"Soundtrack of Silence" feat. Matt Hay

When the ordinary act of listening becomes a fading memory, how do you hold on to the harmony of life? In this episode of the Hearing Matters Podcast, Dr. Douglas L. Beck has a conversation with Matt Hay about his new book "Soundtrack of Silence". 

Matt Hay's story is a testament to courage and the resilience of the human spirit, as he shares the reality of living with neurofibromatosis type II (NF2) and its impact on his hearing. At just 19, a vigilant audiologist's insistence on further testing led to the discovery of bilateral acoustic neuromas, turning Matt's world upside down. This episode is a deep exploration into the vital role of patient advocacy and the life-altering potential of diligent healthcare professionals.

Embarking on a courageous journey, Matt underwent an Auditory Brainstem Implant (ABI) surgery, a procedure that promised to reconnect him to the world of sound. The support he received was invaluable, especially from his wife Nora. Together, we unravel the challenges and triumphs of adapting to an ABI, the incredible emotional support networks that become lifelines during recovery, and the complex navigation through facial paralysis rehabilitation. Matt's narrative is not just about overcoming medical hurdles; it's a story of love, loss, and the incredible bond between two people facing the unknown.

Our conversation culminates with a recognition of the profound emotional journey depicted in the book "Soundtrack of Silence," a narrative that brings to light the human experience behind the medical condition of NF2 and living with an ABI. We celebrate the poignant storytelling and advocacy work of individuals like Matt, and the indispensable role of patient-centered hearing care, as exemplified by the Delfino's. This episode isn't merely a chronicle of medical marvels; it's an ode to the indomitable spirit that surges within each person confronting the silent battles of hearing loss and beyond. Join us for an inspiring tale of audacity, hope, and the sound of perseverance.

Transcript

Dr. Douglas Beck:

Hi, my name is Dr. Douglas Beck. I'm an audiologist, and you are listening to the Hearing Matters Podcast. What we're doing today is we're interviewing my friend Matt Hay, and some of you have had the pleasure of reading his book already, but we're going to get into that in a little bit. Matt, first of all, I want to thank you for being here. It's great to see you.

Matt Hay:

Good to see you too, Doug. I know we've over the years, traded texts and emails, but you're a busy guy, so this is actually just a chance for us to catch up.

Dr. Douglas Beck:

This is a good time to catch up. I've been seeing online so much praise for the book and for your attitude, your competence, your stick-with-it-ness, your ability to keep getting back up because you've been punched down in the nose a couple of times here and you could just keep getting up and life just keeps getting better. And I'm so proud of you. I want to start by talking about your hearing loss. How old were you when you first noticed that you had hearing loss?

Matt Hay:

So thanks for that. I appreciate the kind words, Doug. And technically I'm deaf. I'm deaf because while my ears are pretty great, I mean, everything about my ears really works fine. They just aren't connected to my brain. And that is because the nerve that connects the hearing process to the brain was damaged from benign tumors. I have a rare disease called neurofibromatosis type 2 or NF2. It results in I lack a tumor suppressor gene. You're lucky enough to have that. And as a result, benign tumors can grow on the nerve sheath anywhere on my body, and they just happen to really like hearing nerves.

Dr. Douglas Beck:

And this is not an unusual situation for people with NF2. I can recall when I was at house 35, 40 years ago, we would frequently see patients who had neurofibromatosis type 2, and it would cause acoustic neuromas to grow along the hearing nerve, which is much the situation you're describing. And these are, as you said, benign tumors. But even though they're benign, they can compress the brain stem as they grow. And so if the tumor is growing and diagnosed, it makes good sense to have them removed. And the problem with that, of course, is the number one way to get at them is through a translabyrinthine craniotomy, which pretty much drills through the inner ear to get access to those tumors. So that's the situation that you found yourself in.

Matt Hay:

And you mentioned it is an acoustic neuroma, which is not too uncommon. There are a lot of people out there that lose hearing on one side because of an acoustic neuroma. But you're right, the word benign is actually a poor description because having two or three centimeter tumors compressing your brain stem is anything but benign.

Dr. Douglas Beck:

Exactly.

Matt Hay:

And what is unique about NF2 is it was a bilateral acoustic neuroma. So to answer your initial question, I was 19 in college, and over the course of a semester lost the ability to hear on a phone with just in a matter of months. And so I didn't realize it at the time, but this is also one of the reasons I'm so proud to be here. I'm proud to know you guys and the work that you and your colleagues do is, I went to an audiologist and I could have very easily been fit with a hearing aid and sent on my way.

