I usually don’t write about cystic fibrosis. Heck, most people don’t, because they don’t have it; however I do and I still don’t write/talk about it much. As a matter of fact, I try to forget that I have it at all, but the bottom line is that it’s hard to do that when I have to take pills just to eat a fatty snack and at every meal.
As a kid, I never had a chance to break the news when I wanted to because my parents pretty much took care of that before very long, if not before someone met me. Understandable from a safety point of view, sure, but not exactly fair to allow for a “normal” first impression. Teachers had to know, my friends’ parents had to know, etc. to make sure I had my medicine at meals and if I started coughing my head off no one called 911.
I read a great post by a friend in Arizona who is sorta taking the CF bull by the horns and tooting them at the same time. Ronnie Sharpe wrote this great bit in July: So When Do We Tell Our Friends About CF? and he got a decent response for “back in the day” on his site. I’m not sure where my comment is, but maybe I just responded to it on Facebook. He is very outgoing with his CF and is all about getting the word out about the disease to raise awareness. You’ll see more about that from my angle in a bit.
Here’s where I stand as a CFer with a business to run and classes to attend (until May) as to my status as a CFer: “you’re on a need to know basis.”
I’m sure Ronnie is probably thinking something along the lines of “why the heck would you keep it so quiet?” about right now as he reads this for the first time.
It is a rare time or a rare person whom I tell within the first 3 months of knowing them on a regular basis. Some people have known me for years and not known that I have CF. I can probably count on one hand the number of non-medical people I’ve told at our first time together, be it a party, work day, or small group/church activity. Why!!??
Because I want to be Jesse Petersen. I don’t want to be The Guy with CF Whose Name Is Jesse Petersen.
I want to be the WordPress expert, the lover of my wife, the writer of witty prose, and the successful business owner. I don’t want to be the guy who needs work to pay health insurance or die, the charity case that got someone to love him “despite” CF, the writer who is cranky because his health could turn, or the business that you need to stay away from because it’s possible that things drop off for a few days because of a simple cold or a weekend in the hospital.
Why is that so important to me? Normalcy. All I’ve ever wanted to be my whole life is “normal.” Growing up, I was always in the bottom 5th percentile on height and weight and frequently got picked close to last in sports because of my size. It shaped a lot of who I was.
I compensated by being mean and pushing people away. That didn’t work. I tried being funny, and that worked, except with my teachers. I started applying myself in school and getting nearly straight A’s to make the teachers and my parents happy. There! Everyone was happy. Except the non-normal kid. Yeah, the one with CF who was going to be lucky to live to graduate high school. I could read. I knew what the doctors said about the prognosis.
Then we moved to Florida.
