Latest / Starkey Sound Bites: Hearing Aids, Tinnitus, and Hearing Healthcare / The Power of Self-Advocacy: Emily Haber Davila’s Hearing Loss Journey

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The Power of Self-Advocacy: Emily Haber Davila’s Hearing Loss Journey · Starkey Sound Bites: Hearing Aids, Tinnitus, and Hearing Healthcare

• 0:04
  Dr. Dave Fabry: Welcome to Starkey Soundbites.
• 0:06
  Dr. Dave Fabry: I'm your host, Dave Fabry, Starkey's Chief Hearing Health Officer.
• 0:10
  Dr. Dave Fabry: And today we're talking about patient advocacy with our fantastic guest, Emily Haber Davila.
• 0:17
  Dr. Dave Fabry: But before we dive in, please do us a huge favor and give us a like for this video and uh and share with your friends, people who you might think would benefit from a discussion about advocacy as it relates to those with hearing loss, because it affects millions of people.
• 0:35
  Dr. Dave Fabry: We know that despite the dramatic improvements in technology that have taken place, we've seen that stigma remains often the biggest barrier to making that first step to go with amplification for many people.
• 0:49
  Dr. Dave Fabry: And uh, you know, hearing loss is more than just applying an electronic device to the ear.
• 0:56
  Dr. Dave Fabry: You know, it's really navigating conversations between people, um, you know, dealing with people in the workplace, social situations, healthcare spaces, um, things that often aren't considered in the Americans with Disabilities Act in terms of accessibility.
• 1:13
  Dr. Dave Fabry: Because hearing loss is an invisible disability, it's something that really needs and depends on advocacy.
• 1:20
  Dr. Dave Fabry: And so, with that, by way of introduction, thank you for joining us today.
• 1:25
  SPEAKER_03: Thank you.
• 1:26
  Dr. Dave Fabry: And thank you for your advocacy as somebody who is a hearing aid wearer, but also someone who has found that this is perhaps a passion for you in your life in not only wearing devices, but helping other people.
• 1:41
  SPEAKER_03: Absolutely.
• 1:42
  Dr. Dave Fabry: Yeah.
• 1:42
  SPEAKER_03: Absolutely.
• 1:43
  Dr. Dave Fabry: So let's talk a little bit about your journey, your personal journey first.
• 1:47
  Dr. Dave Fabry: Let's talk about how old were you when you it was discovered that you had hearing loss, and uh and then how long did you delay, and and what sorts of things did you and your family go through as you were coming to terms with the fact they had a hearing loss?
• 2:03
  SPEAKER_03: Well, I think you make a really great point about the invisibility factor.
• 2:06
  SPEAKER_03: And so even for someone that is the parent of a young child, which both of my parents went, they didn't know until I was four, uh, so they had that experience of a first-time shock and learning about a hearing disability.
• 2:22
  SPEAKER_03: And I don't remember it as much because I was so young.
• 2:25
  SPEAKER_03: I was four.
• 2:27
  SPEAKER_03: But who's to say that I wasn't born with it?
• 2:31
  SPEAKER_03: They didn't find out until I was a little a little older.
• 2:34
  SPEAKER_03: At least I'd gone through some development and then they it was brought to their attention.
• 2:38
  SPEAKER_03: And I think that advocacy can begin when we're born and exist until the day we are no longer here, and that it's important at every age and every stage.
• 2:50
  SPEAKER_03: And so, at least for my family, when it began very early, I immediately, despite not remembering the exact first time I put them on, immediately had the improvement and the life improvement overall, is what I should say, uh, of that comes with hearing aids.
• 3:11
  SPEAKER_03: And technology continues to evolve more rapidly than ever.
• 3:15
  SPEAKER_03: So started at four, uh, have continuously upgraded, discovered Starkey at 17 through family friends, and they forever changed my life.
• 3:28
  SPEAKER_03: They being the family friends, and particularly they being Starkey.
• 3:32
  SPEAKER_03: So I have been an avid wearer, I have been a huge fan, I have found that the Starkey staff has made me feel the most understood, and that the continuous evolution of the Starkey hearing aids has made me the person that I am today.
• 3:49
  Dr. Dave Fabry: Well, so much to unpack there.
• 3:51
  Dr. Dave Fabry: First of all, can I can I ask a couple questions about in terms of your first learning or your parents' learning that you had a hearing loss at the age of four?
• 4:01
  SPEAKER_01: Absolutely.
• 4:01
  Dr. Dave Fabry: I mean, you know, because it is because hearing loss is typically an invisible disability, if it's in isolation without other associated um you know, health impacts of that.
• 4:11
  Dr. Dave Fabry: And people think, okay, you know, my perfect baby.
• 4:14
  Dr. Dave Fabry: And as an audiologist who I tended to work more with geriatric patients, but I did also during my tenure at Mayo work with pediatric and young pediatric patients.
