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So, this is Carol Johnson. I'm interviewing Jacob Landis on October 30th 2021 at 5 p.m. So, before I start do I have your

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permission to record this interview? Yes. Okay, great. So, getting into it.

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I just want to ask you some introductory questions about yourself. So, could you tell me about your life, where are you from, how did you grow up? Can you repeat that question

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again? Sorry. Yeah, could you just tell me a little bit about your life? Like where are you from about your family and how you grew up? Got it.

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I'm 32 years old. I live in Annapolis, Maryland and I've been here my whole life. I'm married and me and my wife just had our first child about a year ago.

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I lost my hearing at a young age. It was progressive. When I was 10, I got the cochlear implant.

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It's a good introduction. Yeah, so going into your hearing loss. Do you know how you lost it? No, there is no etymology to it. My father spent a lot of money and time went to a lot of specialist

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appointments because in the early 90's, an implant really wasn't on a lot of people's radar, the possibility. So, we got my first pair of hearing aids, when I was four, and then the hearing continued to get worse.

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My father tried to do everything he could to find out why I was losing my hearing so that they could stop it. And pretty much anything that could be ruled out, like anything that was like genetic and anything you can test for has been ruled

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out. We still have no idea like why I lost my hearing. So were you born with hearing loss

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at all? Or did it just suddenly happen? We don't know when it started. They believe that I was born with normal hearing.

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My mother thought I was slow to develop speech and language when I was about two and a half. She thought I was a little bit behind, so she got me hearing tested and they showed a very, very minor degree of hearing loss.

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On the audiogram, the decibels and the frequency of the hearing loss. It really wasn't anywhere that would affect human speech. It was only at really really high frequencies. They said, we know that there's at least some hearing loss.

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Hearing tests aren't very reliable with really young children. Just the feedback is unreliable unless you have, there's some type of brain thing they can do. But, they just continued to

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monitor it and then every three to six months I did a hearing test and every single one showed it was just getting a little bit worse every test. Then about four and a half years,

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pretty close to five because I was in Kindergarten, I got my first prescription for hearing aids. And was hearing aid, the only option offered or was there anything else they were

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considering trying to remediate? Yeah, hearing aids were [the only option]. There is no other option. At the time, they had been monitoring my hearing loss for

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some time at that point. When the hearing loss finally crossed some threshold they finally said alright now you can get implants.

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There were other things that came later. My mom and dad they were really really active and good advocates.

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As soon as people suggested different tools that would help me they would generally use them. When I was in first grade, so just like one year after getting my first pair of hearing aids, I got an FM system that was used with

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the teachers in school. I think by the time I was in second grade, I had probably gotten stronger hearing aids at that point.

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And by the time I was in third grade, I had made the switch from analog hearing aids to digital programable hearing aids. So, my mom and dad did everything

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they could to always make sure whatever the doctors were telling them to do, I always had the most, the best tools that they thought that they could give me. If It wasn't for that early

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intervention, I think my speech and my language comprehension would be a lot worse. All that stuff that they did at a young age and getting me hearing aids as soon as it was possible

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for me to get hearing aids basically gave my brain information that it needed. And then when I got the implant, my brain got access to information and my brain already knew what to

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do with that information because I had the hearing aid at a younger age. I think my speech and language would be a lot worse today if it wasn't for that.

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Yeah, that's great. So could you tell me a little bit more about how the cochlear implant works? And how after you got your second one, especially, how that really

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changed and affected your hearing and comprehension. The implant to me, it basically uses like an electrode wave inserted into a really thin [unintelligible] membrane. I think there's only like I think between 15 and 21 total electrodes

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and those electrodes in you know like light up with a certain amount of intensity and power. And they're basically trying to replicate about 10,000 different hair cells that would otherwise be

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giving your brain information, acoustic information. For most people with hearing loss, hearing loss comes from damage to those hair cells. So the electrodes and implants

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basically it's like bypassing the damaged hair cells to give your brain information that it would not otherwise get due to those damaged hair cells. The magic of the implant happens

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in the human brain. I really think it's a lot like reading in the same way that we have to learn how to read. It's something we totally take for granted too because we just look

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at symbols and look at squiggly lines and we end up all the sudden we have somebody's voice in our head giving us information, and hearing is almost the same. [Interruption in audio].

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When you hear things, it's not the same as like giving them meaning. Basically, the brain has to learn how to use the hearing in order to understand language. There's an age, it probably starts

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at birth, I think it's often quoted that ages two through five is like this speech and language learning window and if you don't if you don't like learn how to understand speech before the age of five have drastically lowered outcomes.

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Like they do foreign language, when you do foreign languages at a young age, children just learn language so much faster. So, basically, my brain learned how to hear it learned speech and language.

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It did need hearing aids to help. And then, as I got older, hearing aids were able to help me less and less and less. So my brain naturally learned how

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to compensate because basically I learned a whole bunch of context clues. I learned how to lip read No one taught me how to do that.

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I just naturally learned how to lip read very well. And then my brain was just screaming for more information and I was using all sorts of visual

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cues to kinda get that information. And then when I finally got the implant, I was ten years old, so I still had a young brain. I wasn't in the speech and

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language learning window anymore. That didn't really matter because I already knew, my brain already knew how to turn sound into language.

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It wasn't like they were gonna turn this on and it was just gonna be white noise. It was just gonna be a different form of information. But my brain, because it was young, it would have really

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quickly used that information because it would have been screaming for that information for like two to three years at that point. So, when I got the implant, I also

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knew how things were supposed to sound. So, if I saw like a basketball bounce on the floor, my brain has this expectation like oh, this is supposed to sound like this thing I'm familiar with.

