Composing a Soundtrack of Silence

00:00:00] Announcer: Welcome to episode 40 of empowEAR Audiology with Dr. Carrie Spangler.
[00:00:15] Carrie: Welcome to the empowEAR Audiology podcast, which is part of the 3C Digital Media Network. My name is Dr. Carrie Spangler and I am your host. I am a passionate audiologist with a lifelong journey of living with hearing challenges and this vibrant hearing world. This podcast is for professionals, parents, individuals, with your own challenges and those who want to be inspired.
[00:00:44] Thank you for listening, and I hope you will subscribe, invite others to listen and leave me a positive review. I also wanted to invite all of you to visit and engage in the conversation on the empowEAR Audiology Facebook group. Transcripts for each episode can be found at www dot three, the number three, C digital media network dot com under the empowEAR podcast tab.
[00:01:18] Now let's get started with today's episode. Welcome to the empowEAR Audiology podcast. I'm really excited today to introduce my guest, Matt Hay. And I'm going to give a little background about Matt for all of you today. And then we'll get into, I have a, some of the question and answer of everything that he has to say.
[00:01:41] And I'm just going to read his bio up on his website. Matt was a sophomore in college when he finds out that he is going to lose his hearing because through the early years of his diagnosis and denial, but as his hearing aids get bigger and bigger, Matt realizes he wants to capture the sound that is slipping away.
[00:02:03] His girlfriend voice, the click of her heels, and especially the songs of the invincible youth. Matt starts listening to music with a new appreciation, truly studying it he curates a soundtrack for the rest of it. Between each song, there is a coming of age story about freedom, tragedy and falling in love.
[00:02:27] When maps hearing eventually fades to nothing, the silent soundtrack in his head takes on a role he never imagined the audience for his story of overcoming the physical, mental, and emotional challenges always changes, but his authentic delivery never dies. He shares his message and hopes Someone from ever, ever feeling as last helpless and alone, as he did the day he woke up death, the day sound became only a memory.
[00:02:59] So with that introduction, I know we're going to have an amazing conversation today that is going to be uplifting and really about overcoming obstacles. So Matt welcome.
[00:03:11] Matt: Well, thank you very much. I, I hear you say all of that just now as an intro, which was, I know where you got that, but I think I'm also the guy
[00:03:20] There's dishwasher broke this morning and was annoyed that I have to hand wash utensils. So you know, a lot of different facets at play there.
[00:03:29] Carrie: Yeah. Well, thank you for being a part of this. I know. I'm excited cause I felt like just in the past, maybe three or four months, I pathjs keep intersecting, whether it's through social media or a couple of other networking opportunities and I'm excited to actually get to meet you virtually in person and and get to know you a little bit better.
[00:03:53] So can you just start out a little bit of just reviewing a little bit of your story for an audience today?
[00:04:01] Matt: Sure. And I I'm particularly grateful to be here because like you said, you and I have had some parallel paths. But you come at this from the perspective of the perspective of a doctor of audiology.
[00:04:15] And I came from it from the perspective of a guy that just failed a lot, trying to hear it better. And wish I had met you and your colleagues you know, years sooner. So it's, it's pretty surreal and, and humbling for me to be a part of a conversation with so many professionals that do this. So I I'm 45 now and I was diagnosed.
[00:04:35] I started losing my hearing my sophomore year of college at Indiana University, which would have been 97, 1997. And when you're 17, I guess, 18, 19 years old, your sophomore year of college, not a whole lot of people are losing their hearing. So it was kind of a weird experience. I didn't know exactly where to go or what to do.
[00:04:53] . And I'm very, very fortunate that when my parents finally talked to me and to seeing a hearing care professional I saw someone who made no effort to sell me a hearing aid. They made an effort to treat me and treat whole me. And they said, based on the outcome of what we're saying, we're not sure we can help you.
[00:05:16] So before we make any assumptions, we think you need to see an ENT. And so I saw an ENT who got me set up for an MRI and was diagnosed with bilateral acoustic neuromas which is fancy talk for, I had two marble size benign tumors on my hearing nerves. And I don't think it wasn't until recently that I realized how lucky I was to have a hearing care professional will say, I think you need more help because they could have easily fit me for an in the canal aid.
[00:05:48] Ah, I've just been hearing care. I can legit save lives. So based on the results of that, that MRI, I was diagnosed with neurofibromatosis specifically NF2 to which at first you've probably never heard of outside of maybe one day, one chapter of a book in grad school. But neurofibromatosis is a disorder that causes nerves to grow our tumors, to grow on any nerve in your body.
[00:06:17] They grow on the sheath that surrounds your nerve, which is like if you've ever plugged in a cable and it feels like rubber or the cable inside is actually electrical, just like a nerve. And it's covered with a rubber coating. That's just like your nerves are the same way. And so I have a tumor that could grow anywhere on any of those nerves.
[00:06:36] And I have several dozen, but the two most distinguishable were on my hearing or. And over the next 10 years just like my doctor said would probably happen. I ended up losing my hearing because of those nerves, those tumors.
[00:06:51] Carrie: So after you found out when you were 18 or 19 and you started going through the process with your ENT, at what point did it got to the point where they needed to do surgery and how did that process go for you?
[00:07:08] Matt: But I think, and I didn't realize this at the time either, but when you get, whether it's hearing loss or vision or any sort of physical ailment that you, once you kind of realize, Hey, this is going to be around, this is something I have to deal with. There's a grieving process. And I was oblivious to that.
