This devastatingly beautiful story of Bernie Dalton hiring singer/songwriter Essence Goldman to refine his voice, only to lose it two months after to bulbar-onset ALS. Now, only able to communicate with an Eye Gaze Device, their full-length album is completed, an NPR Tiny Desk Entry.
We are a few weeks from the month of May which has been deemed ALS Awareness Month by ALSA.org, who, along with other ALS support and research organizations, spearheaded the ultra viral Ice Bucket Challenge back in 2014 revitalizing further discussion and exploration around the malicious disease on a worldwide level. Here is another, more specific, story about ALS awareness…
Two years ago, in San Francisco, Bernie Dalton hired Essence Goldman as his voice coach. Bernie, an avid surfer and a devoted single father to a beautiful 14 year old daughter named Nicole, decided to, at 46 years old, finally pursue his enduring dream of making an album of his own original songs. Lessons were progressing well, when, after 2 months, Bernie’s voice mysteriously disappeared. Ultimately, he would be diagnosed with bulbar-onset ALS (Lou Gehrig’s Disease). As is typical of the disease, his condition deteriorated rapidly leaving him without the ability to move any part of his body, except eyes. Losing his voice was the first symptom.
Despite living in the shadow of his diagnosis, Bernie and Essence fostered a profound friendship. Essence wanted to help raise money so that Bernie could take Nicole on a trip while he still could, but Bernie insisted on making his record. He wanted to leave a musical legacy for his daughter’s future children that he would likely not live long enough to meet.Through his lyrics, he wanted his future grandchildren to know who he is, his views of the world and ALS, and to convey his advice for living. Because he could no longer sing or speak, Bernie asked Essence to be his voice. Essence took the initiative to launch a Go Fund Me campaign, resulting in the outpour of love and support from family and friends from over 10 countries and 48 states, making it possible to record an album of Bernie’s lyrics brought to life.
Triumphantly, the album, released under the artist moniker, Bernie & The Believers featuring Essence and titled, Connection, at an event entitled “A Celebration of the Triumph of Music Over ALS (Lou Gehrig’s Disease)” at Slim’s in San Francisco, host to other musical artists such as Radiohead, Kings of Leon and Prince.
Pulled together by Goldman, the album is as much a testimony to she and Dalton’s perseverance as it is a brilliant collection of new and powerful songs. Essence is its voice, producer, and co-writer and acclaimed multi-instrumentalists, co-writers, and co-producers Roger Rocha, Daniel Berkman and David Simon-Baker comprise the core team of collaborators behind the music. Bernie’s daughter, Nicole Dalton sings harmonies on the album, as well.
In the early recording sessions not long ago in 2017, Bernie was able to walk and he even drove himself to the studio in his pickup truck. He was able to give feedback using hand signals and write notes on a dry erase board to indicate his approval or disapproval of what the musicians were playing. Two thumbs up from Bernie who can’t speak means a lot. But due to the aggressiveness of the disease, in six short months Bernie lost the ability to walk, move his arms, swallow, and travel, and therefore the final recordings had to be shared in a nursing home. In a recent interview, Bernie expressed through his eye gaze device that making this album has allowed Bernie him to focus on music and creativity instead of his devastating disease. He stated it “makes him forget ALS.”
So moved by the story, the producers at NPR ALL SONGS CONSIDERED felt compelled to share Bernie’s Song and the heart wrenching video Bernie & The Believers performed for its Tiny Desk contest entry, “Unusual Boy.” Here is the YouTube link: http://bit.ly/BernieDalton.
Says Essence of the track and the video, “Bernie had a wish to make a video for “Unusual Boy”– a song about his past relationships and everything he learned to be able to become Mr. Right. He mailed me the handwritten lyrics for it early last summer, shortly after he was diagnosed with ALS. At first, I was overcome with emotion and didn’t know what to do with them. Because he could no longer speak or sing or play guitar, he asked me to put music and melody to his words. Roger Rocha joined the collaboration and composed the guitar part and between the three of us the song fell out of the air.”
The video features Goldman and the band performing at Bernie’s bedside at his nursing home. It is directed by Ari Gold with live sound recorded by Simon-Baker. Essence sings to Bernie, while Rocha accompanies on guitar, Berkman plays cello and Adrienne Biggs plays violin. Says Bob Boilen of NPR, “It is, at once, devastating and beautiful.”
Go Fund Me was so inspired and moved by Bernie’s story that they made a documentary film about him, Essence, and the band. It is a story of courage, creativity, and the triumph of music in spite of great adversity. Bernie’s story has also been featured prominently on FOX, CBS, and in the San Francisco Chronicle, who are currently producing a documentary film on the story behind the music.
A campaign for Bernie’s care was launched and the outpour of community support and donations has been tremendous. Unfortunately, not enough funds have been raised to actually get Bernie out of a nursing facility, but the support has enabled his family to be able to provide a higher of level of care, making Bernie more comfortable and the family more secure that Bernie’s needs are being met. To visit the GoFundMe site and support Bernie in this way, please visit Gofundme.com/sendberniehome
For more information about ALS (Lou Gehrig’s Disease), please contact www.alsa.org/ and the ALS Association Golden West at http://bit.ly/ALSAssoGoldenWest, which serves the highest number of ALS patients in America and is solely operated by donations. The ALS Association receives no federal funding and is entirely supported by donations, mostly from families and friends who are touched by this horrible disease.