Category Archives: Words

Can’t Eat, Can’t Breathe… Now Available in Audiobook Format

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Have you ever wanted to take a three and a half hour car ride where I do nothing but complain about my lungs? Well, you’re in luck! Can’t Eat, Can’t Breathe and Other Ways Cystic Fibrosis has F#$%*d Me is now available in audiobook format on audible.com. I worked hard to make sure I read the absolute shit out of this book, so check it out if you get a chance. You can get it free with a 30 day free trial of Audible!

This could've just as easily been the cover of a collection of heartfelt songs about my mucus. Count yourself lucky that it's not.

This could’ve just as easily been the cover of a collection of heartfelt songs about my mucus. Count yourself lucky that it’s not.

The More Things Change… Part II

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Here’s another batch of 3rd grade journal entries. If you missed the first round, you can catch up on them here. Again, these are reproduced as close to their original form—errors and all—as can be. Continue reading →

The More Things Change…

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At the end of my book, I transcribed the food diary I wrote when I was first diagnosed with diabetes. I find things like that fascinating, because you can’t run from a journal. It’s “of the moment”, with very little distance or reflection to get in the way. I may try to tell you that I was great at changing my diet, but the food diary tells a different story.

When my Mom told me she had dug up a couple of school journals from 3rd grade, I was excited to look back and see what’s changed. The answer, unfortunately, was not much. Here are some of my favorite entries, reproduced exactly as they appear in the journal. I’ve also included the teacher’s responses (also reproduced as written) and—where appropriate—commentary from 30 year old me. Continue reading →

My Book is Out Now!

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I swear that was broken when I got there.

I swear that was broken when I got there.

My book is now available on Amazon in both print and Kindle formats, with an audiobook version hitting sometime later this month. Like this blog, it’s called Can’t Eat, Can’t Breathe and Other Ways Cystic Fibrosis Has F#$%*d Me. It’s about how Cystic Fibrosis has fucked me. Continue reading →

Step Right Up and See the Amazing Mucus Filled Boy!

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Fair warning: there is a picture at the end of this post that is pretty disgusting. I have placed some distance between the text and the picture so you may avoid it at your own discretion.

Though the freak show is only a shadow of its former glory, we still have an entire industry dedicated to exploiting oddities for entertainment. Okay, “exploiting” is probably a strong word, because I believe these people know what they’ve signed up for and have, in some way or another, been compensated for their trouble. See: your hoarders, the strange addicts and the obsessed. Continue reading →

How Hometown Buffet Compares to Having a Disease

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This is exactly how I remember eating at Hometown Buffet.

This is exactly how I remember eating at Hometown Buffet.

When the New York Times asked mountaineer Gregory Mallory why he wanted to climb Mount Everest, he famously replied “Because it’s there.” If they were to ask me why I used to eat at Hometown Buffet so often, my reply would be similar.

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Ghost, Pills and Spiky Purses

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Here's an awesome shot of Papa Emeritus II from the "Monstrance Clock" video.

Here’s an awesome shot of Papa Emeritus II from the “Monstrance Clock” video.

I consider myself to be a man of varied musical tastes, though I certainly have my preferred genres. One of my favorite genres is “people with electric guitars singing about the devil.” Some bands—Iron Maiden, the Rolling Stones, even Ugly Kid Joe—dabble in the genre, but the band Ghost is all in and I love them for it. Catchy rock songs played by an anonymous clergy and sung by an undead pope will get me every time. Continue reading →

The Existential Lie of Death Valley Rally

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Death Valley Rally Cover Art

At some point in your life, you will be presented with information that does not coincide with your already cemented beliefs and you will completely ignore it. It will have nothing to do with the veracity of this information. It just won’t seem right to you, so you will ignore it. There will also be a point that you will be presented with something that so completely lines up with what you already believe that you will carve it onto two stones and carry it up the mountain. Everyone does it. They even have a name for it: confirmation bias. Continue reading →

I Bid You Welcome

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newprofile

Hi, my name is Jay and I have Cystic Fibrosis.

I hate that sentence, so I’ve been forcing myself to use it. I’ve never hid the disease, but I haven’t talked about it a lot either.

I’m not so much reluctant to talk about CF as I am ignorant of how to talk about it. One wrong turn and you’ve ended up at a melodramatic pity party; I don’t care for parties, pity or otherwise. Go the other way and you’ve made yourself sound like an inspirational champion. I assure you that would be incorrect.

I recently turned 30, which has a lot to do with my newfound need to share. Being that the median life expectancy for individuals with CF is somewhere in the mid 30s, I assumed I’d be dead by the time I was 18. I was wrong. And on the occasion of my 18th birthday, with my hypothesis obliterated, the world became sunshine and rainbows and it was smooth sailing from then on.

That would make for a pretty boring story, wouldn’t it?

It’s about time I figure out how to talk about this stuff and if you’d like to read about it, you’ll find my thoughts here. Some of it will be disgusting, but hopefully it won’t be boring. If I get any questions along the way, I’ll do my best to answer them, though questions about that involve Iron Maiden, Swamp Thing or any of the Universal Monsters will receive priority. I mean, I’ll try to stay focused on CF, I just can’t make any promises.

Jay