[00:07:28] And I didn't know I was going through it at the time, but you know, you just, same thing. You go through this denial, you go through a negotiation, you go through an acceptance And I, I spent years in the denial of, Hey, this is going to happen to me, even though my hearing scores were basically saying that this is not whether or not it's going to happen, it's happening right now.
[00:07:48] And so my hearing aids got bigger and bigger and we eventually got to a point where we said, okay, we know I'm going to lose my hearing because my nerves are no longer going to work, which is, you know, I couldn't get a hearing aid to help with that. You can't even get a cochlear implant to help with that.
[00:08:05] And I said, we have, we're going to have to remove the larger of those tumors. And there's a relatively at the time had just been approved by the FDA, a device called an auditory brainstem implant. That, I mean, literally it looks like a CI, but it bypasses all of your natural hearing and they sewed 12 electrodes directly onto your brainstem.
[00:08:26] And some really smart people say, we think that's the part of your brain that processes sound and. So they implant that and it takes eight weeks for them to turn it back on and because they have to wait for it to heal. And you just hope that those are the 12 electrodes work. In the meantime, you know, brain surgery just by itself is no casual thing.
[00:08:49] And I woke up with facial paralysis and couldn't walk and had double vision. And so it was kind of like, all right, I was really worried about my hearing, but I have a whole lot of other stuff. Like I can't get out of bed and I can't move my legs. So you start to learn to take things one at a time. And as I worked on that, we kept waiting and hoping when they do turn that implant on that, it's going to sound okay.
[00:09:13] And fast-forward day, weeks later, they, they turn it on. And this is at the House Ear Institute in Los Angeles. And they said with an auditory brainstem implant, you're probably just going to hear life sounds, which is like oven timers or police. But when you now have been deaf for a few months oven timers and police sirens sounds like Beethoven, right?
[00:09:35] I mean, I would love to hear it often times. So they turned it on and it did exactly what they said. It was just all buzzing. And I could hear shoes on the floor, but I couldn't distinguish that between somebody saying hello. And so though I was so grateful that it worked and that lasted for about an hour and then I wanted to sound better.
[00:09:56] So I very quickly moved from, oh, I'm so glad this worked too. It's not good enough. It's not good enough.
[00:10:04] Carrie: Yeah. So about how long did it take for you? I guess, can we go back a little bit about the after the surgery? You said you had the double vision, you had, you weren't able to walk you dizzy, all of those different components.
[00:10:21] What did you have to do to get yourself walking again and being able to see again, I mean, I'm sure at this point, hearing was not even something that you were very concerned or you you're concerned, but life things were happening to you.
[00:10:37] Matt: It really did come down to priorities of what do I need to do to get through today.
[00:10:43] And your world goes from being, you know, this big, to this big, like what is you know, with the facial paralysis, the first thing I need to be able to do is swallow so I can eat. And then how do I blink so that my eye doesn't get red and irritable and damaged. And so it's kind of funny. Do you think I have this invasive brain surgery and the things that I'm working on right now are swallowing and blinking, which are certainly things.
[00:11:10] I took for granted before. And so you work on that and then you start thinking, all right, well, now that I can eat, I want to be able to move. And at first it was out of bed and into a wheelchair. And then after a few weeks of rehab, you can move your feet. And I said, okay, now I can be in a wheelchair and kind of get around on my own.
[00:11:33] But now I want to walk. So I moved from few weeks of a wheelchair, a few weeks into a walker, then a few weeks on a cane. And it just the important thing for me, and unfortunately I've always been very goal oriented, was to celebrate, identify like small measurable goals. And then celebrate those small measurable wins.
[00:11:55] So by that, I mean, moving to a walker was a huge deal. So, so what if I was at deaf 24 year old using a walker with little tennis balls and I was in a long-term care facility and I was the only one they were under 60. And you could focus on that part and say, well, this kind of stinks. Cause my friends are all at the bars in Chicago watching the Cubs game or whatever.
[00:12:18] And here I am on a walker. It was important for me to celebrate small wins and recognize that I moved from a wheelchair to a walker in two weeks. And we didn't know if I would ever be able to do that. Recognizing those successes are enough to say, okay, well now my goal is going to be to get from a walker to a cane.
[00:12:40] And then once I can do, that's how I'm going to fill my time and occupied my mental focus because eight weeks from now, I hope I'm going to have my hearing back. So I think a lesson I learned very quickly was measurable progress today. I took two steps with a walker, you know, the next day I took four and celebrating that.
[00:13:01] So that was enough to kind of carry me to a point that I was on a cane and very unsteady without a cane when they went to turn my implant on. And I think I had learned some good lessons through that process because instead of being very frustrated right out of the gate with the fact that things didn't sound as well as I hoped.
[00:13:20] And I think anybody that gets fitted for a hearing aid probably goes through the same thing of like things sound different, or I don't like the way, you know, whatever sounds versus what it used to being able to say, okay, well, this is what it sounds like today, and I'm going to work at it and I'm going to wear it and I'm going to practice with it.
[00:13:39] And then maybe not today, maybe not tomorrow, maybe not next week, but soon I'm going to get another test. And it's going to show that I have improved. And even if that's a little bit that's enough of a carrot on a stick to keep me moving forward and working harder
[00:13:56] Carrie: I mean, for me, for the cochlear implant, I remember someone telling me who had gotten a cochlear implant before say think of your activation day as your worst hearing day ever.
