CF, in large part, has forced me to be my authentic self. I couldn't hide from it, nor could I hide it from others. CF, for my entire childhood, ruled over me like a gargoyle perched up on my shoulders. It weighed me down. It made me sick. It physically altered my appearance and stamina; I was grotesquely skinny and pale, with dark sunken eyes and stringy hair, my voice permanently altered by years of harsh medications that scarred my vocal chords. Throughout school, I was ostracized and bullied as a result of my CF. Many kids and adults feared I was contagious. Many parents refused to let me stay for birthday sleepovers because they didn't know how to take care of me and were afraid I'd keel over dead. I used to enjoy singing when I was little, but now as an adult, I can barely hum a tune without my voice cracking, let alone sing.
Even when I was in middle and high school, going to Tae Kwon Do four times per week and going to a school that emphasized athleticism (that school being called Girls Athletic Leadership School), I still appeared frail and weak. I still fell sick often, and I was unable to keep my CF a secret no matter where I went or who I knew. Even when I thought I'd successfully hid my CF from everyone, someone close to me (especially my mom and grandparents) would scream my "secret" for the world to hear, and once again, I was no longer just a girl or woman. I was a disease. A disability. A walking health hazard. Akin to a rabid wolf, foaming at the mouth and almost bald with mange. Something was fundamentally fucked-up about me that I couldn't change. And, even if I could hide it, my family wasn't shy about revealing my deepest vulnerabilities to the fucking universe.
So, to take back my life-story, my dignity, my strength, I decided just to own who I was, and amplified the things I was proud of the most. My mom could tell everyone about my CF and Autism, but she couldn't force me to retire the camo, or my love for nature and science and video games, or my obsession with 4X4's and firearms, or stop me from being physically active (to the point of being detrimental to my health), or get me to tone down my redneck country music. And, when I owned and amplified the parts of me that I loved, suddenly my family's constant hawking about my CF was drowned out by my obnoxious redneckness.
On top of that, my family's rudeness (for lack of a better term) turned me into a writer. If I could organize my life from my point of view onto paper, I could process it, own it, and publish it with my name stamped on it, so that nobody could take or bastardize my identity, my story, my experiences ever again.
Don't get me wrong, I love my mom and grandparents to bits, and their points of view are an important aspect of my life story. But, they sure as hell don't get to "own" my story, in the sense that they can speak over me anymore. I cannot and will not allow that.
Along the same vein, I want to drive a massive wedge between me and my conditions as much as possible, as I am not my conditions. I am not CF. I am not ASD. I am not my depression, anxieties, or my phobias or my fears. I am not any of those things. I am who I am because... well... it's just who I am. Did my health issues play a role in shaping my personality? Sure. But, can they explain my love for nature and science, my addiction to World of Warcraft, my need to physically stay active, the foods I love the most?
No, not really. There are lots of people out there with both CF and ASD who have wildly different interests and ideas and personalities than I do. CF and ASD don't dictate whether or not I'm introverted or extroverted, a tomboy or a girly-girl, my favorite color or my favorite taste, whether I prefer dogs over cats, or anything of the sort.
Yet, so many people, including those closest to me, love to point at my health conditions as reasons for why I am who I am, and why I like who and what I like. Sure, my conditions may play a role in my interests and personality, but they are not the fundamental cause of them. My favorite color isn't red because CF made me prefer red over green. No, I just like red because... well... I just like that color. Again, see where I'm trying to go with this?
God, I wish there were more words to describe what I'm rambling on about. I'm so close yet so far to the points I'm trying to get across. So. Damn. Close.
