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I was old enough to remember the doctors and the teachers and the therapists
all painting their tombs white when they thought I wasn’t looking.
“You’re just a little sick, sweetie. It’ll be okay.”
Says who? The brain scans, or you?
I spent my nights wrapped up in bleach white sheets
listening to my heart thump on a little silver machine.
I had this reoccurring nightmare where it just stopped.
I guess growing up like that makes you different from the other kids.
Other children spent their Sundays vrooming tonka trunks and playing tag with daddy.
I spent mine barfing up dinner and listening to mommy cry.
There were some perks that came with being Terminal with a capital T, I guess.
I mean, I didn’t have to go to school.
It’s kind of hard to write when your IVs keep getting in the way.
And...I could eat whatever I wanted.
Not that I ever wanted anything,
or could keep anything down for that matter.
Being sick like that hurts so much physically.
But I think, for me at least,
the emotional damage always cut the deepest.
I remember feeling guilty when momma went to the other room to cry,
like maybe it was somehow my fault I was Terminal.
I stopped looking other little girls in the eyes
because I always seemed to find something I lacked.
At the time, I think I called it ‘hope’.
My life became weaved together with words like 'life expectancy' and 'treatment options'.
Every time I fell asleep, it became a habit to say goodbye just in case.
A little girl shouldn’t have to think about dying in her sleep.
I feel that I should mention that the point of this poem is not to solicit sympathy,
and not even to make you sad.
I am sharing my struggle with you in the hopes that you might find hope in what I am today.
I was six years old when I got the diagnosis.
I was seventeen when I stopped letting it define me.
So yes, I am still sick,
but now I know that ‘sick’ is not who I am.