A bassist in decline, still soaring
It’s a scene out in the Greene Street parking lot on Sunday afternoon, replete with hipsters and children and dogs and beers and rollergirls in short-shorts. Up on stage, Joe Garrigan’s got his shirt off behind the drum kit, slapping out a complex beat as Decoration Ghost works through the final number of the set.
As the guitarists saw away at their strings, amid a veritable riot of sound, my pal Tim LaFollette has his wheelchair parked at a card table at the front of the stage. There’s a Mac laptop perched atop the table, as well as a keyboard on which LaFollette works out the bassline with his left hand. His right hand curls uselessly in his lap.
It’s been a not-so-slow slide for Tim, who was diagnosed with ALS last summer. A Facebook message sent out on April 20 to the Often Awesome Army “” the support group, fundraising outfit and caregiver pool comprised of the scores of lives he’s touched over the years “” noted that his respiratory function has dropped significantly, and Tim’s known all along that he’d gradually lose control of his musculature. But things are getting real. And it’s all happening so quickly.
Decoration Ghost moves through its paces, a number called “The Haze of Wine and Age,” and it wraps to great response from the parking-lot crowd. What most of them know is that, with little fanfare or deliberation, this is to be LaFollette’s last gig. This man who once defined himself as a musician is now subject to an entirely new paradigm.
“A bunch of shit happened all at once,” he says after four army members carry him offstage and switch him to the bigger wheelchair. “Too much.”
In addition to his diminished lung capacity, doctors found that he suffers from a congenital lung condition that exacerbates his decline.
“My right arm doesn’t do anything useful anymore. I get my feeding tube on Tuesday,” he says. “They’re thinking I’m gonna be on the ventilator by the end of the summer. I wet my bed this morning. What else do you want to hear?
“I think people don’t know how dire this is,” he says. That’s the thing: Time is running short for Tim LaFollette, and he damn well knows it. And he knows that no amount of goodwill, inspiration or fortitude will affect the impending deadline.
It’s tempting here to superimpose an optimistic veneer atop this grim reality, to point to the lives Tim has touched, the outpouring of love, his all-volunteer army and try to scrape together a stash of hope, a glimmer of positivity.
It’s true that Tim LaFollette is one tough son of a bitch. I have never seen a better man go through a worse ordeal in my entire life, and I have seen much. And though the disease is creeping through his system, gathering strength even as he loses his, he’s determined to face things on his own terms for as long as he can.
Like this afternoon, his final gig. “I wanted to make the decision myself,” he says. “I didn’t want to be up there onstage, not be able to play and bust out crying.”
And so it goes, the final drumbeat, and though the occasional grimace of fear washes across his face, Tim’s remarkable stoicism and candor against these indignities is nothing short of humbling.
He’s crapping in a bedside commode these days, starting to feel twitches in his lips and tongue, an indicator that the bulbar region at his brain stem, which governs his ability to eat and speak, is checking out. He communicates these things casually, like he’s giving a weather forecast or reading a bus schedule.
He mentions he’ll be needing an Eyegaze soon, a device that will track the movement of his pupils on his computer screen, allowing him access to all the things the online world can provide. The Eyegaze will cost a pretty penny “” insurance doesn’t cover things like that “” but that’s what the Often Awesome Army is for, and as his facilities abandon him, he will be more and more dependent on technology to interact with his evershrinking world.
“When the speech goes, the speech goes,” he says. While he still has the ability to speak, he’s using his Mac to make a synthetic version of his voice using recording and software. “It’ll sound kinda like me,” he says, in an inexplicable flash of earnestness and optimism.
And maybe that’s the lesson: to forget for the time being about Tim LaFollette’s slow, inexorable, excruciating slide towards everlasting peace and remember”¦ what? That he’s a great guy who got dealt a bad hand. That he has shed all his illusions and still has the strength to answer his fate. That in his suffering he’s galvanized dozens of supporters, and that in his waning days his life has become suffused with meaning even as the force flows from his poor, ravaged body.
Yes, there are lessons here. And teaching them will be the last great act of a soul tinged with gold.
Watch the Often Awesome web series at www.allacesmedia.com/ oftenawesome. Contribute to Tim’s cause at www.oftenawesome.org. And if you’re one of Tim’s friends, stop by and hang out for a bit. He likes that.