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And, whenever I heard music I already knew what harmony sounded like. I enjoyed music, even though I was losing my hearing. My brain just did a really really quick job.

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If people are born deaf and they don't get hearing aids or anything for a long time, let's say they're like ten years old or twelve years old and they say "hey, I'm gonna get the cochlear implant," a lot of times the audiologist is all about like managing expectations

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because a person like that, they're not gonna ever understand... basically, their ceiling is just so much lower because their brain just has such a harder time making sense of that information.

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They're often more frustrated and it's all about managing expectations. There's some patients that are older adults they're in their 40's and 50's, They've been deaf for decades and decades and decades,

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and they want to get the implant. They have to be told, like hey you're gonna use this as a safety. If you wanna hear a train, if you

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wanna hear police sirens behind you when you're driving, you can use this for environmental awareness. But their expectations have to be managed basically like saying you're not gonna be like in a YouTube video where you hear

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someone's voice for the first time and you break down crying. That's just not reality for 99% of people. I mean for me, the way I always thought about the implant is It just gives your brain information.

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Um, but the brain is [unintelligible] the words behind them [unintelligible] interpreting that information. I'm really humbled by the medical

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professionals in the 60's and 70's they started implanting just single electrodes into profoundly deaf adults. They were just kinda wondering hey if we just do one electrode, will the human brain just perceive the existence of sounds, or have a

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perception of sound? Obviously with one electrode its gonna be like binary. There's not really any way to convey information unless it's like morse code or binary, I

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guess. But then you have like doctors in the 70's and 80's that had so much faith in children and the human brain to say not only is the brain gonna perceive sound, but if we

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set up all the conditions for success, these kids are gonna learn how to speak and talk and understand speech and they're gonna be just as good as a normal hearing child. When the FDA over the last like two to three decades has

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consistently expanded the criteria for implants, and has expanded, like now you can get an implant at, I think, twelve months old. It used to be eighteen months, but I know that they're already doing some preliminary studies with babies that are one years old.

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And, I wouldn't be surprised if that becomes commonplace. But there's a lot of studies that show those kids that get the implant that early, when you test them at ages six and seven, they're pretty much right up there with hearing kids with their

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speech and language. And they do better academically, because in the school system they have to work just a little bit harder to pay attention, so they actually like benefit

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academically. It's fascinating with doctors... Like, in 1999, when I got my first implant, we didn't have cell phones.

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It's not commonplace you. It's not just smart phones, like cell phones just weren't common place. Just thinking about what the

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technology was in 1999 and having doctors being like oh man we're gonna stick this in people's brains, they just had so much faith in human potential and the brain's potential to understand information.

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It's just amazing what the brain can do with information once it gets it for sure. Yeah. I think it's Interesting that

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you're kinda describing it like, learning a language. You mentioned school a couple times. So did you have any particular issues in school like big issues teachers or what kind of support did you have while you were going

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through schooling? Well, I had the IEP that was regulated federally. I benefitted a lot from, I was pretty privileged.

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My dad and my mom always fought really hard with the school system to make sure I got all the resources I needed. As I got older, it was important

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to try to, I guess I kinda learned advocacy from my mom and my dad advocating for me towards me starting to advocate for myself. Just letting the teachers know hey I can't hear you when you're talking while you're also writing on the chalkboard.

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I was not always my own best advocate. Also, in middle school and high school I was so concerned about my social life [Inaudible] Hearing loss is kinda like an invisible disability.

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I mean, I have implants in my head so it's visible. But, for a lot of people with hearing loss you can't really see that they're not understanding.

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Hearing people sometimes, they're not as understanding. Well there's like a hearing people sometimes they don't understand that like I might be understanding 85% of what you're saying and my brain can fill in a lot of the context and I can figure out that

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last 15%, but I have to work so much harder to understand and sometimes I miss things you know. As far as school, at that point, I benefitted a lot from privilege.

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I got pretty much everything I needed, even though I wasn't my best self advocate all the time. In terms of telling people that you have hearing loss, how do you go about telling people that you just meet?

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How soon do you tell people, or maybe do you kind of explain to them what's going on? In the last decade or so, I have two devices on my head, so it's pretty, and they're not like this small, invisible hearing aid, they're pretty visible.

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And I speak with a slight deaf accent. I don't really feel the need to just tell someone right away. But in the professional setting, especially when I'm on the phone, or if I'm on a Zoom call, sometimes I make sure I mention it

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pretty early on, like hey I have hearing loss. I might ask you to repeat yourself a few more times. I don't hide my hearing loss at all. I did a really, really big charity bicycle ride in 2013 and 2015, to

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raise money, for people who needed the implant, who couldn't afford it. There's a time period where I was pretty well known in the implant and hearing loss communities.

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I was on the news a lot talking about hearing loss and meeting a whole bunch of people with hearing loss and going to hospitals and clinics and just doing a lot of hearing loss community type things.

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Most people with hearing loss, I don't wanna speak for other people, but I think it's a little bit different for me because of my involvement with the hearing loss community over the years.

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It's part of who I am in a public space. I'm pretty comfortable talking about It.

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It comes up pretty often and pretty early I my interactions with people. Going back to the bike ride that you did, what inspired you to do that or pushed you to do that and make it such a huge thing to raise

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awareness? I actually was a pretty lost young adult. I really struggled socially in high school.

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I really had the mindset that, like, I got the implant. I'm normal now. I didn't advocate for myself.

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I stopped learning about any new technology that could benefit me. I didn't use any assistive listening devices.