• 4:25
  Dr. Dave Fabry: That's awesome.
• 4:26
  Dr. Dave Fabry: Um, one of the things that we've seen, uh, and perhaps you are right on the cusp of where newborn hearing screening became mandatory, if you will, uh, in every state.
• 4:38
  Dr. Dave Fabry: And so if you were born in a state that, if I'm doing the math correctly, was, you know, just before newborn hearing screening was used, then you did not have uh a screening with autoacoustic emissions or auditory brainstem response before you left the hospital, correct?
• 4:54
  SPEAKER_03: Aaron Ross Powell, I believe that's the case.
• 4:56
  SPEAKER_03: I'm not sure what that origin was like.
• 4:59
  SPEAKER_03: I'm not sure what the hearing that would be worth looking into, actually.
• 5:02
  SPEAKER_03: I'm not sure what the protocols were were at the time.
• 5:05
  Dr. Dave Fabry: Aaron Powell Yeah, it may well be that in the state where you you resided, you were right.
• 5:08
  Dr. Dave Fabry: There's so much, been so much technological improvement since in the past 20, 30 years from analog to digital technology, allowing more flexibility for the professional to fit and fine-tune, particularly for pediatric patients.
• 5:23
  Dr. Dave Fabry: You know, you you don't get the the benefit in uh in an infant to be able to have them raise their hand when they hear the different frequency sounds.
• 5:30
  SPEAKER_03: Press a button.
• 5:31
  SPEAKER_03: Or press the button.
• 5:31
  SPEAKER_03: None of that got it.
• 5:33
  SPEAKER_03: Yeah, exactly.
• 5:34
  Dr. Dave Fabry: And so you know, a lot of that early on really uh is benefited by the flexibility provided by first digitally programmable and now true digital hearing aids.
• 5:42
  SPEAKER_01: Yes.
• 5:42
  Dr. Dave Fabry: And then entering into the modern era with uh you know, connecting the phone to your hearing aids and connecting other accessories and other wireless devices and technologies.
• 5:52
  Dr. Dave Fabry: We're seeing an explosion of this.
• 5:54
  Dr. Dave Fabry: But it fundamentally comes down to your parents probably were quite devastated by this news at at the age of four.
• 6:02
  Dr. Dave Fabry: Yeah.
• 6:03
  Dr. Dave Fabry: And uh but but you know, to their credit, then they jumped into action even though, you know, from four, you've already technically missed a couple critical language acquisition periods.
• 6:15
  Dr. Dave Fabry: It clearly hasn't hurt you in that respect.
• 6:18
  Dr. Dave Fabry: Um that they had to get through this phase that I've seen oftentimes when a child is now identified as, you know, from the screening as having a hearing deficit, and then follow-up exams need to be done.
• 6:31
  Dr. Dave Fabry: Uh hearing screening.
• 6:33
  Dr. Dave Fabry: Marion Downs, who was born in Minnesota and is the person, primary person, many were involved.
• 6:38
  Dr. Dave Fabry: It took a village.
• 6:39
  Dr. Dave Fabry: But Marion Downs was one of the primary uh protagonists behind advocating uh for newborn hearing screening when we're talking about advocacy.
• 6:48
  Dr. Dave Fabry: Yeah.
• 6:48
  Dr. Dave Fabry: And then she went to Colorado where she did the bulk of her work, but she came back to Minnesota prior to her death uh a few years back at the age of 100.
• 6:56
  SPEAKER_03: Um, what a long and amazing life.
• 6:58
  Dr. Dave Fabry: Amazing career.
• 6:58
  Dr. Dave Fabry: Yeah, I think.
• 6:59
  Dr. Dave Fabry: I need to look into it.
• 7:00
  Dr. Dave Fabry: I need to look into it.
• 7:01
  Dr. Dave Fabry: She wrote a couple books that would be intriguing to you.
• 7:03
  Dr. Dave Fabry: Cool.
• 7:03
  Dr. Dave Fabry: But that issue is, and she was quick to mandate that newborn hearing screening is really only the first step.
• 7:09
  Dr. Dave Fabry: And since you didn't have that, then there was a four-year gap until when you were fitted.
• 7:14
  Dr. Dave Fabry: But then you were fitted and immediately jumped in, noticed the benefits, been wearing devices since that time, found Starkey through family friends, and then we've had the privilege of of just uh knowing each other uh a shorter period of time than what we'll talk about that.
• 7:30
  Dr. Dave Fabry: But it's been really delightful to be involved in several of uh events and classes and and things that you're working on now.
• 7:38
  Dr. Dave Fabry: But what at what moment did you decide that hearing was more than something that you dealt with personally, but wanted to be an advocate for?
• 7:49
  Dr. Dave Fabry: And what are you doing now?
• 7:51
  SPEAKER_03: Great question.