[00:14:06] Yeah.
[00:14:06] Matt: Yes expectation management is key. Yeah, it is. It is.
[00:14:12] Carrie: You have a lot of grit and determination for going through, and I love your analogy, like celebrating the small steps along the way, and having a, you know, those small goals. Who helped you with that mindset. Did you have people surrounding you that would like those people who kept cheering you on to that next step?
[00:14:39] Matt: So I'm very fortunate to have a mom and dad that backed me up in everything that I did growing up to, so I guess sort of. Set the table for that. Yeah. My dad taught wood shop in his mentality and everything was just work hard, work, hard, work hard. My mom taught kindergarten and her mentality was just be kind to be kind, be kind.
[00:15:01] That's a pretty good combination of work hard and be kind. I wasn't married at the time, but was dating my now wife of 19 years and having her there and her patience and understanding. But it's also easy when you have all of this happen to you with health stuff and it's okay to get self-involved because there is a little bit of like self preservation.
[00:15:26] So I think I learned the hard way of, well, I know I learned through a lot of failure. This is again, whether it's hearing loss or any other physical or emotional or mental thing you're trying to overcome is. If you're fortunate enough to be surrounded by people that are there to support you, give them a lot of patience because there's no, they're never going to be able to understand what you go through.
[00:15:51] And I remember being so frustrated and saying like, you just don't get it. You don't understand why this is hard, why it's exhausting, why it's lonely, why can be surrounded by this support and still feel totally on my own and alone. That's not their fault. So having patience and a little bit of grace with them and recognizing they're doing the best they can, and then doing your best to communicate and maybe what you're going through.
[00:16:21] And they're likely going to give you the same kind of patience and grace and say, all right, he's snapped at me about this. And all I'm trying to do is help get him into the door. And I remember coming home on a walker to my mom's. And she's got knickknack stuff, everywhere, kindergarten teachers, right.
[00:16:39] Woodent necklace and like little like decorative stuff everywhere. And I walked in and I tripped over the welcome rug that had some kind of like feather little saying. And then I turned to unhooked from the rug and I knocked over like a wooden cat's Meow village that she has on. When I turned to fix that my arm got caught on the coat rack that she had next to.
[00:17:01] No, I don't. I was just like, I felt like a Saturday night live skit and I'm only six feet into the house. But all she wanted to do was make me feel at home and welcome. And so I think some of that that determination, it was certainly challenged. But a lot of them came from the upbringing, but to just having patience with the people around you and.
[00:17:25] Doing your best to over communicate where you're coming from. There I know that I say all that as if it's that easy, because I'm still not very good at it. And I've been working on it for 45 years. But I feel like the times where it got really hard, if I stepped back and said, well, am I explaining to them whether it's my doctor or my girlfriend at the time, or my parents am I explaining to them why I'm so frustrated because sometimes, and here's an example of that is that I was in physical rehab and I had a therapist who just had me riding an exercise bike, and I thought there's so much I can't do.
[00:18:04] Why am I just sitting on a bike? And so once I explained that to her, she explained why I was doing that. And then the next day we mixed in some stuff was like a medicine ball. And I was happier because I felt like I was doing a thing. She was happier because she knew that she was challenging me and engaging me, which is what a good physical therapist to do.
[00:18:26] But it all came back to me, not communicating well enough. And I think when you improve that communication, you start to see some better outcomes and it's a lot easier to be gritty. And it's a lot easier to persevere when you see, okay, well this week I'm better than I was last week. Yeah,
[00:18:44] Carrie: no, those are all good things.
[00:18:45] And it is, it's hard for people who are not living with, you know, hearing challenges that hearing loss to understand the everyday challenges of communication. Yeah. And even you can't, they're not in your shoes. One question I have for you is I know. Auditory brainstem implant. So pretty rare. It's not as common as like a cochlear implant.
[00:19:12] Did you have anyone in your life that had gone through the, the auditory brainstem implant process that you were able to talk to reach out to?
[00:19:25] Matt: So that is a great question because this was been around 2004 and I tried, I mean, when I was diagnosed with NF, I went on the Netscape navigator ended N you know, they, you couldn't Google something because Google didn't exist.
[00:19:39] So I Netscape and, and there were no hits, I mean,imagein going online now and Googling something and not even getting like, sorry, the internet has no answers. And so when I did the same thing with an ABI. There were people still, maybe like AOL messenger was just sort of starting. And so my hospital, the ENT in LA tried to connect me with somebody and their experience, I think in life was very different than mine.
[00:20:09] And they only had really negative things to share, which kind of made me feel worse. And I felt very alone. And I, in you, you mentioned this in the intro, that experience of losing my hearing and just wanting so badly to be able to tell us, have somebody say, here's the part that really stinks.
[00:20:28] Here's the part that's hard. That gets better. And here's the part that's great. I, I just wanted to get input and I had nowhere to turn for that. And I think it, that was a pretty fundamental change for my kind of long-term goals in life is I thought, Hey, wouldn't it be great. To help people not feel the way that I feel right now.
[00:20:51] And I had no idea how I was going to do that. And it took me 20 years to figure out how I was going to do that. But in the back of my mind, it was always how this was one of the scariest times of my life. What if I could for a living do something that helped other people not feel and share the scariest time of my life and have them experience the same thing.