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I didn't talk on the phone, it's just a lot of text messages. In high school, I had such a hard time making plans.

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And then, either related or unrelated to all that, I started smoking a lot of weed and experimenting with a lot of drugs in high school. And then when I was a young adult, I started drinking.

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It was really early on I my alcoholism I was drinking every day, but I wasn't blacking out every day. It's still pretty early on I my alcoholism, but I was smoking weed everyday.

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It happened for years at that point. Riding my bike became my first passion/hobby that I had had since probably video games.

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I got really into video games in middle school. And then, when I was in high school, I kind of stopped playing video games. Because I was so focused on

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smoking weed and trying to make friends. And then as a young adult when I found cycling, that was my first passion I really had as an adult. I thought I was probably gonna get

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kicked out of my parent's house because I wasn't doing anything for my education. I was 23 years old. I was working full-time and spending all my money on drugs and

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just really wasn't doing anything. I just kinda had this idea like I just wanna ride my bike all the time. I just had the idea of like what if I do a charity bike ride?

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I can just ride my bike all the time that way. It really wasn't me. I was the one that rode the bike but, people pushed me.

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I didn't think it was gonna be 10,000 miles. It was kinda like oh, I'll just ride my bike down to Atlanta and Florida and see the Braves and the

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Marlins and Tampa Bay. I'll just do this by myself with a couple bags and a bike. My dad was like hey, people were

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excited about this. Why don't you do something bigger? I was like well, what if we went to all the baseball stadiums? I said that and I had no idea how many miles that would ultimately

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end up being. I'm not a geographic savvy person. It wasn't until I start putting the route together that I was like damn, this is a 10,000 mile ride.

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This Is a big undertaking. It's not like a really heroic story, I was just honestly trying not to get kicked out of my parent's house. I came up with an idea and it ended up being a super amazing

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thing. Are you still doing anything related to that? Obviously, you're not riding your bike across the country anymore.

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But are you still planning to do any of that or maybe smaller rides or expanding that somehow? Yeah, we've done a few smaller rides. We did a ride in 2014 because I got hit by a truck at the very

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very end. I was two days away from from the dentist. In 2014, I went back down to

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Florida. And then finished the last 180 miles. In 201, I did it cross country

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trip just only Washington to Ocean City, Maryland. And I tried it. I gotta do everything the right way I thought I would take a lot more pictures and keep a blog and

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do all that stuff. It was just a lot harder. My alcoholism had progressed a lot and it was just a lot harder physically.

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Then I got sober in 2015 right after I finished that ride. And then since I've been sober, I've been sober for six years now, it's just been so much more of a

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focus on and family. I got married two years ago. We bought a house about two years ago too. I'm still working full time.

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My father, he's an amazing, amazing human being. He was the one that took me to all the doctors appointments for the better part of the decade before I

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got the implant. He was the one who found out about implant at a time when it wasn't the most commonplace thing. They're still not super commonplace.

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Just in the wild, like just in everyday life, I only an implant maybe once a month. It's pretty uncommon, at least here in Annapolis.

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And back in 1999 there were only like 5,000 people worldwide that had them. Back then it was all seen as experimental. He sold everything he had almost except for the house in order to

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pay for it. He's in his late 60's now and he's still working full time because of me. He sold up hundred and hundred of thousands of dollars on a hearing

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aid and implant and all the re-programming and devices and stuff. He made a huge sacrifice. Even though I did the bike riding, he did most of the organizational

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stuff. He did most of the fundraising and stuff. Since 2015, since I got sober and

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I've been so much more focused on family, he's actually turned the charity from a benefit, LLC. He actually got it registered as a 401(c)3.

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And that was just last year. He still gets fundraising. We're still doing about two surgeries a year right now.

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Just, paying for surgery. Covid obviously put a lot of surgeries on the back burner because hospitals were just too busy with other things to schedule implant surgeries.

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But we have one coming up in February. So we're still operating as a charity.

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I actually just made plans to do it a ride this Spring. It's gonna be in late April and May.

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I did a baseball themed one in 2013 and since 2013, there's been two baseball stadiums that have opened up brand new ballparks down in Atlanta and also and in Arlington, Texas.

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It's basically just an excuse to go on a long bike ride and get some media coverage and social media stuff to raise a lot more money for the charity. It's about about 1,500 miles.

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I think I'm leaving on April 26th. I'm going down to Atlanta. And then, I have to ride to Arlington, Texas from there.

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That's coming up this Spring. I haven't done a long bike ride in a while. So I'm really looking forward to I because I do like being on the road.

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I think it's a really beautiful way to see the country. You can feel the road and like see the scenery change really slowly.

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It's really cool. I'm looking forward to I because it's been a while since I've been on the road. What's your favorite place you've

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been to so far? [Interruption in audio] The whole stretch from Minnesota all the way to Seattle and just being in the Great Plains before you get to the Rocky Mountains I thought was really really beautiful.

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It was just a battle with the wind sometimes. Some days I did 120 miles and I was able to do 140 the next day because the wind was with me.

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Then the wind would turn against me and I could only go 80 miles and it was just torture. I just really like the vastness of that part of the country.

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I also just really like the desert. I went from Anaheim to Phoenix. I went through Joshua Tree and 29 Palms and it was just gorgeous.

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It was also pretty isolated and desolate out there. But when the sun starts going down But I mean, just like when the sun with are going down, all the purples and greens, and all the colors start to come out of the desert at night.

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Also, the Four Corners area, Colorado, Utah, Nevada, and Arizona, I think that's the four corners and those are the four states. In the desert there's just giant

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blocks where I was almost like a valley. The roads were just so impressive because I would see them from so far away. I would literally ride my bike for

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two hours and feel like man I'm not any closer to this thing. Everything's just so so far away and so big. I would ride for another hour and a half and think oh, I'm getting closer.

