Category Archives: Words

Want vs Need: Time Investment

My medium is watered down acrylic on printer paper.

I have this hanging above my computer desk.

I need to write a sequel to my first book, Can’t Eat, Can’t Breathe and Other Ways Cystic Fibrosis Has F#$%*d Me. At least, that’s what I keep telling myself.

As I get older, I’ve really started thinking of time as a finite resource. I always thought I did, but without any real responsibility (beyond breathing, that is), it’s easy to labor under the illusion that there’s still time to do everything. It’s the subtle difference between “I might as well do this, I’m going to die” and “I need to get this straightened out before I die.” The truth is, the world does not need a sequel to Can’t Eat, Can’t Breathe anymore than it needed Can’t Eat, Can’t Breathe in the first place, which is to say not at all. Still, it remains the piece of creative work I’ve gotten the most feedback on and it’s one of my few projects that ended up in profit so in my head a sequel makes sense as a time investment.

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Helpful Holiday Hints 2015

It’s been a while since I’ve written anything here. Not because I haven’t wanted to (I’ve got a lot of ideas kicking around) and not because I forgot my login credentials (even if I totally did for a while) but because I’ve been chasing a White Whale of a project since sometime last January. I’m not quite finished with it yet, so I don’t want to talk too much about it (there’s still a 50 percent chance that it will be complete shit), but since I’ve got that whale in my sights, I’ve managed to carve out a little time each day to write a Helpful Holiday Hint on my Facebook page and the Helpful Holiday Twitter page. Brad Sheridan of Why Do I Rock? has even drawn comics for a few of them. Here are a few of this year’s classics:

No snow for a Christmas morning snowball fight? Try using chilled baseballs.

If your siblings wanted to get presents too, they wouldn’t have had kids.

They can’t prove you bought it at the dollar store.

Throw everyone’s name into a Santa hat and have the oldest child pick one out. That person gets to run Grandma over with a reindeer.

Panhandling is acceptable as long as you’re ringing a bell.

You can save a lot of money by telling your child they’re on the naughty list.

To teach children how other cultures celebrate Christmas, have them build some sweet Air Jordans and mail them to the kids down the street.

Bring some holiday pizzazz to your baked goods by adding two tablespoons of glitter.

Wow, what a lineup! I’ve still got three more days of this left, so friend me on Facebook or follow @HelpfulHoliday on Twitter (or just follow me at @allhallowsevil and we can ignore the holidays together).

It's the sesame seeds that really make it.

Burger King’s Halloween Whopper: Crappin’ Magic

It's the sesame seeds that really make it.

Halfway through my failed attempt to eat the Burger King Halloween Whopper into a bat symbol.

When I was 5 or one of those other dumbass ages when you do dumbass things, I had a two day obsession with cranberry juice. Part of it was that I was at my dad’s house and cranberry juice was the only thing that didn’t taste like bullshit, but most of it was because on my second glass, my father’s roommate said “Wow, you’re going to pee red if you keep that up.”

I kept going for two goddamn days didn’t see so much as a darker yellow. Continue reading

I Approve of Orkambi, But Not of the Price

Orkambi—the new Cystic Fibrosis drug from Vertex Pharmaceuticals—just received FDA approval. I was hoping that it would, because it’s a fine drug. That’s my review of it: it’s fine. It does some things very well—my lung function is currently hovering around 77%, which matches my adulthood high from 2009—while other things—my digestion, diabetes and sinuses—haven’t responded as positively. If you’d like, I wrote a whole bunch of words about my experience here, here and here. Most of that still applies, though I’ve since switched digestive enzymes and added a long acting insulin to my routine, both of which have been positive changes. With my new enzymes, I’m able to get away with around 240,000 units of lipase per meal, which is down from the all-time high I hit during the study—300,000, a number that’s probably unsafe–but still above my pre-study number of 200,000 units. Continue reading

On All the Things I’ve Wished I Was

This is pretty much how I see myself in the mirror.

This is pretty much how I see myself in the mirror.

The first inkling of an idea is intoxicating, filled with the promise that this is going to be the idea that changes everything. At that moment, the goal is right in reach and every door is open; this could lead anywhere. But the cold light of day moves the goal line somewhere over the horizon and forces you to pick a door. That door leads to more doors and you don’t always get to go back the way you came. Doors turn into walls and possibilities die. That’s why so many projects remain unfinished—it’s much easier to deal with what they should be rather than what they could be. The ones that do get finished are often hated for what they’re not, until a little distance proves them to be “fine.” Continue reading

Life as a Plinko Chip

Plinko Video Game

Fun Fact: This is one of the worst video games I’ve ever played.

I live my life like a Plinko chip: I rarely end up where I meant to be and there’s usually not any money when I get there. However, if you can correctly guess the price of a Mr. Clean Magic Eraser, you can throw me from the top of the stairs. Continue reading

A Brief Announcement Concerning Web Hosting

Over the weekend, I’m going to be migrating this site from it’s current location to dedicated web hosting. Service interruption should be minimal, but depending on when you show up, things might look weird. You’ve been warned.

You’ll know the move is complete because this post will be replaced by one about Plinko,


You Can’t Win if You Don’t Play

The early version of the lottery machine was incredibly dangerous.

The early version of the lottery machine was incredibly dangerous.

I feel left out when people talk about what they’d do if they won the lottery, because I know I’m never going to win (it’s an unavoidable consequence of never playing). This is the part where I point out the odds of winning the lottery and how even if you do win it will ruin your life, but you know all that, so I’ll let you fill in the details. Instead, I’ve taken a moment to catalog exactly how it would ruin my life and, by extension, the lives of many around me. Continue reading

This works out much better than just wearing extra socks.

Die With Your Boots On

This works out much better than just wearing extra socks.

Take that, snow! I’ve got boots on this time!

When I feel like disappearing up my own ass, I think about the things I care about. I don’t mean family and friends–that’s boring. Saying you care about your family and the people around you is like saying your car is really good because it goes forward. It’s as close to saying nothing as you can get without using silence. Continue reading

Staying Alive is a Lot of Work: Holiday Reflections

I don't have a great picture to go here, so here's one of me eating waffle fries.

I don’t have a great picture to go here, so here’s one of me eating waffle fries.

I’m a giant fucking production. At minimum, it takes me 8 pills and one injection to get ready to eat, which means it costs about $70 for me to even think about having dinner. (luckily I have insurance right now, so I’m not paying that directly). If I ever had to pay $70 for a meal, I’d crap myself in protest. Even if I decided not to eat today, it still costs roughly $60 for me to wake up. Sure, I could wake up and not do my pulmozyme, but it’s not worth it. Continue reading