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'He Wants To Be Remembered': Tiny Desk Contestant Finds His Voice While Fighting ALS

Apr 19, 2018
Originally published on April 20, 2018 11:28 pm

A couple of years ago, Bernie Dalton was a strong, physically fit, 40-something-year-old surfer. Every morning, he would get up at 4 A.M. to watch the sunrise in Santa Cruz, Calif. Bernie wasn't a musician at the time, but he was passionate about music. His lifelong dream was to record an album.

Bernie had just started voice lessons with his teacher, Essence Goldman, when he received the diagnosis that he had bulbar-onset ALS, an aggressive form of Lou Gehrig's disease. Doctors told him he had maybe a few years to live, and that he would lose most of his bodily functions well before that.

"It was time to get my butt in gear," he says through an Eye Gaze Device at the beginning of his Tiny Desk Contest entry video, complete with an ultra-tiny desk and a copy of Stephen Hawking's A Brief History of Time on it. "I could no longer speak or sing, so I asked my singing teacher, Essence, to become my voice."

Bernie formed the band Bernie And The Believers with friends. Together, along with Essence, they recorded an album called Connection. The songs were written by Bernie and sung by Essence and the band. Essence, who appears in the Tiny Desk entry video, was working on her own album when Bernie asked her to sing on his.

"I wanted to help him, but you know, I didn't quite know how this would manifest," Essence says. She said yes because, as she explains, Bernie's music and his story have a rare urgency. "What could be more important than this man's mission to convey his values and his advice for living for future generations when he doesn't have much time left?"

They sat down in Essence's living room one evening and within a few minutes, they had a song. "It just poured right out," she says. The track, "Simon's Hero," is what Essence calls a kind of sermon due to its lack of pop-mold rhyme. She says she had to step outside of herself to inhabit the words meant for Bernie's grandchildren.

"The song talks about taking a step back and resonating with what really matters: each moment and the people who you care about," Essence explains. "That faster is not always better. More is not the answer."

Bernie's lyrics reach a hopeful conclusion: "Know every situation / and all probable outcomes / hold love at the center of it all," he writes.

"Bernie is the eternal optimist," Essence laughs. "I have never met somebody who has more hope than Bernie Dalton. He is laying in a bed. He can only move his eyes. And he's planning his next move."

For his next immediate move, Bernie wants to move from the nursing home he's in now, where he doesn't receive the proper ALS-specific care, to his home. And he wants to be remembered.

"He wants to be remembered as a creative person and an artist, not as a sick guy," Essence says, "He just wants people to hear the music."

Copyright 2018 NPR. To see more, visit http://www.npr.org/.

AILSA CHANG, HOST:

NPR Music's Tiny Desk Contest is closed, and our music team is reviewing all the videos submitted. There was one entry from a band called Bernie and the Believers that caught our eye.

BERNIE DALTON: My name is Bernie Dalton. My lifelong dream was to record an album. A year ago, I was diagnosed with an aggressive form of ALS. It was time to get my butt in gear.

CHANG: So he did, forming Bernie and the Believers with friends. His singing teacher, Essence Goldman, became his voice.

(SOUNDBITE OF SONG, "UNUSUAL BOY")

ESSENCE GOLDMAN: (Singing) Always a boy loves me when I start to open. Always a boy leaves me when it's not enough.

CHANG: Together they recorded an album called "Connection" with songs written by Bernie Dalton. I spoke with Essence Goldman, and she told me that when Bernie asked her to be his voice, she was working on her own album.

GOLDMAN: I wanted to help him, but, you know, I didn't quite know how this would manifest.

CHANG: Yeah.

GOLDMAN: And, you know, he couldn't speak, so he would write on a legal pad. And he just said, I want you to be my voice. And I was in the middle of making an album myself 'cause I've been an artist for years. And, you know, I was deep in my own creative process, digging deep, trying to find my own voice.

CHANG: What made you say yes?

GOLDMAN: Well, I mean, Bernie is very charming.

(LAUGHTER)

GOLDMAN: And, I mean, he had something important to say that deserved to be said. And in some ways, it had more urgency. What could be more important than this man's mission to convey his values and his advice for living for future generations when he doesn't have much time left? And we sat down in my living room one evening, and within a few minutes, we had a song. I mean, it just poured right out. That was the first one. That was "Simon's Hero."

(SOUNDBITE OF SONG, "SIMON'S HERO")

GOLDMAN: (Singing) You know that I loathe those who care about cool. You need to know I disdain trends and those who thrive on them.

CHANG: What did it feel like to be singing his words, to be singing words meant for his grandchildren?

GOLDMAN: It was an out-of-body experience honestly. It just - it was an important thing that needed to be said, and I had to step outside of myself. And the lyrics didn't fit that typical pop song format. There was no rhyme. Basically it was - it became somewhat of a sermon.

CHANG: And what was this sermon about?

GOLDMAN: "Simon's Hero" is about disillusionment with our society and how the world is so fast-paced. The song talks about taking a step back and resonating with what really matters, which is each moment and the people who you care about, that faster is not always better. More is not the answer.

(SOUNDBITE OF SONG, "SIMON'S HERO")

GOLDMAN: (Singing) And know in every situation, all probable outcomes hold love at the center of it all.

CHANG: Bernie sounds kind of like a jaded guy but who also has this incredibly hopeful outlook in life. Like, leaving something behind for your children and dedicating the last several months of your life to creating music - there's something very hopeful about that, too.

GOLDMAN: Bernie is the eternal optimist. I have never met somebody who has more hope than Bernie Dalton. He is laying in a bed. He can only move his eyes, and he's planning his next move.

CHANG: And what does he most want now?

GOLDMAN: He wants to be home. He's in a nursing home. He's not receiving the ALS-specific care that he needs. And he wants to be remembered as a creative person and an artist, not as a sick guy. He just wants people to hear the music.

(SOUNDBITE OF SONG, "UNUSUAL BOY")

GOLDMAN: (Singing) And I know an unusual boy. And I wish I could see him tonight.

CHANG: Well, it's a really lovely album. Thank you very much for speaking with us today, Essence.

GOLDMAN: Thank you so much.

CHANG: Essence Goldman is the voice you can hear on Bernie Dalton's album "Connection." Dalton wrote the words and music, and Goldman was his voice teacher.

(SOUNDBITE OF SONG, "UNUSUAL BOY")

GOLDMAN: (Singing) I feel so much more. If only the unusual boy... Transcript provided by NPR, Copyright NPR.