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I really liked that. You never know what that day is gonna bring. I really love Appalachia too. I think Appalachia's harder than

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Colorado. In Colorado you can go up a hill for 13 miles but it's all even graded. You can get a good tempo and go up a mountain.

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And then you would see a sign that says downhill for 13 miles, trucks use lower gear. You can go downhill for like 20 miles.

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That's like half your day right there and you're done. But, in Appalachia, you're just going straight up and straight down, straight up straight down

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non-stop for the whole day. You're on your smallest gear and then your biggest gear going downhill and uphill for a mile and a half or two miles.

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I find Appalachia to be so much harder. The challenge is kinda cool but I think it's just really pretty because you have some man-made

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beauty in Appalachia that you don't really see out West. Out West there's big giant rocks and a lot of houses and architecture, not really pretty architecture. But, out East, in Appalachia you can see three or four

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[inelligible] of the Appalachian mountains. You can see little church people and brick buildings. This is a little bit more man-made beauty I have to say in Appalachia.

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It's all good. I can't really think of an area I hate riding in. It's all really cool and it's all part of the experience to get from here to there on a bike.

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The whole thing is pretty cool. I know that when you did do this ride this kind of started to influence your decision to think about possibly getting a second implant, if that's correct.

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Could you talk a little bit more about the decision behind getting it? And then your experience once you had it and how satisfied you are with it.

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Yeah, I had an incorrect assumption prior to going on the bike ride. To me, everything sounds really really natural and normal. Things don't sound metallic or robotic at all.

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With different peoples voices, everything sounds like it's supposed to sound. I used the same device for a really long time and never got an upgrade.

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I had the body one processor for a long time. [unintellegible] I'm just gonna keep it the way it is. I really like what I'm getting and I'm not gonna change anything. I had been told for a really long time that my level of

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comprehension and my ability to do well in school and talk on the phone and stuff was pretty exceptional. Most people don't have the results that you have with the implant. You do so great with it.

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When I got the implant in 1999, there were so many fewer case studies. The n number was so much smaller. They just didn't have a lot of

00:40:50.830 - 00:40:50.870

data to go with. Now if you have anyone with the type of hearing disability that I have, that progressive hearing loss, the fact that I had a hearing aid as a child and the

00:40:50.870 - 00:40:50.910

fact that I got the implant without spending, I didn't spend a long time without normal hearing. I had hearing and that was it. I needed a hearing aid.

00:40:50.910 - 00:40:50.970

I definitely needed those. [unintelligible] I probably wasn't getting a lot from the hearing aids but I didn't spend a long time like that. My hearing loss was pretty progressive and then it got really

00:40:50.970 - 00:40:51.000

backwards. Anyone who had my history would probably do really really well with the implant and it's not unexpected.

00:40:51.000 - 00:40:51.030

I went to my wife and I was not keeping up with anything. I was like I'm like a miracle. I really took everything for granted.

00:40:51.030 - 00:40:51.070

Because I thought I was already one of the bests, I couldn't make it better. I thought this is already as good as it's gonna be.

00:40:51.070 - 00:40:51.090

so I just need to accept that and be happy. When I was riding, that was the first time I met people, it wasn't the first time I met people, but

00:40:51.090 - 00:40:51.100

it was the first time I talked to and communicated with a lot of different people that had more experience... 10 or 20 years older than me that had been more active in hearing loss for a really long time.

00:40:51.100 - 00:40:51.100

They were like activists. They were trying to get their local theater to have a movie night and trying to get a hearing booth installed at their local airport.

00:40:51.100 - 00:40:51.100

Things like that. So many of them just kept on saying why don't you get your second implant? I always thought that the reason everything sounded so normal and natural to me was I thought the

00:40:51.100 - 00:40:51.100

super small amount of hearing that I had left in my unimplanted ear. I thought my brain was using that super small amount of acoustic hearing to make everything sound natural. I thought It giving shape to what I was hearing and experiencing.

00:40:51.100 - 00:40:51.100

I kept on talking to more and more people that were like if you get the implant, you're gonna love It. It's gonna be like night and day. After I got sober, I just kept on thinking about It and I knew the

00:40:51.100 - 00:40:51.100

Insurance would cover It. I went to my audiologist and I said hey I think I'm interested in maybe pursuing It. It was kinda like why not? She listened to my concerns.

00:40:51.100 - 00:40:51.100

Everything sounds really normal and natural to me now. I think It's because my unimplanted ear. She took me into the hearing booth and we hadn't tested my unimplanted ear because we wanted to reprogram the implant.

00:40:51.100 - 00:40:51.100

That's where I get 99.9% of my comprehension anyway. We tested my other ear for the first time in probably 15 years [unintelligible] Even if you lose all your hearing in that ear with the Implant, you're not gonna miss that at all.

00:40:51.100 - 00:47:33.240

She was really really clear about that. And I went forward with it. [Interruption in audio] Going back to what you said about the second implant you got, it seems like it

00:47:33.240 - 00:47:48.920

was a lot easier with insurance and I know the whole thing is that the insurance costs aren't often covered. Could you talk a little bit more about that and how you're raising money and how much money you try to raise for each surgery?

00:47:59.100 - 00:48:11.520

It's actually a pretty complicated answer. It actually is covered by most major insurances. I think there are certain states that actually have a law that insurance companies are not allowed to have an exclusion for

00:48:11.520 - 00:48:24.450

implants anymore. In the last two decades, there's just been so many studies and the possibilities and numbers keep on going up.