• 7:52
  SPEAKER_03: I want to go back briefly and just say one more thing about being a child and having that moment.
• 7:58
  SPEAKER_03: Despite my age, despite being four years old and not knowing this from a personal experience, what I was told, and this makes a lot of sense, is that the reason that my mom took me to a hearing test was because she thought I just had an attitude.
• 8:16
  SPEAKER_03: She thought maybe I just didn't want to hear her.
• 8:18
  SPEAKER_03: And I had a lisp and she didn't know what was going on.
• 8:21
  SPEAKER_03: She knew something was off.
• 8:22
  SPEAKER_03: But when she found out that I didn't, in fact, have an attitude, it was a huge relief.
• 8:27
  SPEAKER_03: And so it wasn't just that it affected me, it affected my entire family that I got hearing aids.
• 8:33
  SPEAKER_03: And so the ripple effect of the improvement of this technology is huge.
• 8:38
  SPEAKER_03: And so that's continued through my life.
• 8:40
  SPEAKER_03: And I just wanted to add that one thing back in because I really feel like it's made me who I am and it's made me so passionate about what I'm stepping into.
• 8:50
  SPEAKER_03: And so I actually grew up in a family band.
• 8:56
  Dr. Dave Fabry: Right.
• 8:56
  Dr. Dave Fabry: You didn't let your hearing loss get in the way of participating in this family band.
• 9:01
  Dr. Dave Fabry: And this is not just people playing in the backyard uh for a couple of the neighbors.
• 9:06
  Dr. Dave Fabry: We did play in many a backyard.
• 9:08
  SPEAKER_03: I'm sure many a backyard.
• 9:09
  SPEAKER_03: Whole foods, yeah.
• 9:10
  Dr. Dave Fabry: But yeah, talk a little bit about that.
• 9:11
  Dr. Dave Fabry: You didn't let that stop you.
• 9:13
  SPEAKER_03: No, and my parents didn't either.
• 9:14
  SPEAKER_03: You know, some people might think, wow, that's a wild choice to take your daughter that has a severe loss and wears hearing aids in both ears and put her on the road in a family band.
• 9:23
  SPEAKER_03: But we did just that.
• 9:24
  SPEAKER_03: They both had been in music before.
• 9:26
  SPEAKER_03: They noticed my love of music.
• 9:29
  SPEAKER_03: And we were in this band for 10 years.
• 9:32
  SPEAKER_03: We were on PBS Kids, we toured the country, and it was through the band, I believe, that my mom connected with another mom named Tanya McConnell and her son Jack McConnell, who you're familiar with, uh, that that that we got introduced to Starkey.
• 9:50
  SPEAKER_03: So, so many little things that you can't plan that happen along the way and lead you to the right place.
• 9:55
  SPEAKER_03: But I didn't let the hearing loss stop me for sure.
• 9:59
  SPEAKER_03: What's funny though is I really didn't hear the layers in the music that we had been performing for so many years until I was 17.
• 10:08
  SPEAKER_03: So those 10 years, at the end of those 10 years, roughly, was when I gained the ability to decipher the layers in the music, and that was because of Starky.
• 10:19
  SPEAKER_03: So 10 years deep into that, I really relied on yes, the technology that I had at the time, but it was consistently developing and originally relatively primitive compared to what we're looking at now.
• 10:31
  SPEAKER_03: Um, and also the vibration of the music and the show must go on.
• 10:37
  SPEAKER_03: So experienced that.
• 10:40
  SPEAKER_03: And at 19, I moved to Nashville.
• 10:44
  SPEAKER_03: I realized after so much performing, to be honest, I was not meant for singing on a stage.
• 10:50
  SPEAKER_03: It wasn't my happy place.
• 10:51
  Dr. Dave Fabry: It made me your your vocals were your primary instrument.
• 10:53
  Dr. Dave Fabry: Did you play instruments?
• 10:54
  SPEAKER_03: I played a bunch of instruments, so I played bass was actually my favorite because I love great.
• 10:59
  SPEAKER_03: Yeah.
• 11:00
  SPEAKER_03: And my my hearing loss is mainly high frequency, but across the board.
• 11:03
  SPEAKER_03: But yeah, I loved the bass and played guitar and played piano.
• 11:08
  SPEAKER_03: Sang.
• 11:09
  SPEAKER_03: And that was my least favorite part was the singing.
• 11:11
  SPEAKER_03: I was really self-conscious about it, just for with my hearing loss.
• 11:15
  Dr. Dave Fabry: Well, you were the only non-adult.
• 11:17
  SPEAKER_03: I was the only non-adult.
• 11:19
  SPEAKER_03: My mom was the lead singer, my dad played instruments and produced the music.
• 11:23
  SPEAKER_03: And so it was the three of us.
• 11:24
  SPEAKER_03: We were this small family unit on the road.
• 11:27
  SPEAKER_03: And you know, I have so many stories from that era.
