WATCH: Making sense of the silence

TOPEKA, Kan. (WIBW) - How do you react when you’re faced with life-altering news?

Matt Hay was diagnosed with neurofibromatosis (NF) when he was in college. NF is a genetic condition causing tumors to grow on your nerves. In Matt’s case, he was told a tumor on his auditory nerve would take away his hearing.

In this Hear me. See me. podcast, Matt shares the journey that followed. It’s one he chronicles in his book “Soundtrack of Silence,”using music to guide lessons learned. What songs would you want to keep in your head if your world would soon go silent?

Transcript

Melissa: How do you react when you receive a life-changing diagnosis and there’s no treatment or cure really to deal with it? We’re diving into that topic on this Hear Me, See Me podcast. I’m your host, Melissa Brunner. This is a mental health awareness initiative based here at WIBW-TV in Topeka, Kansas. I’m combining two of my favorite causes today for the podcast. May is Mental Health Awareness Month. It is also NF Awareness Month. That’s neurofibromatosis. It’s a condition that causes tumors to grow on your nerves throughout the body. We’re going to explain it a little bit more in just a moment. But I want to share with you a conversation of a man who is living with NF and who received a diagnosis that would alter his life. How he coped with that and ultimately is using that experience to help others is a valuable message. Please enjoy this Hear Me, See Me podcast.

Melissa: Matt Hay, welcome. Thank you so much for joining me for the conversation.

We’re talking about something called neurofibromatosis, which is a very large and long word. And I’ll let you... you’ve more experience with it. You’ve actually lived with it yourself. I just have it in the family. So what is NF? When people hear that very long word, what does it mean?

Matt: Well, thank you for having me, Melissa. So neurofibromatosis, I think nobody wants to get diagnosed with a rare disease, but you at least give me when I can spell, right? So NF, there’s actually several different types. NF1 being the most common, and then NF2 impacts about one in 40,000 people. And that’s what I have. The more detailed explanation of that, it means I lack a gene that prevents tumors from growing on the nerves in my body. So most people have this gene, and I just don’t have it. And as a result, these tumors, benign tumors, can pop up just about anywhere.

I was diagnosed my sophomore year of college at Indiana University when I lost all the hearing in one ear over one semester, which is not common for anybody. It’s certainly not common for an invincible 19-year-old guy at IU. And I was very fortunate. I went to an audiologist and they said, your tests are coming back strange and we recommend you have an MRI. I was very lucky to have an audiologist that had that sort of patient centered approach and didn’t just fit me for a hearing aid. And the MRI showed benign tumors on my hearing nerves. And when you have bilateral acoustic neuromas, which is benign tumor on your hearing nerve, that’s indicative of neurofibromatosis type two or NF2. And I’ll add to that, there’s data out there that shows it sometimes takes people on average four and a half years to get diagnosed with a rare disease. And I got diagnosed in four days.

Melissa: Wow.

Matt: That sort of privilege and good luck of being around really informed caregivers doctors. And healthcare professionals really started me on a path to, they’re probably eventually led to where I am today. So that’s a long answer, but that’s what NF2 is.

Melissa: And it’s interesting for you because I’ve told people often about my nephew and he was diagnosed when he was young, like infancy from cafe au lait spots, which were some, they’re kind of like tan coffee colored spots that were on his skin and his tumors. And I think this kind of points to the range of NF. And his tumors are, his first one was on his optic nerve. They found it right away and was treated, no vision loss. You had yours on your auditory nerve. So very common places that can affect vision and hearing. And now he’s got one in his brain basically on his thalamus, which is putting pressure, which causes fluid, which causes seizures. And that’s his lifelong challenge. Other people that you and I both know have seen some things that are very disfiguring, um, facially or on other parts of the body. You know, there’s a young man here named Franklin, Frankie, who shares his story on Facebook. His are kind of in his face and they affected his breathing. So it can, it can manifest itself in many different ways. My nephew, Owen, you visibly, we look at you. We really can’t see anything that’s going on. It’s interesting to me that you’re 19, you’re in college, you’re diagnosed with a rare disease. Um, on the one hand, yeah, you have an answer. On the other hand, it’s a rare disease. What do you as a college student go through in your head when that happens?

