After he had lost the ability to eat, breathe or walk on his own, Nick Stanley still found ways to share his love of life, to show people how precious it is.

Ryan Peters, known as the rapper Spose, first learned this during a visit to Stanley’s home in Farmington. Stanley had already been bedridden for several years, due to a condition called adult onset spinal muscular atrophy. He couldn’t move and could barely speak. Still, the two shared a passion for music, and during the visit, Peters found himself amazed at how easily Stanley could smile and laugh.

After being bedridden for about a decade, Stanley died Wednesday at his Farmington home, said Jeff Sweetser, his stepfather. He was 43.

“He was cracking jokes and making me laugh. I remember thinking, ‘He hasn’t moved in years, what do I have to complain about?'” Peters said. “What he went through was brutal. Seeing what he suffered and how he handled it really helped me to appreciate what I have.”

Despite being immobile and dependent on around-the-clock care, Stanley had become well known in the Maine music scene over the past 10 years and an inspiration to everyone who knew him. Maine performers who knew of Stanley’s passion for music often performed at his home, including Spose and Rustic Overtones.

Over the years Stanley’s small, modular home became known as Stanley Station, and Stanley would post notices of upcoming shows at his bedside on his Facebook page and invite all his friends to come over. Several of the musicians were from the Farmington area, but others came from Greater Portland and Massachusetts. For a time, there was some kind of live music going on at his house at least twice a month.

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“What was so inspiring about him was that, against all odds, he enjoyed what he could get out of life,” said Dave Gutter, lead singer of Rustic Overtones. “The energy he had for life, art and music was just incredible.”

Ryan Peters, also known as the rapper Spose, talks with Nick Stanley at his home in 2014. Gregory Rec/Staff Photographer

Gutter first met Stanley about nine years ago when friends of Stanley’s managed to take him to a Rustic Overtones concert – in a hospital bed – at Titcomb Mountain ski area in Farmington. Gutter said he was impressed with how badly Stanley wanted to see live music, despite his condition. So after that, Gutter began coming to perform at Stanley’s home, sometimes on his own, with Rustic Overtones or with the band Armies. He and other musicians once played a show for Stanley while he was staying at Maine Medical Center in Portland.

But even being bedridden didn’t stop Stanley from also venturing outside of Farmington to see shows, with help from his friends. About seven years ago, he saw the rapper Matisyahu at Portland’s State Theatre, where he got to meet the performer.

Gutter sought Stanley’s help on a song he wrote a few years ago called “Bedside Manor,” about a patient who falls in love with his nurse. Because Stanley had been a patient a long time – and had lots of nurses – Gutter ran possible lyrics by Stanley, via text, and the two shared ideas.

“Playing a show for him was really therapeutic for us, because you could tell it clearly made his day. And you knew he had a lot of bad days,” Gutter said.

In 2014, Gutter and Spose played a show at Stanley’s home, with friends and family on hand. Stanley, who could still talk a little then, told the Press Herald that even though most of his muscles had failed he could still feel the music inside of him.

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“My body … wants … to move,” he said. “It’s so cool.”

Stanley often communicated with friends by using a letter board – a board with the letters of the alphabet, his stepfather said. He’d look at a letter and a caregiver or nurse would ask if that was the letter he wanted, then he’d wink, and that letter would get typed. So if you got an email or text from Stanley, you knew it was not something to be taken lightly. When he could still speak somewhat, he dictated posts and texts to caregivers.

Dave Gutter performs for Nick Stanley at his home in Farmington in 2014. Gregory Rec/Staff Photographer

Friends were buoyed by Stanley’s optimism in the face of suffering. He poked fun by listing his job title on his Facebook page as “Chief executive officer at Crippling for Dummies.”

“He always talked about how you have to maximize your stay on Earth and how you have to love to the fullest,” said Melissa Burnham, a friend since childhood.

The pandemic had been especially hard on Stanley, as musicians stopped coming to play by his bedside, Sweetser said. His condition worsened, too. In recent months, Stanley had lost all ability to speak and had little ability to make facial expressions, his stepfather said.

Still, he found solace in watching sports on TV. One of his last Facebook posts was on Oct. 7, when the Boston Red Sox were in the baseball playoffs: “Let’s go Red Sox.” He was recently watching the NCAA basketball tournament and looking forward to the NBA playoffs.

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Sweetser said Thursday that funeral arrangements had not yet been made. He said the family knows that many people were touched by Stanley, and there will likely be a celebration of his life at some point.

Stanley had told family he wanted to be buried with his beloved dog, Sadie, who could often be found lying on Stanley’s bed with him. Sadie died a few years ago, but her ashes were saved so she could be with Stanley again, Sweetser said.

Besides hosting musicians at his home, Stanley created music too, despite not being able to move or eat or breathe on his own. He wrote songs with his friend, Maine guitarist Jason McClure, that dealt with his feelings and condition. “Can You Hear My Eyes?” was about the expressive and emotional power of the eyes, when the ability to speak or touch are gone. “Feel No Pain” has lyrics that deal even more directly with what Stanley was going through:

“You say I’m crippled but I’m not crazy/You say you’re able but I know you’re lazy/Being crippled is all in your mind/Keep a strong mind and you’ll be just fine/My mind is still clear, it’s not hazy.”

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