Matt Hay spoke with KQED-FM’s (Northern California Public Broadcasting) storytelling podcast, Q’ed Up, about losing his hearing, falling in love with his wife, starting a family, and living with neurofibromatosis type 2. Matt is a member of the Children’s Tumor Foundation Board of Directors.
Listen to the Soundtrack of Silence on KQED’s new storytelling podcast, Q’ed Up.
This part of the transcript picks up in the middle of the interview; to start from the beginning, click here.
Matt Hay: Things like Bon Jovi’s Living on a Prayer, stuff like that was out. There was just way too much going on in the music.
April: He’d only had the ABI for a year so far so instead, he went for songs with really clear rhythms and minimal lyrics. [Music 00:34:56]
Matt Hay: Particularly earlier Beatles that was just clean and an easy melody and some of their songs only have ten words.[Music 00:35:10]
April: It’s sort of like primary colors, if you will, as opposed to a complicated palette of pastels and shadows.
Matt Hay: A lot of repetition and a lot of the same words over and over again, so it’s …
April: It wasn’t really about the words at all. It was about the rhythm the words created.
Matt Hay: I wasn’t really hearing the music. I was identifying the music. [Music 00:35:38] I could say, “Hey is this Let it Be?” Because I got the bum, bum, bum. [Music 00:35:49] Maybe I’m not getting on unique moments within the music, but I need to manage my expectations. [Music 00:35:58]
April: For now, this was enough. It was just his first year learning to hear again with the ABI device. Already, he was ahead of the pack. Now, he and Nora had two little babies, a boy and a girl, Luke and Madeline. Recognizing some Beatles songs was more than enough.
Nora Hay: There was a moment when Luke and Maddy were babies. We had two rockers in the nursery so we’d sit side by side and read and play The Beatles lullabies.[Music 00:36:36]
April: Couple years later, they’d welcome another daughter, Kate. All three were tested for NF-2. None of them has the disease. [Music 00:36:44] Here’s invincible Matt, healthy children, loving wife, stable job. His life was starting to look normal, but he wasn’t happy for a number of reasons. When doctors removed the tumor in his head, they severed his left facial nerve, leaving the left half of his face paralyzed permanently. Nora remembers this was the thing that really shook Matt’s relentless optimism.
Nora Hay: He was miserable because he said, “I have to be able to smile. I don’t want to not be able to smile.”
Matt Hay: Now that, that’s what can take away the feeling of invincibility.
April: Being a dad in the midst of all this was hard. If communicating with Nora was a challenge, understanding toddler speak was impossible. In the night, he couldn’t hear the kids at all so when Nora had to travel for work, her mom came stay.
Matt Hay: I was self-conscious about being the deaf dad or being the deaf guy.
April: He had had eight surgeries. He was supposed to be satisfied with surviving, but he wasn’t.
Matt Hay: I just was at a point where I felt like I’d had a lot of losses. I needed a win.
April: Matt wanted to do something the other dads couldn’t. [Music 00:38:05]
Reporter: In tonight’s special report, the odds were stacked against him after being diagnosed with a rare disease.
April: He decided to train for an Iron Man. That’s a two and a half-mile swim, followed by a 112-mile bike ride, finished off with a full marathon, a 26-mile run.
Reporter: Matt Hay refuses to let his disabilities define him and to prove it, this man will compete in one of the most difficult and prestigious races on the planet, the Iron Man Triathlon.
Matt Hay: I didn’t want to be the dad that couldn’t hear. I wanted to be, “Hey, didn’t you do an Iron Man?” I wanted to have a label that maybe would offset hearing.
April: Training for an Iron Man is no joke. Matt spent every free minute in the pool or on his bike. That put a lot of pressure on Nora to be essentially, a single parent to three little kids.
Matt Hay: I regret that aspect of it, but I didn’t know if there was going to be … Am I one surgery away from not being able to walk, much less run, bike, swim 140 miles?
April: Nora was also withdrawing, but for her own reasons. While Matt was busy trying to prove his invincibility, his absence just reminded Nora of his mortality. She couldn’t forget that another tumor could always be lurking.
Nora Hay: I think I was pushing him away because part of me was just like … “You’re going to leave me?”
April: With Matt gone so much, those thoughts started to haunt her.
Nora Hay: It was hard to even leave the house with three little babies and just physically get everybody buckled, get everybody … Going to Target with all three by myself was a feat. I think that’s when I sort of panicked about it because I was just like, “Don’t you dare leave or get sick because I can’t do without you.”
April: She had something to prove too, that she could be a single parent if she had to.
