Despite battling ALS, composer and guitarist Andy Bullington refuses to let the music stop.
When it comes to musicians on Nantucket, Andy Bullington is a treasure. A graduate of the Berklee College of Music in Boston, Bullington has played guitar in a number of island bands from Earth Got the Blues, to The Glazer/Bullington Duo, to the jazz trio 02564, to The Shingles, which also featured his wife Cary Hazlegrove on vocals. Bullington has a brilliant musical mind that he’s wielded as a composer scoring theatrical performances and movies on the island. However, three years ago, the melody of Bullington’s life was harshly interrupted by a devastating diagnosis.
Bullington’s diagnosis with ALS hasn’t meant what he thought it would. It certainly hasn’t been easy, but it also hasn’t been as hard as he expected— at least not yet. These days, some trouble breathing is what bothers him the most. There’s a stair lift just inside the front entrance of the Sconset home he shares with his wife, iconic Nantucket photographer Cary Hazlegrove, and their daughter, Virginia, but he hasn’t had to use it yet. His legs are still strong.
Bullington began to notice some weakness in the fingers of his right hand in the spring of 2017, and by October of the following year, he knew that what doctors originally suspected had been some version of carpel tunnel syndrome brought on by a lifetime of playing the guitar, was in fact ALS, something that meant his days of performing live were behind him.
“It’s not how I imagined it being,” he said. “Your focus changes. Before a diagnosis like this you think to yourself no matter your age, ‘I’ve probably got 85 years or so’ and you have this long-term view, but after you get the diagnosis, you think, ‘Today is great. Let’s go with that.’ It flips how you’ve always thought about the future.”
A native of Roanoke, Virginia, Bullington met his wife as a child growing up together in the small city set in the heart of the Blue Ridge Mountains. The two unexpectedly reconnected at his father’s funeral in 1988, many years after going their separate ways, and began a relationship, splitting their time between Austin, Texas, where he’d resettled, and Hazlegrove’s adopted home of Nantucket. More than a decade later, they made a full-time transition to the island to raise their daughter.
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While performing in a number of island bands, Bullington began collaborating with friend and actor/filmmaker John Shea in 2014. The two, already friends and neighbors, started working together after Shea performed in the Theatre Workshop of Nantucket’s production of Time Stands Still, which Bullington scored for director Lynne Bolton. “I was playing a war photographer coming back from Iraq, and to be honest I didn’t want to do the performance,” said Shea. “But as I was about to go on, I hear this incredible music coming from the stage and it got inside me like a little fire. It ignited me and sustained me through the entire performance. The funny part is I’d already known him for twenty years, but didn’t know he wrote music!”
Bullington and Shea then collaborated on the TWN production of Dracula, which Shea directed, as well as Shea’s Nantucket-centric feature film, Grey Lady, starring Eric Dane and Natalie Zea. “We’ve always had perfect communication when it comes to music,” said Shea, who is also a trained musician. “Grey Lady was the first feature-length film he’d scored and I saw he really is a rock ‘n’ roll gunslinger, a phenomenally multifaceted and talented composer and musician.”
Since Bullington’s diagnosis, composing has sustained his passion for music. Armed with a basement studio filled with screens, cables, keyboards and digital sampling and recording equipment, he has built a digitized treasure trove of recorded sounds, loops, tracks and melodies constantly being arranged and rearranged to create his music. In addition to his work with Shea, Bullington has scored dozens of short films around the world with his friend Gene Elders, the longtime fiddle and mandolin player for country singer George Strait and a former member of Lyle Lovett’s Large Band. “Since I can’t play anymore and everything is done on synthesizers, I send the tracks to Gene when I’m done and he records them all on organic instrumentation,” Bullington described. The daily ritual of working and creating has kept him focused on the positives that surround him, namely his family. “I guess my perspective on life hasn’t changed as much as you might think,” he said. “I just want my daughter to be happy and have a good life.”
While ALS is still considered an incurable disease, Bullington said he’s been told by his doctors that there have been significant advances in the study for a cure since Pete Frates’ “Ice Bucket Challenge” took over social media in 2014, raising more than $100 million for research into the previously low-profile disease. He receives ten treatments a month at Nantucket Cottage Hospital to slow the illness, which is a progressive nervous system disease that affects nerve cells in the brain and spinal cord, causing loss of muscle control. In the midst of the COVID-19 pandemic, he and his caregivers take extra precautions to protect him from the virus, but he says they’ve established safe procedures and there’s a rhythm to it at this point.
All of this is compounded by the fact that Hazlegrove was diagnosed with multiple sclerosis several years before Bullington’s own diagnosis. It’s a daunting combination of circumstances by any standard, but Bullington said a bright spot in it all has been the time they’ve been able to spend with their daughter Virginia after her recent graduation from the University of Southern California with a degree in narrative studies.
“I’m just hanging on for dear life,” said Bullington, who is not interested in the pseudo-reassuring platitudes about “battling bravely” that loved ones so often ascribe to those who are suffering. He takes comfort and inspiration from studying the life and music of Ludwig van Beethoven, an interest driven by personal curiosity as well as scholarly study. He identifies with the challenges the composer faced, going deaf while he continued his innovative work at a feverish pace.
Shea, who has already lost one dear friend to this malignant condition commonly referred to as Lou Gehrig’s disease, shares Bullington’s love for and interest in Beethoven, recognizing that even in times of suffering there are opportunities to create something new. “Andy has said to me, ‘I don’t know how long I have, but all I can tell you is that I want to keep working on the music.’” And so they do. Shea has been writing a new feature film over the past couple of years, and Andy has been right there with him developing the music that one day, maybe years from now, will be heard in theaters and homes across the country. “He’s so phenomenally talented and humble, and he is leaving a legacy that will reverberate and inspire others,” Shea said. “It’s maybe the greatest gift that artists have to offer: the ability to turn the negative and the painful into something beautiful, something greater.”