Matt: Uh, well, for the first year, I found a really powerful coping mechanism called total denial. Uh, I just, my doctor told me, you know, you’re going to lose your hearing. You’re going to lose your balance, your facial function, superficial nerve sensation. And I thought maybe other people, but not me.

Um, so fast forward toward the end of college, I had started to experience every one of those things. Um, I was very fortunate again, living in Bloomington, Indiana. I was only an hour away from Riley’s Children’s Hospital, which was one of the premier, uh, facilities that actually had an NF clinic. I certainly didn’t recognize how fortunate I was at the time because nothing about getting diagnosed with a rare disease feels lucky. Um, but I was, um, very, very fortunate from the get-go to have a wonderful network of friends and family and people that could support me through some of the harder stuff for doctor appointments or going to get fitted for hearing aids.

When I graduated, uh, one of the first calls I made, I moved to Chicago after graduation. And one of the first calls I made, you know, when Google didn’t exist, so I went to Netscape navigator. So this would have been about 2000. And I looked up and I found there was a group called, um, NF network and they were doing a walk. And I thought, you know, here, I’m living with this and I’ve never met, I’ve never heard of it. I’ve never met anybody else with it. And so I found online an advocacy group that was doing a walk nearby and with my wife and a couple of friends, um, which was my girlfriend at the time. Uh, we went and did just a one mile walk. And I remember going, and it was the very first time I’d ever met anybody else with NF. And I thought there’s something really, uh, comforting, even though I don’t know any of these people and I’m here with people I’ve known my whole life and people that I love in some ways, I have more in common and can relate to these strangers in a way that I can’t even relate to some of the closest people to me.

Um, and so for me reaching out to an advocacy group early on that journey was really important.

Melissa: But even that took time when you’re diagnosed with an illness that, um, and in your case, and in the case of NF, an illness that nobody really knows anything about, I think being diagnosed with any serious illness and feel very isolating if you don’t know someone specifically who has, I mean, even, even talking about cancer, people feel very isolated when they’re diagnosed. What, what was that sort of feeling like that you described? I mean, until you went to an NF walk, even though you have people who love you and are supporting you, what is that feeling of isolation that no one really understands? I can say they’re there. They, they support you. Come to me if you need anything, but that gap in understanding.

Matt: It’s a, it’s a great question. I mean, I, like I said, I couldn’t have asked for anything more in terms of support and still felt very much alone. Like who, who do I reach out to that really understands what this feels like? And couple that with losing your hearing, which can also be isolating. Um, I remember thinking to myself, what am I going to do? And I, and sometimes that meant, what am I going to do by lunch?

And eventually I lost my hearing. So really, what am I going to do? How do I, I can’t put a pizza in the oven in them anymore. I can’t hear when somebody rings the doorbell. And some of that was, what am I going to do career-wise? I just put four years and got a degree in marketing and had a job in sales out of college. And I can’t even listen to voicemails anymore. I would have to, I had a good friend at work and I would secretly have her come in and listen to my, the messages on my voicemail because I was having trouble understanding them. And you feel like you can’t go to HR. You can’t go to your boss. I can’t go to my wife because she’s not there. So you’re left feeling very alone and making a lot of these, um, day-to-day, sometimes day-to-day decisions, sometimes big life decisions. So it, it really is, um, at times can be more difficult to manage mentally and emotionally than physically, even though we most often hear about physical manifestations. Just in the time we’ve been talking, I’ve talked about benign tumors and losing hearing and cafe au lait spots. And those are all physical things. Sometimes that’s the easy part to navigate. I wish I had an answer for that. Or I wish I could say, here are the three things that I did that fixed that, but I’m 49 years old now. And I still find myself looking in the mirror and not seeing the person looking back that I expect to see because of facial paralysis from brain surgery 20 years ago.

