Musician with ALS Makes the Most
The Winston-Salem pop-rock songwriter SnÃ¼zz is onstage with his band, which includes Greensboro guitarist Sam Frazier and former Athenaeum member and current novelist Nic Brown, at Greene Street Club on a recent Wednesday evening. SnÃ¼zz introduces some musical guests: Catie Braly and “the infallible Tim LaFollette.”
LaFollette is broad-shouldered guy with straw thatch hair who is blessed with kind, intelligent and humorous eyes. That’s the way I’ve known him since I met him in 2005 when his band Kudzu Wish played its final show on this very stage. I get the impression that Tim is considered among his friends and fellow musicians someone who can be leaned upon. He’s also the one who is most likely to express his emotions. He was the one who cried onstage at the culmination of that final Kudzu Wish show. Tonight, he’s walking with the assistance of a black flame-job cane. He nimbly makes his way to the stage, takes his place next to Braly and makes a smiling appraisal of his fellow musicians.
LaFollette’s primary band, Decoration Ghost, will be playing later tonight, but this is the stage debut of a home recording project called the Popovers. LaFollette and Braly sing a rousing version of their song, “Yoga In the Morning,” with an infectious call of “wake up, wake up.” LaFollette leans on the cane and braces himself against the microphone. His voice is strong and clear, and he nods his head and rolls his eyes with just a touch of stage drama. It’s a funny song that is appropriate and inspiring all at the same time. It brings smiles to the faces in the room. When the song is over, LaFollette steps of the stage, hugs Braly and then receives a kiss from his girlfriend, Kaylan Szafranski.
“Yesterday, I surrendered my license, and I picked up my walker and my wheelchair,” LaFollette tells me in the stairwell. “I have no reaction in my right foot. I’ve got lower limb onset.”
His former Kudzu Wish bandmate Adam Thorn has started an acoustic solo set, and is singing a hoarse and affecting version of the old hymn “Farther Along”: “Farther along we’ll know more about it; Farther along we’ll understand why; Cheer up my brother, live in the sunshine; We’ll understand it all by and by.”
LaFollette was diagnosed with ALS, a disease that took his mother and grandmother’s lives in 1982. Short for amyotrophic lateral sclerosis, ALS is a terminal neurological disease that affects the brain and the spinal cord and leads to progressive breakdown of the muscles.
SnÃ¼zz says LaFollette is the same age as his mother was when she died.
“I remember when this started happening before he was ever officially diagnosed and in the back of our minds we thought, ‘Oh, God, no, don’t let this be what it seems to be,'” SnÃ¼zz will say later. “And well, our worst fears have come to fruition.”What does a man facing an effective death sentence look and sound like?
In the case of Tim LaFollette, who’s being celebrated and supported under the banner “often awesome” with this benefit concert tonight, he admits to experiencing grief, but conveys gratitude and a positive outlook.
“The buildup was terrifying,” LaFollette says. “I won’t say it was a relief to find out it was ALS, but at least it had a name. My girlfriend and I decided to go public with it very quickly. This isn’t the kind of thing that even two people can do alone. I’m lucky to be in Greensboro, where this kind of support exists, whether it’s someone chipping in a few bucks or driving me to the doctor. I’m between two great ALS clinics at Duke and Wake Forest. We have one of the best chapters of the ALS Association “” the Jim ‘Catfish’ Hunter Chapter.”
The ALS hasn’t yet impeded LaFollette’s ability to make music. His hands and fingers work fine. His lung capacity is diminished, but not noticeably.
He notes with admiration that his girlfriend has “put her life on pause” for him. Szafranski has moved in with LaFollette, and taken on a new role of caretaker in addition to girlfriend.
“We wanted to have some of my more mobile months be together,” he says. “Even now, I need help getting my pants on and off because I can’t feel this leg.”
Talking about his disease, LaFollette demonstrates candor but stops short of self-pity.
“What’s hard,” he says, “is I have to get over myself. I have to get over the fact that I can’t do certain things. I have to get real humble real quick because at a certain point I won’t be able to do anything without help.”
With that measure of grace, it’s understandable why LaFollette was given the honor of reciting the famous “Lou Gehrig speech (“Today, I consider myself the luckiest man on the face of the earth”) at the Durham Bulls stadium on July 4 when the US National team took on the Guatemala national team.
Szafranski doesn’t skip a beat when asked about her decision to take on the job of caring for her boyfriend.”Of course,” she says. “He’s my best friend. I’ve always felt that nothing bad can come out of Tim, so nothing bad can come out of this.”
The room has the feel of a family reunion, and the breadth of LaFollette’s friendships and musical associations is attested by the stylistic range of bands that are donating their talents: Filthybird, Citified and a Bronzed Chorus. Josh Neas, a DJ at WQFS 90.9 FM who is serving as emcee, is sporting a new Mohawk haircut for event. Musicians as diverse as Walrus and Matty Sheets are standing at the front of the crowd admiring their fellow players. Michael Sileno, who met LaFollette when the two worked for promoter Joe Ferguson at the now-demolished Ace’s Basement club, beams as he strolls the floor. Ferguson, a partner at Greene Street Club, encouraged Sileno to organize the benefit and agreed to give all proceeds from the door and 10 percent of beer sales to the cause.
SnÃ¼zz is standing by the side of the stage looking like a proud uncle. He’ll later disclose to me that this is his last public appearance for awhile, as he plans to undergo chemo treatments for recently diagnosed lymphoma.For now, we’re talking about Tim LaFollette. I mention that his vocals sounded strong during his guest appearance with SnÃ¼zz.
“Didn’t they?” SnÃ¼zz says. “I’ve been recording Decoration Ghost. Tim laid down a vocal track the other day, and I thought he nailed it.”
SnÃ¼zz says that it’s LaFollette calling him to see how he is doing more often than the other way around.
“We have decided just to work our asses off as long as Tim is able,” SnÃ¼zz writes in an e-mail the next day. “We also plan to record more Popovers tunes here, and I just want to do everything I can. One of Tim’s greatest legacies is his music ability, his lyrical slant and his fantastic arranging skills. I’ve been very impressed with his determination and resilience at getting his legacy of music preserved.”