• 11:31
  SPEAKER_03: It also feels like a different lifetime in a lot of ways.
• 11:34
  SPEAKER_03: And I got to a point where I really was not interested in performing.
• 11:39
  SPEAKER_03: I wanted to write.
• 11:41
  Dr. Dave Fabry: Okay.
• 11:41
  Dr. Dave Fabry: And that's when you moved in Nashville.
• 11:43
  SPEAKER_03: And that's when I moved to Nashville.
• 11:44
  SPEAKER_03: So I moved to Nashville at 19, and I had these new Starky hearing aids, relatively new in those last two years, and began my writing career.
• 11:54
  SPEAKER_03: And I am so thankful and so lucky that I've gotten to spend the last decade of my life, my entire 20s, writing music professionally, experiencing global hits and success and billboard charts and signing my own publishing deal that was separate from my family and getting to work with artists I really believed in and getting to be part of the music and bring my own perspective on the music to the table and help other people tell their stories.
• 12:25
  SPEAKER_03: And I feel like it taught me a lot about people because I was consistently writing in rooms where you needed to be vulnerable really quick.
• 12:33
  SPEAKER_03: And my job was to ask other people about themselves and then turn that into a song.
• 12:40
  SPEAKER_03: And it was incredibly fulfilling and something that I'm so thankful I've had as a foundation in my life and that I've gotten to pursue.
• 12:49
  SPEAKER_03: And I feel very lucky.
• 12:51
  SPEAKER_03: There came a time last year where I really realized that it was time for something different.
• 13:01
  SPEAKER_03: I realized that yes, I had found my passion in music.
• 13:06
  SPEAKER_03: Yes, I loved the music I was making.
• 13:10
  SPEAKER_03: I also wanted to step into a role where I could help in a different way.
• 13:15
  SPEAKER_03: And I thought about it and I called Jack McConnell, actually.
• 13:20
  SPEAKER_03: And I I had a long conversation with him and was just like, gosh, I would not have this songwriting career without my Starkey hearing aids.
• 13:30
  SPEAKER_03: What do you think?
• 13:31
  SPEAKER_03: I was asking him.
• 13:32
  SPEAKER_03: I was just like, what do you think would be some way that I could take that gratitude, turn it into an actionable passion and move into this new chapter?
• 13:45
  SPEAKER_03: What what what are your thoughts?
• 13:46
  SPEAKER_03: And he was great, you know, known you and worked alongside the Starkey team for so long.
• 13:52
  SPEAKER_03: And I've really admired his work.
• 13:54
  SPEAKER_03: And he suggested that I write Miss Tany Austin a letter.
• 13:59
  SPEAKER_03: And I had happened to meet her last year.
• 14:01
  SPEAKER_03: I mean, it wasn't such a happening.
• 14:02
  SPEAKER_03: I was here at the Starkey offices, but you know, she's traveling all the time.
• 14:06
  SPEAKER_03: So it's not guaranteed that you get a chance to interact with her.
• 14:09
  SPEAKER_03: And I got really lucky, and my now husband and I came up to get new hearing aids, to get an upgrade.
• 14:16
  SPEAKER_03: I was at the time putting out some music for TV and film, and I had some older hearing aids, and it was time to get the new technology.
• 14:25
  SPEAKER_03: And I came up here, got to meet Tanny, got to work with the team here at the Center for Excellence.
• 14:30
  SPEAKER_03: And I'm so grateful that he witnessed that upgrade in the technology that really brought me to tears yet again, as someone that's a lifelong hero.
• 14:41
  Dr. Dave Fabry: Yeah.
• 14:41
  Dr. Dave Fabry: Yeah.
• 14:42
  SPEAKER_03: Yeah.
• 14:42
  SPEAKER_03: And you can't replicate that and you can't fake that.
• 14:45
  Dr. Dave Fabry: Well, sometimes it feels like you're in the right place at the right time.
• 14:48
  Dr. Dave Fabry: And as you said, there's invisible choices as well, or things that just happen.
• 14:52
  Dr. Dave Fabry: And I think part of this growing up in the musical family and then the advocacy for working with musicians as you began your writing career, people always think of noise exposure and noise-induced hearing loss as the domain of hunters, uh, farmers, factory workers, but musicians and professional musicians who are chasing their passion with their voice or their instrument, and yet they are often at risk to a greater degree than a lot of other disciplines that we think of as being noisy uh professions or hobbies.
• 15:24
  Dr. Dave Fabry: And so many musicians are at risk of hearing loss.
• 15:27
  Dr. Dave Fabry: So you were an advocate before you even realized just by speaking in with your voice about this as you were writing.
• 15:32
  Dr. Dave Fabry: And you know, I I want to talk a little bit about the changes in technology, which, you know, as I said, you were born during a time of in the hearing aid industry of tremendous growth.
