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.
You Grow Up Immediately
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.
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.
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.
Hitachi's damnable wand was just a charismatic infiltrator.
"Live Like You're Dying" Is Terrible Advice
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.
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.
"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.
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.
"It's cool, some dick I've never even met has the bill."
The Rules Don't Apply to You
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.
"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.
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.
It Obliterates the Line of Appropriateness
I don't usually talk about cystic fibrosis. There's a part of me that understands that most people don't want to hear about the massive dump I just took, but I've spent so much of my life cataloging and describing my plops for medical purposes that the voice in my head responsible for saying "That's disgusting!" gets quieter and quieter each day. Not everyone has a lung disease, but I read a book that says Everyone Poops, so I figure we can all talk about it.
Even Scandinavia's Viking supermen poop, although only in bathrooms hewn from the Oak of the World Tree.
The weird thing is, my disease eliminates the line of appropriateness for other people as well, but like ... they don't want to talk about my shits or anything. Instead, I'd say 90 percent of the people I talk to try to cure me. A lady at work told me that dark chocolate would fix all my problems. I've been told I can replace my digestive pills with papaya, even though I'd probably just shit it out within the hour.
"You boil asparagus and drink the water!" "Here's this Ayurvedic tea!" "Have you tried just living your life upside down, so, like, the poop has to stay in there longer and be digested?" I've heard it all before. I'm skeptical of the whole natural industry because of this. I hear these debates about zinc and Reiki and it just sounds like grown-ups playing pretend to me. I've been medicating myself for years, and I know what works. I don't have to believe in my enzyme pills like the audience at a Peter Pan showing. They don't give a damn how much faith you have in them; they work regardless.
Drugs: They don't need your help.
People usually mean well, though. CF, or any serious illness, is scary stuff, and it makes them feel better to think that there might be some way to control it, whereas I long ago made peace with the fact that the mucus, much like the rhythm, is going to get me. Other people just don't like to think about it: Even though the average life expectancy for people with CF is steadily improving, it still makes them uncomfortable to think that I might be just a few years away from drowning in mucus (my own, thankfully).
A Handicap Can Be an Advantage
Everyone has at least thought about faking an illness to get out of a social function (probably a family dinner). But when you're always sick, you don't need to fake it. Does Thanksgiving seem like a chore? Mucus to the rescue! Always late? I have treatments to do! That sounds like a pretty weak benefit, but in all fairness -- it totally is.
On the upside, it'll lend me an edge in any fight against Family Togetherness Man.
Much of the time, these excuses are not just excuses. My lungs can tell me to go fuck myself at a moment's notice, ruining my plans and making me feel like shit for not getting anything done. But every dark cloud has a silver lining. I may have to put up with some impressive stomach pains and cramps, but I can also rip a seven-second fart that can clear out the entire men's section at the local Target. If you've been to the men's section at Target, you know that's saying something.
CF has also introduced me to the lucrative world of medical studies. My entire life, I've been paying for the privilege of taking pills. Turns out I was doing it wrong. There are studies that will pay around $20 an hour for me to lie in a hospital bed all day and have my meals brought to me. All I have to do is show up, take some experimental pills for a few months, and report any new feet that happen to sprout. Granted, it's 57 hours of work (in this case, sitting on my ass) spread out over six months, so it's not going to support me, but I'm already taking 30 or 40 pills every day, so why not pop pills on a professional level?
Plus, "professional pill popper" is a great thing to have on your resume in most of the entertainment industry.
Even Terrible Things Are Sometimes Funny
The average life expectancy for an adult with CF is around 37 years old. Many people don't even make it into adulthood. I didn't transition from the children's hospital to the adult hospital until I was in my 20s, as it was kind of a new thing to have enough adults with CF around to necessitate a whole clinic. Cystic fibrosis is certainly not a jolly adventure filled with sunshine and lollipops. So how can I say that a deadly disease is funny? Because on more than one occasion, I've coughed so hard, I shit myself.
No amount of robotripping will help matters.
Not a full load, mind you, but you know those farts that you don't want to let out because you can't verify their structure? Those come more frequently when your digestive system doesn't work well. And if you've got one round in the chamber when a coughing fit strikes ... uh-oh! Time to cut yourself out of a pair of boxers in a public restroom.
That the inherent humor is tasteless or crass does nothing to dull the fact that it works for me. The fact that it's tasteless might even help it work better for me. The key here is that it works. For me. It may not work for everyone. It doesn't have to. Illness does not turn people into Invasion of the Body Snatchers-style pod creatures. They are still people, but now they have some extra bullshit to deal with. Illness may change you, but even the same illness will not change two different people in the same way. They don't become a hive mind.
"We are sick. You will be coughed upon. Face masks are futile."
Being sick does not throw things into some magical perspective. Everything that sucks about life still sucks, it just does so while you're also sick. Conversely, the good things are still good, and might even make me forget that I feel like shit for a little while. Of course, the things that make me feel better -- laughing in the face of death, Denny's nachos, Target farts -- may not be the same as what makes someone else feel better. And that's fine. It's not like there's one right way to deal with illness.
Batkid kind of nailed it, though.
Jay Gironimi is the author of Can't Eat, Can't Breathe and Other Ways Cystic Fibrosis Has F#$%*d Me. You can get it on Kindle RIGHT NOW for $3. He also has a blog and a Twitter account.
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