00:48:26.000 - 00:48:32.890

This Is the most successful intervention for hearing loss. Most insurance companies cover it now.

00:48:32.890 - 00:48:57.500

As far as our charity is concerned, I'm a proponent of universal healthcare so I would hope charities like ours don't have to exist in the future. I think it's absurd, the fact that my father's still working because

00:48:57.500 - 00:49:12.600

of these medical decisions that were made in the 90's. It's painful. He's 66. He should be retired.

00:49:12.600 - 00:49:24.600

He only lives two miles from us. He should be able to come over here and spend a lot more time with his granddaughter. He's working full time and my

00:49:24.600 - 00:49:34.600

mom's working full time. A lot of that has to do with... because it wasn't covered by insurance. It was so long ago.

00:49:34.600 - 00:49:48.210

He passed out of pension. He passed out two 401k's. At one point he had silver. He sold his silver and refinanced the house.

00:49:48.210 - 00:50:14.200

The typical surgery, I think, costs between $75,000-$150,00 depending on the hospital's negotiation with the insurance company. Just the device itself that goes

00:50:14.200 - 00:50:32.800

into the patient's head, just that implanted thing costs $35,000 most of the time. Then you have your surgeon fee, your anesthesiologist fee, you have the external device, you have

00:50:32.800 - 00:50:51.800

a whole bunch of audiological tests and exams you take before the implant. Because it's a pretty big investment in resources and time, the hospitals are sometimes a

00:50:51.800 - 00:51:17.680

little but reluctant to give implants or have surgeries for people who don't seem willing to commit to like hey after you get the implant you have to come back to the hospital on a very very regular basis to get reprogrammed.

00:51:17.680 - 00:51:38.620

A really good clinic that does surgery also has, they call it different things, but basically working with educators and speech and language pathologists that directs each patient.

00:51:38.620 - 00:52:01.800

It's one-on-one listening therapy to learn how to use your implant and learn how to hear again basically. When I got my implant, I went back

00:52:01.800 - 00:52:13.700

to Johns Hopkins every Wednesday once a week for a whole year to just repeat words and repeat sounds, practicing talking on the phone. It kinda made me uncomfortable

00:52:13.700 - 00:52:35.000

because my brain had gotten so good at using visual cues to extract meaning and understand things that are going on around me. If I wasn't forced to, my brain

00:52:35.000 - 00:52:51.950

would not use the implant. [unintelligible]. All these appointments, I think they cost like $250 out of pocket and multiply that by 52 weeks a year.

00:52:53.000 - 00:53:20.930

That's a huge expense. Our charity basically exists to help people who don't have insurance or they're in some sort of situation where their insurance didn't cover it.

00:53:20.930 - 00:53:43.900

We had a case a couple years ago where somebody's implant failed. They had used it for 15 years and then it stopped working. It was out of warranty because it had been out of that person's body for so long and they couldn't cover for a replacement.

00:53:49.100 - 00:54:05.440

So, they had an implant but the insurance company couldn't cover it. We have an application on our website where people put in all their information and tell us

00:54:05.440 - 00:54:28.320

their story and why they need the money and stuff like that. We generally don't have a long wait. We usually have two or three people somewhere along in the long, long process.

00:54:28.320 - 00:54:45.500

What we usually do is we help them through the insurance process. Sometimes they end up getting something covered without needing any financial assistance.

00:54:45.500 - 00:55:00.600

There's a lot that goes into it. We don't actually pay $75,000 for the surgery. We actually have an agreement with

00:55:00.600 - 00:55:14.380

a couple other charities where we get devices from the manufacturer. There's three manufacturers. There's Advanced Bionic, there's Cochlear Corporations, and there's MED-EL.

00:55:14.380 - 00:55:33.220

Those are the ones that make the internal devices. They provide the software and audiological assistance. The devices just go into the person's head. Those things cost $35,000.

00:55:33.220 - 00:55:52.200

We basically, through working with a couple other charities, had acccess to a certain number of free implantable devices a year. What we basically do is wer use

00:55:52.200 - 00:56:02.800

that free device. The surgeries, the insurance companies usually cover it. But hospitals usually lose money

00:56:02.800 - 00:56:19.750

on the surgery most of the time, just the way that the negotiations usually shake out. We basically have a free device in one hand that the hospital usually has to pay cash for.

00:56:19.750 - 00:56:33.000

They have to order it seven days before the surgery and get it into the hospital. They have to write a $35,000 check to get those devices in the hospital.

00:56:33.000 - 00:56:50.000

There's not a hospital in the country that has an inventory of these devices waiting to be implanted. It's a really sophisticated and expensive piece of equipment. We have one of these devices in one hand and we have a

00:56:50.000 - 00:57:04.630

$5,000-$10,000 donation that we will make to the hospital in the other hand. We get in between the patient and the hospital and start negotiating.

00:57:04.630 - 00:57:25.900

It's challenging. The hardest thing is just to find the right person to talk to in the hospital because if you talk to the Chief Financial Officer they'll just be like oh, wait,

00:57:27.100 - 00:57:43.200

we're not gonna accept a $10,000 donation to do a $100,000 surgery for free. If you talk to the right person who understands the total financial ramifications of the

00:57:43.200 - 00:58:02.200

surgery, then it becomes a lot easier. The hardest part for us is just to find the right person to talk to to understand what we're trying to do. A lot of times, the surgeon drastically reduces his surgeon

00:58:02.200 - 00:58:22.100

fee and the anesthesiologist often does as well. It's a complicated complicated process. It can take up to six months sometimes for that to happen. That's in comparison to me.

