24 August 2011

Tim LaFollette, Often Awesome

Today I logged on to Facebook and learned about the death of my friend Tim LaFollette.

I knew it was coming. I saw the signs on his Wall, where well-wishers had been waving goodbye as Tim spent the last few days shuffling off this mortal coil. No thought or feeling you’ve ever had about science-fiction or postmodernism—and I’ve had a few—can prepare you for what it’s like to scroll through hundreds of messages like that. It was scary and sweet and surreal and sad and comforting and chilling. Probably the Germans have a word for it.

I never knew Tim very well, but we grew up in the same Tennessee cow town and then happened to go to the same liberal arts college in Greensboro, North Carolina. We had some of the same friends and went to some of the same parties and liked some of the same bands. We talked a few times. That is all.

Yet, like a lot of people who knew him a little, I’ve found myself thinking a lot about Tim over the last few years as he’s battled something called Amyotrophic lateral sclerosis (ALS), which most of us know as Lou Gehrig’s disease.

Tim was diagnosed with ALS in April 2009, at age 29. His foot had been dragging since a minor biking accident, but he was otherwise symptom-free at the time. Fast-forward to just over one year later, and he had lost his ability to move and breathe on his own.

Think about that for a minute. Imagine, a year from now, being a prisoner inside your own body, unable to walk, or eat pizza, or scratch your nose.

The Often Awesome Army was founded by close friends that leveraged Facebook, Paypal, and other web-based technology to help Tim and his wife sort through the expensive logistical nightmare that is terminal illness. They organized his daily care. They held fundraisers that ranged from quilting bees to punk rock shows, from silent art auctions to tattoo parlor benefits. They picked up his prescriptions and brought him DVDs and sat by his bedside while he slept so he didn’t wake up and feel alone.

Over the last few years, the Often Awesome Army has expanded from a tight-knit group of caregivers to reach into the Greensboro community and beyond. The last count I saw was 1,400+ members. These people care for Tim with a fierceness that makes me kind of jealous. The most I dare hope for if I become incapacitated is that someone out there loves me enough to smother me with a pillow.

The story of Tim and his army is documented in an award-winning web series that is also called Often Awesome. It was born out of Tim’s fervent desire to educate people about his disease. To date, there are 33 episodes. I strongly encourage you to check them out. This one is my favorite.

As I’ve watched, I’ve been blown away by Tim’s bravery in the face of something so difficult and frightening and unfair. In episode 1, he looks into the camera and tells you what it’s like when a doctor tells you that you’re going to die a really nasty death. In episode 14, in a confessional reminiscent of the Blair Witch Project, he tells you how scary it is to lose movement in your arms. In episode 19, he tells you what it’s like to get a tracheotomy, his voice reduced to a permanent whisper.

The profit-driven realities of the pharmaceutical industry mean that there isn’t nearly enough research on ALS, which affects a tiny percentage of the population. What that means in practical terms is that no new treatments have been developed since the disease killed Tim’s mom 30 years ago. That is not to say progress hasn’t been made—in fact, researchers at Northwestern recently identified the cause. But the best hope for a cure is for us to give ALS (or, as Tim called it, “America’s best-kept secret disease”) a voice.

I am writing today, on one level, as my own small effort to raise public awareness of 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 other reason I’m telling you about Tim and Often Awesome is I think they represent something larger than Lou Gehrig’s disease. Watching the selfless testimonials of the Often Awesome Army as they describe the logistical challenges and emotional hardships and invaluable rewards of coming together to lift up Tim at the end of his life has given me hope that I will someday overcome my own Tyra Banks-level solipsism. It helps me believe in something bigger—sort of like religion, but with people instead of god.

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 am grateful to Tim for mattering so hard with such a great sense of humor. It has made me a better person.

In a sense, writing these words is a sad and impotent act. Even more sad and impotent was the context in which they originally appeared, a Facebook note I wrote for my friends. It was like shaking my fist at the universe while the rest of the universe played FarmVille. Tim is dead. Bill is now friends with Becca Walton and three other people, Sharon is making a joke about the earthquake, and Tim is dead, and pretty soon they will all be buried in my newsfeed and I will click that I like a picture of someone’s baby or vacation or cat. It would be depressing if it weren’t so fucking inane.

At the same time, I’m writing with lungs full of breath and a heart full of hope that all of us here are connected by something more than Facebook or the inevitability of death or our collective dislike of the cast of Jersey Shore, and for that I feel almost unbearably grateful.

