity experienced by those with sickle cell disease. I also sought to highlight the patient’s humanity and resilience in the face of a disease that often defines them in the eyes of others. Ultimately, I wanted to emphasize the need for empathy and awareness in addressing the needs of those affected by this disease, reminding us of their shared humanity.

This piece expresses the views solely of the author. It does not necessarily represent the views of any organization, including Johns Hopkins Medicine.