I didn't recognize the benefit and privilege and opportunity I had to go to an audiologist. This was in Evansville, Indiana in 2004 and have an audiologist that said, "Your tests are not coming back the way I have been trained to read tests in Indian University in my RD program, I really think that you need to see an ENT and have an MRI." I assumed that meant this audiologist did not know enough about what they were doing. I realize in hindsight how fortunate I was because you mentioned best practices in the introduction. That was a best practice.

Dr. Douglas Beck:

It certainly was. And it's so important that I want to make this distinction here because good practices are fine and a lot of people will do traditional audiometry in their office. The problem with traditional audiometry and the problem with hearing screenings is you could have a situation much like you had, Matt, and it would be invisible to the clinician quite often. And so they might say, "Well, gee, you've passed a screening." Or, "Gee, your hearing appears to be within normal limits." But that doesn't necessarily explain the distortion that you're perceiving. And best practices are not necessarily a local choice. These are practices that have been written by subject matter experts who have been in their profession for a very long period of time, and they are written by the American Academy of Audiology, the International Hearing Society, the American Speech Language Hearing Association, those national groups, they write best practices, all of which include basic diagnostics. But then they also say listening and communication assessments and speech and noise tests and acoustic reflexes and other sophisticated tests that are designed to help us see the forest for the trees. If we're just doing screenings and basic audiometry tests, we don't have the ability to gather all the information we need to make the very best referral. In your case, clearly that made a huge difference.

Matt Hay:

And I think it's accurate to say I took that for granted. I mean, I'm just a 19-year-old kid at the time who wants to be able to watch Sports Center without having the volume up to 99 on the TV at a fraternity house. So my concern was very shortsighted, but I look back now and realize what an opportunity that was. And that was really the first step that put me on a path toward patient advocacy and best practices of recognizing how much my life. I mean, it really changed that day because four days later I had an accurate diagnosis for a disease that impacts one in 40,000 people. I know now that rare disease diagnosis can take four years.

Dr. Douglas Beck:

Absolutely.

Matt Hay:

It took me four days and it happened because of a hearing care professional who was able to put their maybe ego or aside and say, "My tests are not telling me what I think they're supposed to tell me. I think we need more help." And I get goosebumps saying that now because how fortunate am I to have had that level of care that early on in my hearing loss experience.

Dr. Douglas Beck:

What year was that, Matt, when you got diagnosed?

Matt Hay:

This would've been about 2000. Well, that first diagnosis would've been 1997. So I was a student at IU and living in Evansville.

Dr. Douglas Beck:

And in 1997, MRIs were still pretty new. I mean, this is an amazing thing. We think of these things now. We say, "Oh yeah, just go get that done." But in 1997, it was a very expensive test and people didn't want to do it unless they had a darn good reason to order it because somebody's going to have to pay for it. And now the MRIs, of course, are even much more specific, much more accurate, smaller slices and we can see more detail. But so in '97 you got your diagnosis, and then did you try hearing aids along the way or did you just not do that?

Matt Hay:

I was very fortunate in being at Indiana University and the speech and hearing program that they had there, again of just sort of falling into the right place at the right time. Someone I worked with at Indiana happened to be the son-in-law of Dr. Hippskin who ran the speech and hearing program at Indiana and has been a friend now for 30 years. And I get into this a little bit in the book because there's some funny anecdotes that happened when you're a cocky 19-year-old trying to get fitted for hearing aids. But I was able to meet somebody that said, "Hey, I think there's an opportunity here for us to help you and for you to help my speech and hearing program." And so I was fitted, and I remember at the time, so this would've been '97, he was very excited because I was the first patient at Indiana University to get fitted with a digital aid. And I remember how excited they were about a digital aid, and I thought, I could not care less. I just want to hear better. I don't care about the technology. And I remember him explaining the way that this would be programmed and his students had the opportunity to program a digital hearing aid for the first time. And I thought, I just want to hear Sports Center.

