6 Surprising Ways Life Looks Different With Terminal Disease

#3. It Obliterates the Line of Appropriateness

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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.

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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.

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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).

#2. A Handicap Can Be an Advantage

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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.

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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?

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Plus, "professional pill popper" is a great thing to have on your resume in most of the entertainment industry.

#1. Even Terrible Things Are Sometimes Funny

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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.

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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.

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"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.

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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.

Robert Evans would also like you to buy Jay's book. If you have a story you'd like to tell him, he can be reached here.

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