00:58:22.100 - 00:58:37.790

I knew that I got the implant and I was like I have insurance, I'm gonna be able to get the implant. I'm gonna get the surgery scheduled and done in only four months.

00:58:37.790 - 00:58:54.900

In our situation it usually takes six months of going through the application, negotiating with the hospital, securing the device that we're gonna get into the person's ear, and often writing multiple checks to different organizations

00:58:54.900 - 00:59:11.450

and people. Some hospitals have a complicated paperwork requirement. We've had to request invoices for

00:59:11.450 - 00:59:24.560

$1 before because they have to have an invoice, just weird complicated things. It's easier when we're working with a hospital we've worked with before.

00:59:24.560 - 00:59:38.720

We've done 19 surgeries so far. Number 20 should be scheduled to happen February. Every single one is different.

00:59:38.720 - 01:00:05.900

Thankyfully, there's a need for it for sure, but it's not a crazy need. We usually don't have a waiting line for applicants.

01:00:05.900 - 01:00:20.140

We usually have like two or three people in the works like I said. Most of the requests that we get, we have to deny because we get a lot of requests for people out of

01:00:20.140 - 01:00:48.820

the country where they just don't have the medical infrastructure to do the surgery and they're trying to figure out how to get a flight to America to get the surgery and then go back home. In the bylaws of our organizations, we had to focus

01:00:48.820 - 01:00:58.300

what we do and try to have... we're pretty much just two or three people. We don't get [unintelligible] from

01:00:58.300 - 01:01:11.700

the organization. It's just all volunteers doing it. In our bylaws, we say we can only do American citizens because if we were gonna accept applicants from all over the world, we don't have

01:01:11.700 - 01:01:25.700

the scope. We don't have the knowledge to be able to handle those types of requests. It's a thing that gets covered now a days.

01:01:25.700 - 01:01:46.010

Some people just need help with the deductible. Our organization is just kinda there for those cases where people don't have insurance. That's great.

01:01:46.010 - 01:02:04.400

I did not realize it was such a complicated process from start to finish. Shifting the focus a little bit to hearing loss during covid because obviously, so many things happened

01:02:04.700 - 01:02:18.700

around covid that affected people's hearing. Did you notice, at all, any differences or any particular issues when it first started in terms of masks or partitions being up everywhere? Did that make it significantly

01:02:18.700 - 01:03:18.110

harder for you to hear anything? Masks definitely made I harder to hear. Not just the lack of lip reading [unintelligible].

01:03:18.110 - 01:03:25.450

I lip read so well that glass partitions or plastic partitions don't bother me. I can read somebody's lips and not have a hard time understanding them.

01:03:25.450 - 01:03:28.100

It was definitely hard at first. I'm really lucky because I do so well with the implant. I'm trying to think what my experience has been. Right at the beginning of the pandemic, in the last 18 months.

01:03:28.100 - 01:03:45.510

I work in a grocery store which is already kind of a challenging environment because it's pretty loud place. It's kinda like a warehouse in the back. It's just a busy store so it's already a hard place.

01:03:45.510 - 01:04:10.400

It's definitely challenging. Now that things are starting to open back up and people are starting to go out into crowded spaces more, is there any particular issue you have with

01:04:10.400 - 01:04:33.000

hearing and crowded spaces or trying to hear someone when there's a noisy environment? Yeah. It's always harder to hear in a noisier crowded environment. A lot of people, what happens when they're in a more challenging

01:04:33.000 - 01:04:47.670

situation is they start leaning on other visual cues. Like, they can't hear as well so they start lip reading subconsciously. Usually people with perfectly

01:04:47.700 - 01:05:09.100

normal hearing can lip read a little bit to some degree. Even a perfectly hearing person, if you put something in front of a mouth, they're gonna understand it a little bit less. Or they'll get 100% of the words right but their brain is gonna be

01:05:09.100 - 01:05:22.920

working a little bit harder than normal. They're just not gonna be aware of that. For someone with hearing loss, they really aren't aware of it because they're already at a disadvantage.

01:05:22.920 - 01:05:50.600

I definitely notice, I keep up with a lot of the medical journals. People with hearing loss, even moderate hearing loss, they need more sleep than hearing people do

01:05:50.600 - 01:06:05.250

because their brains are just working so much harder to understand what's going on around them. I definitely notice fatigue at times, like in the early days of the pandemic and I was just getting used to masks.

01:06:05.250 - 01:06:29.030

Even today, we're still wearing masks at work. I really only took a huge step back In my hours at work. I'm not really working full time anymore so I can spend more time at home to take care of the baby and supporting my partner.

01:06:29.030 - 01:06:43.750

I was so surprised because when I stopped setting my alarm at 4 in the morning, and I just let myself get as much sleep as I need, I find that even with the implant, I need sometimes nine and a half hours of sleep.

01:06:43.750 - 01:07:14.400

There's a lot of medical journals that have suggested that's because our brains are working harder. I think that for a lot of people, there's some really interesting stuff coming out of Hopkins in the last 5-10 years that I think

01:07:14.400 - 01:07:36.100

really applies to COVID because in America there's still a little big of a stigma with hearing loss where people put off getting their first pair of hearing aids for like seven years. From when they should probably get hearing aids to when they do get

01:07:36.100 - 01:07:50.600

hearing aids, there's a seven year gap on average. So, some people are waiting way too long to get hearing aids. What's happening is their brains are working harder to get information that they need.

