So many people give a fuck
August 28, 2011 11:59 AM Subscribe
The web series Often Awesome documents the life of Tim LaFollette, who was living with amyotrophic lateral sclerosis or Lou Gherig's disease. On August 23, Tim died at the age of 31.
In 2009, when he was 29, Tim LaFollette was diagnosed with a rare hereditary form of ALS, the disease that killed his mother and grandmother. ALS is a fatal degenerative disease that causes people to lose control of their muscles. People who have ALS lose the ability to move, swallow or breathe, while their mental faculties remain intact. Familial ALS, which accounts for only 5-10% of all cases, strikes younger and progresses more quickly than the more-common "sporadic" form of the disease.
After his diagnosis, Tim's friends and supporters in the Greensboro, NC art and music community rallied around him and his wife Kaylan, creating the Often Awesome Army to help with Tim's care, raise money to buy equipment that would improve Tim's quality of life, and raise awareness about the disease. The army raised funds and awareness through benefit concerts, art auctions, roller derby bouts, and sales of merchandise, such as this t-shirt based on the swallow motif tattoo that Tim got in memory of his mother and many of his supporters got in honor of him.
The web series makes clear what a cruel disease ALS is and how inadequate current treatments are. There is some cause for hope, though. On the same day that Tim died, researchers at Northwestern University announced a breakthrough in understanding the causes of the disease, which they hope will pave the way for research into effective treatments.
In 2009, when he was 29, Tim LaFollette was diagnosed with a rare hereditary form of ALS, the disease that killed his mother and grandmother. ALS is a fatal degenerative disease that causes people to lose control of their muscles. People who have ALS lose the ability to move, swallow or breathe, while their mental faculties remain intact. Familial ALS, which accounts for only 5-10% of all cases, strikes younger and progresses more quickly than the more-common "sporadic" form of the disease.
After his diagnosis, Tim's friends and supporters in the Greensboro, NC art and music community rallied around him and his wife Kaylan, creating the Often Awesome Army to help with Tim's care, raise money to buy equipment that would improve Tim's quality of life, and raise awareness about the disease. The army raised funds and awareness through benefit concerts, art auctions, roller derby bouts, and sales of merchandise, such as this t-shirt based on the swallow motif tattoo that Tim got in memory of his mother and many of his supporters got in honor of him.
The web series makes clear what a cruel disease ALS is and how inadequate current treatments are. There is some cause for hope, though. On the same day that Tim died, researchers at Northwestern University announced a breakthrough in understanding the causes of the disease, which they hope will pave the way for research into effective treatments.
The breakthrough link is behind a password. Could you summarize it?
posted by charlie don't surf at 12:59 PM on August 28, 2011
posted by charlie don't surf at 12:59 PM on August 28, 2011
Shoot! It worked for me when I got it off of google. Try this one. (I wanted to link to something that wasn't a mainstream news report, because those are kind of iffy sometimes. But iffy is better than paywalled, I think.)
posted by craichead at 1:04 PM on August 28, 2011
posted by craichead at 1:04 PM on August 28, 2011
The videos in the first link are incredible.
posted by the christopher hundreds at 2:44 PM on August 28, 2011
posted by the christopher hundreds at 2:44 PM on August 28, 2011
.
posted by Halloween Jack at 3:29 PM on August 28, 2011
posted by Halloween Jack at 3:29 PM on August 28, 2011
Wow, seeing this is kind of crazy, because Tim was a very good friend of mine, and I'm one of the members of the OA Army and an interviewee for one of the videos. In fact, I just went to Greensboro last weekend to see him and--as much as I didn't want to--say goodbye, because we knew the end was very close. I'm still not sure if I'm in shock, "dealing" with it, or what, because the death of a close friend is something that's never happened to me before. And man, was it frustrating to see that Northwestern article on the same day we lost Tim.
Tim and I went to Guilford College together, where we actually were put into orientation together, which I can easily say is when we became friends. In all our time there, I can never remember anyone ever bearing a grudge against him or hating him for any reason. He just got along with everyone, I don't know how he did it (and I wish I could have pulled it off myself), but it was just how he rolled. His music tastes were also impossible to pin down, two factors I guess made him a natural to head up WQFS, Guilford's radio station, for a while. It also let him go crazy with writing, singing, and recording music both solo and with a bunch of bands he created with our friends, starting with a pop album made up of songs he wrote about a bunch of us. You can see some of this in Episode 30 of the webisodes, and even though his later bands had actual releases, I still have one of the Little Brother CD-Rs ("Acquaintances, Volume 1") that we made when it was just him, his borrowed recording equipment, and a PC with CD burner. That one's been in heavy rotation this week. When I found out The Popovers had done the theme song for the Savage Love podcast, I was completely unsurprised, because it was a perfect match for his sensibilities and his sense of humor.
It's been hell to watch him go from a guy who was this animated, intense, immensely likable, and creative dynamo to a person who basically had nothing left to express himself except a monotone computerized voice. What's worse for me is that I moved after we graduated college, so I saw it as these brief sessions of personal contact interspersed with occasional updates via the videos. One month I would go down and he would be using a cane, then a walker, and then for his and Kaylan's wedding it was a walker and scooter, and then it was just the scooter but he could still talk. Last October, I came down and he was already bedridden, and only talked without the computer for short bursts. This year, he couldn't talk without it at all. But through it all, he kept up his "fuck this shitty disease" attitude, that oddball sense of humor, his love of pop music and movies, and even a dirty mind when he knew it would crack us up. And even though it took a lot out of him, he managed to go see Prince live earlier this year, something he's been wanting to do for years.