Dr. Douglas Beck:

I know, I know. Well, it's a great story and you do detail it in the book, but shout out to Indiana University. I mean, it's a brilliant medical school to the best of my recollection, I think at that period in time, Dr. Richard Miyamoto was the chair at Indiana, and I met Rich through multiple meetings at the house, your institute, 20 years before that. And he was an incredibly talented surgeon, surgeon, and a wonderful guy. And even the audiology program there was brilliant. Everything about Indiana University, the medical school, communication disorders, audiology, all ACEs, it was fantastic. So you were at Indiana as an undergraduate and you had your audio done, and then did you get to meet any of those surgeons or physicians from Indiana University Medical School?

Matt Hay:

I did, and you're right, although it's not Rich, to me is Dr. Miyamoto after being diagnosed while a student at IU and Indiana is where I had my RI. And then they referred me to this patient hearing program there. And so just another matter of good timing and luck and maybe some privilege of having insurance that would cover that the physician that was attending was Dr. Miyamoto. So here I am losing my hearing because of an acoustic neuroma or bilateral acoustic neuromas. And I'm being seen by, at the time potentially like the leading cochlear implant surgeon in America. And you're right, he set very early on between Dr. Miyamoto, Dr. Hippskin, my hearing care in Evansville. The bar was set very high for-

Dr. Douglas Beck:

Great team.

Matt Hay:

... patient center and care.

Dr. Douglas Beck:

Great group. Absolutely. All right, so you got your diagnosis, you met with Dr. Miyamoto. Did you ever get a Cochlear Implant?

Matt Hay:

So that was the initial reaction was is this a CI candidate? As they look more closely and understanding with my neurofibromatosis 2 diagnosis that a CI might work for a little bit, but as that nerve continues to deteriorate because of the tumor, the CI was not going to work long-term just like a hearing aid wouldn't work. So at that point in my life, I had evolved from an in the canal aid. My hearing declined more. I went to the behind the ear aid, my hearing declined more. They started messing with different types of domes in different ways to get more amplification. But we knew that a CI would just be a surgery that would only help me in a short-term because eventually the nerve was going to give out. So that's when we started having conversations, not about a CI, but an ABI, which is an Auditory Brainstem Implant.

Dr. Douglas Beck:

And Auditory Brainstem Implant started also at the House Ear Institute with Dr. William F. House. And one of the surgeons who studied under Dr. House and they were great friends with Dr. Derald Brackmann. And I had worked with Dr. Brackmann many, many times, Dr. House as well in the operating rooms at the House Ear Institute. And it was such an amazing time and such an amazing place because when we were starting to investigate Cochlear Implants, we had four major centers in the US. You had New York, you had San Francisco, you had Los Angeles, and you had Salt Lake City. And we all worked collaboratively and it was a brilliant, brilliant time. But as far as Auditory Brainstem Implants went, because Bill House had operated on quite a few people with NF2, and it was a major issue. What do you do after you take out the second acoustic neuroma and now you've left the patient deaf, although healthy, but deaf otherwise.

And the question was, could you put an electrode directly on the brainstem? And we had a whole team of folks in the basement at the House Ear Institute working on that for a number of years before you received that implant. First one I was involved with was 1987. A very dear friend of mine who unfortunately passed in the last year or two, Dr. Franco Portillo designed that electrode that sits on the ventral dorsal cochlear nuclei of the brainstem. And when we first started to find candidates for the Auditory Brainstem Implant, we weren't quite sure who we were looking for and what the outcomes were going to be. And there were some great, great stories about that because the neurosurgeon who worked with Bill House was Bill Hitselberger. And I remember I sat down with Hitselberger and Bill House one day and I said, "How did you guys ever get these things approved through the IRB, the Institutional Review Board?"

And Bill Hitselberger looks up at me and he goes, "I thought Bill House got it approved." Back in those days there was no IRB approval. Cochlear Implants, we would just have the patient certify and understand that they knew what we were going to do and why we were going to do it and what we were hoping the outcome would be. And the same thing happened with Auditory Brainstem Implant where you took the very most skilled people in this, Bill House, Bill Hitselberger, those guys, they would talk to the patients, tell them about the expected outcomes and what they thought they could do, but they never promised anybody a result. And you are remarkable. I mean you right now are listening through your Auditory Brainstem Implant. We're both on computers a couple of thousand miles away and I'm conversing with you just like I would if you had particularly normal hearing and were in the same room. I mean it's absolutely astounding how well you do. Tell me your thoughts on Auditory Brainstem Implants when somebody asks you to tell, what is it like to hear through an Auditory Brainstem Implant?