01:07:50.600 - 01:08:20.730

But, more importantly, just slowly, they start declining certain social activities. Like the amount of phone calls they answer per week goes down just a little bit, not something you'd notice, but on average and

01:08:20.730 - 01:08:24.810

over a few years you notice they aren't talking on the phone as much as they used to. It's probably because of the hearing loss.

01:08:24.810 - 01:08:51.330

It's a little bit more challenging and a little bit more frustrating talking on the phone. They might do one less social activity per week because maybe they have one friend that really loves this one restaurant where

01:08:51.330 - 01:09:03.600

the music is always just a little bit too loud. They do one less social activity a week because they say no to this guy because they don't like going to that one restaurant. Instead of focusing on new skills or rich conversation, the brain is

01:09:03.600 - 01:09:20.710

focusing on just understanding the next word or trying to get some context into that person's facial expression to just give them a little bit more information to follow the conversation along. There's been a lot of studies out of Hopkins that linked it to early

01:09:20.710 - 01:09:41.520

onset Alzheimer's and Dementia. If people got hearing aids earlier, it could have put off the Dementia about three years. That's the hard thing with hearing loss.

01:09:41.520 - 01:10:00.560

Hellen Keller has that quote where she says "my blindness separated me from the world, but my hearing loss is what separated me from people." Basic communication is hard with hearing people.

01:10:00.560 - 01:10:17.380

I see people at work all the time. Two people that hear completely normally, young adults, they're trying to talk with masks and they can't understand each other. So, one of them pulls down their mask and they're not lip readers

01:10:17.380 - 01:10:38.800

but they know that will help them understand each other. The thing about all people with hearing loss is, I think it's been a hidden casualty from COVID. The problem is that it's so

01:10:38.800 - 01:10:58.670

invisible. People with hearing loss that I got to know from bike rides with them, all the people I know that attended the ball games they already know how to self advocate.

01:10:59.600 - 01:11:22.900

They're already doing everything they can for the hearing loss. They're already using assisted listening devices. They already know what to do to get people to repeat themselves. But, I think about when COVID happened, to me, before I went on

01:11:22.900 - 01:11:46.200

the bike rides, before I learned, before I benefitted from the hearing loss community, I think I'd be a lot more frustrated and a lot more withdrawn. It's hard because I don't know

01:11:46.200 - 01:12:03.540

anybody with hearing loss. The people with hearing loss that are suffering in silence, that's the problem is they're suffering in silence.

01:12:03.540 - 01:12:44.200

All the people I know with hearing loss that are strong advocates for themselves [unintelligible]. The people with hearing loss that I know have said their hearing, because of the pandemic and stuff, is definitely screwed because the

01:12:44.200 - 01:13:18.400

people who aren't advocating for themselves they're not the people who went to the ball games in 2013. They're not people I've kept up with over the years. [unintelligible] Yeah, that makes a lot of sense.

01:13:18.400 - 01:13:30.400

Thank you. As we're wrapping up, I don't want to keep you for too long, is there any last thoughts you have or anything I should have asked you that you want to bring attention

01:13:30.400 - 01:14:22.540

to? I think we covered a lot. I just have a lot of respect for the professionals in the field and speech and language pathologists and deaf educators. And the fact that we can have this conversation on the phone and your

01:14:22.540 - 01:14:34.000

voice is being beamed into my brain. That this technology existed in 1999 when I needed it. This isn't some miracle of the 21st century. This is 20th century technology.

01:14:34.900 - 01:14:48.900

I think it's just having faith in the human brain. What the brain can do if I gets information it needs, that's what it's all about.

01:14:53.100 - 01:15:18.400

I think the movie The Sound of Metal, did you see that movie? I didn't No? It has a really negative portrayal of cochlear implants. I kinda enjoyed parts of the movie

01:15:18.400 - 01:15:35.050

because the movie I think was a lot about acceptance. I think acceptance it's super important, not just with hearing loss, but accepting things as they are. The movie I think has a really good theme on that.

01:15:35.050 - 01:15:58.020

What was disappointing is implants don't get a lot of coverage. There's not a lot of representation. Me and my partner flew to London right before the pandemic because I have a sibling in law that lives in Scotland.

01:15:58.020 - 01:16:28.460

We were watching the [unintelligible] video it'll show how to survive a plane crash and one of the cartoon characters that was in a life vest had an implant on. I was like woah, that was the first time I saw representation

01:16:28.460 - 01:16:44.340

with an implant. This is super cool. The Sound of Metal is critically acclaimed. I think the Amazon studies pays money because every time I see an

01:16:44.500 - 01:16:57.660

Amazon studies movie that is highly regarded, I'm always kinda disappointed in it because I think they're paying people off or something. They had some good points.

01:16:57.660 - 01:17:24.150

It was a movie also about addiction and they had a lot of drug stuff in there too and it was cool. They could have done the same thing without the medically inaccurate or factually inaccurate things in the movie.

01:17:24.150 - 01:17:36.800

Like, they quoted the surgery being $40,000 and they said that insurance doesn't cover it. Those two things have been untrue for a very long time.

01:17:38.600 - 01:17:55.500

The surgery has always been more expensive than that and insurance has covered it pretty much for 15-20 years pretty much across the board. They use these prosthetic devices in the movie that were super

01:17:55.500 - 01:18:04.400

inaccurate. There's just so much bigger and bulkier. The surgery scar they put on his

01:18:04.400 - 01:18:23.310

head, kinda like the old school surgery they did in the 90's where they had this huge skin flap on the side of the head. But the new surgeries now, it's a super small incision under the ear and they just slide the implant along the skull.