[00:21:12] So I didn't know what to expect. And I think because of that and, and this is anecdotal and I, you, you, you only get one chance to live life. So I don't know for sure, but it took me decades to seek out professional help to get better with my hearing. And I don't know if that was time that I needed, I've had my implant for 18 years now.
[00:21:35] I don't know if I could have improved in those first 10 years, because there's a lot of your brains relearning to process sound. But I didn't make any effort. You know, I mentioned before they turned it on and I heard noises, I, and everything sounded like gravel trucks. Everything sounded like wadding up aluminum foil.
[00:21:53] Somebody would say hello, when it sounded like wadding up aluminum foil in two beats. And then everybody said, well, Hey, that's pretty good because we didn't know if the ABI would work at all. And I think I got a little bit lazy because everybody was telling me I was doing well with it. And so I had no standard to measure myself by and I, I quit trying for about a decade.
[00:22:17] I quit trying. And then my kids were born and I couldn't, it was a scary feeling because if one of my kids said, Hey, dad, help or something. I didn't know why it's only one sided. Now I'm still deaf on this side. You can't tell where sounds coming from you. Can't tell, who's asking for that. And that's that was the motivation I needed to be like, all right, I got, I, I need to give this a real chance.
[00:22:45] And so that's when the music aspect started coming into play, as I started using sort of self prescribed music therapy. And and that helped a little bit too of, you know, I listened to a lot of beetles before I lost my hearing. And so I started listening to Beatles again. And even though I didn't sound anywhere near the same, I slowly started picking up things like, Hey Jude, or, you know, the refrains or chords from let it be.
[00:23:12] And I think it acted as a bit of a Rosetta stone for my brain of, oh, well, your ABI has been telling us things, sound this way. But now we remember from in Bloomington and your dorm room listening to this song. So now my brain's going to tell me ABI that things actually are supposed to sound in this play. And I, I kind of envisioned this like argument between my brain and my implant.
[00:23:36] And over time, my brain started winning those just from muscle memory of this is the way that song used to sound. And so I really credit music taking from my sort of my hint recognition scores, kind of a universal understanding of speech understanding my HINT scores went from the mid thirties to the mid sixties, but it took me close to 15 years to get there.
[00:23:59] And I credited music for that progress. I just wish I had had somebody say sooner, you know, there's things out there that could help you beyond. Kind of existing in the world.
[00:24:12] Carrie: And I know I'm kind of getting ahead of myself too, but recently you've also participated in some more like one-on-one therapy for auditory listening.
[00:24:23] Can you share a little bit about that?
[00:24:26] Matt: Sure. And this is, this was I don't know, serendipity is a great words, unexpected gifts, right? You'd think that I would have learned from not getting better over 10 years not to get lazy, but that's exactly what happened. My HINT scores went from 30 to 60 and I said, and everybody, my audiologist said, wow, that's great for an auditory brainstem implant.
[00:24:47] And so I got lazy again. And so for the next three or four years, I stayed right there, but I was, I couldn't use the phone. Things still sounded very robotic and muffled. But I could tell the difference between the way my son said, Hey dad and Louie, my daughter would say, hi dad, it's Maddie. Like that was enough for me.
[00:25:07] And I got lazy as I continued to kind of flow through that, I was like, dude, is this really all I ever, like, I don't want to be able to, am I not going to use the phone ever again? Around that time technology with, you know, the video calling that we're using now, I use Otter live transcript, live transcription, and I started having these other things.
[00:25:28] And I was like, gosh, I feel like I'm almost there and understanding what people are saying based on what I see and read. So I got a little bit more motivated and I work in audiology care now and had seen a name of somebody working in auditory processing disorder training, which I had never heard of.
[00:25:46] But I sell a, a dryer for hearables and I thought, well, this person seems to be very involved in the audiology community. I'll call out, I'll reach out to her and maybe I can sell her something. So I reached out to a woman in Australia. We didn't, we hadn't placed any devices in Australia. So there's a woman by the name of Angela Alexandra.
[00:26:05] And I called her 100% with the goal of selling her a Redux drying system. And she made it clear out of the gate that that's not what she did. She focused on more of this thing called the auditory processing and I nodded and acted like I knew exactly what she was talking about. And somewhere in that 90 minute sales call and it ended up being like a terrible sales call cause she had no interest in buying.
[00:26:33] The conversation became much more about brain, the way my brain processes sound through an ABI and how unique that was. And also how the industry is starting to learn. And science is starting to learn about how integral the brain is in hearing. You know, we think we hear with your ears, but yours don't really do anything except pass along vibrations to your brain and your brain.
[00:26:59] So you actually hear with an Angela said, Hey, I would like to study you. And so I agreed at this point just because she's a better salesperson than I am, and she talked me into it. And the outcome of that was we started meeting for a couple of hours a week. And this was just last year. And in one year of having a professional say, I'm going to help you, not with life sounds and not with song lyrics, but I'm going to focus on individual sounds of words, which I learned to call them phonemes, which audiologists know, but most, most normal people though And we've.
[00:27:35] So it was everything from down to, without seeing these speak, we're going to work on the sound of ma versus NA or PA. I mean, the idea of me trying to identify the P sound it was just like, there's just no way I can do this. And so we went through the testing and I failed miserably and we did it the following week and I failed miserably.
