Banding together to fight MS and its stigma
Amanda Nichols remembers waking up one morning in 2003 thinking she had a rough night’s sleep.
“I kind of woke up stiff and sore in a strange way and thought at first, ‘Gee, I slept wrong in that bed, what did I do?’ ’’ recalls Nichols, a local music writer and musician who was, at the time, also a nursing student. “And then it didn’t go away and I thought I slept really wrong.’’
The stiffness, she says, started creeping up from her feet, to a leg, then to an arm. By the time she had been checked out by a doctor, and then a neurologist a couple of days later, Nichols could barely move.
“Getting up and walking around just suddenly became impossible,’’ says Nichols, 33. “And I had no idea what it was - I felt like I had pinched a nerve. You say, ‘What did I do?’ And the answer was that I did nothing.’’
Such is the insidious and potentially devastating nature of multiple sclerosis, a condition defined by the National Multiple Sclerosis Society as “a chronic, often disabling disease that attacks the central nervous system, which is made up of the brain, spinal cord, and optic nerves.’’ Symptoms can range from numbness in the limbs to paralysis and loss of vision.
Nichols was officially diagnosed in January 2008, after a series of trips to emergency rooms after strange symptoms flared up again in 2007. “I couldn’t write, I couldn’t type, I couldn’t work, I couldn’t do anything,’’ she says over the phone from where she now works at a Harvard Medical School laboratory. “I couldn’t even brush my teeth.’’
So far, there is no cure for MS. But Nichols, like so many others, is aiming to change that.
Starting tonight at Church, and continuing tomorrow night, Nichols will host “Crash Safely: Concerts for MS Awareness and Bike MS Benefit,’’ a music fund-raiser to raise donations for “The Maybe Sump’ms,’’ a local bicycle team participating in a charity bike ride for MS in New York on Oct. 2. But Nichols and her husband, Church booking agent Nick Blakey, say the shows are also aimed at eradicating the confusion, secrecy, and stigma that persist around the disease.
“I think a lot of people with MS are still very guarded about what they’ve got,’’ says Blakey, a bassist whose band, the In Out, plays tonight’s installment. (“Crash Safely’’ is named after a song by another band of Blakey’s, the Takers). “But if it’s in the shadows and not out front and center, then you don’t get funding and there’s no cure. It’s your body basically giving you the middle finger.’’
The slate of bands on tap for this weekend includes at least a couple of locally known performers, Figgs drummer Pete Hayes (who is captain of the bike team), and former Shods frontman Kevin Stevenson, who have both made their own struggles with MS public.
Other participating bands include this year’s Rock ’n’ Roll Rumble winners the John Powhida International Airport; the pop-rocking Russians; and a reunited Titanics - all performing tonight. Tomorrow’s slate features glam-rock dandies Gene Dante & the Future Starlets; folk-punk rocker Jason Bennett; lo-fi garage-grime merchants Triple Thick; and Detroit-based headliners Easy Action. Both nights will feature raffles and silent auctions of goods ranging from recording studio time and music merchandise to bike accessories and gym memberships.
As for making her own music, Nichols says damage to the ring finger of her right hand has made playing the oboe, her usual instrument, all but impossible. But she has since taken up the bass guitar, which she finds easier to navigate. Some days, the jam sessions at home with her husband work better than others. A lot of it, she says, has to do with the weather.
“If it’s really humid, then I feel all these little symptoms come back,’’ Nichols explains. “I’ll start dragging a foot behind me, and I’ll think, ‘OK, it’s hot out, I have to get back into some air conditioning.’ Or I’ll be holding a bag, and because my ring finger’s a little weird, if I drop the bag I’ll say, ‘OK, it’s gonna rain!’ ’’
Jonathan Perry can be reached at firstname.lastname@example.org.