01:18:23.310 - 01:18:36.220

There's no visible scar basically. The fact that he got the implants and he had the bad experience. Like, everything sounded robotic

01:18:39.300 - 01:18:44.260

and metallic. The doctor said yeah this is just how it is. It's gonna get better.

01:18:44.260 - 01:19:00.870

But then there's no follow up and it's just so different than how it would actually be. A hospital that does implants, it's gonna manage your expectations a bit.

01:19:00.870 - 01:19:15.000

The audiologist, I feel like they're always saying hey it's not gonna sound great on the first day but you come back the very next day for a follow up appointment and the next week and then you go two weeks later.

01:19:15.000 - 01:19:33.970

It's just all about encouragement and just if you continue to wear it. In the movie, the guy with hearing loss was a normal middle-aged adult and he had pretty rapid onset hearing loss.

01:19:33.970 - 01:19:49.600

His brain already knew what to do with that information. He probably might never enjoy everything the way that he used to. But given the amount of time, and

01:19:49.600 - 01:19:58.950

probably not even that much time, he would do really really well with an implant. His speech comprehension would probably be above 95%.

01:19:58.950 - 01:20:06.330

He would probably enjoy music again. It wouldn't be the same, especially not right away.

01:20:06.330 - 01:20:19.400

All the science, all the studies say this person with one of the best outcomes you could ever expect. And then he just gives up in a

01:20:19.500 - 01:20:32.900

week and he turns down the implants. He just enjoys the silence and that's the metaphor for acceptance I think they're going for. I feel like they could have made

01:20:32.900 - 01:20:48.880

the same point but without the hugely inaccurate other stuff going on in that movie. I just wanted to kinda go off on that a little bit.

01:20:50.730 - 01:21:06.870

I think it's definitely interesting how its portrayed in films and movies. Is there any other TV shows or maybe popular culture ways you've seen this brought up at all? I haven't.

01:21:06.870 - 01:21:36.690

I think that representation is probably pretty low for implants. I don't keep up with a lot of popular culture stuff. I'm sure there is but none that I'm aware of. I have a daughter and I'm probably gonna start watching kid's shows

01:21:36.690 - 01:21:42.310

at some point. When I saw that implant safety video, I was shocked. I almost smacked my wife.

01:21:42.310 - 01:22:14.550

I was like dude, she has an implant. I think representation is pretty uncommon. That's why when I do see it, it's so rare. That's why I was so disappointed with the Sound of Metal.

01:22:14.550 - 01:22:53.760

In the 70's it was just like hey I got the implant. Look at me. It just really bothered me that there was a lot of factually inaccurate stuff.

01:22:53.760 - 01:22:57.570

That's what really bothered me. The whole deaf and sign language community there's a whole bunch of stuff from 2000 to 2010, documentaries just talk about the conflict that the deaf community

01:22:57.570 - 01:23:07.070

has, the implant. That's definitely gotten some media coverage over the years. I think the issue's really

01:23:07.070 - 01:23:25.400

overblown. So much hearing loss is genetic. You have so many people with hearing loss that use multiple strategies in order to hear and understand.

01:23:27.000 - 01:23:44.080

I don't use sign language at all to communicate. There's a point where my whole family was taking sign language classes because we didn't know that the implant was a possibility.

01:23:44.080 - 01:24:00.350

We thought that's what the future is gonna be so we were all starting to learn it. I got the implant and we were like hey speech and language, we're gonna commit to this.

01:24:00.350 - 01:24:11.660

I stayed in the public school and so I never had to learn it so I didn't. There's an organization called the Hearing Loss Association of America.

01:24:11.660 - 01:24:31.140

Their headquarters is in Bethesda. They're the leading advocacy and lobbying group for hearing loss issues in the country. They had a convention that I went

01:24:31.140 - 01:24:49.400

to in 2015. It definitely skews older. There's a lot of older retired people there that want to start advocating for getting closed captioning on TV and things like

01:24:49.400 - 01:25:00.320

that. And just basic accessibility and using the Americans with Disabilities Act to expand accessibility to people with hearing loss.

01:25:00.320 - 01:25:13.850

That's what they still do. There's definitely not a lot of young adults that go to this convention because we don't have as much money to travel and stuff like that.

01:25:13.850 - 01:25:43.500

There's usually a couple pockets of young adults and people in their younger 30's with hearing loss. We get together with everyone else in the city. I kinda regret not knowing as much sign language because we'll go out

01:25:43.500 - 01:25:57.300

to a bar or a noisy environment. This is the first group, we all have hearing loss to some degree or another. Some people had implants, some people had hearing aids, some

01:25:57.300 - 01:26:03.960

people have an implant that frankly doesn't work very well for them. Some people are really really good at lip reading and some people aren't.

01:26:08.800 - 01:26:30.090

We're all probably pretty good at lip reading. But we'll be at the bar and I would be talking and sometimes getting a little bit of extra information is helpful. What all these other young adults are doing that I wasn't doing is

01:26:30.090 - 01:26:50.800

signing maybe like two words and a sentence. They're speaking but they're signing maybe the verb or the noun or the accent in the sentence. That was just a little extra

01:26:50.800 - 01:27:00.750

information. It was primarily oral and speech and language. But it was just so interesting to

01:27:00.750 - 01:27:07.280

see sign language and spoken language used. Everything's just another toolbox. It was just cool to have that to use.

01:27:19.400 - 01:27:28.800

That's definitely something that's super interesting to hear about. That was part of the reason that I decided to pick this for my project, actually.

01:27:28.800 - 01:27:41.500

Because I don't think that gets talked about that much. So I'm really glad that you were able to share and help contribute to this. Thank you so much for sharing your

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story with me. I'm going to go ahead and stop the recording.