So, um, you know, fortunately those conversations, they’re kind of like hype yourself up in the morning. They don’t take as long as they used to, but they’re still there.

Melissa: And I think that’s why I love having these conversations and sharing them with people, because I know that there are people listening to that, Matt, and they’re going exactly right. But, but you’re 49 years old. It’s been 30 years since you were diagnosed and you’re still on that journey.

Matt: Yeah. Yeah. And there wasn’t a point where somebody comes along and says, Hey, we have the answer you’ve been looking for. Uh, you just find out. And I think, uh, for me, I made a lot of mistakes and like what to do, what not to do. I avoided, uh, you know, between age 20 and 30, I don’t think you’ll find a single picture of me because I was dealing with facial paralysis and I was on steroids. So the side of my face that wasn’t paralyzed was bloated from steroids. And I thought, I don’t, I don’t want a picture of me. I’m a little better and healthier now. And I regret not having a picture of me then because it’s really hard to appreciate how far I’ve come because I stole the opportunity for myself through like vanity or ego of not allowing me to remember where I was to know, you know, where I am now. And I, I wish I had that. And so, you know, I’ve made a lot of mistakes like that, or even if it’s not a mistake, maybe something I would have done differently. And through all of that, you start to learn and, and it feels selfish to, to know that and experiencing experience that and not share it more widely. And I think a lot of the things that I do now that drive me and my coping mechanism now is every time I can share with somebody a mistake I made. If that makes one minute of one hour of one day of their life better, it makes me feel better about having gone through that.

Melissa: Is that kind of a lesson too, that mistakes are okay? Obviously there’s no one perfect path through any of this.

Matt: Yeah. Yeah. Well, I mean, I literally filled a book of mistakes.

Melissa: So, you’re here, you’re standing by the way, and it’s been quite a journey because by the way, I’m sure, you know, when you talked about how you lost your hearing, people are going, but how are you having this conversation via Zoom? I mean, modern technology one is just absolutely wonderful. What are, what are you doing right now, Matt? I don’t even know. How are we having this conversation and what is it that, that you’ve been able to recover to, in order for this to work?

Matt: Sure. So it’s, it’s a great question. And my answer is going to sound like a joke and it’s not. There has never been a better time in history to be deaf. Because, you know, Skype launched video conferencing a long time ago, but it was never great. It was always kind of clunky and would pause. But during COVID, all of a sudden there was a demand for it. And all of a sudden, Zoom, Teams, Google, all came out with this much better real-time video. And in the meantime, AI starts to develop and real-time voice recognition software started to become a thing.

And at the same time, science, I have what’s... so I’m totally deaf. I have what’s called an auditory brainstem implant. So it looks like a cochlear implant. But because my damage to my hearing, my ears actually work fine. It’s the nerve that connects my ears to my brain that don’t work, that doesn’t work. So an ABI bypasses that nerve and goes directly to my brainstem. So I hear with 12 electrodes that was sown directly to my brainstem. And the combination of that auditory brainstem implant technology, allowing me to hear some of what you say that’s sort of muffled and robotic, combined with video software that allows me to see you in real-time, and AI captioning that allows me to read what you’re saying, I’m hearing this in three different ways. And none of that existed when I was diagnosed. So it’s pretty crazy. It’s absolutely amazing. And I hope it’s not translating me with a bunch of cursing.

Melissa: It does, but that was before we hit record.

Matt: That’s what’s really happening, right? AI is also cleaning up my language.

There really are a lot of wonderful tools to help people that are deaf or hard of hearing now that didn’t exist even five years ago.

Melissa: How did you have to find yourself re... you know, you mentioned rethinking your future. How much of a struggle was that? And how long did it take you to realize, okay, future is not maybe what I thought, but it’s going to be okay. Because like you said, they tell you... I mean, how long did they give you before you were going to totally lose your hearing?

