April 14, 2014 at 3:09 PM ET
Nick Stanley may be bedridden and hooked up to a breathing machine, but he still knows how to rock out.
The 35-year-old man from Farmington, Maine, has been confined to a bed for two years, due to a medical condition stemming from spinal cord problems and nerve damage. But, thanks to a regular rotation of musicians who perform concerts at his bedside, he’s still able to enjoy one of his favorite things — live music.
“When you only get out of your house a couple times a year, life gets stagnant,” Stanley told TODAY.com. “So when musicians come to my house, it feels like I’m getting out and interacting with friends.”
Stanley was born with tethered spinal cord syndrome, a neurological disorder the National Institutes of Health describes as being caused when tissue attachments limit the movement of the spinal cord within the spinal column. He didn't have health issues until his late teens, but as he got older, his health began to deteriorate, and he progressively lost mobility. He began using crutches in his early 20s, and by 2003, he was in a wheelchair.
In 2007, he was diagnosed with adult-onset spinal muscular atrophy, an inherited condition that causes nerve damage and muscle weakness. And two years ago, Stanley’s condition reached the point where he became bedridden.
“Once we’ve had nerve damage, we might make a recovery in the short term but in the long term, what we have not recovered, we almost never will,” Dr. Alexander Zouros, a neurosurgeon at Loma Linda University Medical Center (who has not treated Stanley), told TODAY.com.
These days, Stanley cannot walk, eat or breathe on his own, and uses a ventilator. Because his speech is labored, he chatted with TODAY.com over Facebook by dictating responses to a caretaker, which is also the way he keeps in touch with his roughly 1,000 friends on the social network.
And though he knows his condition is not curable and he's experienced it worsen over the years, he’s still found ways to continue doing the things he loves. While still in his wheelchair, he returned to the golf course where he played and worked as a teenager to offer pointers, in 2005 he went on a 2,600-mile trip through Canada, and from 2008 until 2011, he got out into nature while training dogs from a local shelter.
Today, thanks to his friends and family, he also regularly gets to enjoy concerts by his bedside.
It all began a little over a year ago, when Stanley wrote a post online that caught a friend's attention. “I saw on Facebook that he missed concerts and sent him a text that day," longtime friend Jason McClure, a singer and songwriter, told TODAY.com.
The pair have known each other for 15 years, but lost touch when McClure moved away. They reconnected after that Facebook posting, and McClure now practices his music at Stanley's home every few weeks. “He just makes it so easy to be there,"McClure said. "I was going to play music either way.”
Two popular Maine musicians have also brought their music into Stanley's home, playing concerts at the house now known as “Stanley Station." The Rustic Overtones have packed a seven-piece band into Stanley’s living room for over a year, ever since lead singer Dave Gutter met Stanley at a concert.
“His friends and family pulled this mobile hospital bed right up to the front of the stage,” Gutter told TODAY.com. “They seemed to be all about carrying on as they had always had when he was moving around and feeling great.”
Gutter says their bedside concerts are as much for Stanley as they are for the band, which gets re-energized by playing for their hardcore fan. “It’s our 20-year anniversary, and to put some wind in our sails and keep our heads up and keep us believing in the power of music is a beautiful thing,” he said.
Maine-based rapper Spose, who also performs at Stanley's home, agrees that the concerts benefit both parties. More than a year ago, a mutual friend suggested Spose meet Stanley, a big fan of his, so the rapper (whose real name is Ryan Peters) stopped by on the way to a show at nearby Sugarloaf ski resort. From what he could gather, he thought he would be performing in a quiet clinical room.
But Stanley had told everyone Spose was coming, and when the rapper arrived after trekking through the woods, he was surprised to find a busy room with a “convivial awesome vibe.” When he started rapping, he was also shocked to find a “hype man” in Stanley, who was finishing the lyrics from his bed.
“He has more friends than anybody I know who can walk to the bar,” Spose told TODAY.com.
Even when there isn't a live concert in his home, music is part of Stanley’s daily routine. His Spotify playlist, titled “Are You Crippled?”, features a mix of his favorite songs, including Blues Traveler, the Grateful Dead, and Bob Marley.
Distractions like this help Stanley stay positive as he deals with the daily suctioning of his lungs, straightening of his catheter, feedings through a tube, and bandages being changed on his bedsores.
“It’s nice to listen to my music while all these things are happening to me,” he said. “It really helps separate my mind from my body.”
Stanley’s strong spirit astonishes his family, friends, and the musicians who put on free private shows for him. He's “as excited as someone pumping their fist in the front row,” Gutter said.
And Stanley keeps on dreaming of bringing more acts to Stanley Station. His brother, Isacc, moved in last April to help care for him, and they want to tear down trees in the backyard to make way for a concert stage for a summer music festival, which is in the works for the coming months.
In the meantime, the bedside concerts have meant the world to Stanley.
“I can’t believe that I’m lucky enough for music to come to me,” he said.