044 Matt Hay| soundtrack of silence

MATT’S BIO

Matt’s story is remarkable for many reasons including his perseverance, resilience, grit, determination and disposition in the face of devastating circumstances. After learning he was going deaf in college, Matt decided to make a mental log of the songs that over the years connected him to the memories and moments that he most cherished. The start of his hearing loss happened in synchrony with him falling in love with his now wife – that combination resulted in him publishing “Soundtrack of Silence”, a vivid and moving memoir that documents the ups and downs, joys and hardships from his journey with the disruptive effects of NF-2. NF2-related schwannomatosis, previously known as neurofibromatosis (2) is a rare genetic disorder that is characterized by mostly noncancerous (benign) tumors of the nerves that transmit balance and sound impulses from the inner ears to the brain (bilateral acoustic neuromas/vestibular schwannomas).

We talk about the happiness that music brings him and the irony of the fact that music is more important to him now that he can’t hear it unaided, as he puts it: “my ears don’t do much other than prevent my sunglasses from falling”. We also discuss what it’s like to start a career, fall in love and build a life while battling a rare disease. The story is very compelling: Channing Tatum and Paramount Pictures optioned the motion picture rights to Matt’s life story as told by Soundtrack of Silence.

Starting while a sophomore in college, he sails through the first few years in denial, but as his hearing gets worse and his hearing aids get bigger, Matt realizes he wants to capture the sounds of his life: his girlfriend’s (now wife’s) voice, the click of her heels, and the songs of their youth. He starts listening to music with intention and intense appreciation. Behind each song, there is a coming-of-age story - topics like freedom, tragedy, beating the odds, try then try again, and of course falling in love. The story of overcoming the physical, mental and emotional challenges and his ultimately positive outlook on life is inspiring.

When Matt isn’t adding tracks to his life’s playlist, he passionately supports the hearing loss community as a member of the Columbia University Genetic Counseling Advisory Board and served as a consultant to the St. Joseph Institute for the Deaf. He’s served as a congressional lobbyist for neurofibromatosis (NF) research funding, the genetic disorder that caused his hearing loss, and has raised money for NF research by doing endurance events, including an Ironman Triathlon and most recently, the Boston Marathon. Matt currently serves the rare disease community as the US Director of Advocacy for a global biopharmaceutical company and lives in Indiana, with his wife and three children.

NOTE| This episode is longer than usual → ‘Top Of The Game (in) Overtime’ shows are released occasionally

MATT RELATED LINKS

McMillan Author Profile

Wasserman Speaker Profile

NPR Interview - All Things Considered

Soundtrack of Silence on Amazon

Children’s Tumor Foundation in his words

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