Matt: So I was told I was going to lose my hearing at 19, and then I lost, so which would have been about 97, and then I lost it all in 2002. So I had a five-year window of my hearing aids getting bigger and accidentally becoming a pretty good lip reader. But then also figuring out like hearing loss coping mechanisms. You know, living in Chicago at the time, restaurants are loud, bars are loud, but I’m in my twenties and that’s the social scene for my network. I would learn if I picked the restaurant and I got there first, I could pick a place that was relatively quiet. I could get a table in a corner. I could sit facing out so I could see what was coming at me. I grew to know where my environments worked best. I would go to a wedding and immediately walk in and be like, okay, the band is over there. I want to sit over here, but I want to be able to face where the bride and groom are so that if the room gets quiet, I don’t decide to tell a joke during the best man toast. You just learn like day to day in every environment, how to adapt to those scenarios. So when I did finally lose my hearing, I mean, there was a six month window before I got my implant where I was totally deaf and those coping mechanisms really helped.

Melissa: Well, I know that one of your other coping mechanisms was music and I want to get into what that led to. We’re going to take a quick break and we’ll be back with the Hear Me, See Me podcast in a moment.

Part 2

Melissa: We’re continuing our conversation with Matt Hay here on the Hear Me, See Me podcast. We are timing this because May is NF Awareness Month, Neurofibromatosis Awareness Month, which is a genetic condition that Matt lives with. It took your hearing, but you have found great ways to move forward and great perspective, Matt. And that’s why I’m so excited to not only raise awareness with our conversation, but also talk a little bit about your journey. And that partly was done through music. How important was music in your life?

Matt: Uh, you know, my music career started, there were four people in my middle school band that played the trombone. And, um, the writing on the wall about my long-term career as a professional trombonist was probably when of the four of us, I was given the position of fifth trombone, which meant I wasn’t even, you know, so we had a first, second, and third, and, you know, the, the skill level goes down and then they skipped four and they made me fifth. Um, so music wasn’t something that was a huge part of my life until I got to college and you just start to get exposed to a lot of new music. And it sounds very cliche, but yeah, my, some of my best friends in college, my junior and senior year were taking the history of the Beatles, the history of rock and roll. And I just, for the first time, for whatever reason, got introduced to the Beatles when I, at 20, 21 years old. Um, and I thought I found my niche and I just, I really enjoyed the music and connected to the music in a way I hadn’t before.

Um, it also turned out that at that point, my hearing is in pretty significant decline. The Beatles are relatively, uh, easy music to listen to if you’re losing your hearing, because there’s not a lot of, there’s not a ton of background noise. There’s not, you know, something like the who would be way too difficult because there’s so much going on. And the Beatles have some clean lines and a lot of repetition. And so I was really drawn to that. And so that was the music that I was listening to over and over again, uh, when I eventually lost my hearing. Um, and so in that period where I’m deaf or when my implant was first turned on and it didn’t work very well at all. And by say first turned on probably for the first decade, um, the fact that I could hear anything was, uh, supposedly medically speaking a wind, but I could hear life noises, which is like oven timers and police sirens. But when you haven’t heard anything for a year, oven timers and police sirens is a pretty cool thing to be able to hear. Um, and I just wasn’t getting better with it. I wasn’t getting better with it. And that was very frustrating for me.

Uh, and I had this theory. I can’t hear music now. I can’t because it wasn’t a volume issue for me. It was a speech understanding issue. Everything was very, uh, robotic and muffled. And so I had this theory in my head of, I can still hear all of these Beatles songs in my head. Yeah. I’m in a totally quiet world where I get muffled oven timer type sounds, but I’m singing, let it be in my head. And I can, I can hear the chords. I can hear the progression. I can hear, you know, the drum, the guitar, the bass.

So my thought was, why don’t I just start listening to the Beatles again? I have a CD in my car. And even though I can’t hear, understand music, what if these songs in my head can kind of help jumpstart my hearing again? And so I listened to the same 12 songs for about two years and understood nothing. Um, one day my wife and I are in the car and I heard the line. I said, Johnny, what you’re doing tonight on the radio. And that’s a line from a song, but a crazy game of poker by a band called OAR that my wife and I had gone to listen to before I lost my hearing.