[00:27:57] And somewhere over the course of the next 10 weeks, I started failing less miserably and less miserably to a point where I was very genuinely hearing the sounds that she was making and my HINT scores keep in mind, it took 16 or 17 years to go from zero to 60%. It took a one year of that auditory processing training to go from 60 to 90.
[00:28:25] And I don't, this is anecdotal. So I don't want to pretend like you're going to see a 30 percentage point increase in a year. I don't know if that's great. I don't know if it's bad. I don't know. I just know that's the experience that I had. And there were a lot of lessons for me there because one step I need to stop being lazy and accepting it wherever I am that let other people define this is good.
[00:28:51] Like I need to be the one that defines is this good enough for me? And the value of seeking professional help. And this is really kind of sports analogy. I'm very analogy driven with the sports analogy of coaching is great. During COVID my son and I tried to take up. Well, I thought I'm going to wait to take a lesson until I get good enough.
[00:29:13] And then the lesson will be helpful. And so every day, five days a week, I would go out without a lesson and started out terrible and never got better. I was just practicing bad habits. I didn't know what I was doing. And I, the idea of wait until you're good to get a lesson is just ridiculous. I got better in one 30 minute lesson than I did in 30 days.
[00:29:35] They're trying to do it on my own. And that if I'm so willing to, and that's pretty accepted in sports, why in the world would I do that with my hearing? And so I, I credit Angela and the work that we did together, it was me finally saying, okay, I'm going to get a hearing coach. And and she's going to help me, even if she doesn't, if I don't get better.
[00:29:57] She can give me some good habits and good things to work on. I did get better, but that was just a lucky fortunate outcome that wasn't even the goal.
[00:30:06] Carrie: Yeah. Your point is well taken, I think. And I'm just gonna speak from my own personal experience of going through the cochlear implant process and being an audiologist.
[00:30:17] I don't think we, and I'm just going to say audiology world in general does a really good job with that post implant coaching, auditory rehab as a, you know, much needed part of it. And, and I don't want to say everyone, but I just want to say, like, we, we talk about APPs. So we talk about, you know, listening to an audio book on, you know, or whatever it happens to be.
[00:30:49] But I would say there was a lot of value for me having a real person. I have what you call an auditory, a coach to that I went to, to help me make sense of, I want to say almost like learning a new language because you're listening to such a different signal than an acoustic signal. And your brain has no idea what it's listening, for.
[00:31:14] And by having someone who's benchmarking you, they can say, look, you started out like what you said. Look I, I would bomb to this, but now look where you're at. And it gives you motivation to be like, all right, I can do this. I can, I have somebody that's keeping me accountable, motivating me to take that next step.
[00:31:36] And that letting someone else define what good is having, you know you do that,
[00:31:43] Matt: And you're you're, that has been my experience as well. Is that because you live your hearing every day. So even if you have bad hearing, you're living your bad hearing every day. So if it does get better, it doesn't happen, you know, in an instant.
[00:31:58] So it's hard to recognize, oh, this got better. You know, even with vision, you can be like, well, I can read that better, or I can see that sign now, but with hearing it's you can't think, oh, well I hear that bird a little bit more clearly. Or so having those objective measures and having something on written down to say, did you know that even four weeks ago you were here and now you're here?
[00:32:22] It can be it's rewarding. It makes you feel good. And like, you know, like if you're dieting and you never see that you lose weight, if that's your goal, it's hard to say I'm going to keep doing this, but there's a reason there's reasons scales exist. Right? I mean weight Watchers has scales for a reason. There, this is the same way let's measure and show you the change that we're making.
[00:32:42] And in the point you make is about, and I don't know if lack of support is, is the right phrase, but I know I sought out help. I mean, I was actively looking for help and there was a CD rom now like, oh, Hey, here's a CD rom, well, Phil Nicholson didn't win the masters because of a CD rom, you know, you, you, you need that engagement.
[00:33:07] You need something that's constantly being adapted to you. I think I love the growth of the CI cochlear implant in the community for people to choose that path. And I work with an organization in Indianapolis called the St. Joseph Institute for the day. And the Indianapolis community is fortunate to have a great cochlear implant program with IU health and Riley children's hospital.
[00:33:31] So there are a lot of kids in Indiana at as young as 18 months that are getting these implants. And there's the, I think this assumption that they've been fixed, you know, like, Hey, we fixed that problem. And then they get into kindergarten and they're nowhere near ready. They're not on par with listening and spoken language with their peers.
[00:33:53] So what St Joe's does, is there a school dedicated to helping kids that get implanted in early age, prepare for mainstream education? And so I see the work that they do all the time and think, gosh, without the support, you have somebody that has all of these amazing tools and nobody ever showed them the right way to use them.
[00:34:15] You're like, all right, well, you got the nail in the hole, right. But you used a screwdriver to bang it in. You got a hammer there that would have worked great. If only someone had taken the time to show you how to use the tools that you have. And that's an area we'd love to see, continue to grow, because I don't know that the long-term solution is there's an app for that, or there's a CD rom for that, right?
[00:34:37] Yeah. You're right.
[00:34:38] Carrie: One thing that you said too is you did, you know, you said your HINT scores improved then, and you were happy about having someone coach you. What did you notice about your everyday life? Were there some things within your environment that you were like, I can hear better in this setting?
[00:35:01] Or what are some of those discoveries that you had?
