Hell, We Can Prolapse Entire Damn Organs From Coughing…

I really want to grow old.

There is very little data on what those with Cystic Fibrosis will go through while growing old, because most of our predecessors are no longer alive.

In a weird way, it’s as if those of us who are kicking it right now ARE the generation that medicine is collecting new data on the backs of. We are lucky… but we are also Kirsten the American Girl Doll (a new frontier). We used to not look at CF as a spectrum disease, and many with rare gene types fell through the cracks. But there are mature people with CF (not many, but they exist) and I hope this generation will all become 50-year-olds (sort of being satirical, mostly not).

Still, there are so many stereotypes of what we think it means to have this illness or any like it. One is that it’s our whole life (which means the fact I’m writing about it so much right now puts the 22 in catch). Another is that it’s just a lung and sinus disease… while - for me and many more than you’d assume - it can also impact our bones and spine, hearing loss, liver, digestive, and mawkishly sentimental (the last is especially debilitating). Hell, we can prolapse entire damn organs from coughing… which I have and done.

I am the opposite of ageist… I am obsessed with mature people living their best lives. Vera Wang, for example, isn’t an “I just drink water and eat greens” truism. She eats McFlurrys, she drinks vodka. Pamela Anderson is everything I want to be: she lives on an isolated island, she doesn’t wear makeup if she doesn’t want to, and she drinks her human-form in coffee.

I’ve always thought that “age is a number” is a cliche cache, but one I not only agree with, but see in my Vera and Pam family. My brother is a mid-50s war hero who surfs everyday and looks unlike the number assigned. My eldest sister works-out like a boss; training to walk the Camino soon. My other sister looks like Angelina Jolie with the mind of the spinning wheel that brought down Maleficent (sharp, though that analogy is not). And on and on and on. My Momma, my Dad, my other brother… The word limit my body often places upon me makes this progenitor paragraph impossible. So…back to the death stuff:

Age IS a number for those with a progressive illness.

It’s an accomplishment I never celebrate (ever). I loathe birthdays (it’s just a day?) and hide from them, in a way. Guilt? Fear? Perhaps I want to be just like my brothers, my sisters, my parents, Vera-Pam… but how can I when my bones feel like dust into and onward?

Am I still breaking stereotypes… or am I just disappointing my own potential? Why is ableism built into my skin, like a windburn that’s vaguely your fault? It hurts to know you have the gumption to metaphorically surf past pain and do things textbooks say you can’t… but know that what your mind can accomplish will never fully be supported by your body.

Ever.

If you hired me to write a novel, I could do it immediately. Limitlessly. If you wanted me as a staff writer, as in my juvenescence? I can pump out content… even if that sounds vaguely filthy. But what HAS slowed me down (read: not stopped me. Please still hire) is not my Broca’s… but the ticking time bomb assigned inside.

I don’t want to wait around for textbooks to catch us. They can’t…

We are the ‘can’.

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