6 Surprising Ways Life Looks Different With Terminal Disease

Cystic fibrosis is a genetic mutation that messes with the way salt and water move through cells, coating the affected subject's lungs and pancreas with a thick, sticky mucus. It causes all sorts of problems with eating and breathing, making it one of the most useless mutant powers anyone's had since Doorman gained the ability to walk into the next room. To further add to its appeal, CF is probably going to kill me. My name is Jay, and I have cystic fibrosis. While I'd gladly trade CF for the ability to fire optic blasts or control the weather (I won't even get greedy and ask for a superhuman healing factor), it's still taught me a few things.

#6. You Grow Up Immediately

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My digestive system is a magic place that turns food into liquid ass juice. While this might make for an amusing (if somewhat terrifying and messy) party trick, it presents a problem when it comes to things like gaining weight and being alive. To help my freeloading pancreas make some use of the nutrients that I'm putting into my body, I have to take a handful of enzyme pills to do the actual work of digesting my food.

Jay Gironimi
Fists full of pills are the one thing my childhood had in common with Hunter S. Thompson's adulthood.

For the first three years of my life, I had to have a parent or guardian open up each of the six capsules I needed and pour the contents onto a few spoonfuls of jelly. This got old, both because accidentally biting one of the time-release spheres would introduce my tongue to pure digestive enzyme excitement and because putting fried chicken in front of a hungry child and telling him he can't eat it yet is banned by the Geneva Conventions.

So at the tender age of 3, I learned how to open childproof pill bottles. Now I can do it one-handed, in about 3 percent of the time it takes a drunken person to comprehend that they have to squeeze and twist. I also had to count out six pills and swallow them whole, which scared my parents because these pills are precisely "way too friggin' big" for a little kid. I allayed their fears by showing them I could swallow Jolly Ranchers with one gulp.

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And I would've done the same thing with that jawbreaker, too, if they'd let me.

These pills are not perfect, leading to what my doctors refer to as "bulky, fatty stools." In layman's terms, that means massive fucking shits. I spent a good portion of my childhood thinking that my stomach must contain a portal to the Negative Zone, because there's no way that all that poop was stored in my body, let alone this dimension. On the plus side, it gave me the impetus to become a decent amateur plumber by the age of 7. Destroying a toilet three out of the five times I used it throughout the day made me really good at fixing my mistakes.

Cystic fibrosis also expanded my vocabulary. I was using the words "postural drainage" at a very young age. Postural drainage is the technical term for beating the mucus off of your lungs. When I was a toddler, this required my parents to hang me upside down and slap me on the back until mucus came out. When I was 3, we got a machine so that I could shake my own damn mucus. It looked just like a "personal massager," and I had to learn how to pulverize my own chest whenever the need arose. This trumped-up vibrator wasn't pleasant, but it was still better than having my mom beat up my lungs every day. Plus, it taught me independence, as well as to hate and fear our inevitable robot overlords.

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Hitachi's damnable wand was just a charismatic infiltrator.

#5. "Live Like You're Dying" Is Terrible Advice

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Here's what "Live like you're dying" means to me: get a loan and buy a Batmobile, no matter what the terms. You can't get minimum monthly payments from a dead man! Unfortunately, I'm not typing this from beyond the grave, so I've actually had to deal with all the traps Past Me left behind.

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That cheeky bastard.

The transition from sick kid to sick grown-up was rough for me. I spent the first 18 years of my life mooching off of my parents' insurance. Then when it looked like the free meds teat was about to run dry for me, I enrolled at a community college to keep the good times rolling. This meant I could stay on my parents' insurance until I was 21. It also meant stretching a two-year degree into a 2.5 year degree and paying for a semester of college that I didn't even attend, just because it was cheaper than even one month of one prescription.

When I turned 21, I was working full time at a hotel. Their insurance consisted of a coupon I was supposed to present at the pharmacy for a discount off a prescription (I wish that was a joke), which meant I was bringing my entitled self down to the state office.

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"One set of bootstraps, please."

I was making nine sweet ass dollars an hour, so Medicaid wrote me a prescription for fucking myself, which is not uncommon. I actually cut back my work hours to qualify for insurance. I worked a lot of odd jobs and would often quit when my income broke through the meager ceiling set for me. Not having a job meant instant insurance, but no money. So I'd find another job, accidentally make more than $600 a month, and start the process again.

I eventually found a job I didn't want to leave, even though it didn't have insurance and consistently put me over the $600-a-month limit that kept me rolling in drugs. I was making so much cash (anywhere from $80 to $215 a week) that the state said I needed to show $1,300 worth of medical expenses before I got any more health care. Ah, the inevitable cost of living like such a high roller, with my crazy Cristal-and-Cadillacs $800 a month.

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Pictured: Straight Ballin'.

That $1,300 might as well have been $13,000. I ran out of the medication I needed to thin my mucus and started coughing up blood, so I decided that credit cards would be the answer to this problem. At the time, my medication was $1,500 a month, which was more than enough to get me back in the insurance game for another six months. As it turns out, $1,500 is the price that insurance companies pay. If I roll up on the pharmacy with a mouthful of blood and a MasterCard (ladies, please, I'm taken), the price is $1,900.

Once credit card debt serves as a viable solution to one of your problems, it's easy to see it as a solution to every problem. When all you have is a credit card, all your problems look like card readers. It created a vicious cycle that took years to break. But who cares? Live like you're dying, right? Credit card debt was Future Me's problem, and that guy probably sucks anyway.

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"It's cool, some dick I've never even met has the bill."

#4. The Rules Don't Apply to You

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Government-mandated nutrition facts were a life saver, because they helped me determine if I was wasting my time with rookie food. Cystic fibrosis makes it incredibly hard to gain weight. My digestive system is mostly decorative, so my fat and calorie intake has to be higher than Jesse Pinkman in order for my body to make any use out of what I eat.

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"I need a hundred more of these. Blend them together in a goddamn bucket."

At 22, I looked like the skeleton of a fashion model, so I bought a bunch of weight gain powder and mixed it with half-and-half in an effort to become a real boy. All I did was sweat milk byproduct and break a toilet at work. I didn't gain one goddamn pound.

There is an entire industry dedicated to keeping people from eating the type of food I grew up on and, for the most part, still enjoy. I work as hard at keeping weight on as other people do at keeping it off. If I could breathe, this dichotomy probably would have turned me into a no-nonsense action hero who doesn't play by the crooked mayor's rules. Instead, it turned me into a man who can eat 40 McNuggets in one sitting and somehow wind up skinnier. This makes it weird to watch late-night television, because it's constantly telling me I'm a fat asshole, even though my wrists are roughly the same diameter as a large novelty pencil. Every ad is about weight loss. I'm pretty sure if I ever took Dexatrim, I'd implode.

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Hello, light lunch.

I've been banned from weight loss competitions at work because even though I'm currently at a healthy weight of 169 pounds, I spent the majority of my adult life between 130 and 135 pounds, and I could get back there in two days if I backed off on the pills and followed some sort of sane nutritional guidelines. But I don't play by your rules, USDA.

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