Open Focus: Beloved fiddler, contra dance caller Kaynor faces challenge of ALS

  • Fiddler David Kaynor, of Montague, center, is honored by musicians at the third Friday Greenfield contra dance last month at the Guiding Star Grange Hall, marking the 39th anniversary of the dance. For the Recorder/RICHIE DAVIS

  • DAVIS

For the Recorder
Published: 11/6/2019 10:28:33 PM

It’s a tradition going back 39 years in Greenfield’s venerable Guiding Star Grange Hall, although in this tri-state corner including southern New Hampshire and Vermont, contra dancing stretches over a couple of centuries.

As couples young and old make their way up and down the hardwood floor to timeless reels like Petronella and Money Musk at the third Friday dance, fiddler David Kaynor leads a stage full of musicians and caller Tim Von Egmond guides the dancers. Both hail from Montague; the musicians, like dancers young and old, come from all around.

Until earlier this year, Kaynor would have been calling the Friday dances, which he started here nearly four decades ago as part of a revival sparked by Kaynor, cousin Cammy Kaynor and Von Egmond.

But symptoms of the 71-year-old Montague musician’s amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease, have been worsening.

ALS, the incurable motor-neuron disease that weakens muscles — especially those associated with speaking, swallowing and breathing — have been encroaching on his life, although his fiddling hardly seemed to suffer at October’s third-Friday dance. That’s when the “Back Row Band” celebrated the anniversary of one of the Pioneer Valley’s oldest surviving contras with a birthday cake and a reunion of seemingly everyone who had been there back at the October 1978 outset.

Kaynor was even honored by a citation from the Massachusetts House of Representatives for his “steadfast allegiance to traditional music and dance, mentoring individuals and building community in Western Massachusetts and beyond.”

But if Kaynor’s fiddling that night seemed effortless, he knew otherwise.

“My playing has deteriorated,” Kaynor shared recently, in an interview in which he typed responses that were then vocalized by his laptop computer because speaking has become too difficult.

“I don’t have the unconscious muscle control in each hand that I used to have. So my playing takes more concentration than simply playing notes in time and in tune. I feel like it’s way more work. I have to focus more on the physical act of playing, so I don’t get the emotional experience of it. What I miss is the emotional immersion. ”

In addition to difficulties playing fiddle, which he’s played since the ’70s, Kaynor said he’s more distracted — even if recalling hundreds of tunes, including dozens of his own compositions, hasn’t been a problem.

Still, the fiddler, composer, teacher and retired caller plays at the third and fifth Friday Greenfield dances at the grange (he’s given up first Fridays) and also has been hosting Monday night drop-in sessions for fellow musicians at his Montague Center home. Those typically draw 15 to 30 or so fiddlers, bass players, accordionists, banjo and mandolin players, and other instrumentalists. Also, Kaynor co-directs the Fiddle Orchestra of Western Massachusetts, attending its Thursday rehearsals in Northampton, along with Wednesday rehearsals of the Vermont Fiddle Orchestra, which he directs, in Montpelier.

Kaynor, who grew up in Wilbraham but taught himself to play fiddle while living in Burlington, Vt., prefers to take the train to the Vermont rehearsals, but may have to start driving there because of all the apparatus that he needs to bring along.

“I’m increasingly dependent on breathing assistance machines, which have become really important for getting my lungs cleared out,” said Kaynor, who sleeps with the kind of CPAP (Continuous Positive Airway Pressure) device used by sleep apnea sufferers to pump air into his airway, to take some of the load off of his breathing muscles.

He first noticed the incurable disease as a pain in his shoulder, hip and back about two years ago, and then realized he was struggling to inhale while he was out for runs. Speaking, too, became more difficult, and he found himself having to work harder to avoid slurring words before recently giving up speech entirely.

“If I get a good night’s sleep, I can keep reasonably busy, and I have a lot of stamina,” said Kaynor’s oddly robotic-sounding computer voice one recent afternoon following a particularly sleepless night. “My breathing is terrible. The more I was awake, the more upset I got, and that kept me awake.”

The ailing fiddler, who figures he’s lost about 30 pounds since noticing the earliest symptoms, keeps a washcloth with him to catch saliva that he has difficulty controlling. He’s lost so much muscle mass that he finds his fiddle doesn’t rest on his shoulder the way it has for the last 50 years, and his neck muscle has weakened.

“Holding the instrument in playing position is a new and increasingly challenging task,” he said.

Still, at last month’s contra dance, surrounded by admiring musicians who’ve been welcomed, encouraged and coached by him for decades, fedora-topped Kaynor directed through facial gestures, glances and other signals when to return to the top of the reel or jig, when to move to the next tune, when to end.

But when it comes to whether to continue leading workshops and dances around the country, as Kaynor has been known for for years, there’s not a lot of certainty.

“It’s an ongoing question,” he admits. “It’s gotten harder because I have to take so much stuff with me: all my feeding tube stuff, cartons of formula for tubes themselves and the nutritional supplements.”

As it is, the fact that he’s had to quit calling dances around New England and around the country has meant that he has only a fraction of the work. He pointed back to a couple of nights earlier when he had to give up a fiddling gig.

“I felt horrible,” he recalled. “It was really a problem. I was wheezing deeply on every inhale and exhale. It took a lot of effort. After a few miles, I realized it was a bad idea and I came back, called my band mates and canceled.” It marked only the third or fourth time in a career of nearly 50 years that he’s ever called in sick.

Whether it’s been to join the grange and lead volunteers in repairing the halls in Greenfield and Montague, to mentoring young fiddlers as a way of encouraging traditional music or helping launch the 35-year-old Montague May Day celebration, Kaynor’s entire career has been about building community.

So it’s no surprise that the region’s traditional fiddling and dance communities have rallied around Kaynor in appreciation of his career. A benefit dance last May raised more than $10,000 for him, and a GoFundMe campaign in September reached its $7,500 goal in just 12 hours to help buy him an experimental pulsed electro-magnetic field machine that’s believed to stimulate growth of small blood vessels and remove toxins from the body.

“I’m unable to talk or swallow, thus am totally dependent on my text-to-speech app and my feeding tube,” Kaynor wrote for the campaign, which he suspended after the goal was reached. “I’m still playing, lugging sound gear, doing housework, walking, etc. with gusto and resolve, but with less strength and stamina. Treatment options are mainly palliative in the standard medical approach to ALS. There are few officially recognized treatments. I’m greatly hopeful that this technology will at least slow the progression of my symptoms and buy me some time while various clinical trials are underway around the country. It’s hard to predict how my symptoms will progress, but there’s a good chance that retaining at least some degree of purpose and comfort in my life will cost way more than my financial resources can support.”

Kaynor doesn’t practice fiddle as much as he had been, “mostly because it’s discouraging,” he said, although after a recent concert and workshop with accordionist Andy Davis and pianist Becky Ashenden in Shelburne, “I’ve felt a renewed desire to forge ahead and get back to more focused practicing. My concert really added to my consciousness that if I’m going to keep on playing seriously, I really need to do this.”

He reflects, “It was really encouraging. But at the same time, it makes the prospect of losing the ability to play with and for these people all the more troubling. I’m filled with gratitude and a sense of accomplishment. On the other hand, it adds to the grief that comes with the feeling the end is in sight.”

Yet the legacy of someone who’s made an invaluable contribution to the community, to traditional culture and to training musicians continues, like a long contra line.

Richie Davis was a writer and editor for more than 40 years at the Greenfield Recorder. His email is richie@richiedavis.net.



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