ONCE MORE WITH FEELING Kevin Stevenson (left), who had to struggle through later Shods gigs with MS, re-learned how to play guitar.
If music can be a refuge for the open-minded, it should also be able to take the lead in changing entrenched attitudes. You'd think that could be particularly true when it comes to a potentially debilitating disease like Multiple Sclerosis (MS), which hits young adults hard and can be especially devastating for musicians.
"People back away like they could catch it from you," says longtime Boston music fixture Amanda Nichols, 32, who was diagnosed with the disease in 2007 and is co-organizing a two-night, 10-band benefit dubbed Crash Safely next weekend at Church. "And it's scary. You could wake up one day and be blind. Or one day you can't move your arm, you can't write, you can't work, you can't feed yourself."
These symptoms are the kind of nightmare faced by people living with the disease, which affects the central nervous system. And there are roughly 300,000 cases in the US alone, which equates to about one per every 1000 people. Nichols had her first major outbreak in 2003, four years before her proper diagnosis, when she woke up one day and could barely move her body. Through proper diagnosis and the correct regimen of medication (often including frequent shots and infusions), Nichols has been able to live free of outbreaks for extended periods of time. Others aren't so lucky.
Several prominent players in Boston music scene have been hit with MS. Kevin Stevenson of the Shods and Pete Hayes of the Figgs, who both played a ton around town in the '90s, are living and rocking with MS. But they have both suffered from some of the diseases extreme symptoms — Stevenson nearly lost his ability to play the guitar, and Hayes has feared that he wouldn't drum again.
Stevenson, 41, was diagnosed in 1999, and visibly struggled through Shods gigs, eventually having to re-learn the guitar. "It just took a lot of practice," he says with the same defiance he shows on stage. "I just kept playing and playing and playing. I am constantly challenging this disease all the time."
Hayes, 42, lost almost all sensation on the right side of his body in 2008 before being diagnosed. Although he has regained 85 to 90 percent of sensation in his right side, he remembers being terrified at the prospect of not being able to drum. "I had a gig the night I was diagnosed," he recalls. "I played terribly. I was missing cymbals."
Now a New Yorker, Hayes is riding in the 50-mile Bike MS NYC event, which will be held October 2. Hayes's team, the Maybe Sump'ms, hopes to raise $15,000 through their ride and through Crash Safely.
Nichols put Crash Safely together with her husband, Church booking agent Nick Blakey (also of the In Out), in a response to Hayes's efforts to raise MS money and awareness. The two-night stand features a reunited Titanics, John Powhida International Airport, Pete Hayes's Rock Shop, the Russians, and the In Out on September 23, and Easy Action, Triple Thick, Gene Dante & the Future Starlets, Jason Bennett, and Kevin Stevenson on September 24. On stage, Hayes and Stevenson both have the chance to show audiences how they challenge the disease with their music.