May 23, 2022

A New Vision Through Music

Beacon Stories

Mark Erelli has been a professional musician for the past twenty-three years. He’s always used songwriting to express himself. Since being diagnosed with retinitis pigmentosa, he’s needed music more than ever.

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47-year-old singer, songwriter, and producer Mark Erelli lives in the Boston suburb Melrose, Massachusetts, with his wife, Polly, and two sons.

Mark Erelli

Mark Erelli sitting and holding his guitar.

Mark first became interested in music in junior high school and continued through college, where he started writing his own songs and taught himself how to play guitar while majoring in biology. Mark pursued both science and music for a while, but after earning his master’s degree in evolutionary biology, he knew he’d always regret not trying to follow his musical dreams. Twenty-three years later, Mark’s now a full-time folk musician that plays guitar, mandolin, drums, and harmonica.

One night in the summer of 2020, Mark was performing on stage when he looked down in the middle of a song and couldn’t see where his fingers were on the neck of his guitar. A few weeks later, Mark was coming home from visiting a friend, and as he drove through a short tunnel realized that he couldn’t see the other end—everything just went black. After both of these unsettling and terrifying experiences, Mark went to his optometrist in September 2020, thinking he probably just needed glasses. His optometrist told Mark he did need glasses, but his retinal imaging was also troubling. After a full day of testing with a retina specialist at Mass Eye and Ear in mid-October of 2020, he was diagnosed with retinitis pigmentosa (RP). Mark also received genetic testing, and during his genetic counseling, he recalls feeling thrilled.

“I was excited to speak with a genetic counselor and learn about my particular mutation,” says Mark. “I think she was a little shocked because most people don’t react so positively, but many gene therapies are being developed, and knowing my exact genetic issue makes it easier to find a solution. I’m hopeful that now I might one day be able to participate in a future treatment.”

Being diagnosed with RP during the height of COVID felt isolating for Mark. Without easy access to his usual community of friends and family, it was a unique time to get a life-changing diagnosis. But because he also wasn’t working and traveling, with live performances being halted and slowed down from the pandemic, Mark was better able to process and cope with his diagnosis with fewer distractions.

After taking some time for himself, Mark felt there was no sense in hiding his diagnosis from his fans, so he wrote an email newsletter sharing his news. He was shocked by how many people responded with their similar stories and journeys with disabilities.

“Being honest with my audience has opened me up to this wellspring of support and now seems to have given others the courage to open up too,” says Mark. “I’m newly diagnosed and still getting used to referring to myself as having a disability. Hearing what other people are struggling with made me feel a lot less alone. You don’t really know what others are grappling with day-to-day, so I always have to remind myself to be patient with others if I want them to be patient with me.”

Mark Erelli outside

Mark Erelli standing outside.

One of Mark’s best-known songs is “By Degrees,” which was written before his diagnosis and begins with the lyrics, “When I take a look around me, sometimes I wish I was blind.” Mark says that hits him so differently now, and he suspects his audience feels it too.

Another way Mark found a sense of community and hope was by connecting with the Foundation Fighting Blindness. Mark first found out about the Foundation through the My Retina Track Registry after his genetic testing. He then learned about the Foundation’s livestream music series, Music to Our Eyes, featuring Grace Potter, having no idea that she too had vision loss.

“As a songwriter, you need your powers of observation, compassion, and empathy to write songs that connect with people,” says Mark. “This whole experience has deepened and strengthened my sense of compassion for others. And now I don’t take anything for granted.”

Mark has a new album coming out in early 2023 called Lay Your Darkness Down, which was written largely right before and following his diagnosis with RP. His 14th solo album, this project is unique since it was all recorded in his home studio. The word “blind” or “blindness” doesn’t appear anywhere on the album, but his experience with RP has infused the entire album. A song called “Up Against the Night” was actually written in 2018, but once diagnosed, the song’s meaning changed and turned out to be a perfect fit for what he’s been going through.

“This album started as a way to distract myself from my diagnosis,” says Mark. “But it also was a way to prove to myself that even though I was losing agency in some areas of my life, I still have enough creative agency that I can record and make music on my own.”

In October 2022, the Foundation’s Music to Our Eyes livestream will feature Mark Erelli. To listen to Mark’s music, visit: www.markerelli.com