• 15:45
  Dr. Dave Fabry: And then you've used the term a couple times about the layering of sounds and the layering of in the environment.
• 15:53
  Dr. Dave Fabry: What's the biggest thing that you noticed as you looked at omega AIs that you're wearing now from the most recent ones that you've worn uh prior to that time?
• 16:04
  Dr. Dave Fabry: What what sorts of and I don't want tech I don't want buzzwords, marketing buzzwords or anything like that.
• 16:09
  Dr. Dave Fabry: What what have you noticed have in terms of the improvement with the latest devices versus earlier ones?
• 16:16
  SPEAKER_03: So speaking as a patient first, I really was shocked by the way that my brain was allowed to relax for the first time.
• 16:26
  SPEAKER_03: It was a sensation I couldn't really describe before, and I wouldn't have known was possible.
• 16:32
  SPEAKER_03: And that's what's interesting to me about each of these upgrades that I've received from my strokey hearing aids is that every time that I've gotten something that I think or I'm told is the best, there's something else and it gets better.
• 16:44
  SPEAKER_03: And so with these in particular, with the omegas, I had a sense of relief because I didn't know how on alert my brain was.
• 16:53
  SPEAKER_03: Because the ear is the boss, as Mr.
• 16:56
  SPEAKER_03: Bell loves to say.
• 16:57
  SPEAKER_03: And the brain is the receiver of the sound, right?
• 17:01
  SPEAKER_03: So it's not just about the ears receiving the sound, it's about the brain processing the sound.
• 17:08
  SPEAKER_03: And I felt it on a very foundational level.
• 17:12
  SPEAKER_03: When I put these on and wore them for the first few weeks, I noticed a difference.
• 17:17
  SPEAKER_03: I felt more peaceful.
• 17:18
  SPEAKER_03: I also noticed, and this was actually really emphasized by my music background, I noticed a latency difference because funnily enough, I went to this is with both the edge and the omegas.
• 17:33
  SPEAKER_03: And this latency is even faster.
• 17:36
  SPEAKER_03: Like there is little to no time between the speech and the reception of the speech.
• 17:42
  SPEAKER_03: But there was a moment where I went to go sing something into a microphone.
• 17:46
  SPEAKER_03: I was doing a demo for something at home, and I I realized I couldn't actually keep the time because I had gotten so easy to be.
• 17:54
  Dr. Dave Fabry: You're building in a delay.
• 17:55
  SPEAKER_03: I was building in a delay subconsciously.
• 17:58
  SPEAKER_03: My brain had found a way to adapt to a latency to keep up with a beat to record music.
• 18:04
  SPEAKER_03: And so with the faster sound quality and the faster latency, it it's actually tripped me up in a very funny way to learn how to relax into it more.
• 18:17
  SPEAKER_03: I don't have to think so much about when I'm saying something, how I'm saying it.
• 18:22
  SPEAKER_03: And this was just in terms of recording music, but I've noticed in conversations, I get a chance to be more present with people because there's no like delay there.
• 18:31
  SPEAKER_03: Trevor Burrus, Jr.
• 18:32
  Dr. Dave Fabry: It's why I I love talk, I've had the privilege of talking to quite a few musicians and and and and you know, numerous professional musicians and who can articulate just what you've talked about, you know, with timing.
• 18:44
  Dr. Dave Fabry: And they can do so that only musicians really are, you know, some engineers think they can do it, but it's really the musical engineers that can really express from the emotion and from the technology aspect in terms of that latency that you just articulated.
• 18:59
  SPEAKER_03: And that was the second thing I was gonna point out.
• 19:01
  SPEAKER_03: I'm so glad you walked me right into it.
• 19:03
  SPEAKER_03: Latency, fantastic.
• 19:05
  SPEAKER_03: I understand a lot of people wouldn't be conscious of it.
• 19:08
  SPEAKER_03: And that's why it's part of why I first described it as the sense of peace, because it it is something that I can imagine without getting on a mic and figuring out how you work with a beat, you could experience a sense of relief without quite knowing why, other than it sounds better.
• 19:26
  SPEAKER_03: But the second thing, which is what you've mentioned, is the spatial awareness, the distance to which I can actually hear and the directional awareness of what's going on around me, completely changed.
• 19:40
  SPEAKER_03: Completely changed.
• 19:41
  SPEAKER_03: I've I mean, this is funny when you're at a restaurant and you're like, I've never eavesdropped before.
• 19:45
  SPEAKER_03: That's crazy.
• 19:46
  SPEAKER_03: That's so cool.
• 19:47
  Dr. Dave Fabry: Um be careful if you're eating in the same restaurant as Emily knows.
• 19:50
  SPEAKER_03: Yeah, I might be able to hear you.
• 19:51
  SPEAKER_03: So, you know, there are so many benefits, though.
• 19:54
  SPEAKER_03: I can be in the other room without my husband there.
