Music Memory Deaf author shares story of perseverance through self-created ‘soundtrack’

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The cold and snow didn’t keep a crowd from gathering at Basille Westfield Playhouse Jan. 13 for a book signing with Westfield resident and author Matt Hay presented by Westfield bookstore, Turn the Page.

Published by St. Martin’s Press, Hay’s book “Soundtrack of Silence: Love, Loss and a Playlist for Life” was released Jan. 9, and it shot to the No. 1 spot for Amazon’s biographies of people with disabilities.

“We live in a community of overachievers,” Mayor Scott Willis said in introducing his friend Hay at the event. “But I would argue that Matt stands in the front of the line.”

As a child growing up in Evansville, Hay had no idea he didn’t hear the way everyone else did because he had developed ways to compensate for his hearing deficit.

By his sophomore year at Indiana University, Hay finally went to an audiologist. After further testing, doctors diagnosed him with neurofibromatosis Type 2, a rare genetic condition that causes tumors to grow along nerve sheaths.

“NF can grow on any nerve in my body,” Hay said. “For some reason, they love the ears.”

In 2002, a tumor in his neck required surgery to remove. The surgery left Hay unable to walk. He moved home to Evansville from where he was working in Chicago to have the help that he needed. His girlfriend Nora could have moved on with her life. Instead, she chose to move in with the Hay family.

While Hay spent a year regaining the ability to walk, his hearing was failing rapidly.

Faced with a future of silence, Hay asked himself, “What songs do I want stuck in my head for the rest of my life?”

He made a mental playlist of the songs that connected him to moments he never wanted to forget.

“I set out to create a soundtrack of my life,” Hay wrote.

Hay listened to Geroge Harrison sing “Here Comes the Sun” every morning — until he couldn’t hear it anymore.

Hay, 47, has had 20 surgeries, including an experimental auditory brain implant, and 18 years of auditory rehabilitation therapy. Listening to songs for years when he could only hear them in his mind finally paid off when he recognized a song one day when getting into the car with Nora.

His brain was relearning how to hear.

“I am not the most intelligent or the most athletic,” Hay said. “But I will go toe-to-toe with you in my level of irrational persistence.”

For Hay, that persistence didn’t simply mean learning to walk and learning to hear again. He has run multiple marathons, including the Boston Marathon and the Ironman Triathlon, while raising money for NF.

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Kendall Reeves, front, also has neurofibromatosis and came with her parents, Stephanie and Matt, to show their support for Matt Hay and his new book.

Hay first publicly shared his story on NPR in 2017. Actor Channing Tatum heard it and immediately recognized Hay’s story had movie potential. Hay has since sold the option for a movie about his life to a studio. The producers suggested having someone write a book. Hay took that challenge on himself.

“This is the book that 25-year-old me needed to read,” Hay said. “When I look back at the things I needed, they were a lot more universal than I realized. If I can share what took me a decade to learn with someone in a day instead of a decade, that’s a reason to write a book.”

The first 19 publishers who read the manuscript passed on it or didn’t reply. Hay took any advice he could get and kept refining. His editor at St. Martin’s Press said that he made the hard parts of his life sound too easy and asked him to “sit and think about the hard stuff.”

“That was probably the hardest part,” Hay said. “I promise you that this is as real and honest as I can be.”

When it came time to plan an author tour, his publisher offered New York City. But Hay only wanted to hold events in places that mean something to him, so he started with Turn the Page in Westfield.

“We are blown away by this book and the writing,” Turn the Page owner Jamie Degler said. “Matt is brilliantly able to explain what it is like to lose your hearing. And the journey that he had to go on will keep you turning the pages. I think this book is going to be a lot bigger than any of us realize.”

Besides being a first-time author, Hay is a U.S. director of advocacy for a biopharmaceutical company that creates treatments for rare diseases. Responsible for patient advocacy, he makes sure voices like his are heard. He also volunteers with the Children’s Tumor Foundation, which focuses on research to end NF.

“I spent a long time trying to figure out how to live and have a fulfilling life in spite of my circumstances,” Hay said. “It wasn’t until the last five years that I am leading a fulfilling life not in spite of but because of those hardships. I’m only 47, so I’m not really thinking about my legacy, but I hope it is that Matt dealt with some lousy stuff, and he helped make that lousy stuff easier for some other people.”

“Soundtrack of SIlence” is available at Turn the Page at 149 Walnut St. or visit HearMattHay.com.

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Westfield resident Matt Hay signs his book “Soundtrack of Silence” at a launch event Jan. 13.

Songs from the Soundtrack

Here is a short list of some of the songs that made their way into Hay’s musical memory.

  • “7” by Prince, 1992
  • “Good Vibrations” by The Beach Boys, 1966
  • “Divided Sky” by Pfish, 1987
  • “Beautiful Way” by Beck, 1999
  • “Every Little Thing is Gonna Be Alright” by Bob Marley, 1977
  • “All I Want is You” by U2, 1988
  • “Here Comes the Sun” by The Beatles, 1969
  • “That Was a Crazy Game of Poker” by O.A.R., 1997

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