Matt Hay:

Well, first of all, I'm hearing you share these stories the same in real time, the same as anybody else. So I think one of a bit of serendipity for me in this conversation is I hope listeners recognize that they're hearing a clinical side and then hearing a patient side back to back, which is as an advocate, that's kind of an ideal scenario to me. So you're explaining these conversations or you're explaining the experience that you had in LA and I'm thinking, I lived this of a guy talking to Miyamoto in Indianapolis, and Dr. Miyamoto says, "You need an ABI." And I remember making these notes and my girlfriend at the time making notes of what ABI stands for and they're like, "You need to go to LA because there's a guy named Dr. Brackmann and a guy named Dr. Hitselberger who had the most experience doing this."

I went to LA 12 times and we did pre-op. And when I eventually lost all of my hearing, we flew to LA and I had my ABI implanted. Dr. Hitselberger did the cutting and Dr. Brackmann did the implanting, and then Steve Otto, was the audiologist in the end that turned it on. So I feel like I'm living or walking down the path that you and a few other folks helped pave five years after you got done paving it. So this is exciting for me to hear that aspect of it. So the ABI was explained to me, and you can imagine it now, I'm 22, somebody saying, "We're going to sew electrodes directly to your brain and we think that's the part of your brain that processes sound." But the outcomes are wildly divergent. And when you start messing with a brainstem, there's some inherent risk in that surgery.

In that implanting, I was still young and, I don't know, maybe egotistical enough that I thought, "Oh, it's going to be fine, it'll be fine." So I had the surgery done and you have to go back quarterly for mapping or programming. Steve Otto there did a wonderful job of managing my expectations. And I think this is a really important thing for people in hearing care to understand the balance of being able to manage expectations without limiting what a patient is capable of doing.

Dr. Douglas Beck:

Exactly.

Matt Hay:

Because I did get a little bit of a limit or because most ABIs, if they worked at all, that was reasons for high-fiving you and your friends in the basement would high five if you had heard my implant eight weeks later turned on and I heard anything and there were no negative side effects. For two years everything with my ABI sounded like a bottle cap and a garbage disposal or wadding up aluminum foil.

But I was told that would be the expectation. I will tell you, as frustrating as that sounds or unpleasant as that sounds, when you live in a hearing world and deaf culture, capital D, deaf culture is not your culture, but you were thrown into that because you're now deaf. It is lonely and terrifying because that wasn't my people. So there was nothing wrong with being deaf, it just wasn't right for me. Being able to hear an oven timer and not burn a pizza, being able to hear click-clack, click-clack and know that meant my wife was home, because I could hear her shoes on a hardwood floor. Those are amazing sounds to hear. Even if you can't differentiate between an oven timer and click-clack of shoes or a thunderbolt, being able to hear anything was life altering the positive. And so I thought if my ABI gives me that, I have met the expectations and I'm happy with it. And that was the case for about four years. And then we had kids.

Dr. Douglas Beck:

Before we get to the kids. So I noticed in the book your wife was a medical student, soon after you met, she had gone to medical school and somewhere in your journey together she decided that that wasn't the right path for her. Can you tell me about that?

Matt Hay:

Sure. I hope the theme here doesn't become how self-centered I was at 19, 20, 21. But again, going back to my mentality at that point, we had only been dating for about six months and my health declined quickly because of NF and I'd had a spine surgery and was facing deafness and brain surgery. That's a lot for a lovely young woman in med school to have to decide. This is something I want to choose. I can't choose not to do this. I can't walk away from it. She can, and we've been married 20 years now, I guess she still could, but fortunately she hasn't. And I thought, "Well, I don't want you to do that for me. I don't want you to walk away from this for me." And I don't think I've ever loved her more than in the moment where she said, "What makes you think this is about you?"

Dr. Douglas Beck:

I love it.

Matt Hay:

"I'm choosing my journey for what's best for me." She does not like making things about her. And so I like to point out that she is as wonderful as anyone reading the book might think she is. She really is that great.

Dr. Douglas Beck:

She really is. Yeah.

