Hi, my name is Jay and I have Cystic Fibrosis.
I hate that sentence, so I’ve been forcing myself to use it. I’ve never hid the disease, but I haven’t talked about it a lot either.
I’m not so much reluctant to talk about CF as I am ignorant of how to talk about it. One wrong turn and you’ve ended up at a melodramatic pity party; I don’t care for parties, pity or otherwise. Go the other way and you’ve made yourself sound like an inspirational champion. I assure you that would be incorrect.
I recently turned 30, which has a lot to do with my newfound need to share. Being that the median life expectancy for individuals with CF is somewhere in the mid 30s, I assumed I’d be dead by the time I was 18. I was wrong. And on the occasion of my 18th birthday, with my hypothesis obliterated, the world became sunshine and rainbows and it was smooth sailing from then on.
That would make for a pretty boring story, wouldn’t it?
It’s about time I figure out how to talk about this stuff and if you’d like to read about it, you’ll find my thoughts here. Some of it will be disgusting, but hopefully it won’t be boring. If I get any questions along the way, I’ll do my best to answer them, though questions about that involve Iron Maiden, Swamp Thing or any of the Universal Monsters will receive priority. I mean, I’ll try to stay focused on CF, I just can’t make any promises.
Jay