First, the name.
The twitter version (literally)?
Born asking “Why?” & haven’t stopped since. Also born with Cystic Fibrosis. It’s chronic. (Pun).
Writer, Foodie, DIYer, Patient Advocate, Policy Wonk Lite & More.
The Long Story? Grab a snack…
at the Cystic Fibrosis Foundation Great Strides LKN 2012 event.
With a spray tan.
While it’s hardly a primary focus here, like I said, I was born with Cystic Fibrosis, and there’s simply no way to completely compartmentalize it. (Trust me, I’ve spent the better part of my adolescence and adulthood trying). I’m not one of those sparkly, *my disease made me who I am* people; I think it’s giving a screwy gene a little too much credit – and my parents, teachers, and ahem, mah own self not nearly enough - to assume I’d be a complete asshole if I had grown up like, *being able to breathe* and *assuming I’d get old* and stuff. After all, my favorite word became “why” long before I started getting lapped on the mile run.
That said, there is no denying that CF had quite the role in developing many of my most definitive traits: my fighter’s spirit, my insatiable curiosity, my healthy suspicion of authority for authority’s sake, and my quick wit – for better or worse, all undeterred by all but the strongest of sedation. I am convinced that my ability to articulate my thoughts, my obsession with meaningful communication, and my relative fearlessness in addressing my superiors as actual human beings were kindled early in my education, but ignited by the frequent practice necessitated by my CF experience.
However, I freely and painfully admit that the sharp edges of CF that helped hone the aforementioned skills and abilities have undeniably severed many of the opportunities that they have afforded me. With no more prep than a practice test the night before to learn the format, I earned LSAT scores that would have comfortably afforded me admission and at least partial scholarship to a decent law school or five – and was promptly hospitalized shortly thereafter for nearly three straight months with a pretty gnarly infection and related complications, unable to finish (let alone submit) my applications. My undergraduate thesis took on a life of its own and landed me as first author on a panel at one of the largest conferences in my field; then six weeks later, in grad school with funding and another conference co-authorship…only to have CF pull rank and move me back in my parents’ basement six months later.
Don’t get me wrong; I own where I suck (time management/punctuality, Gaia help me and I’m sorry in advance; buying too much produce that I will never be able to eat before it expires as I apparently have no other way of reminding myself of preparation ideas that strike me while shopping unless I actually buy all the ingredients right then; painting my nails – it takes me an hour and then it still sucks so I get pissed and acetone it all away, now doubly pissed that I screwed up AND wasted an hour; remembering to get Cooper groomed until he starts chewing on the hair between his paddies and all but giving me the middle claw; answering the phone, at all; taking sarcasm too far and being misinterpreted as actually THAT mean or stupid; math generally – a fact that has nothing to do with my coincidental genitalia; vulnerability in person; staying hydrated). But I’m also grateful, and proud, to have survived what I have, and to have become who I’ve become; and I so I also own where I’ve succeeded – and try to keep my eye on where I want to grow next.
That’s why I’m now endeavoring to make my mark through a corner of the internet, instead of ball-busting in a court room, or holding feet to the fire as a talking head somewhere, or running a restaurant (group). One of these things is not like the other, because that thing can be done anywhere – from a desk, like a normal person; or on vacation, because #SorryI’mNotSorry, when offered the chance to hop a plane and tag along, I’m no longer asking twice because randomly going on vacation “isn’t what responsible grownups do”; or from a hospital bed, the other side of that “responsible grownup” traveler’s coin that I’d venture to guess I see comparably more often than many chained-to-desks-but-healthy folks.
Aaannd Pause. I so, SO know that I’m not a special snowflake, and I’m all too aware that at least 99.9998% of the world, and at least 95% of America, has it much worse than me, all-in. But rather than rocking in a corner lamenting the chasm between what I am and what I could be, if only a certain protein would fold properly; or damn near killing myself trying to be the grown-up, beating-all-the-odds! sequel to my poster child past; or choosing to be miserable and overwhelmed by indebtedness, and waste the time and opportunities I am availed out of a sense of solidarity with others who aren’t…I figured I’d split the difference.
So ChroniCuriosity is where I’ll be using my rickety, glittery little soapbox to spread a little more awareness about what life is like as a chronically ill twenty-something (hint: the “being sick” part is the easiest); honoring and honing and sharing my meager talents when and how I’m able: whether through a bleeding-fingers rant about associating introversion with violence in the aftermath of a shooting, or showing you how to make and package edible gifts that people will actually be excited to receive; or paying tribute to my fellow patients who are unable to travel and go and do the crazy crap I’m somehow lucky enough to stumble upon – whether due to finances, ill health, or that they simply aren’t around any longer to do so – by actually going and doing all the things, reporting back along the way.
So yeah. Congrats and gold star for making it this far. One last favor?
If I made you think, or laugh, or both, awesome – let me know!
If I piss you off, or you think I’m completely full of shit? Definitely – seriously – comment and say so!
If you read through a recipe or tutorial and think I’m making things way harder on myself (and by extension, my readers), tell me!
If I helped you feed or dress yourself when you were less than inspired to do so, I don’t mind hearing that either.
If you want to “comment”, or ask me something, or tell me off, or some combination of all three, but are a little shy, by all means feel free to shoot me an email at chronicuriosity [AT] gmail [DOT] com.
Thanks, Welcome, and YAY, because why not “YAY”?
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