Matt Hay:

And she's perfect for me. I think bigger, she doesn't represent a mom or a wife on a pedestal. She represents a support network and a support structure that anybody going through a hard time. You mentioned earlier on, Doug, an ability to get back up. I can get back up, because I have somebody extending a hand to me to help me up. And my journey has been hard. I mean, I've had 20 surgeries and I'm deaf and I hear with 12 electrodes and I don't have balance or facial movement or blinking or tearing, but it's easier when you have a support network around you physically, emotionally. And so my wife, Nora, has been that, but she also represents that support network that I hope everybody finds or has.

Dr. Douglas Beck:

That's absolutely incredible and I'm so happy for you. You're a very lucky man. But she's a lucky woman as well. One of, not one. Quite a few of your surgeries involved eyelid surgery. And I'll just do the backstory on that. With acoustic neuromas and other skull-based tumors, sometimes the nerves that innervate the eyelid that allows it to open and close, get a little bit beat up in that surgery. And what happens then is we have to tape the eye closed and we have to keep it lubricated to prevent corneal damage from occurring. And in your case, you had a self-closing spring installed and that didn't work out so well. And it took a while for that to come around and be a success story for you.

What we used to do when I was at House in the early and mid '80s, on patients who had facial weakness following surgery, we would actually put a tiny gold plate into the eyelid so that the eyelid would drop. And that's a different nerve than the one that picks it up. And when I was reading the very detailed story about your left eye and all of that, I was wondering, but obviously the surgeons made the best decisions with the information they had and you've got a wonderful outcome at this point.

Matt Hay:

I thought it was important to include that. Again, certainly my story is just about me and my experience, but I tried to come at this from a perspective of it's not a story about losing your hearing and having eye surgery. Certainly that is, I write about that, but I try to look at it from a perspective of you might see the challenge I'm going through and people might think, "Oh, Matt can't hear well." They don't realize not being able to tear or blink causes more day-to-day difficulty than not being able to hear. And I think that's representative of, we might think we know what someone is going through, but we don't. Or the thing that might be an obvious challenge for someone based on our impression of them might not be the thing that they are really struggling with at all. And I think, I hope that could be relatable to a lot of people reading that.

Dr. Douglas Beck:

I think it's so important, Matt, because it's a topic that does not come up in clinical conversation often, but it's a major problem in somebody's life when you can't blink at a normal rate and your eye doesn't self lubricate and you can't clear debris and your cornea dries up. And when we talk about facial weakness, you and I discussed this a few weeks ago, but there's a scale that we use to grade facial weakness and it was developed by Derald Brackmann and John House probably 30, 35 years ago. And it goes on a grade one through six, and one is perfectly normal, six is no motion at all. Two is a mild weakness. And when you think about Sylvester Stallone, Rocky, he had probably a grade two if I were to look at him. Grade three is mild with eye closure. Grade four means you don't have eye closure and a mild or moderate weakness. Five, no eye closure and a more significant weakness, and six, no eye closure and you can't move your face because of the facial nerve activity that happened during surgery, iatrogenic injury.

So you can see of levels four, five, and six all involve bad or weak or no closure of the eye. So it does happen, but it's not something that most patients ever talk about or discuss. And very few have had to have quite as many surgeries for that issue as you did. But I'm not doubting the surgical decisions at all. I think you had a unique situation that they dealt with very well and it came out pretty good for you. So you went through all of these experiences, and I would be remiss if I didn't mention that your actual surgeon, surgeon, in addition to the neurosurgeon, Dr. William Hitselberger, was a neurotologist and a dear friend, Dr. Derald Brackmann. What was your experience with Dr. Brackmann?

Matt Hay:

Yeah, that's exactly right. And so again, it sounds silly to say, but boy, there was never a better time in history to lose your hearing because if it had happened five years sooner, I would've been a step behind each one of these things. I mean, the FDA approved the ABI four years before I had it implanted, knowing what I know about medicine now, the FDA doesn't approve something and it starts getting implanted the next day. So four years is actually a pretty quick turnaround when it takes time for someone to be exposed to it, trained on it, develop an expertise in it. So it was still very cutting edge at the time enough that even Dr. Miyamoto said, "I'm not comfortable. I've done hundreds and hundreds of CI surgeries and I'm not comfortable doing this. I think you need to go to LA." And you are right about the House-Brackmann facial scale. Because when I woke up with facial paralysis initially, you think, well, if the scale for measuring this is named after my surgeon, that's probably a good sign.

Dr. Douglas Beck:

That's a good sign.