[00:35:05] Matt: So there, I'm glad you asked that because I just made them point about how. Because you live with everyday, it's hard to notice the change. So even going through the coaching, it was still, I wasn't really trying to identify a change, so I didn't know that it was happening.
[00:35:23] And I mentioned working with Dr. Alexander and one of the things that she would ask at the beginning of our therapy sessions was, did you notice a change this week or did they notice anything new this week? Which was great because sometimes the answer was no. And I, and to create an environment where I was comfortable saying, no, I didn't notice a change that that's healthy.
[00:35:46] I mean, it's, if we have that kind of being able to be that honest and not say, make something up, but it also forced me to be more mindful of what did I notice? And I mentioned the Beatles earlier. So I use that as an example, I have the same 60 S I have a 66 song playlist, and I add about two songs a year to that, but it's mostly songs
[00:36:07] Then I listened to a lot before I lost hearing and then songs that helped me as I was trying to recover. And there's a line that the Beatless line that says for, for a long time, I thought it was mother Mary comforts me and I was driving into work and it, and it said it's mother Mary comes to me and I hadn't heard the T in, comes to me in 20 years.
[00:36:31] And I remember rewinding and listening to it over and over again, you know, rewinding so old school, but backing up and listen to it over and over again. And it like, it was so clearly mother Mary comes to me that I was excited to tell her I heard a new line in the song and, and there's no way that's coincidence because there's no way I heard a distinctly T sound the same month that we were working on identifying the phoneme T.
[00:37:01] Yeah. And I think that the brain got lazy, like I said, had just gotten lazy and it wasn't, it wasn't listening for. And so when I heard it in a real world environment and something that I've been listening to over and over again, it was a very objective way for me to say that's gotten better. Ah that's and I, my wife and two other friends both commented that my, they could tell a difference in my speech.
[00:37:29] And I think it was because I was ennunciating letters that I had gotten a little bit lazy with. Like even now, and I said, I had gotten. It's very common for people to pronounce better. That's B E D D E R. And so even just little things like making sure I'm saying, using a T and better or a pen, I write with a pen, you know, but I, I, I, my daughter puts a pin in her hair.
[00:37:56] And so just identifying those different sounds people that are been around me almost every day for decades could notice that my speech or that may speech was a little bit more clear.
[00:38:08] Carrie: That's exciting. Those are all huge. I mean, there's small steps, but they're huge in the big picture, which is exciting.
[00:38:15] One question I have for you. As you had said, you never, you know, we didn't have Google and you'd never met anybody else with a auditory brainstem implant. And the person that you did connect with, didn't have a good experience now that you're kind of out there and people know who you are and you have been publicly sharing your story.
[00:38:40] Have you been able to meet or mentor anyone that is thinking about getting an auditory brain stem implant or who has gotten one and be able to coach them a little bit through the process?
[00:38:54] Matt: So yeah, the sort of answer to that is yes, certainly. And it is something I I feel a very heavy sense of responsibility because I'm not a doctor and I don't, I want to make sure people are aware that my experience is my experience.
[00:39:13] My experience is not the way it works or what their experience will be. It's kind of a weird way of losing my hearing. I, I, I don't know that I was the most empathetic person in the world before. Losing my hearing probably made me a little bit more empathetic and understanding that what you're going through was is difficult for you because it's you, and it's your life and your experience.
[00:39:36] I try to be more mindful of that. And I don't think I did very well with that 10 years ago. And so I do share my experience and tried to go back to what I said earlier, which is, I want to share with you the parts that were really, really hard because I don't want to pretend like I don't want you to look at my eight year 18 with hundreds and hundreds and hundreds of hours of effort and think that's day one.
[00:40:06] So that expectation management is a big part of it. So I wouldn't know. What's hard. And when I say hard, I mean, physically, mentally, emotionally where I failed like that, you know, I'm being short with friends and family or the first year after I was just spoke with someone this morning at 10:00 AM who's as a family member of getting an implant in March.
[00:40:28] And I said, one of the regrets that I have is, and I couldn't move my half of my face. I have a little bit of that movement back, but I still can't feel this side of my face. And I've had a dozen eye surgeries and have my tear duct is plugged and I have a platinum weight and my eyelid and I didn't allow a picture taken of me for a year and I didn't go out and do anything for a year.
[00:40:51] And my poor wife here, you were dating, we're now married and mid twenties in Chicago and the whole world's happening around us. And. I didn't go anywhere because I didn't want anybody to see me what I felt. I felt like I looked bad and felt bad. And the progress that I have made since then I know I, I miss and I wished that I had that first year to be able to come compare myself against, to say, okay, I might be frustrated with something today, but look how far I've come.
[00:41:22] And so my advice to her, for her family member was even if you just keep them to yourself that first year is going to be the worst. Like you said, day one is the hard is the worst hearing day. Make note of that, you know, be aware of what you can and can't hear whether you journal it or a photograph.
[00:41:41] Because it was, it gets better. It's encouraging to be able to look back at that day. I also tell them what's great about it because it's, I don't, I try to be a pretty good glass, half full person. So I tried to balance the expectation management with, you know, what, even if I mean, cause there was a summer where I couldn't hear anything and my wife and I had to work out a system where, when she would come home from work and I was home on disability, she would have to turn on and we agreed that she would flick the lights on and off as soon as she got in, because she would scare the tar out of me when I'd be sitting down, watching TV on closed caption and she would appear or throw a pillow at me being able to hear her footsteps, even if I didn't recognize they were footsteps, but the thump, thump, thump of heels on hardwood or oven timer.
