ONCE UPON A GENE - EPISODE 216

Soundtrack of Silence - Love, Loss, and a Playlist for Life with Neurofibromatosis Type 2 (NF2) Patient Advocate - Matt Hay

Matt Hay has a disorder called Neurofibromatosis type 2 (NF2) and how he has more than overcome the challenges that came with it— he has thrived because of it. He is the author of a new book, Soundtrack of Silence: Love, Loss, and a Playlist for Life. 

EPISODE HIGHLIGHTS

Can you talk about the inspiration for your book?

NF2 causes tumors to grow on nerves and I have benign tumors on my hearing nerves. So while my ears work, the nerve that connects my hearing and my brain has been damaged and I'm deaf as a result. I felt a responsibility to put into words what I've been through because I once felt like I didn't have anyone to turn to. 

Can you tell us about the soundtrack and collecting the songs on the playlist?

When I came face-to-face with losing my hearing, I knew I wanted to hold on to music and the memories associated with specific songs. The soundtrack is a collection of songs associated with my experiences with rare disease. I started listening to songs with intention and considered the songs I wanted stuck in my head for the rest of my life, the ones I wanted to reflect back on in sorrow and joy. 

Can you talk about your mindset to thrive?

I spent a lot of time when I was younger, pretending my NF2 challenges didn't exist, hiding symptoms from others, putting so much energy into trying to exist as a person in spite of my disease. I realized later that through my challenges, I had learned to be a better listener because of my hearing loss. I became more empathetic because I have experienced in my own life that it doesn't matter how hard you try, some things are out of reach. I wouldn't have developed these skills without having NF2 and I'm proud of how it has shaped me and what I've learned from it. 

What is your advice for others who want to tell their story?

Having spent a lot of time advocating for myself and others, I notice this belief that someone has to be a polished speaker to tell their story. When it comes to sharing your story about rare disease, the more real and authentic, the more impactful. Your story is absolutely worth telling. And sometimes if you don't feel capable, just existing is enough. 

LINKS AND RESOURCES MENTIONED

Soundtrack of Silence: Love, Loss, and a Playlist for Life

https://bookshop.org/p/books/soundtrack-of-silence-matt-hay/19995432?ean=9781250280220

Soundtrack of Silence on Spotify

https://open.spotify.com/playlist/1GCTtdXb5zzJO0OMMZbcfv?si=0a9c377b237d4675

ONCE UPON A GENE - EPISODE 214 - A Courageous Gift - The Power of Brain and Tissue Donation in Rare Disease Research with Anne Rugari

https://effieparks.com/podcast/episode-214-the-power-of-brain-and-tissue-donation-in-rare-disease-research

ONCE UPON A GENE - EPISODE 215 - Beyond the Crossroads- Rebuilding and Reclaiming Identity After Sacrificing Careers for Caregiving with Emily Crawford

https://effieparks.com/podcast/episode-215-beyond-the-crossroads

ONCE UPON A GENE - EPISODE 209 - A Leap of Faith - Rare Disease Moms on the Bittersweet Joy of New Babies

https://effieparks.com/podcast/episode-209-a-leap-of-faith

Matt Hay on Instagram

https://www.instagram.com/hearmatthay/

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