Matt Hay:

The flip side of that is, well wait, how many times have they had to deal with this that they had to develop a scale? So I chose to think of it in a more positive manner. But another aspect of that though is hearing loss is invisible. Other people can't see hearing loss. It's presumed to be a physical thing that people try to manage. It's difficult unless you have been there to appreciate the mental and emotional side of maybe feeling left out or not picking up on something or being the only one in a room that doesn't know why someone is laughing, to add on top of that facial paralysis where, hey, if I look in the mirror, I look the same whether I can hear or not. But when you look in the mirror and you have facial paralysis and that face looking back at you doesn't look like you think it's supposed to look. There's a psychological and emotional total. And I was not prepared for that. I had spent a decade preparing for hearing loss. I had not spent a second being prepared for, it's not just I can't blink, but I can't smile. My coping mechanism for dealing with hearing loss.

Dr. Douglas Beck:

And you're right. I mean, you can't blink, you can't smile, you can't eat comfortably. Food tends to fall out of the paralyzed side.

Matt Hay:

Yeah. Oh, Doug, I've never met a bowl of soup. I can't spill. If I have chili, you'll know it for a week.

Dr. Douglas Beck:

You will. Okay. Now before I let you go, because you've been very gracious with your time, two things I want to talk about. One is I remember in the book, and I love this, I reread this section a couple of times over. You knew you were going deaf, you knew you were going to lose your hearing. And so you thought about this and you and I have very similar tastes in music, but I didn't know what you chose. You chose that you wanted to have a song to listen to as the last song you would hear through your own natural ears. And it had to be a very moving, very emotional, very brilliant song. What song did you choose?

Matt Hay:

My wife and I wake up every day to Here Comes The Sun, and we have a little Sony alarm clock, CD alarm clock at the time. And that was our wake-up song. And I write about this pretty extensively, is that last day of hearing, and I don't want to give it away, but the last day of hearing, if you can only hear one more song, what's that going to be? If you can only hear one more thing, what that's going to be? And so Here Comes The Sun was the song that played a pivotal role in that. And then the next day you can't hear. There's a lot that goes into that. But you're right, the title of the book is Soundtrack of Silence, because I just had this really unique circumstance where if I'm never going to hear again, what songs do I want stuck in my head, what songs do I want to be thinking about in my head for the rest of my life?

And what I didn't expect is... So that in itself is a story. But I think what is particularly unique about this is, I mentioned earlier we had kids after I lost my hearing, and that was the additional kick I needed to say, being able to hear oven timers is not going to be enough for me, or maybe that's what I will live with, but it won't be for a lack of trying to do more. And I was not trying to do more. I sort of self-diagnosed Auditory Brainstem Implant training and said, if I have these songs stuck in my head and I was listening to them with such intention, why don't I start listening to those again in hopes that those songs in my brain can tell my ABI, this is what those songs are supposed to sound like. You think the opening chord of Let it Be, there is bum, bum, bum, but it's not. It's this.

And so can I start creating an argument between my brain and the technology, the 12 electrodes, because right now my brain's losing that conversation. And so can I use John, Paul, George, and Ringo to help convince my ABI this is the way things sound? And again, some more detail, the book's a seven or eight hour read, so it's hard to cover all of this in short time. But I talk about the day that I was able to recognize a song again. And that was a very powerful moment because not only was music the thing I turned to ahead of my hearing loss, but music was the thing that I can attribute to improving my hearing loss even after getting my implant. And I don't think that's an aspect of music very... Maybe you thought about that as a dream in the basement at the House Ear Institute in '87, but that was a real part of my life.

Dr. Douglas Beck:

This is an amazing self rehabilitation program you put yourself on, and I'm just thrilled that you did it. And it's one of those things that we used to encourage people back in the '80s when they got Cochlear Implants, we would say books on tape, read familiar things, have people that love you read to you so that it's a script that you're already familiar with. So the words, the story, so you can start to take in sound and line that up with your brain because your brain is plastic through your whole life. It's more plastic when you're younger, but your brain can adapt if given good information.

Matt Hay:

Well, and what was unexpected for me was once I started thinking about things in terms of brain hearing and brain learning versus... Because again, my ears don't do anything except keep glasses from falling off my face. So everything I hear is directly to my brain. So all of a sudden, just in the last few years, my audiologist has started using the phrase brain hearing. I've had the good fortune to work with just in the last month, Nina Kraus and Carol Flexer and Angela Alexander and Carolyn Herbert at IU, and all of these just brilliant women that are focused on brain learning. And when Angela Alexander started sharing with me some of the work she was doing in auditory processing disorder training. I agreed to work with her and I said, "Angela, I'm on year 16 with my implant. You're not going to help me."