[00:42:28] I burned a lot of pizzas that summer because I would forget. And I wouldn't notice until I would smell it or see the smoke.. Being able to hear those things is a huge deal is a huge deal. So just recognizing this kind of goes back to the small wins thing, recognizing that even if it's not what you think it's going to be on day one, there are still things out of the gate they're going to be better than where you were before.
[00:42:54] So yes, I do have those opportunities and it's something that I take very, very seriously because I know just how much I needed that. And I don't want to give anybody false hope, but I also want them to know that there are things that it's like anything else in life, you know, the, some parts hard, the some parts easier.
[00:43:14] So much of what I've experienced now with. There's a phrase that I love is the difference between a problem and an opportunity is your perspective. And so anytime I face a problem, whether it's hearing or NF related, I think, okay, that's not going to change. What can change is how I look at this? So am I looking at this as a problem, or can I shift and look at this as an opportunity?
[00:43:38] And that's really, really hard. But being like, I, I try to help other people think of looking at it that way, knowing that they're going to fail at it all the time, just like I do. But if you succeed at it even once a day that's progress. Well, I
[00:43:56] Carrie: just want to thank you by sharing your story with others, because I know from my perspective too, As an audiologist going through the cochlear implant process, it was still the people that had gone through the process personally, before me that were my sounding board that were my motivation that shared the ups and downs with me, which, you know, a surgeon or an audiologist or anybody else on that medical team, unless they happen to have an implant, they don't know.
[00:44:36] So it's people like you who are vulnerable and willing to be. Out there and share you a story that's really going to help someone else who is going through the same thing. So thank you for that. I just thought well,
[00:44:51] Matt: and I, I feel like I shouldn't say the exact same thing back to you because your patients in your community probably doesn't realize how, and I know you're going to like blush or say, oh no, but they don't realize how lucky they are to have you because I know your training and I know your background and I know the people that you work with and, and it's, it's sort of this best of the best of people that I admire in the industry.
[00:45:16] But you have such a unique perspective to offer your patients of having your doctorate, having the experience. But then on top of that, also being somebody who is out looking for stories to share, because you don't get anything out of this, you know, you, you, we, we, neither of us get anything out of this other thing, If there's somebody that can listen to this and have a better experience, then you and I win.
[00:45:43] That's the pay off here. That's, that's not a terribly common approach. And so I I'm, I'm very appreciative of you. You know, whether it's having me or anybody else on, because I agree the, I hope and think these stories can help. I
[00:46:01] Carrie: agree. And thank you for that too, but I feel the same about you that you've made such an impact too, and people are lucky to come in contact with you.
[00:46:10] One thing that I, before we kind of close up too, is that you have done a lot to raise awareness about the hearing loss and NF2 have to by competing and some very. Oh, what should I say? Challenging events, such as marathons and the iron man. Can you share a little bit about how you are raising awareness and other ways?
[00:46:35] Matt: Sure. So there was not, I mean, I'm guessing a lot of people listening to this have never heard of neurofibromatosis and it's actually not that rare at all. It just lacked some, some marketing support. I mean, for there's a lot of people that will phrase it differently, but I work in sales and marketing, so I kind of view it as a marketing thing.
[00:46:54] And I, I just thought if, if I sought out this information in 20 years ago, couldn't find it, there are other people must be as well. So what can I do? Well, we want medicine to treat this that doesn't exist so we can start raising money. Well what can you to do, to raise money. My, I credit my wife because when she and I were dating.
[00:47:16] I was in rehab. She was living with my parents coming to visit me and rehab each day. And so she decided to run a marathon and raise money for NF. Which is you pretty much have to marry the person who moves in with your parents and starts raising money and running a marathon for the disorder. They put you in the hospital.
[00:47:37] And so then the competitive side of me was like, well, if she ran one, then my goal, when I get out of this bed and moved from that wheelchair to walker, to cane a finish line, they literal and figurative finish line for me would be run a marathon with her. So we did that. We had a great experience.
[00:47:54] And so it just kept becoming, what more can we do? What more can we do? So I ran a couple of marathons and then I was just at a point in my life where. I needed some wins, you know, I just NF not just the hearing, but all the other physical aspects of with, I couldn't continue doing the job that I had effectively I couldn't travel and do everything I was doing because of the health-related things.
[00:48:19] And so I just needed a win and I thought, well, I can't do a lot of things that even toddlers can do. So what's something hard that I can do. And I decided, Hey, I'll have out an Ironman. And so I went to look at the day one that there's the 36 week training program for the iron man. I looked at week one and it took me 10 weeks.
[00:48:40] I had to do a 10 week training program to get in. Good enough shape to finish week one of the 36 week Ironman. And so I was able to finish that I did not win. I didn't, I didn't podium finish. But 15 hours and changed later finished an Ironman and then thought, okay, I needed that for we, we raised a lot of money.
[00:49:02] We raised some awareness, but more importantly, I just needed that win of saying, okay, yes, there are a bunch of things I can't do. And I can focus on all of that and get really down. But I just proved to myself that I can do this thing, that a lot of my friends who are out there winning at things can't do.
