He was, his mother recalls, “one of the lucky ones,” a child born with musical talent who grew up to make a living playing the piano and keyboard up and down the West Coast.

Tim Butterworth, 36, played with performance bands at Disneyland Park. He once played at Cameron Diaz’s wedding. He played so well that Debbie Butterworth often found herself in awe, not quite believing what she was seeing and hearing.

“His hands would go up and down that keyboard like you just couldn’t believe. It was like magic,” Debbie said Friday. “And especially when it’s your own kid, you’re just like, ‘How do you do that?’ ”

We may never know.

Last August, on his way to a gig in Oakland, California, Tim suffered an epileptic seizure while waiting for a train. His head hit the concrete platform hard, causing severe brain damage that forced surgeons to temporarily remove a section of his skull to relieve the swelling.

Now, the guy who had it all finds himself totally dependent on doctors, nurses, rehabilitation specialists and, most of all, his family – all helping him slowly relearn how to speak, how to eat, how to walk, how to dress, how to tie his shoes…

All the while, those closest to him can only wonder, where did the music go?

“He had thousands of songs in his head,” Debbie said. “And now they’re not there. He can’t access them.”

Full disclosure, I knew Tim Butterworth when he was a kid growing up with my children in Cape Elizabeth. I can still see him in his Cub Scout uniform or standing on a school stage playing the trumpet with jaw-dropping perfection.

At the same time, I can still see his family – parents Frank and Debbie, brothers Andy, Jeff and Jonathan – always setting the standard for kindness, warmth and love for one another. They truly were, and still are, what we like to call “good people.”

Tim graduated from Cape Elizabeth High School in 2001, went on to study piano at the Berklee College of Music and then headed west to Los Angeles to pursue his musical dreams.

The adult onset epilepsy first surfaced about 10 years ago. First one seizure, then another a year later, and then more frequently until a year ago a series of “cluster seizures” left him in a coma at Cedars-Sinai Medical Center in Los Angeles.

He escaped that episode with no brain damage. But then last summer, despite the medications aimed at preventing more seizures or at least reducing their severity, he collapsed, all alone, on the train platform.

A good Samaritan found him and called 911. First responders checked his cellphone and called Frank, who was on a cross-country flight the next morning. Debbie followed the next day.

“We were out there for three months,” Debbie said.

At one point early on, a neurologist told them, “If we can get him sitting in a wheelchair and feeding himself, that will be our success.”

“That’s as far as we thought he’d be able to go,” Debbie said. “And that was heartbreaking.”

Six months later, Tim is back closer to home. He and Frank, who has taken a leave from his job with an insurance agency, now live in an in-law apartment in brother Andy’s home in Wakefield, Massachusetts.

It provides easy access to Massachusetts General Hospital in Boston, where Tim gets the bulk of his care, as well as Spaulding Rehabilitation Hospital in Charlestown, where he recently began music therapy.

Last month, Tim was admitted to Mass General for a nine-day epilepsy monitoring study. Doctors hooked him up to EEG and EKG monitors, along with audio and video recorders, and then decreased his medication to actually bring on repeated seizures. The whole time, Frank and Debbie remained at his bedside.

“Frank and I were allowed to stay in his room for the entire time, which we appreciated to support each other and Tim,” Debbie later wrote in a social media update to family and friends. “But the severe seizures he experienced were very difficult for us to watch.”

Through it all, Tim continues to defy his grim prognosis.

He now can walk unassisted, speak and read individual words, brush his own teeth, even laugh at some of the jokes that help keep the entire family afloat.

Still, it’s a day-to-day struggle. Frank and Debbie made sure to put an electric keyboard in the apartment, but so far Tim has only fiddled with it once or twice.

Debbie can sense his frustration.

“Sometimes he’ll just pick up his right hand and drop it, as if to say, ‘This hand doesn’t work anymore,’ ” Debbie said. “Which is kind of heartbreaking when you’re talking about a piano player.”

Early on in their ordeal, the Butterworths were approached by friends who wanted to help, maybe set up a GoFundMe page to offset the ever-rising medical expenses not covered by Tim’s insurance. Frank and Debbie, who works as a math support teacher at Pond Cove Elementary School in Cape Elizabeth, felt uncomfortable with the offer at first.

Then they saw that the cost of his first three weeks of treatment at a California trauma center was more than $1 million.

“When we heard that we said, ‘OK, we have no choice.’ ” Debbie said.

As of Saturday, the GoFundMe page had raised just over $120,000.

Cue the musicians: Led by renowned Maine singer Anna Lombard, who attended Cape Elizabeth schools with Tim, a benefit concert in his name will be held Thursday at Aura in Portland. The show starts at 8 p.m., preceded by a pre-party at 6 p.m.

The lineup, in addition to Lombard, includes several of Tim’s old music friends from Cape Elizabeth. Also taking the stage will be Rustic Overtones, the Portland-based rock band that suddenly finds itself grappling with a tragedy of its own: Dave Noyes, the group’s trombonist, died unexpectedly Thursday at his home in Portland.

Debbie said she spoke Friday with concert organizers who told her the band will still be there. Noyes, they said, would have wanted it that way.

“I’m deeply, deeply grateful for that,” Debbie said.

Tim will be there, too.

“Part of us is a little nervous for him, that it’s going to be overwhelming,” Debbie said. “But we talked to him about it, told him what it was going to be like, told him he was going to see a lot of people, but Frank and I will be with him the whole time. And he seemed like, ‘OK, I can do it.’ ”

Bravo, piano man. Bravo.

 


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