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Breathing Room
facilitates candid and open communication between adults with Cystic Fibrosis, supports the development of a community of adults with CF and provides education and insight for families, caregivers, and medical professionals who impact our lives.

Scene

By Michelle Compton

--SCENE--

Time: 1980 Place: Houston, Tx

I am standing in a long corridor, with my mother. In my mind’s eye, I am 4 years old, with pigtails, and pink overalls, holding a stuffed animal dog in one hand, and my mother’s fingers in the other. Logically, I know that I am 13, and wearing hot pink corduroy overalls. We walk this hall together, in heavy silence, she in her white slacks and navy t-shirt with the red apple appliqué. The walls are post WWII industrial mint green – but our focus is on the yellow iron lungs peeking from the alcove. Though they are only two in number, the pall they cast is a heavy one, symbolizing a twist of fate throughout the eternity of possibility.

What is not said between us falls into a chasm we will not be able to cross for more than a decade.

Cystic Fibrosis? C-period, F–period. Fragments of data flicker in my neurons. Those that fire repeatedly reverberate “Progressive, Fatal”. At thirteen this makes no sense, an abstract concept that soaks into my pores and weighs me down. “Life expectancy: 18”.

I want to cry. I want to be consoled. I want the tears dried from my eyes and it all to be made better. But that will not be. We will talk of this to others in hushed secretive tones; deny ourselves comfort, live in shame because of an amino acid jigsaw puzzle gone wrong.

I am confused and angry. I arrived days ago with runny poops, a stomach ache, and food allergies. I am leaving with a debilitating lung disease, and an assurance of a painful early death. How did this happen? The hospital has not only given me a label, but a death sentence.

--END SCENE--



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