[00:49:23] And, and I needed that for myself. And that was really kind of a big moment for me. To get the courage and confidence to start getting more involved in hearing care, kind of led me eventually to Redux and where we're now drawing cochlear implants and an auditory brainstem implants and hearing aids for a thousand patients every day.
[00:49:47] Wow.
[00:49:48] Carrie: That is so motivating. And like you said, those wins are important and in all of our lives too, but it sounds like you and your wife have such an incredible relationship that it kind of captured the eyes and ears of Hollywood as well. Could you share just a little bit about that sneak peak?
[00:50:08] Matt: The do I, I would, I would, I would love to be on a fly on a wall and have my wife share her perspective, everything that I just shared and see, see how closely that was aligned.
[00:50:18] We what. That's certainly the last few years have been challenging for a lot of reasons for folks. One benefit it gave me if working from home is I've been doing a lot more writing for Redux and copywriting and article writing and sort of reignited my joy for being able to do that.
[00:50:36] So I started writing stories about my own experience, some of the challenges of being in a relationship with that hearing and then the joys of being in a relationship with that hearing, you know, and then started telling stories too, for my kids, if like how we met or writing about the Ironman and I put all of those together and a good lesson again in failure.
[00:50:59] I submitted those the 19th publisher that I submitted that to, to be clear 18. No thanks. No, thanks. No Thanks. Nothing. And I have my final draft due to McMellon and St. Martin's press agreed to publish my memoir which even sounds goofy to say out loud. So I'm six weeks away from having that due to them.
[00:51:22] So that's been pretty exciting. And then somewhere through all of that a story similar to what we're doing was published by NPR and through a comedy of errors that somehow ended up on the, in front of Channing Tatum who said, yeah, okay, this is a movie I need to make. So that doesn't mean the movie's going to happen because there's a lot of people involved.
[00:51:44] But right now I technically would be breaking a contract if you, and I decided to make a movie about my hearing loss experience, because Channing owns the right to that. All of that is just crazy because I'm still the guy who tried to fix a dishwasher and failed this morning. But it, it is, it's also very rewarding because it wasn't doesn't feel like that long ago.
[00:52:10] I was the guy who wouldn't let anybody take his picture and didn't want to leave the house because I wasn't comfortable with who I was. And I didn't want people to see me the way I was. So this is really kind of an evolution of accepting who I am and saying, okay, I have these limitations, but where can I still succeed?
[00:52:34] Where can I still make an impact? And then focusing on those things that I could do, I could still write, I can still try to make somebody laugh. And by focusing and really going all in on those things. All this sort of crazy book, movie stuff. Even the job I have now with Redux in working the calling on audiologists and failing to sell to Angela Alexander all of those things are just outcomes of me trying to help people that deal with NF or deal with hearing loss function a little bit better, or manage their lives a little bit better.
[00:53:10] So that's pretty rewarding. Wow.
[00:53:13] Carrie: Yeah, you are definitely a very empowering person and motivating person. And I'm so excited that I had the opportunity that I could work interview you today for this podcast too. Is there anything that you want to share with the audience before we close today that I didn't ask you about.
[00:53:35] Matt: The the only, and this was, I got sidetracked and thinking about something else, but a lesson, another lesson I wish I had learned sooner, and we don't need to go into a bunch of detail on this, but the importance of self advocacy. And, and I, maybe this comes with age, but for a long time, I looked at my doctors and thought they know best and they know a lot, but they don't necessarily know best.
[00:54:01] And they might, but it's okay to question that it's okay to question your audiologist. And if you have in medical professional, who doesn't like being questioned, maybe that's not the right fit. Even, even seeking out that kind of help, nobody was ever came. Nobody ever came to me and said, Hey, we have this training that can help you.
[00:54:20] It took me advocating for myself and going out and seeking that help. And I just wish I had known that sooner that it's okay to question your medical provider, I mean, in a, in a polite professional way or to ask why, and it's okay to interview five different audiologists and find out the one that you think best meets your needs.
[00:54:44] I wish I had known that I could self-advocate a little bit sooner. Because one, it will help make sure you're comfortable with the carrier getting, but I have found I'm more successful in the outcomes that I have if I feel some ownership in them. And it was just like, if you get your first car and you have to buy it, you're going to be a little bit more careful with it.
[00:55:05] Versus if your parents just give you their old Dodge minivan, Having that ownership of your care was, was very impactful for me. And as soon as that I realized, Hey, I'm, I'm the one, this is my body. And I'm, I can be involved in the decisions. That was very empowering for me. And I think that's another reason why I had seen better outcomes since then.
[00:55:29] So I guess I could, I want to unofficially give people permission to say, you know, you're in charge of you and if you, if you're going to just wait for like something to happen, it probably won't. So do your research and go out and ask those questions. And it's just I know from my, you know, my anecdotal experience of one, that's made a big impact.
[00:55:55] Yeah, that's very
[00:55:55] Carrie: good advice. But whether it's a, an adult or a parent or who is advocating for their child and either way asking questions and being curious and finding the right fit is, is really important too. Well, Matt, I just want to say thank you, but being at the empowerAudiology podcast I would definitely link up your social media to the show notes today.
[00:56:20] So people want to read more about your story or hear the NPR podcast, or I'm gonna find you different ways. They'll be able to find you. So again, Matt, thank you for being a part of this today.
[00:56:33] Matt: Well, thank you, Carrie.
This has been a production of the 3C Digital Media Network.