I really hope that Tim and Often Awesome help put the hurt on ALS. Dan Savage summed it up perfectly when he said "ALS can go fuck itself." It's a nasty, fucked-up disease that makes you a prisoner in your own body, and will eventually be the cause of your death. Tim had the misfortune of being in the crosshairs of ALS from the very beginning, but he was strong enough to have the will to fight it for a long time, longer than he originally thought. He was also lucky enough to be well-liked by so many people that the only reason he needed nurses was for actual medical procedures, because the Army had volunteers to help him with everything else. But there's a ton of people out there with ALS that aren't going to be that strong, or that lucky. Despite being named after Lou Gehrig (who may not have actually had ALS) and afflicting Stephen Hawking, there isn't much of a "face" to ALS like there are with other terminal illnesses. Maybe Often Awesome can do that. Not to get all cheesy, but if you're inspired to help, spread the word wherever you can, online or in person. Help make it so ALS does go fuck itself, because it's fucked over a lot of people like Tim.
posted by zombieflanders at 4:02 PM on August 28, 2011 [22 favorites]
Tim and I went to Guilford College together, where we actually were put into orientation together, which I can easily say is when we became friends. In all our time there, I can never remember anyone ever bearing a grudge against him or hating him for any reason. He just got along with everyone, I don't know how he did it (and I wish I could have pulled it off myself), but it was just how he rolled. His music tastes were also impossible to pin down, two factors I guess made him a natural to head up WQFS, Guilford's radio station, for a while. It also let him go crazy with writing, singing, and recording music both solo and with a bunch of bands he created with our friends, starting with a pop album made up of songs he wrote about a bunch of us. You can see some of this in Episode 30 of the webisodes, and even though his later bands had actual releases, I still have one of the Little Brother CD-Rs ("Acquaintances, Volume 1") that we made when it was just him, his borrowed recording equipment, and a PC with CD burner. That one's been in heavy rotation this week. When I found out The Popovers had done the theme song for the Savage Love podcast, I was completely unsurprised, because it was a perfect match for his sensibilities and his sense of humor.
It's been hell to watch him go from a guy who was this animated, intense, immensely likable, and creative dynamo to a person who basically had nothing left to express himself except a monotone computerized voice. What's worse for me is that I moved after we graduated college, so I saw it as these brief sessions of personal contact interspersed with occasional updates via the videos. One month I would go down and he would be using a cane, then a walker, and then for his and Kaylan's wedding it was a walker and scooter, and then it was just the scooter but he could still talk. Last October, I came down and he was already bedridden, and only talked without the computer for short bursts. This year, he couldn't talk without it at all. But through it all, he kept up his "fuck this shitty disease" attitude, that oddball sense of humor, his love of pop music and movies, and even a dirty mind when he knew it would crack us up. And even though it took a lot out of him, he managed to go see Prince live earlier this year, something he's been wanting to do for years.
I really hope that Tim and Often Awesome help put the hurt on ALS. Dan Savage summed it up perfectly when he said "ALS can go fuck itself." It's a nasty, fucked-up disease that makes you a prisoner in your own body, and will eventually be the cause of your death. Tim had the misfortune of being in the crosshairs of ALS from the very beginning, but he was strong enough to have the will to fight it for a long time, longer than he originally thought. He was also lucky enough to be well-liked by so many people that the only reason he needed nurses was for actual medical procedures, because the Army had volunteers to help him with everything else. But there's a ton of people out there with ALS that aren't going to be that strong, or that lucky. Despite being named after Lou Gehrig (who may not have actually had ALS) and afflicting Stephen Hawking, there isn't much of a "face" to ALS like there are with other terminal illnesses. Maybe Often Awesome can do that. Not to get all cheesy, but if you're inspired to help, spread the word wherever you can, online or in person. Help make it so ALS does go fuck itself, because it's fucked over a lot of people like Tim.
posted by zombieflanders at 4:02 PM on August 28, 2011 [22 favorites]
So sad.
RIP, Tim.
As someone who followed this story here in Greensboro, and who knows one of the filmmakers, it's heartening to see this shared on The Blue.
My stepfather died of ALS, and so did another dear friend.
We can't beat this disease quickly enough.
posted by Buckley at 4:51 PM on August 28, 2011 [1 favorite]
RIP, Tim.
As someone who followed this story here in Greensboro, and who knows one of the filmmakers, it's heartening to see this shared on The Blue.
My stepfather died of ALS, and so did another dear friend.
We can't beat this disease quickly enough.
posted by Buckley at 4:51 PM on August 28, 2011 [1 favorite]
.
posted by spinifex23 at 11:10 PM on August 28, 2011
posted by spinifex23 at 11:10 PM on August 28, 2011
A terrifying disease, but a great post on it.
posted by Theta States at 10:01 AM on August 29, 2011
posted by Theta States at 10:01 AM on August 29, 2011
.
posted by joannemerriam at 12:32 PM on August 29, 2011
posted by joannemerriam at 12:32 PM on August 29, 2011
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