And I thought for the first time - I’m getting emotional telling the story - for the first time in maybe a decade, I heard a song. Like I got into a car and over the radio, I’m deaf and I heard a song. And, um, um, I can be irrationally persistent about things. And so I thought, hey, this theory I’ve had of maybe music can help me hear music again. I think it’s working. And I listened to the rest of the song and heard nothing, listen to the radio all day and heard nothing, but I heard that one line and that was enough. And I doubled down and started listening to those same songs over and over again. And within a year I had a playlist that was about 60 songs long. So, um, it was the Beatles listening to Beatles over and over again, really taught me to hear again. And then, and then over the next decade, my speech understanding improved to about 95% in a quiet environment, which is, is actually really good for anybody. So the fact that I’m deaf and you’re at 95% speech understanding with 12 electrodes under my brain is about the closest thing to a miracle in science I have experienced.

Melissa: That’s amazing. There’s, there was an actual physical component to it. I was just interested in the emotional component.

Matt: Oh, well there, so. Cause we, we all, I think. No, I have, I have a great way to explain this. Um, and let me think how, when you lose something that you care about or lose something that you love, everybody goes through stages of grief. And, and I, I felt that where I lost sound and music was sort of the most emotive aspect of sound.

And so I grieved that loss. And then, you know, we’ve all lost a loved one or a pet and you go through and you kind of, hopefully you can get to a point where you’re like, well, this, this is just to what the world is like without that person now. And you figure out how to navigate that new world. And I had gotten there. And then, you know, let’s say you lost your Aunt Kathy and you kind of just get to a point where you’ve accepted the world without this wonderful Aunt Kathy and you do your best to get by. And then one day, Aunt Kathy walks out of a Walgreens and comes this over to say hi. And I felt that way about music re-entering my life. And you’d probably hug your aunt harder than you ever have. And you’d never want to let go. And I think that’s how I feel about music now. I have a playlist that’s now 200 some songs. And I listened to them over and over again, all the time, because I feel like I am welcoming back this thing that I love that I thought I had lost.

Melissa: But you put it in a book, Soundtrack of Silence, correct?

Matt: That’s right.

Melissa: And you narrowed it down.

Matt: Um, I did. I narrowed it down. Um, I really though, the point of the book was there’s something felt very egotistical about being a at the time 45 year old white dude and thinking the world needs to hear how hard life is for me. You know, there’s a lot of structure and, uh, the world that have put me in a position to be successful. And I’m sure I’ve taken all of that for granted. Um, and so it felt a little bit egotistical, but going back to the mistakes that I mentioned, I could have really used some kind of roadmap or at least heard from someone else’s experience. And so I decided the selfish thing wouldn’t be to write the memoir. It would be if I have something that can help somebody else or certainly would have helped me 25 years ago, it would be selfish not to try to put that on paper. And so I started sharing some writing down and putting on paper some of my anecdotes and experiences of diagnosis and losing my hearing and regaining my hearing and the music story I shared with you. And as I was writing the songs like quite literally soundtrack of what I was writing, I would write about the experience of driving with your friends when you’re a teenager and rolling the windows down on a summer day. And then Prince’s 1999 is blasting. I could hear those things as I was writing. And that ended up becoming a pretty significant hook in the book. And that’s why it’s called Soundtrack of Silences. It’s really my story overlaid with the soundtrack of my life through all of those experiences. And it actually made it easier to write, because I remember thinking like, what more do I want to tell? And Don’t Let the Sun Go Down on Me came on in the car, a great Elton John song. And as that song came on, I remember feeling as a 22 year old losing my hearing and feeling frozen here on the ladder of my life, which is a line from that song. And so when the song came on, I remember getting home and in my phone writing, I have 5000 words for the book about that feeling of what it’s like to be a lonely 22 year old wondering, is this it for my life? Like, is all of my rare disease and health issues going to limit me from moving up any kind of ladder anymore?

And so that song prompted me to write more. And I thought, let’s just combine them all together. So that ended up being Soundtrack of Silence.