• 19:56
  SPEAKER_03: He can yell out, I can know exactly where he's coming from, I can hear him clearly.
• 20:00
  SPEAKER_03: I mean, he can be behind me, and it's not like I have to turn my head.
• 20:03
  SPEAKER_03: I'm so used to having my head on a swivel.
• 20:05
  SPEAKER_00: Yeah.
• 20:06
  SPEAKER_03: And so the upgrade with the spatial awareness.
• 20:09
  SPEAKER_03: And that I really do think that that contributes to a sense of peace too.
• 20:13
  SPEAKER_03: I feel like it's more exhausting than people realize to be on a swivel, to be on high alert, to try to just see what's going on around you and have a basic interaction.
• 20:25
  Dr. Dave Fabry: Yeah.
• 20:25
  Dr. Dave Fabry: I love your phrasing of a sense of peace rather than the more commonly used phrase, which is cognitive load.
• 20:30
  Dr. Dave Fabry: We talk about cognitive load is really you're having to concentrate so much and you're having to always keep everything in order to a much greater degree than someone without hearing loss, because that just comes naturally.
• 20:41
  Dr. Dave Fabry: You close your eyes and you know where sounds are.
• 20:44
  Dr. Dave Fabry: And to know whether there's a warning sound near but nearby or whether you're playing in an orchestra or a band and using a wedge versus in-ear monitors.
• 20:53
  Dr. Dave Fabry: People really want.
• 20:54
  Dr. Dave Fabry: I've I've watched professional musicians who use a wedge or just looking at uh a multi-piece band uh and wanting to segment and tune in on one instrument or the other instrument, and to be able to do that as a hearing aid user in the past was often challenging and fatiguing.
• 21:15
  SPEAKER_03: And to the point of the technological advancements, the programming to me is so important when it comes to hearing aids, and it keeps getting better and better.
• 21:27
  SPEAKER_03: And the people that are doing the programming, the providers, the audiologists who are programming people's ears continue to learn.
• 21:35
  SPEAKER_03: And I found that the ones that I've worked with specifically at the CFE, I'll shout out Isaac for a minute.
• 21:43
  SPEAKER_03: He mixed my ears and as of just a few weeks ago, went in and we did a little fine-tuning on a new music setting.
• 21:50
  SPEAKER_00: Great.
• 21:51
  SPEAKER_03: It changed my life again because suddenly the way that he programmed it and he opened up everything for me, I have in.
• 22:00
  SPEAKER_03: So it's great.
• 22:02
  SPEAKER_03: I love my molds.
• 22:04
  SPEAKER_03: I wouldn't I wouldn't go back to a bud.
• 22:06
  SPEAKER_03: I love my molds so much.
• 22:07
  SPEAKER_03: And my loss is severe enough that I really I don't have a vent like full mold going on in both ears.
• 22:13
  SPEAKER_03: He was able to make it sound open and warm.
• 22:18
  SPEAKER_03: Where I was at a show, at a I was at a friend's show in LA like last week, and I I haven't heard live live music like that.
• 22:25
  SPEAKER_03: It was as if I had taken my hearing aids out and also amplified everything.
• 22:30
  SPEAKER_03: It was just such an amazing combination.
• 22:32
  SPEAKER_03: So it just keeps getting better.
• 22:33
  Dr. Dave Fabry: Well, for a vocalist, thank you for that.
• 22:35
  Dr. Dave Fabry: And I'll pass that on to Isaac and hopefully he'll listen to this.
• 22:38
  Dr. Dave Fabry: Oh yeah.
• 22:39
  Dr. Dave Fabry: Okay.
• 22:40
  Dr. Dave Fabry: But um, you know, to have your own voice sound natural and unaccluded when you have a significant loss is really a delicate balance, of course, between feedback and natural sound quality.
• 22:51
  Dr. Dave Fabry: So I'm so pleased.
• 22:53
  Dr. Dave Fabry: Number one, you know, again, going staying on this topic of advocacy, the yes, hearing hearing loss and then the mechanisms for setting the hearing aid settings initially is prescriptive in nature.
• 23:06
  Dr. Dave Fabry: We know on the basis of the loss and configurations, things we've all learned in school or in the discipline as to how to program initially.
• 23:14
  Dr. Dave Fabry: But then personalization, optimization is so essential.
• 23:18
  Dr. Dave Fabry: And that again boils down to the clinician listening to what is important to the patient, to the end user, and then adjusting and then having the technical expertise to be able to adjust to get that uh uh uh aha or wow moment that you had that enabled you to feel open, even though you're wearing clothes, vent, custom case molds.
• 23:37
  SPEAKER_03: Yeah.
• 23:38
  SPEAKER_03: And you know what that comes down to?
• 23:39
  SPEAKER_03: What's that?
• 23:40
  SPEAKER_03: To your point?
