April 1, 2025 • 38 mins
What if your entire life changed at the age of 19? Matt Hay shares his incredible journey of sudden hearing loss due to neurofibromatosis type 2 (NF2) and the pivotal moment an audiologist recognized the need for further medical evaluation, leading to his diagnosis. This episode underscores the critical importance of comprehensive audiology practices and the life-altering impact of an accurate diagnosis.
Join us as we explore the pioneering world of auditory brainstem implants (ABI). From the early challenges at the House Ear Institute to the remarkable personal account of a patient who underwent the ABI procedure, we cover it all. Listen to how this groundbreaking technology transformed everyday sounds and interactions, reshaping lives, including Matt's, and even influencing his wife’s career path as they embarked on starting a family.
In a deeply touching segment, Matt opens up about the emotional and psychological toll of facial paralysis. He shares his experiences with visible and invisible disabilities and his profound gratitude for advancements in ABI technology. We also spotlight Blaise Delfino's inspiring contributions to hearing care advocacy and celebrate Matt’s heartfelt book, which has resonated deeply with our audience.
Connect with the Hearing Matters Podcast Team
Email: hearingmatterspodcast@gmail.com
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Twitter: @hearing_mattas
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Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Blaise M. Delfino, M.S. - (00:36):
Thank you, welcome back to another
episode of the Hearing Matterspodcast.
Of the Hearing Matters podcast,I'm your founder and host,
blaise Delfino, and, as afriendly reminder this podcast
is separate from my work atStarkey.
Dr. Douglas L. Beck (00:55):
Hi, my name is Dr Douglas Beck, I'm an
audiologist and you're listeningto the Hearing Matters podcast.
What we're doing today is we'reinterviewing my friend, matt
Hay, and some of you have hadthe pleasure of reading his book
already, but we're going to getinto that in a little bit.
Matt, first of all, I want tothank you for being here.
Matt Hay (01:10):
It's great to see you.
Good to see you too, doug.
I know we've, over the years,traded texts and emails, but
you're a busy guy, so this isactually just a chance for us to
catch up.
Dr. Douglas L. Beck (01:18):
This is a good time to catch up.
I've been seeing online so muchpraise for the book and for
your attitude, your competence,your stick with it-ness.
You know, your ability to.
You know keep getting back upbecause you've been, you know
you've been punched down in thenose a couple of times here and
you can just keep getting up andlife just keeps getting better
and I'm so proud of you.
I want to start by talkingabout your hearing loss.
(01:39):
How old were you when you firstnoticed that you had hearing
loss?
Matt Hay (01:45):
So thanks for that.
I appreciate the kind words,doug, and I do.
I mean, technically I'm deaf.
I'm deaf because, my well, myears are pretty great.
I mean, everything about myears really works fine.
They just aren't connected tomy brain Right, and that is
because the nerve that connectsthe hearing process to the brain
was damaged from benign tumors.
(02:06):
So I have a rare disease calledneurofibromatosis type 2 or NF2
.
And it results in I lack atumor suppressor gene that
you're lucky enough to have thatand as a result, benign tumors
can grow on the nerve sheathanywhere in my body and they
just happen to really likehearing nerves.
Dr. Douglas L. Beck (02:26):
And you know this is not an unusual
situation for people with NF2.
I can recall when I was athouse 35, 40 years ago, we would
frequently see patients who hadneurofibromatosis type 2, and
it would cause acoustic neuromasto grow along the hearing nerve
, which is much.
You know the situation you'redescribing and these are, as you
(02:48):
said, benign tumors.
But even though they're benign,they can compress the brainstem
as they grow.
And so you know, if the tumoris growing and diagnosed, it
makes good sense to have themremoved, and the problem with
that, of course, is the numberone way to get at them is
through a trans-labyrinthinecraniotomy, which pretty much
(03:08):
drills through the inner ear toget access to those tumors.
So that's the situation thatyou found yourself in.
Matt Hay (03:15):
Yeah, and you mentioned it is an acoustic
neuroma, which is not toouncommon.
There are a lot of people outthere that lose hearing in one
side because of an acousticneuroma.
But you're right, the wordbenign is actually a poor
description, because having twoyou know, two or three
centimeter tumors compressingyour brain stem is anything but
benign.
(03:36):
Exactly, and what is uniqueabout nf2 is it's a bilateral
acoustic neuroma.
So my I was 19 to answer yourinitial question, was 19 in
college and over the course of asemester, lost the ability to
hear on a phone just in a matterof months, and so I didn't
realize it at the time.
(03:56):
But this is also one of thereasons I'm so proud to be here.
I'm proud to know you guys andthe work that you and your
colleagues do is.
I went to an audiologist and Icould have very easily been sit
with a hearing aid and sent onmy way.
I didn't recognize the benefitand privilege and opportunity.
I had to go to an audiologistthis is in Evansville, indiana,
(04:19):
in 2004 and have an audiologistthat said your tests are not
coming back.
The way I have been trained toread tests in Indian University
and my AudD program, I reallythink that you need to see an
ENT and have an MRI.
I assumed that meant thisaudiologist did not know enough
about what they were doing.
(04:40):
I realized in hindsight howfortunate I was, because you
mentioned best practices in thisin the introduction.
That was a best practice.
Dr. Douglas L. Beck (04:48):
It certainly was, and it's so
important that I want to makethis distinction here, because
good practices are fine and alot of people will do, you know,
traditional audiometry in theiroffice.
The problem with traditionalaudiometry and the problem with
screenings hearing screenings isyou could have a situation much
(05:09):
like you had, matt, and itwould be invisible to the
clinician quite often, and sothey might say, well, gee,
you've passed a screening, orgee, your hearing appears to be
within normal limits, but thatdoesn't necessarily explain the
distortion that you'reperceiving.
(05:31):
And you know, when we do bestpractices and best practices are
not not necessarily, you know,a local choice these are
practices that have been writtenby subject matter experts who
have been in their professionfor a very long period of time,
and they are written by theAmerican Academy of Audiology,
the International HearingSociety, the American Speech
Language Hearing Association,those national groups.
They write best practices, allof which include basic
(05:52):
diagnostics, but then they alsosay listening and communication
assessments and speech and noisetests and acoustic reflexes and
other sophisticated tests thatare designed to help us see the
forest for the trees.
If we're just doing screeningsand basic audiometry tests, we
don't have the ability to gatherall the information we need to
(06:14):
make the very best referral.
In your case, clearly that madea huge difference.
Matt Hay (06:19):
And I think it's accurate to say I took that for
granted because, I mean, I'mjust a 19-year-old kid at the
time who wants to be able towatch SportsCenter without
having the volume up to 99 onthe TV at a fraternity house.
So my concern was veryshort-sighted.
But I look back now and realizewhat an opportunity that was
(06:40):
and that was really the firststep that put me on a path
toward patient advocacy and bestpractices, of recognizing how
much my life I mean it reallychanged that day because four
days later I was had an accuratediagnosis for a disease that
impacts one in 40,000 people.
I know now that rare diseasediagnosis can take four years.
(07:04):
Absolutely I know now that raredisease diagnosis can take four
years.
It took me four days and ithappened because of a hearing
care professional who was ableto put their maybe ego or aside
and say I don't, my tests arenot telling me what I think
they're supposed to tell me.
I think we need more help.
Um and I I get goosebumpssaying that now because how
(07:26):
fortunate am I to have had thatlevel of care that early on in
my hearing loss experience.
Dr. Douglas L. Beck (07:32):
And what year was that, Matt, when you
got diagnosed?
Matt Hay (07:35):
It would have been about 2000.
Well, that first diagnosiswould have been 1997.
So I was a student at IU andliving in Evansville.
Dr. Douglas L. Beck (07:43):
And in 1997 , you know, mris were still
pretty new.
I mean, you know, this is anamazing thing.
We think of these things nowand say, oh yeah, just go get
that done.
But in 1997, it was a veryexpensive test and people didn't
want to do it unless they had adarn good reason to order it,
because somebody's going to haveto pay for it.
And now the MRIs, of course,are even much more specific,
(08:04):
much more accurate, smallerslices, and we can see more
detail.
But so in 97, you got yourdiagnosis and then did you try
hearing aids along the way, ordid you just not do that?
Matt Hay (08:17):
So I was very fortunate in being at Indian
University and the speech andhearing program that they had
there, of being at IndianaUniversity and the speech and
hearing program that they hadthere Again, of just sort of
falling into the right place atthe right time.
Someone I worked with at Indianahappened to be the son-in-law
of Dr Hipskin, who ran thespeech and hearing program at
(08:38):
Indiana and has been a friendnow for 30 years, and I get into
this a little bit in the bookbecause there's some funny
anecdotes that happen whenyou're a cocky 19-year-old
trying to get fitted for hearingaids.
But I was able to meet somebodythat said, hey, I think there's
an opportunity here for us tohelp you and for you to help my
(08:59):
speech and hearing program.
And so I was fitted and Iremember at the time so this
would have been 97.
He was very excited because Iwas the first patient at Indiana
university to get fitted with adigital aid and I remember how
excited they were about adigital aid and I thought I
could not care less, like I justwant to hear better.
Well, I don't care about thetechnology and I remember him
(09:21):
explaining the way that thiswould be programmed and his
students, you know, had theopportunity to to program a
digital hearing aid for thefirst time and I thought I just
want to hear SportsCenter.
Dr. Douglas L. Beck (09:32):
I know, I know Well, it's a great story
and you do detail it in the book.
But you know, shout out toIndiana University.
I mean, it's a brilliantmedical school.
To the best of my recollection,I think at that period in time,
dr Richard Miyamoto was thechair at Indiana and I met Rich
through multiple meetings at theHousehear Institute 20 years
(09:53):
before that, and you know he wasan incredibly talented surgeon
and a wonderful guy.
And even the audiology programthere was brilliant.
Everything about IndianaUniversity, the medical school,
communication disorders,audiology, all aces it was
fantastic.
So you were at Indiana as anundergraduate and you had your
(10:15):
audio done and then did you getto meet any of those surgeons or
physicians from IndianaUniversity Medical School
Indiana?
Matt Hay (10:21):
University Medical School.
So I did and you're right,although he's not rich, to me
he's Dr Miyamoto After beingdiagnosed while a student at IU
in Indiana is where I had my MRIand then they referred me to
the speech and hearing programthere.
And so just another matter ofof good timing and luck and
(10:41):
maybe some privilege of havinginsurance that would cover that
luck and maybe some privilege ofhaving insurance that would
cover that the physician thatwas attending was Dr Miyamoto.
So here I am, using my hearingbecause of an acoustic neuroma
or bilateral acoustic neuromas,and I'm being seen by at the
time potentially like theleading cochlear implant surgeon
in America.
(11:02):
And you're right, he sat veryearly on between Dr Miyamoto, dr
Hitskin, my hearing care inEvansville.
The bar was set very high forpatient-centered care, great
group, absolutely All right.
Dr. Douglas L. Beck (11:14):
So you got your diagnosis.
You met with Dr Miyamoto.
Did you ever get a cochlearimplant?
Matt Hay (11:20):
So that was the initial reaction was is this a
CI candidate?
As they look more closely andunderstanding with my
neurofibromatosis to diagnosisthat a CI might work for a
little bit.
But as that nerve continues todeteriorate because of the tumor
, the CI was not going to worklong term, just like a hearing
(11:43):
aid wouldn't work long-term.
So at that point in my life Ihad evolved from an in-the-canal
aid my hearing declined more.
I went to the behind-the-earaid my hearing declined more.
They started messing withdifferent types of domes and
different ways to get moreamplification.
But we knew that a CI wouldjust be a surgery that would
only help me in a short termbecause eventually the nerve was
(12:05):
going to give out.
So that's when we startedhaving conversations not about a
CI but an AVI, which is anauditory brainstem implant.
Dr. Douglas L. Beck (12:13):
Right and auditory brainstem implant
started also at the House EarInstitute with Dr William F
House and one of the surgeonswho studied under Dr House and
they were great, great friendswas Dr Daryl Brackman.
And I had worked with DrBrackman many, many times, dr
House as well, in the operatingrooms at the House Heuer
(12:33):
Institute and it was such anamazing time and such an amazing
place because we would.
When we were starting toinvestigate cochlear implants,
you know we had four majorcenters in the US you had New
York, you had San Francisco, youhad Los Angeles and you had
Salt Lake City and we all workedcollaboratively and it was a
brilliant, brilliant time.
But as far as auditorybrainstem implants went, because
(12:56):
Bill House had operated onquite a few people with NF2, and
it was a major issue what doyou do after you take out the
second acoustic neuroma?
And now you've left the patientdeaf, although you know healthy
but deaf otherwise.
And the question was could youput an electrode directly on the
brainstem?
And we had a whole team offolks in the basement at the
(13:19):
House Ear Institute working onthat for a number of years
before you received that implant.
First one I was involved withwas 1987.
A very dear friend of mine whounfortunately passed in the last
year or two.
Dr Franco Portillo designed thatelectrode that sits on the
ventral dorsal cochlear nucleiof the brainstem and when we
first started to find candidatesfor the auditory brainstem
(13:43):
implant we weren't quite surewho we were looking for and what
the outcomes were going to be.
And there were some great,great stories about that because
the neurosurgeon who workedwith Bill House was Bill
Hitzelberger and I remember Isat down with Hitzelberger and
Bill House one day and I saidhow did you guys ever get these
things approved through the IRB,the Institutional Review Board?
(14:03):
And Bill Hitzelberger looks upat me and he goes I thought Bill
House got you know back inthose days there was no IRB
approval Cochlear implants, youknow, we would just have the
patient certify and understandthat they knew what we were
going to do and why we weregoing to do it and what we were
hoping the outcome would be.
In this Bill House, billHitzelberger, those guys, they
(14:34):
would talk to the patients, tellthem about the expected
outcomes and what they thoughtthey could do, but they never
promised anybody a result.
And you are remarkable, I meanyou right now are listening
through your auditory brainstemimplant.
We're both on computers acouple of thousand miles away
and I'm conversing with you justlike I would if you had, you
know, particularly normalhearing, and we're in the same
(14:54):
room.
I mean, it's absolutelyastounding how well you do Tell
me your thoughts on auditorybrainstem implants.
Matt Hay (15:03):
When somebody asked you to tell what is it like to
hear through an auditorybrainstem implant, Well, first
of all, I'm hearing you sharethese stories, the same in real
time, the same as anybody else.
So I think one of the a bit ofserendipity for me in this
conversation is I hope listenersrecognize that they're hearing
a clinical side and then hearinga patient side back to back,
(15:26):
which is is as an advocate.
That's kind of an idealscenario to me.
So you're explaining theseconversations or you're
explaining the experience thatyou had in la and I'm thinking I
lived this of a guy talking tomiyamoto in indianapolis and dr
miyamoto says you need an aviand I'm I mean, I remember
(15:48):
making these notes and my, mygirlfriend at the time, making
notes of like what ABI standsfor, and they're like you need
to go to LA because there's aguy named Dr Brackman and a guy
named Dr Hitzelberg who have themost experience doing this.
I spent, I went to LA 12 timesand we did pre-op and when I
eventually lost all of myhearing, we flew to LA and I had
(16:08):
my ABI implanted.
Dr Hitzelberg did the cuttingand Dr Brackman did the
implanting and then Steve Ottowas the audiologist in the end
that turned it on.
So I feel like I'm living orwalking down the path that you
and a few other folks helpedpave, five years after you got
done paving it.
So this is exciting for me tohear that aspect of it.
(16:30):
So the ABI was explained to meand you can imagine it now I'm
22, somebody saying we're goingto sew electrodes directly to
your brain and we think that'sthe part of your brain that
processes sound, but theoutcomes are wildly divergent.
And when you start messing witha brainstem you know there's
there's some inherent risk inthat surgery and that implanting
(16:52):
.
I was still young and I don'tknow, maybe egotistical enough
that I thought, oh, it's goingto be fine, it'll be fine.
So I had the surgery done andyou have to go back quarterly
for mapping or programming.
Steve Otto there did awonderful job of managing my
expectations expectations and Ithink this is a really important
(17:15):
thing for people in hearingcare to understand the balance
of being able to manageexpectations without limiting
what a patient is capable ofdoing.
Dr. Douglas L. Beck (17:21):
Exactly.
Matt Hay (17:21):
Because I did get a little bit of a limiter because
most AVI's, if they worked atall, that was reasons for high
fiving.
You know, you and your friendsin the basement would high five
if you had heard.
My implant eight weeks laterturned on and I heard anything
and there were no negative sideeffects.
For two years everything withmy EVI sounded like a bottle cap
(17:43):
and a garbage disposal or likewadding up aluminum foil.
But I was told that would bethe expectation.
Be the expectation.
I will tell you, as frustratingas that sounds or unpleasant as
that sounds, when you live in ahearing world and deaf culture
capital D, deaf culture is notyour culture, but you are thrown
(18:09):
into that because you're nowdeaf.
It is lonely and terrifyingbecause that wasn't my people,
so there was nothing wrong withbeing deaf.
It that wasn't my people, so Idid I.
There wasn't nothing wrong withbeing deaf.
It just wasn't right for mebeing able to hear an oven timer
and not burn a pizza, beingable to hear click, clack, click
, clack and know that meant mywife was home right, because I
could hear her shoes on ahardwood floor.
(18:29):
Those are amazing sounds tohear, even if you can't
differentiate between an oventimer and click clack of shoes
or a thunderbolt.
Being able to hear anything waslife alteringly positive.
And so I thought, if my ABIgives me that I have met the
expectations, and I'm happy withit.
And that was the case for aboutfour years.
(18:51):
And then we had kids.
Dr. Douglas L. Beck (18:54):
Before we get to the kids.
So I noticed in the book yourwife was a medical student.
Soon after you met she had goneto medical school and somewhere
in your journey together shedecided that that wasn't the
right path for her.
Can you tell me about that?
Matt Hay (19:12):
Sure, I hope the theme here doesn't become how
self-centered I was at 19, 20,21.
But again, going back to mymentality, at that point we had
only been dating for about sixmonths and my health declined
quickly because of NF and I'dhad a spine surgery and was
facing deafness and brainsurgery.
(19:33):
That's a lot for a lovely youngwoman in med school to have to
decide.
This is something I want tochoose.
I can't choose not to do this.
I can't walk away from it.
She can, and I guess we've beenmarried 20 years now.
I guess she still could, butfortunately she hasn't.
And I thought well, I don'twant you to do that for me, I
(19:56):
don't want you to walk away fromthis for me, and I don't think
I've ever loved her more than inthe moment where she said what
makes you think this is aboutyou?
I love it.
I'm choosing my journey forwhat's best for me.
She does not like making thingsabout her.
For me, she does not likemaking things about her, and so
(20:20):
I like to point out that she isas wonderful as anyone reading
the book might think, she is.
She really is that great andshe's perfect for me.
I think Bigger she doesn'trepresent, you know, a mom or a
wife on a pedestal.
She represents a supportnetwork and a support structure
that anybody going through ahard time you know.
You mentioned earlier on Dougan ability to get back up.
(20:42):
I can get back up because Ihave somebody extending a hand
to me to help me up.
And my journey has been hard.
I mean I've had 20 surgeriesand I'm deaf and I hear with 12
electrodes and I don't havebalance or facial movement or
blinking or tearing.
But it's easier when you have asupport network around you
physically, emotionally, and somy wife Nora has been that.
(21:06):
But she also represents thatsupport network that I hope
everybody finds or has.
Dr. Douglas L. Beck (21:12):
That's absolutely incredible and I'm so
happy for you.
You're a very lucky man, butyou know she's a lucky woman as
well.
One of, not one.
Quite a few of your surgeriesinvolved eyelid surgery, and
I'll just do the backstory onthat.
With acoustic neuromas andother skull-based tumors,
sometimes the nerves thatinnervate the eyelid, that
(21:35):
allows it to open and close, geta little bit beat up in that
surgery.
And what happens then is wehave to tape the eye closed and
we have to keep it lubricated toprevent corneal damage from
occurring.
And in your case you had aself-closing spring installed
and that didn't work out so welland it took a while for that to
come around and be a successstory for you.
(21:55):
What we used to do when, when Iwas at house in the early and
mid eighties on patients who hadfacial weakness following
surgery, we would actually put agold, tiny gold plate into the
eyelid so that the eyelid woulddrop, and that's a different
nerve than the one that picks itup.
And I was, when I was readingthe very detailed story about
(22:18):
your left eye and all of that, Iwas wondering.
But obviously you know thesurgeons made the best decisions
with the information they hadand you've got a wonderful
outcome at this point, you know.
Matt Hay (22:29):
I thought it was important to include that Again.
Certainly, my story is justabout me and my experience, but
I tried to come at this from aperspective of it's not a story
about losing your hearing andhaving eye surgery.
Certainly that is I write aboutthat but I try to look at it
from a perspective of you mightsee the challenge I'm going
(22:49):
through and people might think,oh, you know, matt can't hear.
Well, they don't realize notbeing able to tear or blink
causes more day-to-daydifficulty than not being able
to hear, and I think that'srepresentative of we might think
we know what someone is goingthrough but we don't.
Or the thing that might be anobvious challenge for someone,
(23:11):
based on our impression of them,might not be the thing that
they are really struggling withat all, and I think I hope that
could be relatable to a lot ofpeople.
Dr. Douglas L. Beck (23:21):
I think it's so important, matt, because
it's a.
It's a topic that does not comeup in clinical conversation
often, but it's a major problemin somebody's life when you
can't blink at a normal rate andyour eye doesn't self-lubricate
and you can't clear debris andyour cornea dries up.
And when we talk about facialweakness, you and I discussed
(23:42):
this a few weeks ago, butthere's a scale that we use to
grade facial weakness and it wasdeveloped by Daryl Brackman and
John House no, probably 30, 35years ago and it goes on a grade
one through six, and one isperfectly normal.
Six is no motion at all, Two isa mild weakness and when you
think about Sylvester Stalloneright, rocky, he had probably a
(24:02):
grade two if I were to look athim.
Grade three is mild, with eyeclosure.
Grade four means you don't haveeye closure and a mild or
moderate weakness.
Five no eye closure and a moresignificant weakness.
And six no eye closure and youcan't move your face because of
the facial nerve activity thathappened during surgery
(24:26):
iatrogenic injury.
So you can see levels four, fiveand six all involve bad or weak
or no closure of the eye.
So it does happen and it, butit's not something that most
patients ever talk about or ordiscuss, and and very few have
had to have quite as manysurgeries for that issue as you
did.
But I'm I'm not doubting thesurgical surgical decisions at
(24:50):
all.
I think you know you had aunique situation that they dealt
with very well and it came outpretty good for you.
So you went through all ofthese experiences and I would be
remiss if I didn't mention thatyour actual surgeon's surgeon,
in addition to the neurosurgeon,dr William Hitzelberger, was a
neurotologist and a dear friend,dr Daryl Brackman.
(25:11):
What was your experience withDr Brackman?
Matt Hay (25:13):
Yeah, that's exactly right.
And so again, it sounds sillyto say but boy, there was never
a better time in history to loseyour hearing, because if it had
happened five years sooner, Iwould have been a step behind
each one of these things.
I mean, the FDA approved theAVI four years before I had it
implanted, knowing what I knowabout medicine.
(25:34):
The FDA knowing what I knowabout medicine.
Now the FDA doesn't approvesomething and it starts getting
implanted the next day.
So four years is actually apretty quick turnaround when it
takes time for someone to beexposed to it, trained on it,
develop an expertise in it.
So it was still very cuttingedge at the time, enough that
(25:55):
even Dr Miyamoto said I'm notcomfortable.
I've done hundreds and hundredsof CI surgeries and I'm not
comfortable doing this.
I think you need to go to LA.
And you were right about theHouse-Brackman facial scale,
because when I woke up withfacial paralysis initially, you
think, well, if the scale formeasuring this is named after my
(26:16):
surgeon, that's probably a goodsign.
But, the flip side of that iswell, wait, how many times have
they had to deal with this, ifthey had to develop a scale?
So I chose to think of it in amore positive manner, but you
know, another aspect of that,though, is hearing loss is
invisible.
You know, other people can'tsee hearing loss.
(26:37):
It's a physical thing, thatit's presumed to be, a physical
thing that people try to manage.
It's difficult, unless you havebeen there, to appreciate the
mental and emotional side ofmaybe feeling left out or not
picking up on something, orbeing the only one in a room
that doesn't know why someone islaughing.
To add on top of that facialparalysis where they, if I look
(27:00):
in the mirror, I look the same,whether I can hear or not.
But when you look in the mirrorand you have facial paralysis
and that face looking back atyou doesn't look like you think
it's supposed to look, there's apsychological and emotional
toll, and I was not prepared forthat.
I had spent a decade preparingfor hearing loss.
I had not spent a second beingprepared for it's not just I
(27:24):
can't blink, but I can't smile.
I mean my coping mechanism fordealing with hearing loss, yeah.
Dr. Douglas L. Beck (27:31):
And you're right.
I mean, you can't blink, youcan't smile, you can't eat
comfortably.
Food tends to fall out of theparalyzed side.
Matt Hay (27:40):
Yeah, oh, doug, I've never met a bowl of soup I can't
spill.
I mean, if I have chili, you'llknow it for a week.
Yeah, you will, okay.
Dr. Douglas L. Beck (27:50):
Now, before I let you go because you've
been very gracious with yourtime two things I want to talk
about.
One is I remember in the bookand I love this I reread this
section a couple of times over.
You knew you were going deaf,you knew you were going to lose
your hearing, and so you thoughtabout this and you and I have
very similar tastes in music butI didn't know what you chose.
You chose that you wanted tohave a song to listen to as the
(28:13):
last song you would hear throughyour own natural ears, and it
had to be a very moving, veryemotional, very brilliant song.
So what song did you choose?
Matt Hay (28:22):
So my wife and I wake up every day to here Comes the
Sun, and we have a little Sonyalarm clock CD alarm clock at
the time, and that was our wakeup song.
And so you know, and I writeabout this pretty extensively uh
, is that last day of hearing?
And I don't, I don't want togive it away, but the last day
of hearing, if you can only hearone more song, what's that
(28:44):
going to be?
If you can only hear one morething, what that's going to be?
And so you know, here comes thesun was the song that played a
pivotal role in that.
Um, you know, and then then thenext day you can't hear.
There's a lot, there's a lotthat goes into that.
But you're right, the title ofthe book is Soundtrack of
Silence, because I just had thisreally unique circumstance
(29:05):
where, if I'm never going tohear again, what songs do I want
stuck in my head, like, whatsongs do I want to be thinking
about in my head for the rest ofmy life?
And what I didn't expect is.
So that in itself is a story.
But I think what isparticularly unique about this
is, I mentioned earlier, we hadkids and, uh, after I lost my
(29:29):
hearing, and that was theadditional kick I needed to say
being able to hear oven timersis not going to be enough for me
.
Uh, or maybe that's what I willlive with, but it won't be for
a lack of trying to do more.
And I was not trying to do more.
I sort of self-diagosed auditorybrainstem implant training and
(29:50):
said if I have these songs stuckin my head and I was listening
to them with such intention whydon't I start listening to those
again?
It hopes that those songs in mybrain can tell my ABI.
This is what those songs aresupposed to sound like.
You think the opening chord oflet it be.
You know, there is bum, bum,bum, but it's not.
(30:11):
It's this.
And so can I start creating anargument between my brain and
the technology, the 12electrodes, because right now my
brain's losing thatconversation.
And so can I use John, paul,george and Ringo to help
convince my ABI.
This is the way things sound.
And again, some more detail here.
(30:32):
In the books, a seven or eighthour read.
And again some more detail here.
I mean the book's a seven oreight hour read, so it's hard to
cover all of this in a shorttime, but I talk about the day
that I was able to recognize asong again, and that was a very
powerful moment because not onlywas music the thing I turned to
ahead of my hearing loss, butmusic was the thing that I can
(30:52):
attribute to improving myhearing loss even after getting
my implant.
And I don't think that's anaspect of music very many.
Maybe you thought about that asa dream in the basement at the
House Ear Institute in 87, butthat was a real part of my life.
Dr. Douglas L. Beck (31:09):
This is an amazing self-rehabilitation
program you put yourself on andI'm just thrilled that you did
it.
And it's one of those thingsthat we used to encourage people
back in the 80s when they gotcochlear implants.
We would say you know books ontape, read familiar things, have
people that love you, read toyou so that you know it's a
script that you're alreadyfamiliar with.
(31:30):
So the words, the story, so youcan start to take in sound and
line that up with your brain,because your brain is plastic
through your whole life.
It's more plastic when you'reyounger but your brain can adapt
if given good information.
Matt Hay (31:44):
Well, and it was unexpected for me was once I
started thinking about things interms of brain hearing and
brain learning versus, becausemy again, my ears don't do
anything except keep glassesfrom falling off my face, so
it's everything I hear isdirectly to my brain.
So I, all of a sudden and justin the last few years I hit my
(32:06):
audiologist has started usingthe phrase brain hearing.
Using the phrase brain hearing,I've had the good fortune to
work with, just in the lastmonth, nina Krauss and Carol
Flexer and Angela Alexander andCarolyn Herbert at IU, and all
of these just brilliant womenthat are focused on brain
(32:27):
learning.
And when I, when AngelaAlexander started sharing with
me some of the work she wasdoing in auditory processing
disorder training, I agreed towork with her and I said, angela
, I'm on year 16 with my implant.
You're not going to help meLike I, I will do this.
At the time I was working witha wonderful company still a
wonderful company called Redux,and I was like I'll do this with
you If you, in exchange, yousay nice things about Redux.
(32:50):
Um, so she said, let's just seewhat happens.
And we spent about 20 hourstogether working on phonemes and
really my life had been tryingto hear better by osmosis and
then focusing on individualsongs and then lines of songs.
It took my conversation withher and the work she was doing
(33:10):
with jack Katz to say let's notwork on a line, let's work on a
ma-pa-ta.
And again I was like I'm at 67%open-aided speech recognition
with an implant.
And so researchers are tellingme they've never seen somebody
with an implant do that well.
So let's just be cautiouslyoptimistic here.
(33:31):
After about 20 hours of training.
I remember driving to work oneday and the line came on.
When I find myself in times oftrouble, mother Mary comforts me
, which was the line I had beensinging in my head the day
before we had been working on ta, ta, point to ta, say
toothpaste.
And that next morning, drivingto work, I heard my mother,
(33:54):
mother Mary, comes to me and Ihad not heard to me.
I had not heard the T in therein a decade and there's some
correlation, causation there.
But a day before we had beenworking on that individual sound
.
And so following 20 hours ofphoneme work, my open-aided
(34:15):
speech recognition testing after16 years went from 67% to 96%
and I did not do anythingdifferent other than working on,
I guess some still relativelynew concepts in how does your
brain hear stuff?
Dr. Douglas L. Beck (34:33):
Fantastic.
Matt Hay (34:34):
Versus.
How do your ears hear stuff?
So I owe a lot to a lot, youknow, like I said, the right
place right there.
There's never been a bettertime to be deaf.
Dr. Douglas L. Beck (34:43):
And you know all three of those women I
mean.
Angela is brilliant.
She's in Australia, so you'redoing courses with her online
right.
Carol Flexer, past president ofAAA, and she is a professor
emeritus at the Ohio StateUniversity.
Carol and I wrote a lot ofarticles together.
She is such a joy to work with.
She is so much fun and so smart.
(35:04):
And, of course, nina youmentioned Dr Nina Krause.
She's actually a biologist andshe is at Northwestern in
Chicago and her book came outabout two or three years ago
Also a brilliant book.
Anybody who hasn't read thatreally should.
But, matt, you've been sogenerous with your time.
I want to totally endorse thesoundtrack of Silence.
(35:25):
I read it.
I got teary every now and then.
It's a very deep story.
It's not just about auditorybrainstem implants or
neurofibromatosis.
It's about living with andliving through these situations
and managing them probablybetter than most people could
have.
And I'm just so proud of youand so thrilled with your
success.
I really want to encouragepeople to buy the book.
(35:46):
I just thought it was aspectacular read and it's a fun
read And'll.
Matt Hay (35:50):
It's a feel-good story because you, you just are
amazing well, I appreciate thebet, doug, and I will say I
would not be here if I didn'tknow you and the work you're
doing and, uh, the delfinos andthe work that they are doing.
You know, blaise delfino wasthe first person that ever said
to me I would like to see howreal ear measurement works and
(36:14):
to be able to observe the waythat his team and the best
practices that they follow andthe patient approach that.
These are the kind of peoplethat in my professional hearing
care journey, in my patientadvocacy journey, these are the
people that I want to work withand learn from and serve
patients alongside.
(36:34):
So, even though I'm not ahearing care professional, I'm
here because you guys are thepeople that I want to align with
.
Might be seem a little bitstrong, but you guys are doing
the work that I want to be apart of.
So thank you for doing that.
Dr. Douglas L. Beck (36:46):
I am so appreciative of that.
I couldn't agree with you moreBlaise Delfino is a powerhouse,
a very energetic, enthusiasticand intelligent young man, and,
yeah, he's wonderful.
Matt, thank you so much for allyou've done, for your advocacy
and for telling your story andfor writing an incredible book.
Matt Hay (37:05):
Well, thanks, Doug.
I hope other people enjoy it aswell.
Thank you, welcome back to another
episode of the Hearing Matterspodcast.
Of the Hearing Matters podcast,I'm your founder and host,
blaise Delfino, and, as afriendly reminder this podcast
is separate from my work atStarkey.
Dr. Douglas L. Beck (00:55):
Hi, my name is Dr Douglas Beck, I'm an
audiologist and you're listeningto the Hearing Matters podcast.
What we're doing today is we'reinterviewing my friend, matt
Hay, and some of you have hadthe pleasure of reading his book
already, but we're going to getinto that in a little bit.
Matt, first of all, I want tothank you for being here.
Matt Hay (01:10):
It's great to see you.
Good to see you too, doug.
I know we've, over the years,traded texts and emails, but
you're a busy guy, so this isactually just a chance for us to
catch up.
Dr. Douglas L. Beck (01:18):
This is a good time to catch up.
I've been seeing online so muchpraise for the book and for
your attitude, your competence,your stick with it-ness.
You know, your ability to.
You know keep getting back upbecause you've been, you know
you've been punched down in thenose a couple of times here and
you can just keep getting up andlife just keeps getting better
and I'm so proud of you.
I want to start by talkingabout your hearing loss.
(01:39):
How old were you when you firstnoticed that you had hearing
loss?
Matt Hay (01:45):
So thanks for that.
I appreciate the kind words,doug, and I do.
I mean, technically I'm deaf.
I'm deaf because, my well, myears are pretty great.
I mean, everything about myears really works fine.
They just aren't connected tomy brain Right, and that is
because the nerve that connectsthe hearing process to the brain
was damaged from benign tumors.
(02:06):
So I have a rare disease calledneurofibromatosis type 2 or NF2
.
And it results in I lack atumor suppressor gene that
you're lucky enough to have thatand as a result, benign tumors
can grow on the nerve sheathanywhere in my body and they
just happen to really likehearing nerves.
Dr. Douglas L. Beck (02:26):
And you know this is not an unusual
situation for people with NF2.
I can recall when I was athouse 35, 40 years ago, we would
frequently see patients who hadneurofibromatosis type 2, and
it would cause acoustic neuromasto grow along the hearing nerve
, which is much.
You know the situation you'redescribing and these are, as you
(02:48):
said, benign tumors.
But even though they're benign,they can compress the brainstem
as they grow.
And so you know, if the tumoris growing and diagnosed, it
makes good sense to have themremoved, and the problem with
that, of course, is the numberone way to get at them is
through a trans-labyrinthinecraniotomy, which pretty much
(03:08):
drills through the inner ear toget access to those tumors.
So that's the situation thatyou found yourself in.
Matt Hay (03:15):
Yeah, and you mentioned it is an acoustic
neuroma, which is not toouncommon.
There are a lot of people outthere that lose hearing in one
side because of an acousticneuroma.
But you're right, the wordbenign is actually a poor
description, because having twoyou know, two or three
centimeter tumors compressingyour brain stem is anything but
benign.
(03:36):
Exactly, and what is uniqueabout nf2 is it's a bilateral
acoustic neuroma.
So my I was 19 to answer yourinitial question, was 19 in
college and over the course of asemester, lost the ability to
hear on a phone just in a matterof months, and so I didn't
realize it at the time.
(03:56):
But this is also one of thereasons I'm so proud to be here.
I'm proud to know you guys andthe work that you and your
colleagues do is.
I went to an audiologist and Icould have very easily been sit
with a hearing aid and sent onmy way.
I didn't recognize the benefitand privilege and opportunity.
I had to go to an audiologistthis is in Evansville, indiana,
(04:19):
in 2004 and have an audiologistthat said your tests are not
coming back.
The way I have been trained toread tests in Indian University
and my AudD program, I reallythink that you need to see an
ENT and have an MRI.
I assumed that meant thisaudiologist did not know enough
about what they were doing.
(04:40):
I realized in hindsight howfortunate I was, because you
mentioned best practices in thisin the introduction.
That was a best practice.
Dr. Douglas L. Beck (04:48):
It certainly was, and it's so
important that I want to makethis distinction here, because
good practices are fine and alot of people will do, you know,
traditional audiometry in theiroffice.
The problem with traditionalaudiometry and the problem with
screenings hearing screenings isyou could have a situation much
(05:09):
like you had, matt, and itwould be invisible to the
clinician quite often, and sothey might say, well, gee,
you've passed a screening, orgee, your hearing appears to be
within normal limits, but thatdoesn't necessarily explain the
distortion that you'reperceiving.
(05:31):
And you know, when we do bestpractices and best practices are
not not necessarily, you know,a local choice these are
practices that have been writtenby subject matter experts who
have been in their professionfor a very long period of time,
and they are written by theAmerican Academy of Audiology,
the International HearingSociety, the American Speech
Language Hearing Association,those national groups.
They write best practices, allof which include basic
(05:52):
diagnostics, but then they alsosay listening and communication
assessments and speech and noisetests and acoustic reflexes and
other sophisticated tests thatare designed to help us see the
forest for the trees.
If we're just doing screeningsand basic audiometry tests, we
don't have the ability to gatherall the information we need to
(06:14):
make the very best referral.
In your case, clearly that madea huge difference.
Matt Hay (06:19):
And I think it's accurate to say I took that for
granted because, I mean, I'mjust a 19-year-old kid at the
time who wants to be able towatch SportsCenter without
having the volume up to 99 onthe TV at a fraternity house.
So my concern was veryshort-sighted.
But I look back now and realizewhat an opportunity that was
(06:40):
and that was really the firststep that put me on a path
toward patient advocacy and bestpractices, of recognizing how
much my life I mean it reallychanged that day because four
days later I was had an accuratediagnosis for a disease that
impacts one in 40,000 people.
I know now that rare diseasediagnosis can take four years.
(07:04):
Absolutely I know now that raredisease diagnosis can take four
years.
It took me four days and ithappened because of a hearing
care professional who was ableto put their maybe ego or aside
and say I don't, my tests arenot telling me what I think
they're supposed to tell me.
I think we need more help.
Um and I I get goosebumpssaying that now because how
(07:26):
fortunate am I to have had thatlevel of care that early on in
my hearing loss experience.
Dr. Douglas L. Beck (07:32):
And what year was that, Matt, when you
got diagnosed?
Matt Hay (07:35):
It would have been about 2000.
Well, that first diagnosiswould have been 1997.
So I was a student at IU andliving in Evansville.
Dr. Douglas L. Beck (07:43):
And in 1997 , you know, mris were still
pretty new.
I mean, you know, this is anamazing thing.
We think of these things nowand say, oh yeah, just go get
that done.
But in 1997, it was a veryexpensive test and people didn't
want to do it unless they had adarn good reason to order it,
because somebody's going to haveto pay for it.
And now the MRIs, of course,are even much more specific,
(08:04):
much more accurate, smallerslices, and we can see more
detail.
But so in 97, you got yourdiagnosis and then did you try
hearing aids along the way, ordid you just not do that?
Matt Hay (08:17):
So I was very fortunate in being at Indian
University and the speech andhearing program that they had
there, of being at IndianaUniversity and the speech and
hearing program that they hadthere Again, of just sort of
falling into the right place atthe right time.
Someone I worked with at Indianahappened to be the son-in-law
of Dr Hipskin, who ran thespeech and hearing program at
(08:38):
Indiana and has been a friendnow for 30 years, and I get into
this a little bit in the bookbecause there's some funny
anecdotes that happen whenyou're a cocky 19-year-old
trying to get fitted for hearingaids.
But I was able to meet somebodythat said, hey, I think there's
an opportunity here for us tohelp you and for you to help my
(08:59):
speech and hearing program.
And so I was fitted and Iremember at the time so this
would have been 97.
He was very excited because Iwas the first patient at Indiana
university to get fitted with adigital aid and I remember how
excited they were about adigital aid and I thought I
could not care less, like I justwant to hear better.
Well, I don't care about thetechnology and I remember him
(09:21):
explaining the way that thiswould be programmed and his
students, you know, had theopportunity to to program a
digital hearing aid for thefirst time and I thought I just
want to hear SportsCenter.
Dr. Douglas L. Beck (09:32):
I know, I know Well, it's a great story
and you do detail it in the book.
But you know, shout out toIndiana University.
I mean, it's a brilliantmedical school.
To the best of my recollection,I think at that period in time,
dr Richard Miyamoto was thechair at Indiana and I met Rich
through multiple meetings at theHousehear Institute 20 years
(09:53):
before that, and you know he wasan incredibly talented surgeon
and a wonderful guy.
And even the audiology programthere was brilliant.
Everything about IndianaUniversity, the medical school,
communication disorders,audiology, all aces it was
fantastic.
So you were at Indiana as anundergraduate and you had your
(10:15):
audio done and then did you getto meet any of those surgeons or
physicians from IndianaUniversity Medical School
Indiana?
Matt Hay (10:21):
University Medical School.
So I did and you're right,although he's not rich, to me
he's Dr Miyamoto After beingdiagnosed while a student at IU
in Indiana is where I had my MRIand then they referred me to
the speech and hearing programthere.
And so just another matter ofof good timing and luck and
(10:41):
maybe some privilege of havinginsurance that would cover that
luck and maybe some privilege ofhaving insurance that would
cover that the physician thatwas attending was Dr Miyamoto.
So here I am, using my hearingbecause of an acoustic neuroma
or bilateral acoustic neuromas,and I'm being seen by at the
time potentially like theleading cochlear implant surgeon
in America.
(11:02):
And you're right, he sat veryearly on between Dr Miyamoto, dr
Hitskin, my hearing care inEvansville.
The bar was set very high forpatient-centered care, great
group, absolutely All right.
Dr. Douglas L. Beck (11:14):
So you got your diagnosis.
You met with Dr Miyamoto.
Did you ever get a cochlearimplant?
Matt Hay (11:20):
So that was the initial reaction was is this a
CI candidate?
As they look more closely andunderstanding with my
neurofibromatosis to diagnosisthat a CI might work for a
little bit.
But as that nerve continues todeteriorate because of the tumor
, the CI was not going to worklong term, just like a hearing
(11:43):
aid wouldn't work long-term.
So at that point in my life Ihad evolved from an in-the-canal
aid my hearing declined more.
I went to the behind-the-earaid my hearing declined more.
They started messing withdifferent types of domes and
different ways to get moreamplification.
But we knew that a CI wouldjust be a surgery that would
only help me in a short termbecause eventually the nerve was
(12:05):
going to give out.
So that's when we startedhaving conversations not about a
CI but an AVI, which is anauditory brainstem implant.
Dr. Douglas L. Beck (12:13):
Right and auditory brainstem implant
started also at the House EarInstitute with Dr William F
House and one of the surgeonswho studied under Dr House and
they were great, great friendswas Dr Daryl Brackman.
And I had worked with DrBrackman many, many times, dr
House as well, in the operatingrooms at the House Heuer
(12:33):
Institute and it was such anamazing time and such an amazing
place because we would.
When we were starting toinvestigate cochlear implants,
you know we had four majorcenters in the US you had New
York, you had San Francisco, youhad Los Angeles and you had
Salt Lake City and we all workedcollaboratively and it was a
brilliant, brilliant time.
But as far as auditorybrainstem implants went, because
(12:56):
Bill House had operated onquite a few people with NF2, and
it was a major issue what doyou do after you take out the
second acoustic neuroma?
And now you've left the patientdeaf, although you know healthy
but deaf otherwise.
And the question was could youput an electrode directly on the
brainstem?
And we had a whole team offolks in the basement at the
(13:19):
House Ear Institute working onthat for a number of years
before you received that implant.
First one I was involved withwas 1987.
A very dear friend of mine whounfortunately passed in the last
year or two.
Dr Franco Portillo designed thatelectrode that sits on the
ventral dorsal cochlear nucleiof the brainstem and when we
first started to find candidatesfor the auditory brainstem
(13:43):
implant we weren't quite surewho we were looking for and what
the outcomes were going to be.
And there were some great,great stories about that because
the neurosurgeon who workedwith Bill House was Bill
Hitzelberger and I remember Isat down with Hitzelberger and
Bill House one day and I saidhow did you guys ever get these
things approved through the IRB,the Institutional Review Board?
(14:03):
And Bill Hitzelberger looks upat me and he goes I thought Bill
House got you know back inthose days there was no IRB
approval Cochlear implants, youknow, we would just have the
patient certify and understandthat they knew what we were
going to do and why we weregoing to do it and what we were
hoping the outcome would be.
In this Bill House, billHitzelberger, those guys, they
(14:34):
would talk to the patients, tellthem about the expected
outcomes and what they thoughtthey could do, but they never
promised anybody a result.
And you are remarkable, I meanyou right now are listening
through your auditory brainstemimplant.
We're both on computers acouple of thousand miles away
and I'm conversing with you justlike I would if you had, you
know, particularly normalhearing, and we're in the same
(14:54):
room.
I mean, it's absolutelyastounding how well you do Tell
me your thoughts on auditorybrainstem implants.
Matt Hay (15:03):
When somebody asked you to tell what is it like to
hear through an auditorybrainstem implant, Well, first
of all, I'm hearing you sharethese stories, the same in real
time, the same as anybody else.
So I think one of the a bit ofserendipity for me in this
conversation is I hope listenersrecognize that they're hearing
a clinical side and then hearinga patient side back to back,
(15:26):
which is is as an advocate.
That's kind of an idealscenario to me.
So you're explaining theseconversations or you're
explaining the experience thatyou had in la and I'm thinking I
lived this of a guy talking tomiyamoto in indianapolis and dr
miyamoto says you need an aviand I'm I mean, I remember
(15:48):
making these notes and my, mygirlfriend at the time, making
notes of like what ABI standsfor, and they're like you need
to go to LA because there's aguy named Dr Brackman and a guy
named Dr Hitzelberg who have themost experience doing this.
I spent, I went to LA 12 timesand we did pre-op and when I
eventually lost all of myhearing, we flew to LA and I had
(16:08):
my ABI implanted.
Dr Hitzelberg did the cuttingand Dr Brackman did the
implanting and then Steve Ottowas the audiologist in the end
that turned it on.
So I feel like I'm living orwalking down the path that you
and a few other folks helpedpave, five years after you got
done paving it.
So this is exciting for me tohear that aspect of it.
(16:30):
So the ABI was explained to meand you can imagine it now I'm
22, somebody saying we're goingto sew electrodes directly to
your brain and we think that'sthe part of your brain that
processes sound, but theoutcomes are wildly divergent.
And when you start messing witha brainstem you know there's
there's some inherent risk inthat surgery and that implanting
(16:52):
.
I was still young and I don'tknow, maybe egotistical enough
that I thought, oh, it's goingto be fine, it'll be fine.
So I had the surgery done andyou have to go back quarterly
for mapping or programming.
Steve Otto there did awonderful job of managing my
expectations expectations and Ithink this is a really important
(17:15):
thing for people in hearingcare to understand the balance
of being able to manageexpectations without limiting
what a patient is capable ofdoing.
Dr. Douglas L. Beck (17:21):
Exactly.
