FARMINGTON — The rapper Spose belted out the lyrics to “Can’t Get There from Here” while a couple of dozen onlookers drank beer or Twisted Tea and shouted their approval.
Spose banged the air with his fist to a pounding bass line, standing in the living room of an expanded modular home about three miles outside of downtown Farmington. Five feet away, Nick Stanley watched, mostly motionless, from the bed he’s been confined to for two years. A condition called adult onset spinal muscular atrophy has left the 35-year-old unable to walk, to eat or to breathe on his own. He’s been told his condition can only get worse. But, on this day, Stanley’s crystal-blue eyes sparkled and his head nodded in time to the beat.
“When you lay in one spot all day … everything is the same. But the music … is always … changing,” said Stanley, laboring to speak, as a machine controls his every breath.
Listening to the 688 songs on a Spotify playlist titled “Are You Crippled?” has become as important a part of Stanley’s daily medical routine as having his nurses clean his ventilator or change his catheter bag. Musicians from around the state have been bringing live music to Stanley’s bedside in house concerts Stanley looks forward to with the giddiness of a teenager planning a party.
Earlier this month, Spose and Rustic Overtones’ lead singer, Dave Gutter, drove 100 miles through newly fallen snow in a rental car to play for free at Stanley’s house. Though Rustic Overtones is Maine’s best-known band of the last 15 years and Spose had a radio hit a couple of years ago called “I’m Awesome,” both men live simply and work hard to scratch out a living playing music. Both have visited Stanley regularly in the past year.
Stanley takes what he gets from music – joy, relief, hope – and passes on those feelings to everyone he meets. Family, friends and local musicians marvel at how upbeat he is and say Stanley is a constant inspiration. He gets a lot, but he probably gives more.
“Playing here gives me as much hope as it gives him,” said Gutter, 39. “As a musician, you get caught up in trying to make money, making a living off it. But then you see Nick and you see the impact music has. He reminds me how powerful music can be.”
MAKING HIS WORLD BIGGER
Stanley’s physical world is small, about the size of his one-story modular home. He spends countless hours in bed staring at pictures and memorabilia he’s had placed on his ceiling, or at his TV, or listening to music.
But he’s got more than 900 Facebook “friends” and he spends a chunk of each day dictating posts to his nursing assistant.
For weeks, Stanley traded Facebook messages with a reporter, answering questions about his life before his condition worsened and since.
As a teenager, Stanley woke up at 4 a.m. to rake sand traps at Oakdale Country Club in Mexico, where his dad worked. Then he would play golf all day. He played on his high school golf team. After graduation, he got a full-time job at Wilson Lake Country Club in Wilton.
“I would mow the greens every morning and any other kind of maintenance the golf course needed. I played all the time, too. I got down to a 5 handicap and I played under par once!” Stanley wrote.
In his late teens, Stanley began to realize something was wrong. He had trouble urinating. That led to tests and to the eventual discovery by doctors that Stanley had been born with a tethered spinal cord. The spinal cord in most people floats freely in the vertebral column, but Stanley was born with a fixed spinal cord. As a result, his spinal cord stretched as he grew, damaging his nerves severely.
Despite multiple surgeries, Stanley’s condition progressed to become adult onset spinal muscular atrophy, resulting from a loss of motor neurons and causing his muscles to waste away.
Spinal muscular atrophy affects as many as 1 in 6,000 people. There are four types, with adult onset being the rarest, said Dr. Michael Kleinman, a neurologist at Maine Medical Center in Portland with a specialty in neuromuscular diseases.
By the age of 21, Stanley was walking with crutches. At 24, he was in a wheelchair. He was first hooked to a ventilator to breathe when he was almost 28, after an episode when doctors told his family he had retained a nearly lethal amount of carbon dioxide and they feared he might not pull through. He was in the hospital for 40 days.
He used a ventilator with a face mask until January, when it was no longer enough. Then he had an operation to insert a breathing tube into his throat. He uses a tube for eating as well. He can move his head and his arms a little, but nothing else.
MUSIC AFFECTS MIND AND BODY
Music therapy has been spreading in medicine. Research reviews published by the Cochrane Collaboration, a nonprofit that analyzes the effectiveness of health care interventions, find it improves state of mind for people with depression or schizophrenia and eases anxiety and even pain in cancer patients.
To Stanley, the benefit of music is clear. Though most of his muscles have failed him, sensation remains. When he listens to music, he said, he feels the urge to move with the beat.
“My body … wants … to move,” he said. “It’s so cool.”
Kleinman said long-term prognoses for people with spinal muscular atrophy are too varied to categorize.
“There are people who pass away shortly after a diagnosis, and those who outlive all expectations,” he said.
Stanley has a nurse and nursing assistant with him every day. His older brother, Isacc, 41, lives with him in a $45,000 modular home he owns on family land. Other friends and family spend nights at Stanley’s home as well.
“We feed him and do the medical stuff and sit down and talk to him, but what can we really do?” said his mother, Karen Sweetser, whose “Feel No Pain” tattoo matches one on Nick’s arm.
“He was always a happy kid, running around all the time,” she said.
Friends and family tell stories about Stanley’s pluck and his sense of humor.
When he was still in a wheelchair, he regularly trekked to downtown Farmington to drink and socialize at the Front Street Tavern.
“One night he’s coming home at 2 a.m., drunk, and the battery on his wheelchair runs out,” said Isacc Stanley. “So what does he do? He calls a buddy with a Jeep, and the buddy uses the Jeep to push him and his chair all the way home.”
FEEL NO PAIN
Last September, with Rustic Overtones scheduled to play an outdoor show at nearby Titcomb Mountain ski area, Stanley’s friends and family decided it was time for a road trip.
Outings are no small task, as Stanley has to travel with his ventilator and a nurse, and on a bed.
