Jay Gironimi - Cant Eat, Cant Breathe and Other Ways Cystic Fibrosis Has F#$%*d Me

Cant Eat, Cant Breathe

and Other Ways Cystic Fibrosis Has F#$%*d Me

Jay Gironimi

Copyright 2013 Jay Gironimi

Smashwords Edition

To Bekka. I know you hear this stuff all thetime, but I wrote it down for you anyway.

Table of Contents

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Lets talk for a moment about The LittleEngine that Could. A small locomotive engine decides to take ona job that, either because they are ill-equipped or not being paidenough, a number of larger engines have refused. The little enginetakes on this job with a positive attitude, mutteringI-think-I-can, I-think-I can all throughout and, lo and behold,he makes it! With nothing but a positive attitude, the titularengine, though horribly undersized for the task, was able to haulkilos upon kilos of high grade heroin into the valley (its been awhile since I read it). This book is obviously fiction and, if itwere just being introduced today, would be the source of countlesslawsuits from people who dropped a nut/ovary trying to lift thingsthey had no business lifting. Thats not to say that you canttrain yourself to lift things you have no business lifting, buttalking too much about that now would give away the plot of myupcoming childrens book The Little Engine that Trained, SaidHis Prayer, Ate His Vitamins and Eventually, After a Period of ManyYears and Many Failures, Could.

Just thinking about something is not enoughto make it happen. If life worked like that, Im sure more of uswould be enjoying the gift of flight right now. The good news is,the opposite is true as well: thinking a negative thought will notcause all of your pets to spontaneously combust. However, givenenough time, something awful will happen to you. It doesnt evenrequire much activity on your part: merely by existing, you aretaking the chance that something awful is going to happen to you. Iimagine, if you wait long enough, something positive could happentoo, but it is a much rarer occurrence. Positive outcomes canrequire you to weather a number of terrible things and still beready to work just a little more to get to where you want to be.Its not as easy as just thinking. If youve given yourself amission briefing that goes Okay, life is full of sunshine andrainbows! youll probably end up in disarray when it turns outthat the road to that rainbow is covered in unicorn shit.

It absolutely enrages me when people say thatall you need to do is have a positive attitude, so I have dedicatedmy life to proving that it is certainly possible to thrive withoutever having one positive thought. Sometimes one or two accidentallyget through, but the type of positive thinking that focuses ongood vibes or energy is extremely distasteful to me, becauseits passive and reductive. Passive in that it only requires you tohope for the best, as opposed to doing everything you can to makethe best happen and reductive because its a kind of willfulignorance (which may very well be the most pertinent problem of ourtime). You are ignoring all the countless twists and turns thatlife can take, effectively preparing yourself for only one outcome.Thats awesome if everything goes according to plan, but if lifehas proven anything to me so far, its this: it wont. And when theoperation goes to hell, positive thinking isnt going to drag itback to safety. You need to actually do something. Unfortunately,you lost all that planning time daydreaming about your solid goldyacht.

On the flip side, I dont want this to turninto a pull yourself up by your own bootstraps rant. If youvespent any amount of time in a classroom or office, Im sure someonehas told you that life is 10 percent what happens to you and 90percent how you react to it (the original quote Life is 10 percentwhat happens to me and 90 percent how I react to it is from awriter and clergyman named Charles R. Swindoll). That wouldprobably be a useful quote if it wasnt constantly used as a politeway to get you to shut the fuck up. When someone drops thatknowledge on you, what they are probably trying to say is Toughshakes. Get over it!

Teaching you to smile and eat shit for 90percent of your life is a great way to make it easier for people tofeed you shit for the other 10 percent. Do not fall for this trick.React is a broad word that can encompass everything from smilingand turning the other cheek to straight up slapping a motherfucker.Life is a delicate balance. I do not want to advocate violencehere, but I want these two things to be very clear:

1.) Sometimes life will hand you lemons.

2.) It is perfectly acceptable to wipe yourass with them.

Just be careful, because it might burn.

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It has become less likely that my death willbe a tragedy.

There was a time when the tragic nature of mydeath seemed guaranteed. I would die in my teens, robbed of afuture by a debilitating twist of genetics; my potential squanderedin a puddle of mucus.

Im 30 now, so Ive had plenty of time tosquander that potential myself. Though the mucus should still killme, it wont be quite as sad as it would have been if it took meout a few years earlier.

I was born with the genetic mutation CysticFibrosis or CF. Instead of gifting me with a superhuman healingfactor or the ability to fire optic blasts, it makes it harder tobreathe air and digest food. I cant eat and I cant breathe. It'sjust as useful as it sounds.

I havent talked about it a lot. Though Ishow some outward signs of Cystic Fibrosis, I could just as easilybe mistaken for a chain smoking derelict. I never denied that I hadCF but I didn't advertise it either. For years, only my very closefamily and friends had any deeper knowledge of what was going onwith me. Even still, I never told the whole story. It didn't seemto matter.

While it pains me to admit it, CF is a hugepart of my life. To effectively shut that part of my life down tovisitors and passer-by was to, intentionally or not, isolate myselffrom the rest of the world. In theory, this seemed like a greatidea. In practice, the results have varied.

It's not an easy thing to talk about. Notthat I get choked up when I mention it, but it's hard to explainhow it affects me because it is the only experience I've everknown. Anytime I compare it to something else, it's completeconjecture on my part. It would be different if I ever knew a lifewithout CF. From where I'm standing, you're all fucking weird.Maybe you should write a book about what it's like to breathe.

I kid. There are already plenty of booksabout normal respiration.

Though this book certainly deals with medicalissues, I am not a doctor. However, I am well versed in the act ofhaving CF. As such, this is not a book about Cystic Fibrosisitself, but a book about my experience with Cystic Fibrosis. It'salso not intended to be representative of everyones experiencewith the disease; many Cystic Fibrosis patients face the diseaseand its obstacles with poise and grace. I tend to do it with agratuitous amount of swearing.

Theres some adult language in this book.Theres also some juvenile language. We're going to talk a lotabout poop and mucus, because I deal with a lot of poop and mucus.Though I've tried to arrange the following stories into some kindof natural order, they're also modular, so if you are of weakerstomach, you're probably safe to skip some of the more detaileddescriptions. Just know that I am very disappointed in you.

For many of you, stories of poop and mucusare the reason you're here. Or, at the very least, you'reinterested in how CF affects people. To that end, I've tried tokeep this book from being a list of grade schools I've attended. Itis my belief that you should not have to skip through 100 pages ofset up to get to the dirt.