Melissa: And you are very humble because this story has resonated, right?

Matt: I mean, I hope, I think, you know, as a patient advocate, I know, and even now I’m telling my story.

My goal is always, I hope people listen to this, and then never think about me again. I hope they read the book and never think about me again. I hope they read it and pick out or listen to this and pick out parts that can help them in their life, and then make it about them. And if my story resonates in a way that helps make that more or more widely possible, what’s cooler than that?

Melissa: What would you hope that anyone listening or reading the story, what do you want them to be the main takeaway? If they’ve heard nothing else from your journey, what do you hope they take away from it?

Matt: Oh, I, I know when I walk through a Kroger or a Home Depot that people look at me with facial paralysis and an unsteady gait, and they stare at this thing on my head, and they probably make assumptions about who I am or what I do or what I’m capable of doing. And it took a while, but I have used that as like motivation to try to do bigger things, so as not to let someone else’s bias or preconceived notion about me. I don’t want to, whatever they’re thinking, I don’t want that to be true. I want them, I want to exceed that. So where I think that is more hopefully widely relatable, and to answer your question, I would encourage people not to let anybody else ever define what they are capable of doing. That we are the only ones that can control, we are the only ones that get a vote in what we are physically, emotionally capable of doing and accomplishing. You know, I’m not going to climb Mount Everest, that’s okay. And I, I will accept that and I will find a different way to channel my interest and energy. But I’m not going to not climb Everest. My limitation is not because you told me I couldn’t. It’s because I decided that’s something that wasn’t right for me. And I think it’s easy for all of us, whether you have a rare disease or not, to fall into the trap of letting other people, even with the best intentions. To use an example I gave earlier, I had some of the world’s foremost brain surgeons and ENTs tell me, your implant is going to allow you to hear the life noises. And so after two years, when I heard life noises, I quit trying to train with my implant and get better.

Because people that are at the top of their, like they are experts in their field told me I had achieved their expectations. And it took me another few years to kind of come to terms with the fact that I’m not okay letting somebody who doesn’t really know me define what my, what a ceiling for me is. And that was a big moment for me. And I think, I hope that is very relatable that sometimes you get doubters, but sometimes even your own friends and family might unintentionally limit what you’re capable of doing. Don’t be afraid to push back.

Melissa: I love that sentiment. Matt and I came to know each other through the Children’s Tumor Foundation. So if your interest has peaked on what NF is, and you want to learn more about it, please go to ctf.org. We would appreciate the support for Matt for himself and others who are living with NF. My nephew is among them. So we appreciate you all taking time to learn about that. And I think Matt too, what we learn is that, you know, we’re all different. I love what you said about someone sees you and they might have a preconceived notion or judge something about you. All of us have something in our life that I think internally we’re thinking, well, they’re going to judge me because I came from this particular background. I grew up in a rural area. You know, I didn’t do a lot of, you know, our family didn’t do a lot of extra things. There weren’t a lot of extras. We didn’t have a lot of money growing up, you know? So should I go to college? Don’t ever let anybody limit you. Yes, you can do that. You know, you have a challenge with hearing. Does that mean you’re not going to be able to be successful in your career? Absolutely not. You find ways to make it work for you. And it’s a journey. It’s not a one day thing.

Matt: Well, thank you for that, Melissa. And thank you for the work you do. I know, you know, in NF for a long time, there weren’t any solutions for anybody. There wasn’t really a path other than finding a community of maybe emotional support. And so I think anybody, especially folks in the NF community who might hear this, if you feel like you’ve been disconnected to that advocacy network for a long time, I would encourage you to reach back out because there’s a lot of exciting things happening in the NF world right now. And the work you’re doing to shine a little bit of light on that, Melissa, is really wonderful.

Melissa: Well, I appreciate you sharing because it’s sharing these stories that help people learn and grow and really thrive as well. And while it may take many different forms, as we’ve learned today, no matter how you hear or see or how your senses function or what limits your functions may have and that you’re using to the fullest, always remember, we hear you, we see you.