wouldn't it be a shame if we were all the same

Dear "normal" world at large,

I've been toying with the idea of letting this blog be public. I mean, yes, it is already a public blog, anyone can read it (as proven by the statcounter index that tells me I seem to have lots of readers in India - WTF?). But most people don't know i keep this blog unless a) they have CF or know someone with CF and b) are a good enough friend that they have heard me talk about the CF life enough to find this and read it themselves and c) my mom, who read the whole thing after locating it and then promised never to read it again. sorry ma.

I have been blogging online since before blogging was called blogging. But always in these wierd niche communities: body modification, livejournal (which I still have but that badboy is under lock and key) and CF. Never anything I really put out there. You had to know me, know my niche, and then stumble across the blog.

So if I linked this to FB and made it as public as public can be in my world (250 Fb friends, 3 real ones), I would have to make a big confession:

I have cystic fibrosis.

There, I said it. So that means the cold you thought I had for the past thiry years, or my bad asthma, or the fact that i simply smoked way too much weed, all those things that made me cough until my face turded red, made me stop what I was doing, made me pee my pants when I laughed because that laugh turned to a cough - all that had an underlying reason: I have this wracked up set of lungs. and i was an A-1 expert at hiding that from you.

Yes, I know, some of you already knew this. You went to elementary school with me and my mom told your mom, or our stupid 6th grade teacher told the whole class when I went to the doctor once. or maybe we swam together and you knew from that. Or maybe that dumb kid who spread around the fact that I had "cerebral palsy" got to you. Whatever the reason, some of you knew.

some of you did not. and so you probably wondered but never asked. or maybe now you think back and say A HA! It all makes sense now.

But I tell you, if you didn't know, it is because I didn't want you to.

I allowed myself to be defined by anything BUT CF. You may have known me by many other labels but not by ths one. I don't want it to define me now, but I have come to accept that it is who I am. I don't want to hide anymore because I am no longer worried about what the world thinks of me.

I actually have come to create an identity for myself within my disease. It is who I am. An important person taught me that, the idea of self acceptance, and I've muddled over his words for a long time.

I don't want you to understand or feel sorry for me, and for god's sake don't tell me about your sister's cousin's boyfriend's nephew who died from it. I already know the statistics. I know what I am facing. I know the reality of the disease: the good, the bad and the ugly. I know it in a way you never will.

Please, feel free to ask questions, to educate yourself. But don't feel sorry for me. and don't tell me what I should and should not do. Don't take a balloon away from me and assume i can't blow it up, or carry something for me or tell me I probably shouldn't run in the heat. Don't freak out if someone lights a cigarette in my presence. I can take care of myself, I know my own limitations. I'm not invalid and while I know you care and mean well, it is demeaning to me for you to attempt to assume you know how to help me. If I need it, I will ask. I've lived the same life you have, just as fun, just as wild, and just as independent. and I keep living that life.

Once you get to know the CF crowd you can begin to understand that I am just a small sampling of the amazing people who live with this disease everyday. And some of us tell you about it and some of us don't. We choose not to because of mostly social reasons: stigmas, association as "other" or outcast, because being different is only accpetable if includes green hair and tattoos, not if it includes a shortened life span. Because your well meaning gestures are often embarrassing and bring attnetion to us when we least want it.

The best thing I ever did for myself was become ingrained in the Cf culture. I would have been so much happier to have shared my disease with you when I was younger if I had found connectiveness like i have it now. I would have cared less about what you thought and more about what was good for me.

It has taken me thirty three years to begin to get to the point of self acceptance, and it might take me another thirty to actually link this blog to something public.


In the meantime, I keep living and learning. and living. and living. you got that?