Not nearly as cool looking as the KISS Alive II gatefold.
In my life, I’ve seen lots of advancements in CF treatment. These have all been medicines/techniques/what-have-yous don’t treat the underlying cause of the disease, but mitigate the symptoms. None of it is easy or fun, but it does provide a concrete answer to the age old question of what I would do for a Klondike bar: I would take 8 pills and 8 units of insulin.
Here’s a birthday card I drew for my fiancee. I drew it at work, so I technically got paid for it.
I offer a service where I tell people if their birthday is pointless. Here’s how it works: someone contacts me, tells me what age they are going to be and I tell them if their birthday is pointless. There are some mitigating factors—too miniscule and boring to go into here—but my accuracy is remarkably high. I’m not asking to be celebrated for this; I consider it part of my duty as a citizen of the world. We all need to give back what we can. Continue reading
You can use this chart if you’d like to play along at home.
I recently participated in a study to gauge to efficacy of Kalydeco—a new drug that treats the underlying cause of CF instead of just the symptoms—in patients with two copies of the Delta F508 mutation. I kept a diary for the first month of that study and I wrote a piece about my experience, but I figured that piece would have more context when the results of the study actually come out. In the meantime, here’s a journal entry from the day I went to have my qualifying eye test. Continue reading
Though you can’t tell here, this 1989 Mercury Topaz had 13 exhaust pipes (1 of them real!) and spinning hub caps. I miss it dearly.
I just took out a multi-thousand dollar bet that my lungs won’t give out in the next 5 years. I bought a car. Continue reading
This has nothing to do with this post, I just like pictures of my insides.
Instead of writing about how shitty my lungs are, I thought I’d write about writing about how shitty my lungs are. Think of it like one of those crappy EPK-style features they used to put on DVDs. If you’ve ever wanted to know how many words were in the first draft of my book, today’s your lucky day. Continue reading
This USB cable is the best black arm tassel I could find on short notice.
I, like most kids who attended grade school in the early 90s, have already had to deal with the death of the Ultimate Warrior on more than one occasion. Unfortunately, this time no amount of knowledge cribbed from the newsprint wrestling magazines at the local drug store will silence that smartass from down the street who thinks he knows everything. Because finally his time has come. That little smartass is right—the Ultimate Warrior died. Continue reading
This is the Holy Grail of moves for frail children.
I remember my first Gorilla Press Slam.
I also applied at the C + C Music Factory, but didn’t pass the sweat test.
In my early 20s, I had a lot of insurance problems. That means I got a lot of advice that boiled down to “You should get a job with insurance.” After hearing enough of this, I started to wonder if everyone was right and I was just lazy, so I picked up a 9 to 5 at the local factory. I’m pretty sure I signed something prohibiting me from saying what factory it was, but it was a popular chip manufacturer. Continue reading
Not the actual window.
There’s about a two hour window before I start thinking everything is bullshit. Continue reading
I saw my first concert in 1990, when my dad took me to see the Teenage Mutant Ninja Turtles play a white-hot set at the local Sub Base. That show was so good, that I didn’t have an inkling to see another concert until 6 years later, when I begged my mom to take me to see KISS at the Hartford Civic Center. Continue reading