About a year ago, when Tim lost his speech, he learned how to talk with his eyeballs. A special computer tracked his gaze so he could crack wise with a wicked cool robot voice.

Now he has a whole host of new voices. He has the Often Awesome Army, which is, in its own way, controlled by his gaze. He has a legacy of love plain to see in his friends and his family. And he has me, here, whispering his story in your ear. Please pass it on.


Gisela said...

I learned about your friend Tim from Ryan Marshall's Pacing the Panic Room blog. I've now watched and weeped through a few episodes and can only hope that I and my best friend and our kids can learn to live this courageously—and lovingly. Through thick and thin

You're so right ""It’s one thing to live your life, and it’s another thing to make it matter." ---- well now you have helped Tim's life matter. Thank you thank you for sharing his story. I will share it with everyone I know.

Pickled Blu said...

Thanks for your words. Beautiful.

Kelley B said...

Found this through Ryan's Pacing the Panic Room. Wow. And wow again. Movement. Inspiration. Light. Amazement. Bigness. Thank you. Thank you. Thank you.

Ashley said...

I too found this through Ryan at PTPR and for the record, I never comment on people's posts that I don't know. But, I felt the urge to tell you that I have been through loosing friends, close and those that are not as close. It doesn't matter how close you were when their lives impacted you as much as Tim's did. Thank you for writing this. It's beautiful.

Lex said...

hey, another reader from Ryan's Pacing the Panic Room here...thank you.

c scott said...

I did. I passed it on.
Writing, my friend who is a total stranger, is a form of immortality. It is said, and it can never be unsaid, It is written, and can never be unwritten. Never forget this one thing: Words change lives.

Andy Coon said...

Thank you so much for this blog post. Truly one of honesty and beauty.

HeyJoe said...

I have no idea who Ryan is nor about his panic room. My friend Fran passed this along to me. Beautiful post. Thanks for adding some beauty to the world.

Zinnderson said...

What beautiful words. Thank you - you said everything I was struggling to figure out how to say. What a lovely talent you have!

Lisa said...

Thanks for this post. I have been following Tim also, mainly because my mom has ALS and is probably not going to live much longer. This was a great post.

Anonymous said...

Well said. I have heard Tim's story in a few places now and I like to think he continues to move and change the world. What amazing courage and love on in so many ways and in so many people. Guilford has produced some amazing people (I am an alum too), but Tim and the Often Awesome Army are by far the most exceptional.

Paul Weiss said...

Beautifully said. In writing this blog, you have done just what Tim hoped for. Thank you.

In knowing Tim, one perspective of mine has changed. I used to think that if I had a terminal illness I'd want to just let go. Tim really raised the bar in terms of what someone can do.

I remember the first time I spoke with Tim after we first learned of his diagnosis. It was at a fundraiser. I tried to express my sympathy for his condition in talking about the "luck" he had. Without hesitation, he told me that he was incredibly lucky and he pointed at all of the support he was getting.

His is a beautiful soul.

dampscribbler said...

This is a really beautiful post. I've got a tab open for Often Awesome, and plan to check out some episodes soon, but I'm not prepared to be moved in that way right now.

ALS took my cousin in 2006. He was 8 months younger than me, had three kids who needed him, and a wife and tons of friends and family who loved him. He was far far too young, though honestly no one of any age deserves such a horrible passage.

Thank you for sharing your story, Tim's story, and the Often Awesome website. More needs to be done about ALS.

Rahel said...

Wow. Neither do I know you, nor Tim, nor did I knew anything about this very disease. But your blog and this story gave me shivers in regular intervalls. Thank you for your text. It's beautiful and evocative!
And by the way, I am German but I don't know a fitting word for your description. All I know is what you mean by your words and that's most important.

red_starla said...

hello. I am a stranger to your blog, yourself and tim - I chanced upon this story via amanda palmer's twitter and it has moved me inexpressibly. Your candour and insight and Tim's amazing tale really struck a chord in me. I can't wait to learn more about the often awesome army. thank you so much.

Josh said...

I just heard from another GuilCo classmate about Tim, only about 9 months late... You captured this so well. Thanks!

Anonymous said...

Just now learning about Tim because my friend has ALS and posted. So sorry and I'm trying to pick up the pace and help raise awareness. Jax FL