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delF508 and 2184delA

Essay by Hannah M., 2018 Scholarship Recipient

delF508 and 2184delA

What will these mean if my genes are corrected?  Will it just be meaningless ink? Will it be a prison serial number, locking me behind the bars of my past illness? These thoughts buzzed around the room, drowning out the tattoo gun.  As the stains in my skin shaped the names of my mutations, watercolor moments of Cystic Fibrosis splashed across my mind.  

delF.  Because of CF, I can write vignettes about IV line placements, poems about headlining in the hospital freak show, essays about the pulsing behind my eyes with every stair I climb.  508. It’s why I’ve spent weeks in a hospital room, chained by an IV line and isolated from my family.

2184.  Isolation also brings pain: black spots filling my vision like spilled paint as I cough, the smell of vodka and puss in the operating room.  But finding people who understand is like the euphoria from a morphine drip. delA.  The first missed more school than I.  Another—whose lungs also struggled to expand—helped me weather freshman year.  I watched them collapse like dying stars, their illnesses crushing them. But they wouldn’t let it happen to me, and now I shine into the blackness with strength from them and my family.

As the artist wrapped my tattoo, contentment settled into my body.  Even with a cure, CF will always be a part of me, stitched into every aspect of my life.  Even if my gene mutations are mended like broken bones, the muscles of perseverance and maturity my family and I built—to hold the weight of illness’ chains—can’t be atrophied by a cure. delF508 and 2184delA will always be part of me, with or without the mutations in my DNA, outlasting the ink on my ankles.

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