Back in March, I was asked to participate in a Cystic Fibrosis Foundation fundraiser. My initial response was essentially “are you sure?” but they replied with “yes”, so last week I gave the a short speech at the Connecticut’s Finest event. Here’s what I said:
I’m not supposed to be here, both in the way that I should be dead by now, but also in the way that my idea of a fancy meal is something from the limited time menu at Arby’s. Still, I’ve lived to an age where I shouldn’t eat at Arby’s every day, so here I am.
I turned 40 this year, which is mostly good news, depending on who you ask. By my current math 40 cf years translates to about 66 regular years. And even if the Social Security office does not recognize that as a valid reason to start my retirement early, it certainly feels like it’s been 66 years. Still, I was surprised at how much I wanted to be 40, even if that meant my early-20s financial plan of “put it all on a credit card, then die” has become a spectacular failure.
It took a lot of hard work and dedication to get me this far, but luckily most of that work was done by someone else. I’m not particularly skilled in genetics—to give you an idea of my skillset, when I was 9 years old I attempted to use a store bought jar of officially licensed Teenage Mutant Ninja Turtles Mutagen Ooze to mutate an old sock I found by a dumpster—so while I did participate in a couple of research studies and I could lie to you and overstate the role I had in the development of certain landmark drugs, we’re all friends here so I can tell you that I let them give me experimental pills for $100 and a free breakfast.
Because for most of my adult life, I was a man who needed a free breakfast. I did not grow up poor, though I did spend multiple years in an apartment where–if one were truly dedicated–you could touch three walls at the same time. But when I turned 18 and the medical bills started to have my name on them instead of my mom’s, I decided to see what being poor was all about.
Now, this is a night of celebration, so I will not bore you with the details of the bad years. If you’re truly curious, I wrote a book about 10 years ago which, fair warning, is mostly swears. In lieu of an extended diatribe, I will offer this one word summary of the bad years: sucked.
Though I’ve never been accused of being an optimist, thanks to some tremendous advancements in treatments and medications—I’m personally on Trikafta—the years are better now. That’s not something I expected when I was 25 and coughing up blood because I thought I could try toughing things out when I got kicked off state insurance for making a stunning one thousand dollars in one month. And it may not have been something my parents expected when they took a more useless than normal 9 month old to the pediatrician and that baby used one of his two skills to somehow penetrate the doctor’s Rolex with a hot orange baby dump that—luckily—the doctor immediately recognized as a cf poop. But sometimes things go the way you think they will and sometimes you get lucky.
But that is not to say that these better years are cheap or easy. My day consists of roughly 30 pills, 3-5 injections, and 4 or so inhaled medications, enough that the FedEx man thinks I’m running a satellite pharmacy. Yes, you may have heard that life is a priceless gift, but cystic fibrosis has taught me that mine costs about $330k a year. At this point I’d like to give a shout out to Microsoft Excel for being just hard enough to use that my ability to remember keyboard shortcuts somehow became an insurance bearing career, though not enough of a career that I don’t occasionally dream about unloading just 1 week of cystic fibrosis drugs at market value. Seriously, that would be illegal, so definitely don’t come see me if you have $6000 and a curious mind.
Look, earnestness isn’t really something I have in my bag of tricks, so I’ve struggled with how to end this. My wife thought it might be nice to mention some of my non-cf related accomplishments before I go, though since that’s not really how my brain works, the best I’ve got for you is that I once did 9 revolutions in an industrial clothes dryer.
So in the end, I’ve decided to leave you with this:
When I was young, a lot of the things I loved vastly misrepresented the upside of being a mutant. Rather than the accelerated healing factor of Wolverine or the superhuman size and strength of the Toxic Avenger, I got the wrists of a velociraptor and lungs that sound like a haunted house. But as I see children with cf now and how the ongoing mission of the Cystic Fibrosis Foundation has given so many of them “healthy body mass” and “high lung function”, I can honestly say I’m not bitter. Because cf has given me a gift those kids may never get. It hasn’t made me strong or brave, because if any other path were available to me, I probably would have taken it. But what it has given me is…
a convenient scapegoat for all my failures. And that ain’t nothing.
Thank you for your time!
(insert rapturous applause here)
It was my first time talking in front of an audience in at least 4 years, so my delivery was a little rusty, but the speech went over well enough for those that made it to the end. My favorite comment was from a gentleman who was working the door at the restaurant, a job which mostly consisted of “Thank you for coming, thank you, thank you for coming, etc.” until I walked out and he said “Nice story”. That was better than a five star review.
Things I Like
This week I spend a bunch of time listening to a song called “Crusaders” by the Swedish group Hollow. I stumbled upon this band back in the 90s when I was looking for more bands that sounded like Morgana Lefay (who I talked about last week). I used to spend a lot of time poking around Ultimate Metal Reviews at the time and was obsessed with the 30 second or so RealAudio clip they had posted of “Crusaders”. They gave the album a 9.2, making it their fourth best album of 1998, just ahead of Bruce Dickinson’s The Chemical Wedding—which is one of the greatest albums ever made—and just behind Judas Priest’s 98 Live Meltdown, which exists. The rest of Hollow’s Modern Cathedral album didn’t really stack up to “Crusaders” for me—I actually prefer the follow up album, “Architect of the Mind”, as did Ultimate Metal Reviews—but “Crusaders” still rules.
But really, this is just an excuse to post this Internet Archive link for Ultimate Metal Reviews, a site I probably spent an actual full year on in the days of 56kbps internet connections. Fun fact: at least one member of one band on the best of 1998 list has been charged with insurrection.
https://web.archive.org/web/19990203144828/http://www.metal-reviews.com/