One of Stanley’s childhood friends, Matt Childs, took an old hospital bed and souped it up with heavy-duty wheels he bought at Tractor Supply Co. Then Childs sawed off some of the railing on the ramp to Stanley’s house, so the bed would fit down it more easily.
At the show, Stanley was joined by about 100 friends, family members and well-wishers.
A little more than a year ago Stanley had his first big concert in his home.
Spose, whose real name is Ryan Peters, was scheduled to play a show at Sugarloaf ski resort, north of Farmington. A mutual friend told Peters he should stop in and see Stanley on his way up north.
“It was a little awkward. I didn’t know him at all and couldn’t understand him that well at first. But I start doing ‘Can’t Get There from Here’ and Nick is finishing every line,” said Peters, 28, of Wells. “Nick was so happy. I was thinking, ‘If this guy who can’t friggin’ move his body can be happy, then I’m doing great.’ It changed my perspective a lot.”
Peters has now performed at Stanley’s house, for him and a couple of dozen friends, three times. He says he does it as much for himself, for how good it makes him feel, as for Stanley.
Word of mouth has attracted other musicians. Rustic Overtones has played Stanley’s home three times, too. All seven members of the band, including three horn players, have jammed into the one room that serves as Stanley’s bedroom, living room and kitchen.
A few musicians from the Farmington area and a few from Massachusetts also have played “Stanley Station,” the name Stanley has given his home music venue. There’s live music at Stanley’s home at least twice a month.
“I can’t … get enough … music,” Stanley said. “I’d love to have … more musicians here.”
QUIET TIME, THEN NOISE
On the morning of the March 14 show at his home, Stanley’s nursing assistant, Eva Boyd, prepped him for a big day. She washed him, put small colorful beads in his beard and primped the black hair of his mohawk cut so it would stand straight up.
Though he was covered with blankets, Stanley shivered and his teeth chattered uncontrollably at times.
Still, he wanted to talk.
“Everything … on my walls … has a meaning,” he said.
On a sloped ceiling that’s easy for him to see are several dozen photos, posters or drawings. Some are CD jackets signed by musicians, others are poems or letters from friends. A flat-screen TV plays a constant slideshow of pictures of Stanley when he was younger, when he was golfing, and of family and friends. His 6-year-old niece, Avery, shows up often.
As he talked, Stanley’s nurse, Lisa Picard, fed him and checked his ventilator. She changed his catheter bag, out of sight under a blanket.
A little later, Isacc noticed some gunk in one of the tubes attached to his brother’s throat and replaced it with a fresh one.
“I usually do that once a day, so I figured I should do it before the music starts,” he said.
Isacc is the only family member living with Stanley. For several years, Stanley had a girlfriend who lived with him. They are still friends and the woman helps care for him.
Isacc moved in with Stanley most recently about eight months ago, after living for a time in a homeless shelter for military veterans. Several operations, stemming from high school football injuries, have left him unable to hold a job.
Now, he said, his job is taking care of his brother. He knows how to maintain the medical equipment, and he sometimes trains others.
Because the house concerts are what his brother looks forward to more than anything, Isacc would like to expand them, in a big way, by building an outdoor stage in the front yard this year. He’d also like to clear a tenting area for people to stay over.
“I’d like to have it so we could bring Nick right out here and he could camp with everybody else,” he said. “I just want to make sure he has as many good days as possible.”
ILL, IN A GOOD WAY
While Spose and Gutter got ready to play, tables and counters filled with food. People brought slow cookers and aluminum baking pans full of meatballs, chili, hot dogs and macaroni and cheese.
The crowd included three of Stanley’s four siblings, as well as his parents and step-parents. At any given time, 20 to 30 people filled the small home.
Gutter played solo on his acoustic guitar, belting out Rustic Overtones tunes, including the easy-grooving “Feast or Famine” and the newer, tongue-in-cheek rocker called “Bedside Manor” about a patient who stays in his sick bed to see more of his nurse. Gutter had consulted with Stanley on the lyrics.
When Spose rapped the lyrics to “Jimmy” – a song about a kid who gets bullied, but gets even – Stanley mouthed the rhymes.
At times friends stood up and held marijuana cigarettes to Stanley’s mouth so he could take puffs. He’s a regular user of medical marijuana, saying it eases his anxiety.
Near the end of the afternoon, Gutter and Spose spent nearly an hour “freestyling,” or improvising rhymes. They used Stanley’s name, rapping about their drive up to his home and their stop at a store in Turner.
“This has been the illest freestyle session ever,” Spose told the crowd, as they hooted and hollered.
“Yeah, it was,” Stanley said.
IT IS WHAT IT IS
Stanley can’t type or hold a pen, but his passion for music has pushed him to write a couple of songs with his guitarist friend Jason McClure of nearby Industry.
One is called “Feel No Pain”:
“If life gets hard and you feel/There’s nothing left to gain/Pick your head up … smile … feel no pain.”
The day after Gutter and Spose played, Stanley was on Facebook, thanking everyone for showing up.
“Yesterday was epic,” he wrote. “I’ve got to be the luckiest cripple on the planet!!! Thank you.”
As for any specific prognosis or timeline connected to the worsening of Stanley’s condition, family members try to share his optimism.
“He could outlive us all,” Isacc said.
Nick Stanley said he doesn’t work all that hard to be positive. He is not a Pollyanna. He knows his condition, barring a miracle, will not improve.
He knows he won’t play golf again or down a beer with friends.
“I just don’t feel … negative,” he said.
He knows he’ll listen to music today and tomorrow. And that every couple of weeks live music will fill his home and give him a brief but powerful respite from the ravages of his wrecked body.
And for a time, he’ll feel no pain.
Ray Routhier can be contacted at 791-6454 or at: