Jacob Landis Interview, October 30, 2021

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  • Carol Johnson
    So, this is Carol Johnson.
  • Carol Johnson
    I'm interviewing Jacob Landis on
  • Carol Johnson
    October 30th 2021 at 5 p.m.
  • Carol Johnson
    So, before I start do I have your
  • Carol Johnson
    permission to record this interview?
  • Jacob Landis
    Yes.
  • Jacob Landis
    Okay, great.
  • Jacob Landis
    So, getting into it.
  • Jacob Landis
    I just want to ask you some
  • Jacob Landis
    introductory questions about yourself.
  • Jacob Landis
    So, could you tell me about your life, where are you from, how did
  • Jacob Landis
    you grow up? Can you repeat that question
  • Jacob Landis
    again? Sorry.
  • Carol Johnson
    Yeah, could you just tell me a little bit about your life?
  • Carol Johnson
    Like where are you from about your family and how you grew up?
  • Jacob Landis
    Got it.
  • Jacob Landis
    I'm 32 years old.
  • Jacob Landis
    I live in Annapolis, Maryland and I've been here my whole life.
  • Jacob Landis
    I'm married and me and my wife just had our first child about a
  • Jacob Landis
    year ago.
  • Jacob Landis
    I lost my hearing at a young age.
  • Jacob Landis
    It was progressive.
  • Jacob Landis
    When I was 10, I got the cochlear
  • Jacob Landis
    implant.
  • Jacob Landis
    It's a good introduction.
  • Carol Johnson
    Yeah, so going into your hearing loss.
  • Carol Johnson
    Do you know how you lost it? No, there is no etymology to it.
  • Jacob Landis
    My father spent a lot of money and time went to a lot of specialist
  • Jacob Landis
    appointments because in the early 90's, an implant really wasn't on
  • Jacob Landis
    a lot of people's radar, the possibility.
  • Jacob Landis
    So, we got my first pair of hearing aids, when I was four, and
  • Jacob Landis
    then the hearing continued to get worse.
  • Jacob Landis
    My father tried to do everything he could to find out why I was
  • Jacob Landis
    losing my hearing so that they could stop it.
  • Jacob Landis
    And pretty much anything that could be ruled out, like anything
  • Jacob Landis
    that was like genetic and anything you can test for has been ruled
  • Jacob Landis
    out.
  • Jacob Landis
    We still have no idea like why I
  • Jacob Landis
    lost my hearing.
  • Carol Johnson
    So were you born with hearing loss
  • Carol Johnson
    at all? Or did it just suddenly happen?
  • Jacob Landis
    We don't know when it started.
  • Jacob Landis
    They believe that I was born with
  • Jacob Landis
    normal hearing.
  • Jacob Landis
    My mother thought I was slow to
  • Jacob Landis
    develop speech and language when I was about two and a half.
  • Jacob Landis
    She thought I was a little bit behind, so she got me hearing
  • Jacob Landis
    tested and they showed a very, very minor degree of hearing loss.
  • Jacob Landis
    On the audiogram, the decibels and the frequency of the hearing loss.
  • Jacob Landis
    It really wasn't anywhere that would affect human speech.
  • Jacob Landis
    It was only at really really high frequencies.
  • Jacob Landis
    They said, we know that there's at least some hearing loss.
  • Jacob Landis
    Hearing tests aren't very reliable with really young children.
  • Jacob Landis
    Just the feedback is unreliable unless you have, there's some type
  • Jacob Landis
    of brain thing they can do.
  • Jacob Landis
    But, they just continued to
  • Jacob Landis
    monitor it and then every three to six months I did a hearing test
  • Jacob Landis
    and every single one showed it was just getting a little bit worse
  • Jacob Landis
    every test.
  • Jacob Landis
    Then about four and a half years,
  • Jacob Landis
    pretty close to five because I was in Kindergarten, I got my first
  • Jacob Landis
    prescription for hearing aids.
  • Carol Johnson
    And was hearing aid, the only
  • Carol Johnson
    option offered or was there anything else they were
  • Carol Johnson
    considering trying to remediate? Yeah, hearing aids were [the only
  • Jacob Landis
    option].
  • Jacob Landis
    There is no other option.
  • Jacob Landis
    At the time, they had been monitoring my hearing loss for
  • Jacob Landis
    some time at that point.
  • Jacob Landis
    When the hearing loss finally
  • Jacob Landis
    crossed some threshold they finally said alright now you can
  • Jacob Landis
    get implants.
  • Jacob Landis
    There were other things that came
  • Jacob Landis
    later.
  • Jacob Landis
    My mom and dad they were really
  • Jacob Landis
    really active and good advocates.
  • Jacob Landis
    As soon as people suggested
  • Jacob Landis
    different tools that would help me they would generally use them.
  • Jacob Landis
    When I was in first grade, so just like one year after getting my
  • Jacob Landis
    first pair of hearing aids, I got an FM system that was used with
  • Jacob Landis
    the teachers in school.
  • Jacob Landis
    I think by the time I was in
  • Jacob Landis
    second grade, I had probably gotten stronger hearing aids at
  • Jacob Landis
    that point.
  • Jacob Landis
    And by the time I was in third
  • Jacob Landis
    grade, I had made the switch from analog hearing aids to digital
  • Jacob Landis
    programable hearing aids.
  • Jacob Landis
    So, my mom and dad did everything
  • Jacob Landis
    they could to always make sure whatever the doctors were telling
  • Jacob Landis
    them to do, I always had the most, the best tools that they thought
  • Jacob Landis
    that they could give me.
  • Jacob Landis
    If It wasn't for that early
  • Jacob Landis
    intervention, I think my speech and my language comprehension
  • Jacob Landis
    would be a lot worse.
  • Jacob Landis
    All that stuff that they did at a
  • Jacob Landis
    young age and getting me hearing aids as soon as it was possible
  • Jacob Landis
    for me to get hearing aids basically gave my brain
  • Jacob Landis
    information that it needed.
  • Jacob Landis
    And then when I got the implant,
  • Jacob Landis
    my brain got access to information and my brain already knew what to
  • Jacob Landis
    do with that information because I had the hearing aid at a younger
  • Jacob Landis
    age.
  • Jacob Landis
    I think my speech and language
  • Jacob Landis
    would be a lot worse today if it wasn't for that.
  • Carol Johnson
    Yeah, that's great.
  • Carol Johnson
    So could you tell me a little bit
  • Carol Johnson
    more about how the cochlear implant works?
  • Carol Johnson
    And how after you got your second one, especially, how that really
  • Carol Johnson
    changed and affected your hearing and comprehension.
  • Jacob Landis
    The implant to me, it basically uses like an electrode wave
  • Jacob Landis
    inserted into a really thin [unintelligible] membrane.
  • Jacob Landis
    I think there's only like I think between 15 and 21 total electrodes
  • Jacob Landis
    and those electrodes in you know like light up with a certain
  • Jacob Landis
    amount of intensity and power.
  • Jacob Landis
    And they're basically trying to
  • Jacob Landis
    replicate about 10,000 different hair cells that would otherwise be
  • Jacob Landis
    giving your brain information, acoustic information.
  • Jacob Landis
    For most people with hearing loss, hearing loss comes from damage to
  • Jacob Landis
    those hair cells.
  • Jacob Landis
    So the electrodes and implants
  • Jacob Landis
    basically it's like bypassing the damaged hair cells to give your
  • Jacob Landis
    brain information that it would not otherwise get due to those
  • Jacob Landis
    damaged hair cells.
  • Jacob Landis
    The magic of the implant happens
  • Jacob Landis
    in the human brain.
  • Jacob Landis
    I really think it's a lot like
  • Jacob Landis
    reading in the same way that we have to learn how to read.
  • Jacob Landis
    It's something we totally take for granted too because we just look
  • Jacob Landis
    at symbols and look at squiggly lines and we end up all the sudden
  • Jacob Landis
    we have somebody's voice in our head giving us information, and
  • Jacob Landis
    hearing is almost the same.
  • Jacob Landis
    [Interruption in audio].
  • Jacob Landis
    When you hear things, it's not the same as like giving them meaning.
  • Jacob Landis
    Basically, the brain has to learn how to use the hearing in order to
  • Jacob Landis
    understand language.
  • Jacob Landis
    There's an age, it probably starts
  • Jacob Landis
    at birth, I think it's often quoted that ages two through five
  • Jacob Landis
    is like this speech and language learning window and if you don't
  • Jacob Landis
    if you don't like learn how to understand speech before the age
  • Jacob Landis
    of five have drastically lowered outcomes.
  • Jacob Landis
    Like they do foreign language, when you do foreign languages at a
  • Jacob Landis
    young age, children just learn language so much faster.
  • Jacob Landis
    So, basically, my brain learned how to hear it learned speech and
  • Jacob Landis
    language.
  • Jacob Landis
    It did need hearing aids to help.
  • Jacob Landis
    And then, as I got older, hearing aids were able to help me less and
  • Jacob Landis
    less and less.
  • Jacob Landis
    So my brain naturally learned how
  • Jacob Landis
    to compensate because basically I learned a whole bunch of context
  • Jacob Landis
    clues.
  • Jacob Landis
    I learned how to lip read No one
  • Jacob Landis
    taught me how to do that.
  • Jacob Landis
    I just naturally learned how to
  • Jacob Landis
    lip read very well.
  • Jacob Landis
    And then my brain was just
  • Jacob Landis
    screaming for more information and I was using all sorts of visual
  • Jacob Landis
    cues to kinda get that information.
  • Jacob Landis
    And then when I finally got the implant, I was ten years old, so I
  • Jacob Landis
    still had a young brain.
  • Jacob Landis
    I wasn't in the speech and
  • Jacob Landis
    language learning window anymore.
  • Jacob Landis
    That didn't really matter because
  • Jacob Landis
    I already knew, my brain already knew how to turn sound into
  • Jacob Landis
    language.
  • Jacob Landis
    It wasn't like they were gonna
  • Jacob Landis
    turn this on and it was just gonna be white noise.
  • Jacob Landis
    It was just gonna be a different form of information.
  • Jacob Landis
    But my brain, because it was young, it would have really
  • Jacob Landis
    quickly used that information because it would have been
  • Jacob Landis
    screaming for that information for like two to three years at that
  • Jacob Landis
    point.
  • Jacob Landis
    So, when I got the implant, I also
  • Jacob Landis
    knew how things were supposed to sound.
  • Jacob Landis
    So, if I saw like a basketball bounce on the floor, my brain has
  • Jacob Landis
    this expectation like oh, this is supposed to sound like this thing
  • Jacob Landis
    I'm familiar with.
  • Jacob Landis
    And, whenever I heard music I
  • Jacob Landis
    already knew what harmony sounded like.
  • Jacob Landis
    I enjoyed music, even though I was losing my hearing.
  • Jacob Landis
    My brain just did a really really quick job.
  • Jacob Landis
    If people are born deaf and they don't get hearing aids or anything
  • Jacob Landis
    for a long time, let's say they're like ten years old or twelve years
  • Jacob Landis
    old and they say "hey, I'm gonna get the cochlear implant," a lot
  • Jacob Landis
    of times the audiologist is all about like managing expectations
  • Jacob Landis
    because a person like that, they're not gonna ever
  • Jacob Landis
    understand... basically, their ceiling is just so much lower
  • Jacob Landis
    because their brain just has such a harder time making sense of that
  • Jacob Landis
    information.
  • Jacob Landis
    They're often more frustrated and
  • Jacob Landis
    it's all about managing expectations.
  • Jacob Landis
    There's some patients that are older adults they're in their 40's
  • Jacob Landis
    and 50's, They've been deaf for decades and decades and decades,
  • Jacob Landis
    and they want to get the implant.
  • Jacob Landis
    They have to be told, like hey
  • Jacob Landis
    you're gonna use this as a safety.
  • Jacob Landis
    If you wanna hear a train, if you
  • Jacob Landis
    wanna hear police sirens behind you when you're driving, you can
  • Jacob Landis
    use this for environmental awareness.
  • Jacob Landis
    But their expectations have to be managed basically like saying
  • Jacob Landis
    you're not gonna be like in a YouTube video where you hear
  • Jacob Landis
    someone's voice for the first time and you break down crying.
  • Jacob Landis
    That's just not reality for 99% of people.
  • Jacob Landis
    I mean for me, the way I always thought about the implant is It
  • Jacob Landis
    just gives your brain information.
  • Jacob Landis
    Um, but the brain is
  • Jacob Landis
    [unintelligible] the words behind them [unintelligible] interpreting
  • Jacob Landis
    that information.
  • Jacob Landis
    I'm really humbled by the medical
  • Jacob Landis
    professionals in the 60's and 70's they started implanting just
  • Jacob Landis
    single electrodes into profoundly deaf adults.
  • Jacob Landis
    They were just kinda wondering hey if we just do one electrode, will
  • Jacob Landis
    the human brain just perceive the existence of sounds, or have a
  • Jacob Landis
    perception of sound? Obviously with one electrode its
  • Jacob Landis
    gonna be like binary.
  • Jacob Landis
    There's not really any way to
  • Jacob Landis
    convey information unless it's like morse code or binary, I
  • Jacob Landis
    guess.
  • Jacob Landis
    But then you have like doctors in
  • Jacob Landis
    the 70's and 80's that had so much faith in children and the human
  • Jacob Landis
    brain to say not only is the brain gonna perceive sound, but if we
  • Jacob Landis
    set up all the conditions for success, these kids are gonna
  • Jacob Landis
    learn how to speak and talk and understand speech and they're
  • Jacob Landis
    gonna be just as good as a normal hearing child.
  • Jacob Landis
    When the FDA over the last like two to three decades has
  • Jacob Landis
    consistently expanded the criteria for implants, and has expanded,
  • Jacob Landis
    like now you can get an implant at, I think, twelve months old.
  • Jacob Landis
    It used to be eighteen months, but I know that they're already doing
  • Jacob Landis
    some preliminary studies with babies that are one years old.
  • Jacob Landis
    And, I wouldn't be surprised if that becomes commonplace.
  • Jacob Landis
    But there's a lot of studies that show those kids that get the
  • Jacob Landis
    implant that early, when you test them at ages six and seven,
  • Jacob Landis
    they're pretty much right up there with hearing kids with their
  • Jacob Landis
    speech and language.
  • Jacob Landis
    And they do better academically,
  • Jacob Landis
    because in the school system they have to work just a little bit
  • Jacob Landis
    harder to pay attention, so they actually like benefit
  • Jacob Landis
    academically.
  • Jacob Landis
    It's fascinating with doctors...
  • Jacob Landis
    Like, in 1999, when I got my first implant, we didn't have cell
  • Jacob Landis
    phones.
  • Jacob Landis
    It's not commonplace you.
  • Jacob Landis
    It's not just smart phones, like cell phones just weren't common
  • Jacob Landis
    place.
  • Jacob Landis
    Just thinking about what the
  • Jacob Landis
    technology was in 1999 and having doctors being like oh man we're
  • Jacob Landis
    gonna stick this in people's brains, they just had so much
  • Jacob Landis
    faith in human potential and the brain's potential to understand
  • Jacob Landis
    information.
  • Jacob Landis
    It's just amazing what the brain
  • Jacob Landis
    can do with information once it gets it for sure.
  • Carol Johnson
    Yeah.
  • Carol Johnson
    I think it's Interesting that
  • Carol Johnson
    you're kinda describing it like, learning a language.
  • Carol Johnson
    You mentioned school a couple times.
  • Carol Johnson
    So did you have any particular issues in school like big issues
  • Carol Johnson
    teachers or what kind of support did you have while you were going
  • Carol Johnson
    through schooling? Well, I had the IEP that was
  • Jacob Landis
    regulated federally.
  • Jacob Landis
    I benefitted a lot from, I was
  • Jacob Landis
    pretty privileged.
  • Jacob Landis
    My dad and my mom always fought
  • Jacob Landis
    really hard with the school system to make sure I got all the
  • Jacob Landis
    resources I needed.
  • Jacob Landis
    As I got older, it was important
  • Jacob Landis
    to try to, I guess I kinda learned advocacy from my mom and my dad
  • Jacob Landis
    advocating for me towards me starting to advocate for myself.
  • Jacob Landis
    Just letting the teachers know hey I can't hear you when you're
  • Jacob Landis
    talking while you're also writing on the chalkboard.
  • Jacob Landis
    I was not always my own best advocate.
  • Jacob Landis
    Also, in middle school and high school I was so concerned about my
  • Jacob Landis
    social life [Inaudible] Hearing loss is kinda like an invisible
  • Jacob Landis
    disability.
  • Jacob Landis
    I mean, I have implants in my head
  • Jacob Landis
    so it's visible.
  • Jacob Landis
    But, for a lot of people with
  • Jacob Landis
    hearing loss you can't really see that they're not understanding.
  • Jacob Landis
    Hearing people sometimes, they're not as understanding.
  • Jacob Landis
    Well there's like a hearing people sometimes they don't understand
  • Jacob Landis
    that like I might be understanding 85% of what you're saying and my
  • Jacob Landis
    brain can fill in a lot of the context and I can figure out that
  • Jacob Landis
    last 15%, but I have to work so much harder to understand and
  • Jacob Landis
    sometimes I miss things you know.
  • Jacob Landis
    As far as school, at that point, I
  • Jacob Landis
    benefitted a lot from privilege.
  • Jacob Landis
    I got pretty much everything I
  • Jacob Landis
    needed, even though I wasn't my best self advocate all the time.
  • Carol Johnson
    In terms of telling people that you have hearing loss, how do you
  • Carol Johnson
    go about telling people that you just meet?
  • Carol Johnson
    How soon do you tell people, or maybe do you kind of explain to
  • Carol Johnson
    them what's going on? In the last decade or so, I have
  • Jacob Landis
    two devices on my head, so it's pretty, and they're not like this
  • Jacob Landis
    small, invisible hearing aid, they're pretty visible.
  • Jacob Landis
    And I speak with a slight deaf accent.
  • Jacob Landis
    I don't really feel the need to just tell someone right away.
  • Jacob Landis
    But in the professional setting, especially when I'm on the phone,
  • Jacob Landis
    or if I'm on a Zoom call, sometimes I make sure I mention it
  • Jacob Landis
    pretty early on, like hey I have hearing loss.
  • Jacob Landis
    I might ask you to repeat yourself a few more times.
  • Jacob Landis
    I don't hide my hearing loss at all.
  • Jacob Landis
    I did a really, really big charity bicycle ride in 2013 and 2015, to
  • Jacob Landis
    raise money, for people who needed the implant, who couldn't afford
  • Jacob Landis
    it.
  • Jacob Landis
    There's a time period where I was
  • Jacob Landis
    pretty well known in the implant and hearing loss communities.
  • Jacob Landis
    I was on the news a lot talking about hearing loss and meeting a
  • Jacob Landis
    whole bunch of people with hearing loss and going to hospitals and
  • Jacob Landis
    clinics and just doing a lot of hearing loss community type
  • Jacob Landis
    things.
  • Jacob Landis
    Most people with hearing loss, I
  • Jacob Landis
    don't wanna speak for other people, but I think it's a little
  • Jacob Landis
    bit different for me because of my involvement with the hearing loss
  • Jacob Landis
    community over the years.
  • Jacob Landis
    It's part of who I am in a public
  • Jacob Landis
    space.
  • Jacob Landis
    I'm pretty comfortable talking
  • Jacob Landis
    about It.
  • Jacob Landis
    It comes up pretty often and
  • Jacob Landis
    pretty early I my interactions with people.
  • Carol Johnson
    Going back to the bike ride that you did, what inspired you to do
  • Carol Johnson
    that or pushed you to do that and make it such a huge thing to raise
  • Carol Johnson
    awareness? I actually was a pretty lost young
  • Jacob Landis
    adult.
  • Jacob Landis
    I really struggled socially in
  • Jacob Landis
    high school.
  • Jacob Landis
    I really had the mindset that,
  • Jacob Landis
    like, I got the implant.
  • Jacob Landis
    I'm normal now.
  • Jacob Landis
    I didn't advocate for myself.
  • Jacob Landis
    I stopped learning about any new
  • Jacob Landis
    technology that could benefit me.
  • Jacob Landis
    I didn't use any assistive
  • Jacob Landis
    listening devices.
  • Jacob Landis
    I didn't talk on the phone, it's
  • Jacob Landis
    just a lot of text messages.
  • Jacob Landis
    In high school, I had such a hard
  • Jacob Landis
    time making plans.
  • Jacob Landis
    And then, either related or
  • Jacob Landis
    unrelated to all that, I started smoking a lot of weed and
  • Jacob Landis
    experimenting with a lot of drugs in high school.
  • Jacob Landis
    And then when I was a young adult, I started drinking.
  • Jacob Landis
    It was really early on I my alcoholism I was drinking every
  • Jacob Landis
    day, but I wasn't blacking out every day.
  • Jacob Landis
    It's still pretty early on I my alcoholism, but I was smoking weed
  • Jacob Landis
    everyday.
  • Jacob Landis
    It happened for years at that
  • Jacob Landis
    point.
  • Jacob Landis
    Riding my bike became my first
  • Jacob Landis
    passion/hobby that I had had since probably video games.
  • Jacob Landis
    I got really into video games in middle school.
  • Jacob Landis
    And then, when I was in high school, I kind of stopped playing
  • Jacob Landis
    video games.
  • Jacob Landis
    Because I was so focused on
  • Jacob Landis
    smoking weed and trying to make friends.
  • Jacob Landis
    And then as a young adult when I found cycling, that was my first
  • Jacob Landis
    passion I really had as an adult.
  • Jacob Landis
    I thought I was probably gonna get
  • Jacob Landis
    kicked out of my parent's house because I wasn't doing anything
  • Jacob Landis
    for my education.
  • Jacob Landis
    I was 23 years old.
  • Jacob Landis
    I was working full-time and spending all my money on drugs and
  • Jacob Landis
    just really wasn't doing anything.
  • Jacob Landis
    I just kinda had this idea like I
  • Jacob Landis
    just wanna ride my bike all the time.
  • Jacob Landis
    I just had the idea of like what if I do a charity bike ride?
  • Jacob Landis
    I can just ride my bike all the time that way.
  • Jacob Landis
    It really wasn't me.
  • Jacob Landis
    I was the one that rode the bike
  • Jacob Landis
    but, people pushed me.
  • Jacob Landis
    I didn't think it was gonna be
  • Jacob Landis
    10,000 miles.
  • Jacob Landis
    It was kinda like oh, I'll just
  • Jacob Landis
    ride my bike down to Atlanta and Florida and see the Braves and the
  • Jacob Landis
    Marlins and Tampa Bay.
  • Jacob Landis
    I'll just do this by myself with a
  • Jacob Landis
    couple bags and a bike.
  • Jacob Landis
    My dad was like hey, people were
  • Jacob Landis
    excited about this.
  • Jacob Landis
    Why don't you do something bigger?
  • Jacob Landis
    I was like well, what if we went to all the baseball stadiums?
  • Jacob Landis
    I said that and I had no idea how many miles that would ultimately
  • Jacob Landis
    end up being.
  • Jacob Landis
    I'm not a geographic savvy person.
  • Jacob Landis
    It wasn't until I start putting the route together that I was like
  • Jacob Landis
    damn, this is a 10,000 mile ride.
  • Jacob Landis
    This Is a big undertaking.
  • Jacob Landis
    It's not like a really heroic story, I was just honestly trying
  • Jacob Landis
    not to get kicked out of my parent's house.
  • Jacob Landis
    I came up with an idea and it ended up being a super amazing
  • Jacob Landis
    thing.
  • Carol Johnson
    Are you still doing anything
  • Carol Johnson
    related to that? Obviously, you're not riding your
  • Carol Johnson
    bike across the country anymore.
  • Carol Johnson
    But are you still planning to do
  • Carol Johnson
    any of that or maybe smaller rides or expanding that somehow?
  • Jacob Landis
    Yeah, we've done a few smaller rides.
  • Jacob Landis
    We did a ride in 2014 because I got hit by a truck at the very
  • Jacob Landis
    very end.
  • Jacob Landis
    I was two days away from from the
  • Jacob Landis
    dentist.
  • Jacob Landis
    In 2014, I went back down to
  • Jacob Landis
    Florida.
  • Jacob Landis
    And then finished the last 180
  • Jacob Landis
    miles.
  • Jacob Landis
    In 201, I did it cross country
  • Jacob Landis
    trip just only Washington to Ocean City, Maryland.
  • Jacob Landis
    And I tried it.
  • Jacob Landis
    I gotta do everything the right
  • Jacob Landis
    way I thought I would take a lot more pictures and keep a blog and
  • Jacob Landis
    do all that stuff.
  • Jacob Landis
    It was just a lot harder.
  • Jacob Landis
    My alcoholism had progressed a lot and it was just a lot harder
  • Jacob Landis
    physically.
  • Jacob Landis
    Then I got sober in 2015 right
  • Jacob Landis
    after I finished that ride.
  • Jacob Landis
    And then since I've been sober,
  • Jacob Landis
    I've been sober for six years now, it's just been so much more of a
  • Jacob Landis
    focus on and family.
  • Jacob Landis
    I got married two years ago.
  • Jacob Landis
    We bought a house about two years ago too.
  • Jacob Landis
    I'm still working full time.
  • Jacob Landis
    My father, he's an amazing,
  • Jacob Landis
    amazing human being.
  • Jacob Landis
    He was the one that took me to all
  • Jacob Landis
    the doctors appointments for the better part of the decade before I
  • Jacob Landis
    got the implant.
  • Jacob Landis
    He was the one who found out about
  • Jacob Landis
    implant at a time when it wasn't the most commonplace thing.
  • Jacob Landis
    They're still not super commonplace.
  • Jacob Landis
    Just in the wild, like just in everyday life, I only an implant
  • Jacob Landis
    maybe once a month.
  • Jacob Landis
    It's pretty uncommon, at least
  • Jacob Landis
    here in Annapolis.
  • Jacob Landis
    And back in 1999 there were only
  • Jacob Landis
    like 5,000 people worldwide that had them.
  • Jacob Landis
    Back then it was all seen as experimental.
  • Jacob Landis
    He sold everything he had almost except for the house in order to
  • Jacob Landis
    pay for it.
  • Jacob Landis
    He's in his late 60's now and he's
  • Jacob Landis
    still working full time because of me.
  • Jacob Landis
    He sold up hundred and hundred of thousands of dollars on a hearing
  • Jacob Landis
    aid and implant and all the re-programming and devices and
  • Jacob Landis
    stuff.
  • Jacob Landis
    He made a huge sacrifice.
  • Jacob Landis
    Even though I did the bike riding, he did most of the organizational
  • Jacob Landis
    stuff.
  • Jacob Landis
    He did most of the fundraising and
  • Jacob Landis
    stuff.
  • Jacob Landis
    Since 2015, since I got sober and
  • Jacob Landis
    I've been so much more focused on family, he's actually turned the
  • Jacob Landis
    charity from a benefit, LLC.
  • Jacob Landis
    He actually got it registered as a
  • Jacob Landis
    401(c)3.
  • Jacob Landis
    And that was just last year.
  • Jacob Landis
    He still gets fundraising.
  • Jacob Landis
    We're still doing about two
  • Jacob Landis
    surgeries a year right now.
  • Jacob Landis
    Just, paying for surgery.
  • Jacob Landis
    Covid obviously put a lot of surgeries on the back burner
  • Jacob Landis
    because hospitals were just too busy with other things to schedule
  • Jacob Landis
    implant surgeries.
  • Jacob Landis
    But we have one coming up in
  • Jacob Landis
    February.
  • Jacob Landis
    So we're still operating as a
  • Jacob Landis
    charity.
  • Jacob Landis
    I actually just made plans to do
  • Jacob Landis
    it a ride this Spring.
  • Jacob Landis
    It's gonna be in late April and
  • Jacob Landis
    May.
  • Jacob Landis
    I did a baseball themed one in
  • Jacob Landis
    2013 and since 2013, there's been two baseball stadiums that have
  • Jacob Landis
    opened up brand new ballparks down in Atlanta and also and in
  • Jacob Landis
    Arlington, Texas.
  • Jacob Landis
    It's basically just an excuse to
  • Jacob Landis
    go on a long bike ride and get some media coverage and social
  • Jacob Landis
    media stuff to raise a lot more money for the charity.
  • Jacob Landis
    It's about about 1,500 miles.
  • Jacob Landis
    I think I'm leaving on April 26th.
  • Jacob Landis
    I'm going down to Atlanta.
  • Jacob Landis
    And then, I have to ride to
  • Jacob Landis
    Arlington, Texas from there.
  • Jacob Landis
    That's coming up this Spring.
  • Jacob Landis
    I haven't done a long bike ride in a while.
  • Jacob Landis
    So I'm really looking forward to I because I do like being on the
  • Jacob Landis
    road.
  • Jacob Landis
    I think it's a really beautiful
  • Jacob Landis
    way to see the country.
  • Jacob Landis
    You can feel the road and like see
  • Jacob Landis
    the scenery change really slowly.
  • Jacob Landis
    It's really cool.
  • Jacob Landis
    I'm looking forward to I because it's been a while since I've been
  • Jacob Landis
    on the road.
  • Carol Johnson
    What's your favorite place you've
  • Carol Johnson
    been to so far? [Interruption in audio] The whole
  • Jacob Landis
    stretch from Minnesota all the way to Seattle and just being in the
  • Jacob Landis
    Great Plains before you get to the Rocky Mountains I thought was
  • Jacob Landis
    really really beautiful.
  • Jacob Landis
    It was just a battle with the wind
  • Jacob Landis
    sometimes.
  • Jacob Landis
    Some days I did 120 miles and I
  • Jacob Landis
    was able to do 140 the next day because the wind was with me.
  • Jacob Landis
    Then the wind would turn against me and I could only go 80 miles
  • Jacob Landis
    and it was just torture.
  • Jacob Landis
    I just really like the vastness of
  • Jacob Landis
    that part of the country.
  • Jacob Landis
    I also just really like the
  • Jacob Landis
    desert.
  • Jacob Landis
    I went from Anaheim to Phoenix.
  • Jacob Landis
    I went through Joshua Tree and 29 Palms and it was just gorgeous.
  • Jacob Landis
    It was also pretty isolated and desolate out there.
  • Jacob Landis
    But when the sun starts going down But I mean, just like when the sun
  • Jacob Landis
    with are going down, all the purples and greens, and all the
  • Jacob Landis
    colors start to come out of the desert at night.
  • Jacob Landis
    Also, the Four Corners area, Colorado, Utah, Nevada, and
  • Jacob Landis
    Arizona, I think that's the four corners and those are the four
  • Jacob Landis
    states.
  • Jacob Landis
    In the desert there's just giant
  • Jacob Landis
    blocks where I was almost like a valley.
  • Jacob Landis
    The roads were just so impressive because I would see them from so
  • Jacob Landis
    far away.
  • Jacob Landis
    I would literally ride my bike for
  • Jacob Landis
    two hours and feel like man I'm not any closer to this thing.
  • Jacob Landis
    Everything's just so so far away and so big.
  • Jacob Landis
    I would ride for another hour and a half and think oh, I'm getting
  • Jacob Landis
    closer.
  • Jacob Landis
    I really liked that.
  • Jacob Landis
    You never know what that day is gonna bring.
  • Jacob Landis
    I really love Appalachia too.
  • Jacob Landis
    I think Appalachia's harder than
  • Jacob Landis
    Colorado.
  • Jacob Landis
    In Colorado you can go up a hill
  • Jacob Landis
    for 13 miles but it's all even graded.
  • Jacob Landis
    You can get a good tempo and go up a mountain.
  • Jacob Landis
    And then you would see a sign that says downhill for 13 miles, trucks
  • Jacob Landis
    use lower gear.
  • Jacob Landis
    You can go downhill for like 20
  • Jacob Landis
    miles.
  • Jacob Landis
    That's like half your day right
  • Jacob Landis
    there and you're done.
  • Jacob Landis
    But, in Appalachia, you're just
  • Jacob Landis
    going straight up and straight down, straight up straight down
  • Jacob Landis
    non-stop for the whole day.
  • Jacob Landis
    You're on your smallest gear and
  • Jacob Landis
    then your biggest gear going downhill and uphill for a mile and
  • Jacob Landis
    a half or two miles.
  • Jacob Landis
    I find Appalachia to be so much
  • Jacob Landis
    harder.
  • Jacob Landis
    The challenge is kinda cool but I
  • Jacob Landis
    think it's just really pretty because you have some man-made
  • Jacob Landis
    beauty in Appalachia that you don't really see out West.
  • Jacob Landis
    Out West there's big giant rocks and a lot of houses and
  • Jacob Landis
    architecture, not really pretty architecture.
  • Jacob Landis
    But, out East, in Appalachia you can see three or four
  • Jacob Landis
    [inelligible] of the Appalachian mountains.
  • Jacob Landis
    You can see little church people and brick buildings.
  • Jacob Landis
    This is a little bit more man-made beauty I have to say in
  • Jacob Landis
    Appalachia.
  • Jacob Landis
    It's all good.
  • Jacob Landis
    I can't really think of an area I hate riding in.
  • Jacob Landis
    It's all really cool and it's all part of the experience to get from
  • Jacob Landis
    here to there on a bike.
  • Jacob Landis
    The whole thing is pretty cool.
  • Carol Johnson
    I know that when you did do this ride this kind of started to
  • Carol Johnson
    influence your decision to think about possibly getting a second
  • Carol Johnson
    implant, if that's correct.
  • Carol Johnson
    Could you talk a little bit more
  • Carol Johnson
    about the decision behind getting it?
  • Carol Johnson
    And then your experience once you had it and how satisfied you are
  • Carol Johnson
    with it.
  • Jacob Landis
    Yeah, I had an incorrect
  • Jacob Landis
    assumption prior to going on the bike ride.
  • Jacob Landis
    To me, everything sounds really really natural and normal.
  • Jacob Landis
    Things don't sound metallic or robotic at all.
  • Jacob Landis
    With different peoples voices, everything sounds like it's
  • Jacob Landis
    supposed to sound.
  • Jacob Landis
    I used the same device for a
  • Jacob Landis
    really long time and never got an upgrade.
  • Jacob Landis
    I had the body one processor for a long time.
  • Jacob Landis
    [unintellegible] I'm just gonna keep it the way it is.
  • Jacob Landis
    I really like what I'm getting and I'm not gonna change anything.
  • Jacob Landis
    I had been told for a really long time that my level of
  • Jacob Landis
    comprehension and my ability to do well in school and talk on the
  • Jacob Landis
    phone and stuff was pretty exceptional.
  • Jacob Landis
    Most people don't have the results that you have with the implant.
  • Jacob Landis
    You do so great with it.
  • Jacob Landis
    When I got the implant in 1999,
  • Jacob Landis
    there were so many fewer case studies.
  • Jacob Landis
    The n number was so much smaller.
  • Jacob Landis
    They just didn't have a lot of
  • Jacob Landis
    data to go with.
  • Jacob Landis
    Now if you have anyone with the
  • Jacob Landis
    type of hearing disability that I have, that progressive hearing
  • Jacob Landis
    loss, the fact that I had a hearing aid as a child and the
  • Jacob Landis
    fact that I got the implant without spending, I didn't spend a
  • Jacob Landis
    long time without normal hearing.
  • Jacob Landis
    I had hearing and that was it.
  • Jacob Landis
    I needed a hearing aid.
  • Jacob Landis
    I definitely needed those.
  • Jacob Landis
    [unintelligible] I probably wasn't getting a lot from the hearing
  • Jacob Landis
    aids but I didn't spend a long time like that.
  • Jacob Landis
    My hearing loss was pretty progressive and then it got really
  • Jacob Landis
    backwards.
  • Jacob Landis
    Anyone who had my history would
  • Jacob Landis
    probably do really really well with the implant and it's not
  • Jacob Landis
    unexpected.
  • Jacob Landis
    I went to my wife and I was not
  • Jacob Landis
    keeping up with anything.
  • Jacob Landis
    I was like I'm like a miracle.
  • Jacob Landis
    I really took everything for granted.
  • Jacob Landis
    Because I thought I was already one of the bests, I couldn't make
  • Jacob Landis
    it better.
  • Jacob Landis
    I thought this is already as good
  • Jacob Landis
    as it's gonna be.
  • Jacob Landis
    so I just need to accept that and
  • Jacob Landis
    be happy.
  • Jacob Landis
    When I was riding, that was the
  • Jacob Landis
    first time I met people, it wasn't the first time I met people, but
  • Jacob Landis
    it was the first time I talked to and communicated with a lot of
  • Jacob Landis
    different people that had more experience...
  • Jacob Landis
    10 or 20 years older than me that had been more active in hearing
  • Jacob Landis
    loss for a really long time.
  • Jacob Landis
    They were like activists.
  • Jacob Landis
    They were trying to get their local theater to have a movie
  • Jacob Landis
    night and trying to get a hearing booth installed at their local
  • Jacob Landis
    airport.
  • Jacob Landis
    Things like that.
  • Jacob Landis
    So many of them just kept on saying why don't you get your
  • Jacob Landis
    second implant? I always thought that the reason
  • Jacob Landis
    everything sounded so normal and natural to me was I thought the
  • Jacob Landis
    super small amount of hearing that I had left in my unimplanted ear.
  • Jacob Landis
    I thought my brain was using that super small amount of acoustic
  • Jacob Landis
    hearing to make everything sound natural.
  • Jacob Landis
    I thought It giving shape to what I was hearing and experiencing.
  • Jacob Landis
    I kept on talking to more and more people that were like if you get
  • Jacob Landis
    the implant, you're gonna love It.
  • Jacob Landis
    It's gonna be like night and day.
  • Jacob Landis
    After I got sober, I just kept on thinking about It and I knew the
  • Jacob Landis
    Insurance would cover It.
  • Jacob Landis
    I went to my audiologist and I
  • Jacob Landis
    said hey I think I'm interested in maybe pursuing It.
  • Jacob Landis
    It was kinda like why not? She listened to my concerns.
  • Jacob Landis
    Everything sounds really normal and natural to me now.
  • Jacob Landis
    I think It's because my unimplanted ear.
  • Jacob Landis
    She took me into the hearing booth and we hadn't tested my
  • Jacob Landis
    unimplanted ear because we wanted to reprogram the implant.
  • Jacob Landis
    That's where I get 99.9% of my comprehension anyway.
  • Jacob Landis
    We tested my other ear for the first time in probably 15 years
  • Jacob Landis
    [unintelligible] Even if you lose all your hearing in that ear with
  • Jacob Landis
    the Implant, you're not gonna miss that at all.
  • Jacob Landis
    She was really really clear about that.
  • Jacob Landis
    And I went forward with it.
  • Jacob Landis
    [Interruption in audio] Going back
  • Carol Johnson
    to what you said about the second implant you got, it seems like it
  • Carol Johnson
    was a lot easier with insurance and I know the whole thing is that
  • Carol Johnson
    the insurance costs aren't often covered.
  • Carol Johnson
    Could you talk a little bit more about that and how you're raising
  • Carol Johnson
    money and how much money you try to raise for each surgery?
  • Jacob Landis
    It's actually a pretty complicated answer.
  • Jacob Landis
    It actually is covered by most major insurances.
  • Jacob Landis
    I think there are certain states that actually have a law that
  • Jacob Landis
    insurance companies are not allowed to have an exclusion for
  • Jacob Landis
    implants anymore.
  • Jacob Landis
    In the last two decades, there's
  • Jacob Landis
    just been so many studies and the possibilities and numbers keep on
  • Jacob Landis
    going up.
  • Jacob Landis
    This Is the most successful
  • Jacob Landis
    intervention for hearing loss.
  • Jacob Landis
    Most insurance companies cover it
  • Jacob Landis
    now.
  • Jacob Landis
    As far as our charity is
  • Jacob Landis
    concerned, I'm a proponent of universal healthcare so I would
  • Jacob Landis
    hope charities like ours don't have to exist in the future.
  • Jacob Landis
    I think it's absurd, the fact that my father's still working because
  • Jacob Landis
    of these medical decisions that were made in the 90's.
  • Jacob Landis
    It's painful.
  • Jacob Landis
    He's 66.
  • Jacob Landis
    He should be retired.
  • Jacob Landis
    He only lives two miles from us.
  • Jacob Landis
    He should be able to come over here and spend a lot more time
  • Jacob Landis
    with his granddaughter.
  • Jacob Landis
    He's working full time and my
  • Jacob Landis
    mom's working full time.
  • Jacob Landis
    A lot of that has to do with...
  • Jacob Landis
    because it wasn't covered by insurance.
  • Jacob Landis
    It was so long ago.
  • Jacob Landis
    He passed out of pension.
  • Jacob Landis
    He passed out two 401k's.
  • Jacob Landis
    At one point he had silver.
  • Jacob Landis
    He sold his silver and refinanced the house.
  • Jacob Landis
    The typical surgery, I think, costs between $75,000-$150,00
  • Jacob Landis
    depending on the hospital's negotiation with the insurance
  • Jacob Landis
    company.
  • Jacob Landis
    Just the device itself that goes
  • Jacob Landis
    into the patient's head, just that implanted thing costs $35,000 most
  • Jacob Landis
    of the time.
  • Jacob Landis
    Then you have your surgeon fee,
  • Jacob Landis
    your anesthesiologist fee, you have the external device, you have
  • Jacob Landis
    a whole bunch of audiological tests and exams you take before
  • Jacob Landis
    the implant.
  • Jacob Landis
    Because it's a pretty big
  • Jacob Landis
    investment in resources and time, the hospitals are sometimes a
  • Jacob Landis
    little but reluctant to give implants or have surgeries for
  • Jacob Landis
    people who don't seem willing to commit to like hey after you get
  • Jacob Landis
    the implant you have to come back to the hospital on a very very
  • Jacob Landis
    regular basis to get reprogrammed.
  • Jacob Landis
    A really good clinic that does
  • Jacob Landis
    surgery also has, they call it different things, but basically
  • Jacob Landis
    working with educators and speech and language pathologists that
  • Jacob Landis
    directs each patient.
  • Jacob Landis
    It's one-on-one listening therapy
  • Jacob Landis
    to learn how to use your implant and learn how to hear again
  • Jacob Landis
    basically.
  • Jacob Landis
    When I got my implant, I went back
  • Jacob Landis
    to Johns Hopkins every Wednesday once a week for a whole year to
  • Jacob Landis
    just repeat words and repeat sounds, practicing talking on the
  • Jacob Landis
    phone.
  • Jacob Landis
    It kinda made me uncomfortable
  • Jacob Landis
    because my brain had gotten so good at using visual cues to
  • Jacob Landis
    extract meaning and understand things that are going on around
  • Jacob Landis
    me.
  • Jacob Landis
    If I wasn't forced to, my brain
  • Jacob Landis
    would not use the implant.
  • Jacob Landis
    [unintelligible].
  • Jacob Landis
    All these appointments, I think they cost like $250 out of pocket
  • Jacob Landis
    and multiply that by 52 weeks a year.
  • Jacob Landis
    That's a huge expense.
  • Jacob Landis
    Our charity basically exists to
  • Jacob Landis
    help people who don't have insurance or they're in some sort
  • Jacob Landis
    of situation where their insurance didn't cover it.
  • Jacob Landis
    We had a case a couple years ago where somebody's implant failed.
  • Jacob Landis
    They had used it for 15 years and then it stopped working.
  • Jacob Landis
    It was out of warranty because it had been out of that person's body
  • Jacob Landis
    for so long and they couldn't cover for a replacement.
  • Jacob Landis
    So, they had an implant but the insurance company couldn't cover
  • Jacob Landis
    it.
  • Jacob Landis
    We have an application on our
  • Jacob Landis
    website where people put in all their information and tell us
  • Jacob Landis
    their story and why they need the money and stuff like that.
  • Jacob Landis
    We generally don't have a long wait.
  • Jacob Landis
    We usually have two or three people somewhere along in the
  • Jacob Landis
    long, long process.
  • Jacob Landis
    What we usually do is we help them
  • Jacob Landis
    through the insurance process.
  • Jacob Landis
    Sometimes they end up getting
  • Jacob Landis
    something covered without needing any financial assistance.
  • Jacob Landis
    There's a lot that goes into it.
  • Jacob Landis
    We don't actually pay $75,000 for
  • Jacob Landis
    the surgery.
  • Jacob Landis
    We actually have an agreement with
  • Jacob Landis
    a couple other charities where we get devices from the manufacturer.
  • Jacob Landis
    There's three manufacturers.
  • Jacob Landis
    There's Advanced Bionic, there's
  • Jacob Landis
    Cochlear Corporations, and there's MED-EL.
  • Jacob Landis
    Those are the ones that make the internal devices.
  • Jacob Landis
    They provide the software and audiological assistance.
  • Jacob Landis
    The devices just go into the person's head.
  • Jacob Landis
    Those things cost $35,000.
  • Jacob Landis
    We basically, through working with
  • Jacob Landis
    a couple other charities, had acccess to a certain number of
  • Jacob Landis
    free implantable devices a year.
  • Jacob Landis
    What we basically do is wer use
  • Jacob Landis
    that free device.
  • Jacob Landis
    The surgeries, the insurance
  • Jacob Landis
    companies usually cover it.
  • Jacob Landis
    But hospitals usually lose money
  • Jacob Landis
    on the surgery most of the time, just the way that the negotiations
  • Jacob Landis
    usually shake out.
  • Jacob Landis
    We basically have a free device in
  • Jacob Landis
    one hand that the hospital usually has to pay cash for.
  • Jacob Landis
    They have to order it seven days before the surgery and get it into
  • Jacob Landis
    the hospital.
  • Jacob Landis
    They have to write a $35,000 check
  • Jacob Landis
    to get those devices in the hospital.
  • Jacob Landis
    There's not a hospital in the country that has an inventory of
  • Jacob Landis
    these devices waiting to be implanted.
  • Jacob Landis
    It's a really sophisticated and expensive piece of equipment.
  • Jacob Landis
    We have one of these devices in one hand and we have a
  • Jacob Landis
    $5,000-$10,000 donation that we will make to the hospital in the
  • Jacob Landis
    other hand.
  • Jacob Landis
    We get in between the patient and
  • Jacob Landis
    the hospital and start negotiating.
  • Jacob Landis
    It's challenging.
  • Jacob Landis
    The hardest thing is just to find
  • Jacob Landis
    the right person to talk to in the hospital because if you talk to
  • Jacob Landis
    the Chief Financial Officer they'll just be like oh, wait,
  • Jacob Landis
    we're not gonna accept a $10,000 donation to do a $100,000 surgery
  • Jacob Landis
    for free.
  • Jacob Landis
    If you talk to the right person
  • Jacob Landis
    who understands the total financial ramifications of the
  • Jacob Landis
    surgery, then it becomes a lot easier.
  • Jacob Landis
    The hardest part for us is just to find the right person to talk to
  • Jacob Landis
    to understand what we're trying to do.
  • Jacob Landis
    A lot of times, the surgeon drastically reduces his surgeon
  • Jacob Landis
    fee and the anesthesiologist often does as well.
  • Jacob Landis
    It's a complicated complicated process.
  • Jacob Landis
    It can take up to six months sometimes for that to happen.
  • Jacob Landis
    That's in comparison to me.
  • Jacob Landis
    I knew that I got the implant and
  • Jacob Landis
    I was like I have insurance, I'm gonna be able to get the implant.
  • Jacob Landis
    I'm gonna get the surgery scheduled and done in only four
  • Jacob Landis
    months.
  • Jacob Landis
    In our situation it usually takes
  • Jacob Landis
    six months of going through the application, negotiating with the
  • Jacob Landis
    hospital, securing the device that we're gonna get into the person's
  • Jacob Landis
    ear, and often writing multiple checks to different organizations
  • Jacob Landis
    and people.
  • Jacob Landis
    Some hospitals have a complicated
  • Jacob Landis
    paperwork requirement.
  • Jacob Landis
    We've had to request invoices for
  • Jacob Landis
    $1 before because they have to have an invoice, just weird
  • Jacob Landis
    complicated things.
  • Jacob Landis
    It's easier when we're working
  • Jacob Landis
    with a hospital we've worked with before.
  • Jacob Landis
    We've done 19 surgeries so far.
  • Jacob Landis
    Number 20 should be scheduled to
  • Jacob Landis
    happen February.
  • Jacob Landis
    Every single one is different.
  • Jacob Landis
    Thankyfully, there's a need for it for sure, but it's not a crazy
  • Jacob Landis
    need.
  • Jacob Landis
    We usually don't have a waiting
  • Jacob Landis
    line for applicants.
  • Jacob Landis
    We usually have like two or three
  • Jacob Landis
    people in the works like I said.
  • Jacob Landis
    Most of the requests that we get,
  • Jacob Landis
    we have to deny because we get a lot of requests for people out of
  • Jacob Landis
    the country where they just don't have the medical infrastructure to
  • Jacob Landis
    do the surgery and they're trying to figure out how to get a flight
  • Jacob Landis
    to America to get the surgery and then go back home.
  • Jacob Landis
    In the bylaws of our organizations, we had to focus
  • Jacob Landis
    what we do and try to have...
  • Jacob Landis
    we're pretty much just two or
  • Jacob Landis
    three people.
  • Jacob Landis
    We don't get [unintelligible] from
  • Jacob Landis
    the organization.
  • Jacob Landis
    It's just all volunteers doing it.
  • Jacob Landis
    In our bylaws, we say we can only do American citizens because if we
  • Jacob Landis
    were gonna accept applicants from all over the world, we don't have
  • Jacob Landis
    the scope.
  • Jacob Landis
    We don't have the knowledge to be
  • Jacob Landis
    able to handle those types of requests.
  • Jacob Landis
    It's a thing that gets covered now a days.
  • Jacob Landis
    Some people just need help with the deductible.
  • Jacob Landis
    Our organization is just kinda there for those cases where people
  • Jacob Landis
    don't have insurance.
  • Carol Johnson
    That's great.
  • Carol Johnson
    I did not realize it was such a complicated process from start to
  • Carol Johnson
    finish.
  • Carol Johnson
    Shifting the focus a little bit to
  • Carol Johnson
    hearing loss during covid because obviously, so many things happened
  • Carol Johnson
    around covid that affected people's hearing.
  • Carol Johnson
    Did you notice, at all, any differences or any particular
  • Carol Johnson
    issues when it first started in terms of masks or partitions being
  • Carol Johnson
    up everywhere? Did that make it significantly
  • Carol Johnson
    harder for you to hear anything? Masks definitely made I harder to
  • Jacob Landis
    hear.
  • Jacob Landis
    Not just the lack of lip reading
  • Jacob Landis
    [unintelligible].
  • Jacob Landis
    I lip read so well that glass
  • Jacob Landis
    partitions or plastic partitions don't bother me.
  • Jacob Landis
    I can read somebody's lips and not have a hard time understanding
  • Jacob Landis
    them.
  • Jacob Landis
    It was definitely hard at first.
  • Jacob Landis
    I'm really lucky because I do so well with the implant.
  • Jacob Landis
    I'm trying to think what my experience has been.
  • Jacob Landis
    Right at the beginning of the pandemic, in the last 18 months.
  • Jacob Landis
    I work in a grocery store which is already kind of a challenging
  • Jacob Landis
    environment because it's pretty loud place.
  • Jacob Landis
    It's kinda like a warehouse in the back.
  • Jacob Landis
    It's just a busy store so it's already a hard place.
  • Jacob Landis
    It's definitely challenging.
  • Carol Johnson
    Now that things are starting to
  • Carol Johnson
    open back up and people are starting to go out into crowded
  • Carol Johnson
    spaces more, is there any particular issue you have with
  • Carol Johnson
    hearing and crowded spaces or trying to hear someone when
  • Carol Johnson
    there's a noisy environment? Yeah.
  • Jacob Landis
    It's always harder to hear in a noisier crowded environment.
  • Jacob Landis
    A lot of people, what happens when they're in a more challenging
  • Jacob Landis
    situation is they start leaning on other visual cues.
  • Jacob Landis
    Like, they can't hear as well so they start lip reading
  • Jacob Landis
    subconsciously.
  • Jacob Landis
    Usually people with perfectly
  • Jacob Landis
    normal hearing can lip read a little bit to some degree.
  • Jacob Landis
    Even a perfectly hearing person, if you put something in front of a
  • Jacob Landis
    mouth, they're gonna understand it a little bit less.
  • Jacob Landis
    Or they'll get 100% of the words right but their brain is gonna be
  • Jacob Landis
    working a little bit harder than normal.
  • Jacob Landis
    They're just not gonna be aware of that.
  • Jacob Landis
    For someone with hearing loss, they really aren't aware of it
  • Jacob Landis
    because they're already at a disadvantage.
  • Jacob Landis
    I definitely notice, I keep up with a lot of the medical
  • Jacob Landis
    journals.
  • Jacob Landis
    People with hearing loss, even
  • Jacob Landis
    moderate hearing loss, they need more sleep than hearing people do
  • Jacob Landis
    because their brains are just working so much harder to
  • Jacob Landis
    understand what's going on around them.
  • Jacob Landis
    I definitely notice fatigue at times, like in the early days of
  • Jacob Landis
    the pandemic and I was just getting used to masks.
  • Jacob Landis
    Even today, we're still wearing masks at work.
  • Jacob Landis
    I really only took a huge step back In my hours at work.
  • Jacob Landis
    I'm not really working full time anymore so I can spend more time
  • Jacob Landis
    at home to take care of the baby and supporting my partner.
  • Jacob Landis
    I was so surprised because when I stopped setting my alarm at 4 in
  • Jacob Landis
    the morning, and I just let myself get as much sleep as I need, I
  • Jacob Landis
    find that even with the implant, I need sometimes nine and a half
  • Jacob Landis
    hours of sleep.
  • Jacob Landis
    There's a lot of medical journals
  • Jacob Landis
    that have suggested that's because our brains are working harder.
  • Jacob Landis
    I think that for a lot of people, there's some really interesting
  • Jacob Landis
    stuff coming out of Hopkins in the last 5-10 years that I think
  • Jacob Landis
    really applies to COVID because in America there's still a little big
  • Jacob Landis
    of a stigma with hearing loss where people put off getting their
  • Jacob Landis
    first pair of hearing aids for like seven years.
  • Jacob Landis
    From when they should probably get hearing aids to when they do get
  • Jacob Landis
    hearing aids, there's a seven year gap on average.
  • Jacob Landis
    So, some people are waiting way too long to get hearing aids.
  • Jacob Landis
    What's happening is their brains are working harder to get
  • Jacob Landis
    information that they need.
  • Jacob Landis
    But, more importantly, just
  • Jacob Landis
    slowly, they start declining certain social activities.
  • Jacob Landis
    Like the amount of phone calls they answer per week goes down
  • Jacob Landis
    just a little bit, not something you'd notice, but on average and
  • Jacob Landis
    over a few years you notice they aren't talking on the phone as
  • Jacob Landis
    much as they used to.
  • Jacob Landis
    It's probably because of the
  • Jacob Landis
    hearing loss.
  • Jacob Landis
    It's a little bit more challenging
  • Jacob Landis
    and a little bit more frustrating talking on the phone.
  • Jacob Landis
    They might do one less social activity per week because maybe
  • Jacob Landis
    they have one friend that really loves this one restaurant where
  • Jacob Landis
    the music is always just a little bit too loud.
  • Jacob Landis
    They do one less social activity a week because they say no to this
  • Jacob Landis
    guy because they don't like going to that one restaurant.
  • Jacob Landis
    Instead of focusing on new skills or rich conversation, the brain is
  • Jacob Landis
    focusing on just understanding the next word or trying to get some
  • Jacob Landis
    context into that person's facial expression to just give them a
  • Jacob Landis
    little bit more information to follow the conversation along.
  • Jacob Landis
    There's been a lot of studies out of Hopkins that linked it to early
  • Jacob Landis
    onset Alzheimer's and Dementia.
  • Jacob Landis
    If people got hearing aids
  • Jacob Landis
    earlier, it could have put off the Dementia about three years.
  • Jacob Landis
    That's the hard thing with hearing loss.
  • Jacob Landis
    Hellen Keller has that quote where she says "my blindness separated
  • Jacob Landis
    me from the world, but my hearing loss is what separated me from
  • Jacob Landis
    people." Basic communication is hard with
  • Jacob Landis
    hearing people.
  • Jacob Landis
    I see people at work all the time.
  • Jacob Landis
    Two people that hear completely normally, young adults, they're
  • Jacob Landis
    trying to talk with masks and they can't understand each other.
  • Jacob Landis
    So, one of them pulls down their mask and they're not lip readers
  • Jacob Landis
    but they know that will help them understand each other.
  • Jacob Landis
    The thing about all people with hearing loss is, I think it's been
  • Jacob Landis
    a hidden casualty from COVID.
  • Jacob Landis
    The problem is that it's so
  • Jacob Landis
    invisible.
  • Jacob Landis
    People with hearing loss that I
  • Jacob Landis
    got to know from bike rides with them, all the people I know that
  • Jacob Landis
    attended the ball games they already know how to self advocate.
  • Jacob Landis
    They're already doing everything they can for the hearing loss.
  • Jacob Landis
    They're already using assisted listening devices.
  • Jacob Landis
    They already know what to do to get people to repeat themselves.
  • Jacob Landis
    But, I think about when COVID happened, to me, before I went on
  • Jacob Landis
    the bike rides, before I learned, before I benefitted from the
  • Jacob Landis
    hearing loss community, I think I'd be a lot more frustrated and a
  • Jacob Landis
    lot more withdrawn.
  • Jacob Landis
    It's hard because I don't know
  • Jacob Landis
    anybody with hearing loss.
  • Jacob Landis
    The people with hearing loss that
  • Jacob Landis
    are suffering in silence, that's the problem is they're suffering
  • Jacob Landis
    in silence.
  • Jacob Landis
    All the people I know with hearing
  • Jacob Landis
    loss that are strong advocates for themselves [unintelligible].
  • Jacob Landis
    The people with hearing loss that I know have said their hearing,
  • Jacob Landis
    because of the pandemic and stuff, is definitely screwed because the
  • Jacob Landis
    people who aren't advocating for themselves they're not the people
  • Jacob Landis
    who went to the ball games in 2013.
  • Jacob Landis
    They're not people I've kept up with over the years.
  • Jacob Landis
    [unintelligible] Yeah, that makes a lot of sense.
  • Carol Johnson
    Thank you.
  • Carol Johnson
    As we're wrapping up, I don't want
  • Carol Johnson
    to keep you for too long, is there any last thoughts you have or
  • Carol Johnson
    anything I should have asked you that you want to bring attention
  • Carol Johnson
    to? I think we covered a lot.
  • Jacob Landis
    I just have a lot of respect for the professionals in the field and
  • Jacob Landis
    speech and language pathologists and deaf educators.
  • Jacob Landis
    And the fact that we can have this conversation on the phone and your
  • Jacob Landis
    voice is being beamed into my brain.
  • Jacob Landis
    That this technology existed in 1999 when I needed it.
  • Jacob Landis
    This isn't some miracle of the 21st century.
  • Jacob Landis
    This is 20th century technology.
  • Jacob Landis
    I think it's just having faith in
  • Jacob Landis
    the human brain.
  • Jacob Landis
    What the brain can do if I gets
  • Jacob Landis
    information it needs, that's what it's all about.
  • Jacob Landis
    I think the movie The Sound of Metal, did you see that movie?
  • Carol Johnson
    I didn't No? It has a really negative portrayal
  • Jacob Landis
    of cochlear implants.
  • Jacob Landis
    I kinda enjoyed parts of the movie
  • Jacob Landis
    because the movie I think was a lot about acceptance.
  • Jacob Landis
    I think acceptance it's super important, not just with hearing
  • Jacob Landis
    loss, but accepting things as they are.
  • Jacob Landis
    The movie I think has a really good theme on that.
  • Jacob Landis
    What was disappointing is implants don't get a lot of coverage.
  • Jacob Landis
    There's not a lot of representation.
  • Jacob Landis
    Me and my partner flew to London right before the pandemic because
  • Jacob Landis
    I have a sibling in law that lives in Scotland.
  • Jacob Landis
    We were watching the [unintelligible] video it'll show
  • Jacob Landis
    how to survive a plane crash and one of the cartoon characters that
  • Jacob Landis
    was in a life vest had an implant on.
  • Jacob Landis
    I was like woah, that was the first time I saw representation
  • Jacob Landis
    with an implant.
  • Jacob Landis
    This is super cool.
  • Jacob Landis
    The Sound of Metal is critically acclaimed.
  • Jacob Landis
    I think the Amazon studies pays money because every time I see an
  • Jacob Landis
    Amazon studies movie that is highly regarded, I'm always kinda
  • Jacob Landis
    disappointed in it because I think they're paying people off or
  • Jacob Landis
    something.
  • Jacob Landis
    They had some good points.
  • Jacob Landis
    It was a movie also about addiction and they had a lot of
  • Jacob Landis
    drug stuff in there too and it was cool.
  • Jacob Landis
    They could have done the same thing without the medically
  • Jacob Landis
    inaccurate or factually inaccurate things in the movie.
  • Jacob Landis
    Like, they quoted the surgery being $40,000 and they said that
  • Jacob Landis
    insurance doesn't cover it.
  • Jacob Landis
    Those two things have been untrue
  • Jacob Landis
    for a very long time.
  • Jacob Landis
    The surgery has always been more
  • Jacob Landis
    expensive than that and insurance has covered it pretty much for
  • Jacob Landis
    15-20 years pretty much across the board.
  • Jacob Landis
    They use these prosthetic devices in the movie that were super
  • Jacob Landis
    inaccurate.
  • Jacob Landis
    There's just so much bigger and
  • Jacob Landis
    bulkier.
  • Jacob Landis
    The surgery scar they put on his
  • Jacob Landis
    head, kinda like the old school surgery they did in the 90's where
  • Jacob Landis
    they had this huge skin flap on the side of the head.
  • Jacob Landis
    But the new surgeries now, it's a super small incision under the ear
  • Jacob Landis
    and they just slide the implant along the skull.
  • Jacob Landis
    There's no visible scar basically.
  • Jacob Landis
    The fact that he got the implants
  • Jacob Landis
    and he had the bad experience.
  • Jacob Landis
    Like, everything sounded robotic
  • Jacob Landis
    and metallic.
  • Jacob Landis
    The doctor said yeah this is just
  • Jacob Landis
    how it is.
  • Jacob Landis
    It's gonna get better.
  • Jacob Landis
    But then there's no follow up and it's just so different than how it
  • Jacob Landis
    would actually be.
  • Jacob Landis
    A hospital that does implants,
  • Jacob Landis
    it's gonna manage your expectations a bit.
  • Jacob Landis
    The audiologist, I feel like they're always saying hey it's not
  • Jacob Landis
    gonna sound great on the first day but you come back the very next
  • Jacob Landis
    day for a follow up appointment and the next week and then you go
  • Jacob Landis
    two weeks later.
  • Jacob Landis
    It's just all about encouragement
  • Jacob Landis
    and just if you continue to wear it.
  • Jacob Landis
    In the movie, the guy with hearing loss was a normal middle-aged
  • Jacob Landis
    adult and he had pretty rapid onset hearing loss.
  • Jacob Landis
    His brain already knew what to do with that information.
  • Jacob Landis
    He probably might never enjoy everything the way that he used
  • Jacob Landis
    to.
  • Jacob Landis
    But given the amount of time, and
  • Jacob Landis
    probably not even that much time, he would do really really well
  • Jacob Landis
    with an implant.
  • Jacob Landis
    His speech comprehension would
  • Jacob Landis
    probably be above 95%.
  • Jacob Landis
    He would probably enjoy music
  • Jacob Landis
    again.
  • Jacob Landis
    It wouldn't be the same,
  • Jacob Landis
    especially not right away.
  • Jacob Landis
    All the science, all the studies
  • Jacob Landis
    say this person with one of the best outcomes you could ever
  • Jacob Landis
    expect.
  • Jacob Landis
    And then he just gives up in a
  • Jacob Landis
    week and he turns down the implants.
  • Jacob Landis
    He just enjoys the silence and that's the metaphor for acceptance
  • Jacob Landis
    I think they're going for.
  • Jacob Landis
    I feel like they could have made
  • Jacob Landis
    the same point but without the hugely inaccurate other stuff
  • Jacob Landis
    going on in that movie.
  • Jacob Landis
    I just wanted to kinda go off on
  • Jacob Landis
    that a little bit.
  • Carol Johnson
    I think it's definitely
  • Carol Johnson
    interesting how its portrayed in films and movies.
  • Carol Johnson
    Is there any other TV shows or maybe popular culture ways you've
  • Carol Johnson
    seen this brought up at all? I haven't.
  • Jacob Landis
    I think that representation is probably pretty low for implants.
  • Jacob Landis
    I don't keep up with a lot of popular culture stuff.
  • Jacob Landis
    I'm sure there is but none that I'm aware of.
  • Jacob Landis
    I have a daughter and I'm probably gonna start watching kid's shows
  • Jacob Landis
    at some point.
  • Jacob Landis
    When I saw that implant safety
  • Jacob Landis
    video, I was shocked.
  • Jacob Landis
    I almost smacked my wife.
  • Jacob Landis
    I was like dude, she has an implant.
  • Jacob Landis
    I think representation is pretty uncommon.
  • Jacob Landis
    That's why when I do see it, it's so rare.
  • Jacob Landis
    That's why I was so disappointed with the Sound of Metal.
  • Jacob Landis
    In the 70's it was just like hey I got the implant.
  • Jacob Landis
    Look at me.
  • Jacob Landis
    It just really bothered me that
  • Jacob Landis
    there was a lot of factually inaccurate stuff.
  • Jacob Landis
    That's what really bothered me.
  • Jacob Landis
    The whole deaf and sign language
  • Jacob Landis
    community there's a whole bunch of stuff from 2000 to 2010,
  • Jacob Landis
    documentaries just talk about the conflict that the deaf community
  • Jacob Landis
    has, the implant.
  • Jacob Landis
    That's definitely gotten some
  • Jacob Landis
    media coverage over the years.
  • Jacob Landis
    I think the issue's really
  • Jacob Landis
    overblown.
  • Jacob Landis
    So much hearing loss is genetic.
  • Jacob Landis
    You have so many people with hearing loss that use multiple
  • Jacob Landis
    strategies in order to hear and understand.
  • Jacob Landis
    I don't use sign language at all to communicate.
  • Jacob Landis
    There's a point where my whole family was taking sign language
  • Jacob Landis
    classes because we didn't know that the implant was a
  • Jacob Landis
    possibility.
  • Jacob Landis
    We thought that's what the future
  • Jacob Landis
    is gonna be so we were all starting to learn it.
  • Jacob Landis
    I got the implant and we were like hey speech and language, we're
  • Jacob Landis
    gonna commit to this.
  • Jacob Landis
    I stayed in the public school and
  • Jacob Landis
    so I never had to learn it so I didn't.
  • Jacob Landis
    There's an organization called the Hearing Loss Association of
  • Jacob Landis
    America.
  • Jacob Landis
    Their headquarters is in Bethesda.
  • Jacob Landis
    They're the leading advocacy and lobbying group for hearing loss
  • Jacob Landis
    issues in the country.
  • Jacob Landis
    They had a convention that I went
  • Jacob Landis
    to in 2015.
  • Jacob Landis
    It definitely skews older.
  • Jacob Landis
    There's a lot of older retired people there that want to start
  • Jacob Landis
    advocating for getting closed captioning on TV and things like
  • Jacob Landis
    that.
  • Jacob Landis
    And just basic accessibility and
  • Jacob Landis
    using the Americans with Disabilities Act to expand
  • Jacob Landis
    accessibility to people with hearing loss.
  • Jacob Landis
    That's what they still do.
  • Jacob Landis
    There's definitely not a lot of
  • Jacob Landis
    young adults that go to this convention because we don't have
  • Jacob Landis
    as much money to travel and stuff like that.
  • Jacob Landis
    There's usually a couple pockets of young adults and people in
  • Jacob Landis
    their younger 30's with hearing loss.
  • Jacob Landis
    We get together with everyone else in the city.
  • Jacob Landis
    I kinda regret not knowing as much sign language because we'll go out
  • Jacob Landis
    to a bar or a noisy environment.
  • Jacob Landis
    This is the first group, we all
  • Jacob Landis
    have hearing loss to some degree or another.
  • Jacob Landis
    Some people had implants, some people had hearing aids, some
  • Jacob Landis
    people have an implant that frankly doesn't work very well for
  • Jacob Landis
    them.
  • Jacob Landis
    Some people are really really good
  • Jacob Landis
    at lip reading and some people aren't.
  • Jacob Landis
    We're all probably pretty good at lip reading.
  • Jacob Landis
    But we'll be at the bar and I would be talking and sometimes
  • Jacob Landis
    getting a little bit of extra information is helpful.
  • Jacob Landis
    What all these other young adults are doing that I wasn't doing is
  • Jacob Landis
    signing maybe like two words and a sentence.
  • Jacob Landis
    They're speaking but they're signing maybe the verb or the noun
  • Jacob Landis
    or the accent in the sentence.
  • Jacob Landis
    That was just a little extra
  • Jacob Landis
    information.
  • Jacob Landis
    It was primarily oral and speech
  • Jacob Landis
    and language.
  • Jacob Landis
    But it was just so interesting to
  • Jacob Landis
    see sign language and spoken language used.
  • Jacob Landis
    Everything's just another toolbox.
  • Jacob Landis
    It was just cool to have that to
  • Jacob Landis
    use.
  • Carol Johnson
    That's definitely something that's
  • Carol Johnson
    super interesting to hear about.
  • Carol Johnson
    That was part of the reason that I
  • Carol Johnson
    decided to pick this for my project, actually.
  • Carol Johnson
    Because I don't think that gets talked about that much.
  • Carol Johnson
    So I'm really glad that you were able to share and help contribute
  • Carol Johnson
    to this.
  • Carol Johnson
    Thank you so much for sharing your
  • Carol Johnson
    story with me.
  • Carol Johnson
    I'm going to go ahead and stop the
  • Carol Johnson
    recording.
Description: Jacob Landis shares his story about living with profound hearing loss. He received one cochlear implant as a child and his second one as an adult. He discusses the every day difficulties of hearing loss that are not immediately obvious to a fully hearing individual. He also talks about his charity, Jacob’s Ride, that he started. The charity aims to assist people in the some of the financial and administrative processes required to get a cochlear implant. Interview conducted for American University's Fall 2021 Oral History course by Carol Johnson.
Details
Title
Interview with Jacob Landis, October 30, 2021
Creator(s)
Jacob Landis ; Carol Johnson
Interviewee
Jacob Landis
Interviewer
Carol Johnson
Created
October 30, 2021
Topical Subject(s)
cochlear implant ; hearing loss ; American University ; deaf culture ; JacobsRide
Continent
North and Central America
Country
United States
First Order Political Division
MD
City
Baltimore
Rights Statement
American University may copy, use, and distribute to the public the Collection including but not limited to this interview (and other items above) for educational purposes, including, but not limited to, formats such as audio and/or video documentaries, pamphlets, print publications, public programming and/or performances, exhibits, online archives and/or publications, mobile platforms, and other new media resources. I also understand the Humanities Truck and American University may use the Collection for promotional purposes. Both the Interviewee and Interviewer will retain licenses to use these materials for any future purpose.
URI / Handle
http://hdl.handle.net/1961/humanitiestruck:3470

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