win big, mama's fallen angel

Thesis work. I am posting for my own records, but also I'd love feedback. I need a draft by Aug and I am trying to get a good 20+ pages to my director before next week.

It wasn’t until sixth grade, my hair crimped, a black guns-n-roses t-shirt, when I reluctantly followed my mother for the last year to M Elementary school to meet my new teacher, that I remember becoming aware of what this meant. What CF meant for me. I smiled nicely at the teacher, checked the class lists to make sure my BFF Lo was in my class. But I felt something different in that meeting and so later that night I snuck the “A Child in your Classroom has Cystic Fibrosis” pamphlet from between the Salem menthol 100s and bottle of my enzymes in my mother's purse and crept into my room. I had never read that pamphelt or much else about Cf before that time
“CF is a genetic disease. It is the most common life-shortening disease among caucasions; people with CF are living longer than ever often into adulthood (age 18 and older). Thick sticky mucous builds up in the lungs leading to recurrent lung infections. Malabsorptions leads to poor growth, stomach cramping, and frequent, loose, foul smelling stools. Other complications such as liver problems, diabetes, and reproductive system effects can occur.”

How could I look at myself: a girl people often remarked as lovely and assimilate words like sticky mucous, foul stools? It wasn't those things. I was those things. I had all the issues listed, but I didn't want anyone to know. To associate me with those words.

Some little part of me died that day. The ignorant part. Maybe the girlie butterfly part, if I had ever had one (I was, after all, a girl with crimped hair in a guns-n-roses t-shirt). I’d already had a rebellious streak. I was already irritated with the doctors who said I should not have a cat, who said I might start my period later than my pers, the constant flu shots and breathing tests. The social workers who meant well but who spoke in such a maple sugar sweetness that I simply wanted to bite them.

But that moment, reading that pamphlet, I felt the hope of a normal life being sucked away from me and in that vacuum I grew talons from my hands rays of red sprouted from my eyes. CF would not take me. I would not be thick and sticky and foul. It wasn’t a war I was waging, it was an absolute obliteration of all expectations. It would be a disinigration of every word every written about Cf in relation to me. I would not be what they said. I would need nothing. CF was an earwig and I was a shoe. If I'd idolized the rock goddess heroines of my MTV youth before, now I would become one. I would be shiny, golden, cherry red lips, a girl who was beautiful and desirable and wild and who in her three minute moments of MTV glory would never cough or shit or be anything other than perfect.

I became, at that moment,twelve year old girl with CF who didn’t have CF.


all writing on this blog is copyright of Shannon North