• 23:41
  SPEAKER_03: Self-advocacy.
• 23:42
  SPEAKER_03: Yeah.
• 23:42
  SPEAKER_03: It's the patient advocating for themselves in the room, or it's the companion in the room advocating for the patient.
• 23:48
  SPEAKER_03: And ultimately, it's the provider or the audiologist advocating for the patient.
• 23:54
  SPEAKER_03: Yes.
• 23:54
  SPEAKER_03: The advocacy happens in the room and then it happens in the world.
• 23:57
  unknown: Yes.
• 23:57
  SPEAKER_03: And when it happens in both places, that's where you win.
• 24:01
  Dr. Dave Fabry: Absolutely.
• 24:01
  Dr. Dave Fabry: And in and we learn in healthcare, you have to be, you and your family have to be your own strongest advocates.
• 24:08
  Dr. Dave Fabry: Because in many cases, you'll just get swallowed up by the system if you're not.
• 24:12
  SPEAKER_03: And what I really appreciate about so many people in hearing healthcare, audiologists and providers alike.
• 24:21
  SPEAKER_03: The ones who care, you can feel it when you're a patient in the room.
• 24:25
  Dr. Dave Fabry: It's gotta be authentic.
• 24:27
  Dr. Dave Fabry: You can fake that.
• 24:27
  Dr. Dave Fabry: You can't fake that.
• 24:28
  SPEAKER_03: You can't fake it.
• 24:29
  SPEAKER_03: And what's truly remarkable about the ones who care and the ones who don't fake it, and the ones who advocate is the ability to sit there and listen.
• 24:39
  SPEAKER_03: Yes, absolutely.
• 24:41
  SPEAKER_03: But then make the patient feel so understood that you're like in my head.
• 24:47
  SPEAKER_03: That was what I have always appreciated are those people who can hear and somehow find a way to help me hear better without even knowing my loss on a personal level.
• 25:00
  SPEAKER_03: And that is such a gift and such a unique set of skills.
• 25:04
  SPEAKER_03: And not everyone has it, but a lot of people do.
• 25:07
  SPEAKER_03: And so those ones are the golden eggs, the golden gooses, the winners in the industry.
• 25:14
  Dr. Dave Fabry: Well, and I think again, yeah, part of this advocacy is the understanding that hearing loss doesn't have to provide any limitations.
• 25:22
  Dr. Dave Fabry: Absolutely.
• 25:23
  Dr. Dave Fabry: It doesn't it, you know, it it really in many ways.
• 25:26
  Dr. Dave Fabry: And Jack, Jack talks about you know, hearing aids are now his superpower.
• 25:29
  Dr. Dave Fabry: Like you, he's wearing devices that are capable of picking up Oracast transmission.
• 25:34
  Dr. Dave Fabry: So he he promised me that anytime he's in the wild, he's looking for Oracast signals because he talked about it as his superpower.
• 25:41
  SPEAKER_03: Totally a superpower.
• 25:42
  SPEAKER_03: I'm so excited for the Oracast.
• 25:43
  SPEAKER_03: That's gonna be.
• 25:44
  Dr. Dave Fabry: Yeah, tell me a little bit more.
• 25:44
  Dr. Dave Fabry: Have you encountered it at all yet?
• 25:46
  Dr. Dave Fabry: Have you used it?
• 25:47
  SPEAKER_03: I've used it here.
• 25:48
  SPEAKER_03: So I've used it here at the WFA.
• 25:49
  SPEAKER_03: Yeah.
• 25:50
  SPEAKER_03: But that's the only place so far.
• 25:51
  SPEAKER_03: Yeah.
• 25:52
  Dr. Dave Fabry: So I need you to promise me that when you find him in the wild, because there are websites now, and Starkey is introducing a website that will catalog the different Oracast locations in the US and around the world.
• 26:04
  Dr. Dave Fabry: And so we'll communicate and we'll set up that link when it goes live pretty pretty soon here.
• 26:09
  Dr. Dave Fabry: Great.
• 26:09
  Dr. Dave Fabry: And uh and then that way when people go into public situations, airports, uh, gymnasiums, yeah, uh uh sports bars, uh, you know, the list goes on and on, uh, museums, uh theaters, et cetera, where where they're using that, it's gonna really be a game changer.
• 26:25
  Dr. Dave Fabry: And it's for people with hearing loss as well as those who are using wireless headphones.
• 26:30
  SPEAKER_03: You are naming every place that has been difficult as a patient my whole life.
• 26:35
  SPEAKER_03: So the fact that it gets to be something that I can I can look forward to sharing with other people.
• 26:41
  Dr. Dave Fabry: And being an advocate.
• 26:42
  SPEAKER_03: And being an advocate, that is so cool.
• 26:44
  Dr. Dave Fabry: Yeah.
• 26:45
  Dr. Dave Fabry: So I'm counting on that from you guys.