At the time, I was working with a wonderful company, still a wonderful company called Redux. And I was like, "I'll do this with you if you in exchange, you say nice things about Redux." And so she said, "Let's just see what happens." And we spent about 20 hours together working on phonemes. And really my life had been trying to hear better by osmosis and then focusing on individual songs and then lines of songs. It took my conversation with her in the work she was doing with Jack Katz to say, "Let's not work on a line. Let's work on a ma, pa, ta." And again, I was like, "I'm at 67% open aided speech recognition with an implant, Angela." Researchers are telling me they've never seen somebody with an implant do that well, so let's just be cautiously optimistic here. After about 20 hours of training, I remember driving to work one day and the line came on, "When I find myself in times of trouble, Mother Mary comforts me." Which was the line I had been singing in my head the day before we had been working on ta, ta, point to ta, say toothpaste.

And that next morning and driving to work, I heard, Mother Mary comes-

Dr. Douglas Beck:

To me.

Matt Hay:

... to me. And I had not heard to me, I had not heard the T in there in a decade.

Dr. Douglas Beck:

Spectacular.

Matt Hay:

Yeah, there's some correlation, causation there. But a day before we had been working on that individual sound. And so following 20 hours of phoneme work, my open aided speech recognition testing after 16 years went from 67% to 96%. And I did not do anything different other than working on, I guess some still relatively new concepts in how does your brain hear stuff-

Dr. Douglas Beck:

Fantastic.

Matt Hay:

... versus how do your hear stuff. So I owe a lot, like I said, the right place, been a better time to be deaf.

Dr. Douglas Beck:

Absolutely. And all three of those women, I mean, Angela is brilliant. She's in Australia, so you're doing courses with her online, right? Carol Flexer, past president of AAA, and she is a professor emeritus at the Ohio State University. Carol and I wrote a lot of articles together. She is such a joy to work with. She is so much fun and so smart. And of course, Nina, you mentioned Dr. Nina Kraus. She's actually a biologist and she is at Northwestern in Chicago, and her book came out about two or three years ago. Also a brilliant book. Anybody who hasn't read that really should. But Matt, you've been so generous with your time. I want to totally endorse the Soundtrack of Silence. I read it, I got teary every now and then. It's a very deep story. It's not just about Auditory Brainstem Implants or neurofibromatosis, it's about living with and living through these situations and managing them probably better than most people could have. And I'm just so proud of you and so thrilled with your success. I really want to encourage people to buy the book. I just thought it was a spectacular read and it's a fun read and it's a feel good story because you just are amazing.

Matt Hay:

Well, I appreciate that, Doug, and I will say, I would not be here if I didn't know you and the work you're doing and the Delfinos and the work that they're doing. Blaise Delfino was the first person that ever said to me, "Would you like to see how really our measurement works?" And to be able to observe the way that his team and the best practices that they follow and the patient approach, these are the kind of people that in my professional hearing care journey, in my patient advocacy journey, these are the people that I want to work with and learn from and serve patients alongside. So even though I'm not a hearing care professional, I'm here because you guys are the people that I want to align with, might be seem a little bit strong.

Dr. Douglas Beck:

Thank you. Thank you.

Matt Hay:

But you guys are doing the work that I want to be a part of. So thank you for doing that.

Dr. Douglas Beck:

I'm so appreciative of that. I couldn't agree with you more. Blaise Delfino is a powerhouse, very energetic, enthusiastic, an intelligent young man. And yeah, he's wonderful. Matt, thank you so much for all you've done for your advocacy and for telling your story and for writing an incredible book.

Matt Hay:

Well, thanks, Doug. I hope other people enjoy it as well.

Blaise Delfino:

Thanks again for tuning into The Hearing Matters Podcast today. I'm your host, Blaise Delfino. And on behalf of our entire team, thank you so much for the support. Truly, it means so much to us. Head on over to the Apple Podcast app and share your thoughts. What did you like most about this episode and what do you like most about our podcast? Five star reviews are always appreciated. And also head on over to Instagram, hit that follow button and let's connect. And as a team, we can continue to help our community hear life story.