Nora Hay: It may be me with them one day and I need to know that it can be me with them one day, that I can do it on my own without your help. [Music 00:40:24]
April: When Matt finished the Iron Man, he realized how much he and Nora had grown apart. That scared him. He ran, swam, and biked away from his fears and now he figured he could jump back to life the way it was before, but Nora had adapted to life without him. He realized he had a lot of work to do to get her back.
Matt Hay: I think it took losing my hearing to become a better listener. It’s made me, in some ways, a better communicator.
April: The Iron Man had given Matt an excuse to stop listening, but now he had to get back to work with his ABI. He’d made a lot of progress in the first couple years, but he still had a long way to go before he could even understand full sentences.Learning to communicate on a practical level that he could understand and an emotional one that Nora would understand, this was Matt’s next Iron Man and the key to his self-prescribed training regimen was music. [Music 00:41:32] Just like with language, Matt continued to study his old song list and to test himself. It became a task in measuring his progress. If Beatles was like bench pressing 100 pounds, Phish was like putting 200 pounds on the bar, just to see how it felt. [Music 00:41:50] Watching music videos where he could see the singers’ lips was almost cheating. For a real challenge, Matt listens to music in that all-American way, in the most American of places, driving in his car. Music that came out after 2001 is out of the question. It’s meaningless to him. It’s three old CDs, Beatles, Beck, and a mix album that Nora made when they were dating called Songs We Like. Matt just plays them on repeat, same albums, same songs, for the last ten years.
Matt Hay: Nora and I aren’t listening to music together because she doesn’t want to listen to the same 30 songs over and over again and I totally get that. [Music 00:42:41] Crazy, her left eye is lazy. She looks always crazy, nicotine baby. Just knowing that same part over and over again is enough for me to take me back to 864 North Paulina or 654 in West Brightwood. We had a three …
April: All this time I’ve been getting to know Matt, I’ve wondered, what’s it like when you grow up and you go through all these life changes, but the songs in your head stay the same?
Nora Hay: It just feels like a very heavy choice to make. I sort of see it as you’re choosing the soundtrack for the rest of your life.
Matt Hay: Yeah, and I don’t think that’s an overly dramatic way to put it because I didn’t know if I would ever hear again and so, “What song do you want stuck in your head from age 25 to 85?” I don’t know if at 25, I was wise enough to think of it that way.
April: People well-versed in the music of the last decade will try to tell Matt it’s not such a bad thing having your inner soundtrack stalled in 2001.
Matt Hay: People when I tell them that will joke, “You’re not missing anything.” All right, I’ll trade you then.
April: Here’s the interesting thing about Matt’s soundtrack being stuck in the past. It’s what ultimately delivered him back to his present-day life. Listening to songs that reminded him of the early, romantic days with Nora also served as a reminder of what he had to lose.
Matt Hay: If somebody said, “In 20 years you’re going to be able to hear a song that will connect you back to intimate moments that you had with Nora,” it just was so far beyond the realm of possible.
April: That’s what was happening. As he trained the cognitive parts of his brain to hear these old songs again, the emotional networks of his brain got fired up. The more in touch Matt became with the positive feelings of the past, the better his communication got, the better things went with Nora. They started talking again, really talking. Nora says they’re in a much better place now.
Nora Hay: I mean, you grow. A marriage goes like this for anyone. That was a growing phase, a learning phase that we got through.
April: They adapted to the changes in their life together, found their roles as parents together. They even sang together to their kids before bedtime.
Matt Hay: I would sing and probably butchered the lyrics, but that’s the beauty of singing to a two year-old. I can remember Kate, “Sing the U2 song.”
April: Luke and Maddy are both 11 now. Kate is 8. [crosstalk 00:45:25]
Matt Hay: You’d say, “Sing the U2 song.” [Music 00:45:39]
April: For Matt, as an adult and as a parent, the role of music has shifted. It’s no longer just a solitary activity, a training tool or a link to the past. It’s simply the bridge to his family. Today, there are all these little ways that Matt shows his love through music. When Kate wanted to learn guitar, Matt bought one the next day. When he drives Luke to basketball games, he plays rock anthems in the car to get him pumped up. Last year, when they moved into a new house, Matt installed a surround sound system for Nora. Sometimes before they go out, he’ll turn up the music, peer into the bathroom, and watch Nora sing to herself while she gets ready. [Music 00:46:40]
John: The Soundtrack of Silence is reported and produced by April Dembosky. The editor was Julie McAvoy. Rob Spate, Devon Patillama, Paul Lampor helped with audio engineering. Queued Up is a production of KQED in San Francisco. [Music 00:47:34]
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