• 26:46
  Dr. Dave Fabry: I got it.
• 26:46
  SPEAKER_03: I got you.
• 26:47
  SPEAKER_03: All right.
• 26:48
  Dr. Dave Fabry: Well, um, is there any final words that you might have for someone who's struggling to accept that they have a hearing loss, making that decision?
• 26:55
  Dr. Dave Fabry: It's often years from the time someone thinks they have a hearing loss or are told that they have a hearing loss until action.
• 27:02
  Dr. Dave Fabry: And is there any advice that you have for someone who might be struggling with even taking that first step of getting a hearing test to put it on the map, or then after the test, doing something about it?
• 27:15
  SPEAKER_03: Well, I can understand that it's a vulnerable thing to do to begin with.
• 27:20
  SPEAKER_03: To the first step is admitting it, right?
• 27:23
  SPEAKER_03: So getting a hearing test is that first step.
• 27:26
  SPEAKER_03: I could not recommend it enough.
• 27:28
  SPEAKER_03: And the as a lifelong wearer, I understand that I have a different perspective than someone that is coming into this at an older age.
• 27:37
  SPEAKER_03: But as a lifelong wearer, I also can tell you confidently that life is better, connections are deeper, and the world sounds a lot brighter.
• 27:48
  SPEAKER_03: And it there's so much more to soak up and experience once you have hearing aids.
• 27:55
  SPEAKER_03: And that, yes, there is a stigma.
• 27:58
  SPEAKER_03: I hate to even use the word, but there is a stigma and there is an ageism attached to it.
• 28:04
  SPEAKER_00: Absolutely.
• 28:04
  SPEAKER_03: And if I can be an advocate as a younger person, that it doesn't change the person.
• 28:10
  SPEAKER_03: I mean, do you think of me differently?
• 28:12
  SPEAKER_03: I you can't see them, first of all.
• 28:14
  SPEAKER_03: I mean, and yes, my hair is down, I understand that, but I wear my hair up all the time.
• 28:19
  SPEAKER_03: And it's an invisible, it's a hidden disability, hidden being that number one word, right?
• 28:24
  SPEAKER_03: So, yes, there is a stigma attached to even walking through those steps and getting your foot in the door, but it's one that once you can admit it to yourself that you could use some help.
• 28:37
  SPEAKER_03: Oh boy, is that help useful.
• 28:39
  SPEAKER_03: So if I can be an advocate as an example of someone that uses them in everyday life and who would not have the career I've had without them, who would not be the person I am or have the connections I have without them, I I just can't recommend beginning that journey enough.
• 28:55
  Dr. Dave Fabry: Well, we'll well said, and we'll leave it there.
• 28:58
  Dr. Dave Fabry: The last thing I can think of is I'm a big fan of the Hearing Loss Association of America, which is an advocacy group for those with hearing loss.
• 29:05
  Dr. Dave Fabry: I knew it when it used to be called self-help for hard of hearing or shush.
• 29:09
  Dr. Dave Fabry: They went from one acronym, unpronounceable acronym to another one.
• 29:12
  Dr. Dave Fabry: HALA.
• 29:13
  Dr. Dave Fabry: They went from Shush to HALA.
• 29:15
  Dr. Dave Fabry: But uh they for a long time have said, you know, your hearing loss is more conspicuous than your hearing aids.
• 29:21
  Dr. Dave Fabry: And I think you just framed it in a positive manner.
• 29:24
  Dr. Dave Fabry: The the conspicuous part, again, uh it aged poorly because you know, we're trying to move beyond that stigma.
• 29:30
  Dr. Dave Fabry: And you just highlighted all the positive things that have impacted you, and I think that's why you're a terrific advocate.
• 29:36
  Dr. Dave Fabry: I love to see more from you in the future.
• 29:39
  SPEAKER_03: Thank you.
• 29:39
  Dr. Dave Fabry: And so, and thank you for um being with us today, uh, Emily Haber Davila.
• 29:45
  SPEAKER_03: Thank you for having me.
• 29:46
  SPEAKER_03: It's a real pleasure.
• 29:47
  Dr. Dave Fabry: Oh, it was ours.
• 29:48
  Dr. Dave Fabry: And uh and for our guests and listeners, uh, if you enjoyed this episode on advocacy, please share it with your friends.
• 29:55
  Dr. Dave Fabry: Please like it so we can spread the word and raise awareness for the importance of healthy hearing, whether you have a hearing loss or whether you have normal hearing and are around individuals who have hearing loss.
• 30:05
  Dr. Dave Fabry: It is something that we acknowledge, the stigma, the fact that it is a hidden disability.
• 30:11
  Dr. Dave Fabry: But if you haven't checked in a few years, it's a completely different world.
• 30:15
  Dr. Dave Fabry: So thanks for joining us, and we'll see and hear you again really soon.