often awesome

For the longest time, I figured I’d just lay down and die when the inevitable zombie apocalypse comes.

I am feeble, apathetic, and lazy—in other words, excellent zombie material.

Once, when I tried to explain this to a friend of mine, he revealed that he keeps a special survival pack in the trunk of his car, a portable bunker in case of emergency. It is stuffed with all the essentials. I would list those items here (just to be useful), except I have no idea what they are. My survival pack would have some magazines, a bottle of Wild Turkey, and some Diet Coke. Maybe cookies.

Having watched a number of films about the end of the world, I have always been perplexed by humankind’s desire to carry on through the end times. It puzzles me that people are willing to push their shopping carts across the husk of our planet, you know? Me, I’m not convinced that a life sustained by tinned peaches and powdered milk is a life worth living.

An acquaintance of mine, Tim LaFollette, is going through his own personal apocalypse. He has a disease called Amyotrophic lateral sclerosis (ALS), and boy, is it awful. To help fight it, he has gathered an army some 1,400 soldiers strong. They call themselves the Often Awesome Army (after Tim), though as far as I can tell, he’s pretty much always awesome. I guess he’d be embarrassed if they called themselves the Always Awesome Army. Tim seems very modest for a figurehead.

The thing is, I don’t really know Tim, even though we grew up in the same Tennessee cow town and went to the same small liberal arts college in Greensboro, North Carolina. I’m friends with some of his friends, I’ve seen his band, and that’s about it. Like thousands of other people who know him a little, I have been watching Tim and his wife, Kaylan, battle his illness on the award-winning web series, Often Awesome. I strongly encourage you to check it out.

His story is pretty simple: in 2009, at age 29, Tim was diagnosed with ALS (Lou Gehrig’s disease). He has some sort of super strain that has progressed rapidly, so he lost his ability to move—to breathe on his own, even—in just over a year.

Think about that for a minute. Imagine, a year from now, losing your ability to walk, or eat pizza, or even scratch your nose.

Many of Tim’s friends, like him, are young artists. (You might have even heard his music; he co-wrote and sang the theme song for the Savage Love podcast.) Some of them have limited resources, so they’ve had to find ways to support him other than straight cash dollars. All of them love him with a fierceness that makes me kind of jealous. The Army was born out of their urgent desire to help him out with the logistical nightmare that is his terminal illness.

What the Often Awesome Army has accomplished is flat-out amazing. Members have used their DIY prowess to organize fundraisers that range from quilting bees to punk rock shows, from silent art auctions to tattoo parlor benefits. They’ve produced the aforementioned award-winning web series to raise awareness for his disease. They’ve leveraged Facebook, Paypal, and other web-based technology to pull off real feats of project management, including the establishment of an around-the-clock care team and the purchase of a wheelchair-accessible van.

They have grown from a tight-knit group of friends to well over 1,000 people, and now Tim’s whole community (including total strangers who have been moved by his story) has rallied around his bedside in a culture where, all too often, people who get sick shut themselves in, alone, behind closed doors.

Not that I blame them, the shut-ins. Being sick sucks. I pretty much take to my bed like a lady from a bygone era if I so much as think I have a cold. To me, being sick on camera seems very brave.

I remember the episode where Tim and Kaylan honeymooned in Scotland. It was the first time I really started to notice the effects of Tim’s illness. I guess up until then he was usually seated on camera, so I hadn’t realized the disease was progressing so rapidly.

There’s this harrowing bit where Tim is alone talking into the camera about losing movement in his arms. He’s really raw and honest about being afraid and it is just Blair Witch-grade scary shit. In the same episode, as Tim and Kaylan discuss a two-gallon bedpan-type thing of urine (damn, Tim!) and doing it in his wheelchair, I was just blown away by their honesty and relentless awesomeness in the face of something so difficult and frightening and unfair.

I am writing today, on one level, as my own small effort to raise public awareness of ALS, a horrible disease that ravages its victims in obscurity. But the hard truth is that there are a lot of terrible things in the world to be aware of, and sometimes it’s difficult to keep track of them all.

So the real reason I want to tell you about Often Awesome is because I think it’s about something much larger than Tim or even Lou Gehrig’s disease. You see, sometimes I worry there’s something deficient and uncharitable about my age group’s relationship with sincerity—that irony and cynicism eat at our hard little hearts like a cancer. Watching these lovely, selfless testimonials from the members of Often Awesome helps me escape, if only for a few minutes at a time, my own Tyra Banks-level solipsism. It helps me believe in our world as a place where we’re all connected by something that isn’t inherently awful like fear or our collective dislike of Paris Hilton. It makes me believe in something bigger—sort of like religion, but with people instead of god.

I’m going to be honest: at first, watching those videos felt like watching someone die. But over time, I came to realize that the whole point is that Tim is emphatically not dying; he is living. And it’s not just the pushing-a-shopping-cart-through-a-valley-of-ash kind of living. What he’s doing transcends survival.

It’s the kind of thing that makes you want to fight those zombies with everything you’ve got.

It’s one thing to live your life, and it’s another thing to make it matter. For many (if not most) of us, the former is all we can manage. I would like to thank Tim, a virtual stranger, for mattering so fucking hard with such a great sense of humor. It has made me a better person.

And while he has lost his ability to speak, he still has a voice. (A very cool voice that makes him sound like a robot, actually.) He also has the Often Awesome Army, which you can learn more about here and here. And he has me, here, whispering in your ear. Please pass it on.