Matt Hay (17:21):
Because I did get a little bit of a limiter because
most AVI's, if they worked atall, that was reasons for high
fiving.
You know, you and your friendsin the basement would high five
if you had heard.
My implant eight weeks laterturned on and I heard anything
and there were no negative sideeffects.
For two years everything withmy EVI sounded like a bottle cap
(17:43):
and a garbage disposal or likewadding up aluminum foil.
But I was told that would bethe expectation.
Be the expectation.
I will tell you, as frustratingas that sounds or unpleasant as
that sounds, when you live in ahearing world and deaf culture
capital D, deaf culture is notyour culture, but you are thrown
(18:09):
into that because you're nowdeaf.
It is lonely and terrifyingbecause that wasn't my people,
so there was nothing wrong withbeing deaf.
It that wasn't my people, so Idid I.
There wasn't nothing wrong withbeing deaf.
It just wasn't right for mebeing able to hear an oven timer
and not burn a pizza, beingable to hear click, clack, click
, clack and know that meant mywife was home right, because I
could hear her shoes on ahardwood floor.
(18:29):
Those are amazing sounds tohear, even if you can't
differentiate between an oventimer and click clack of shoes
or a thunderbolt.
Being able to hear anything waslife alteringly positive.
And so I thought, if my ABIgives me that I have met the
expectations, and I'm happy withit.
And that was the case for aboutfour years.
(18:51):
And then we had kids.
Dr. Douglas L. Beck (18:54):
Before we get to the kids.
So I noticed in the book yourwife was a medical student.
Soon after you met she had goneto medical school and somewhere
in your journey together shedecided that that wasn't the
right path for her.
Can you tell me about that?
Matt Hay (19:12):
Sure, I hope the theme here doesn't become how
self-centered I was at 19, 20,21.
But again, going back to mymentality, at that point we had
only been dating for about sixmonths and my health declined
quickly because of NF and I'dhad a spine surgery and was
facing deafness and brainsurgery.
(19:33):
That's a lot for a lovely youngwoman in med school to have to
decide.
This is something I want tochoose.
I can't choose not to do this.
I can't walk away from it.
She can, and I guess we've beenmarried 20 years now.
I guess she still could, butfortunately she hasn't.
And I thought well, I don'twant you to do that for me, I
(19:56):
don't want you to walk away fromthis for me, and I don't think
I've ever loved her more than inthe moment where she said what
makes you think this is aboutyou?
I love it.
I'm choosing my journey forwhat's best for me.
She does not like making thingsabout her.
For me, she does not likemaking things about her, and so
(20:20):
I like to point out that she isas wonderful as anyone reading
the book might think, she is.
She really is that great andshe's perfect for me.
I think Bigger she doesn'trepresent, you know, a mom or a
wife on a pedestal.
She represents a supportnetwork and a support structure
that anybody going through ahard time you know.
You mentioned earlier on Dougan ability to get back up.
(20:42):
I can get back up because Ihave somebody extending a hand
to me to help me up.
And my journey has been hard.
I mean I've had 20 surgeriesand I'm deaf and I hear with 12
electrodes and I don't havebalance or facial movement or
blinking or tearing.
But it's easier when you have asupport network around you
physically, emotionally, and somy wife Nora has been that.
(21:06):
But she also represents thatsupport network that I hope
everybody finds or has.
Dr. Douglas L. Beck (21:12):
That's absolutely incredible and I'm so
happy for you.
You're a very lucky man, butyou know she's a lucky woman as
well.
One of, not one.
Quite a few of your surgeriesinvolved eyelid surgery, and
I'll just do the backstory onthat.
With acoustic neuromas andother skull-based tumors,
sometimes the nerves thatinnervate the eyelid, that
(21:35):
allows it to open and close, geta little bit beat up in that
surgery.
And what happens then is wehave to tape the eye closed and
we have to keep it lubricated toprevent corneal damage from
occurring.
And in your case you had aself-closing spring installed
and that didn't work out so welland it took a while for that to
come around and be a successstory for you.
(21:55):
What we used to do when, when Iwas at house in the early and
mid eighties on patients who hadfacial weakness following
surgery, we would actually put agold, tiny gold plate into the
eyelid so that the eyelid woulddrop, and that's a different
nerve than the one that picks itup.
And I was, when I was readingthe very detailed story about
(22:18):
your left eye and all of that, Iwas wondering.
But obviously you know thesurgeons made the best decisions
with the information they hadand you've got a wonderful
outcome at this point, you know.
Matt Hay (22:29):
I thought it was important to include that Again.
Certainly, my story is justabout me and my experience, but
I tried to come at this from aperspective of it's not a story
about losing your hearing andhaving eye surgery.
Certainly that is I write aboutthat but I try to look at it
from a perspective of you mightsee the challenge I'm going
(22:49):
through and people might think,oh, you know, matt can't hear.
Well, they don't realize notbeing able to tear or blink
causes more day-to-daydifficulty than not being able
to hear, and I think that'srepresentative of we might think
we know what someone is goingthrough but we don't.
Or the thing that might be anobvious challenge for someone,
(23:11):
based on our impression of them,might not be the thing that
they are really struggling withat all, and I think I hope that
could be relatable to a lot ofpeople.
Dr. Douglas L. Beck (23:21):
I think it's so important, matt, because
it's a.
It's a topic that does not comeup in clinical conversation
often, but it's a major problemin somebody's life when you
can't blink at a normal rate andyour eye doesn't self-lubricate
and you can't clear debris andyour cornea dries up.
And when we talk about facialweakness, you and I discussed
(23:42):
this a few weeks ago, butthere's a scale that we use to
grade facial weakness and it wasdeveloped by Daryl Brackman and
John House no, probably 30, 35years ago and it goes on a grade
one through six, and one isperfectly normal.
Six is no motion at all, Two isa mild weakness and when you
think about Sylvester Stalloneright, rocky, he had probably a
(24:02):
grade two if I were to look athim.
Grade three is mild, with eyeclosure.
Grade four means you don't haveeye closure and a mild or
moderate weakness.
Five no eye closure and a moresignificant weakness.
And six no eye closure and youcan't move your face because of
the facial nerve activity thathappened during surgery
(24:26):
iatrogenic injury.
So you can see levels four, fiveand six all involve bad or weak
or no closure of the eye.
So it does happen and it, butit's not something that most
patients ever talk about or ordiscuss, and and very few have
had to have quite as manysurgeries for that issue as you
did.
But I'm I'm not doubting thesurgical surgical decisions at
(24:50):
all.
I think you know you had aunique situation that they dealt
with very well and it came outpretty good for you.
So you went through all ofthese experiences and I would be
remiss if I didn't mention thatyour actual surgeon's surgeon,
in addition to the neurosurgeon,dr William Hitzelberger, was a
neurotologist and a dear friend,dr Daryl Brackman.
(25:11):
What was your experience withDr Brackman?
Matt Hay (25:13):
Yeah, that's exactly right.
And so again, it sounds sillyto say but boy, there was never
a better time in history to loseyour hearing, because if it had
happened five years sooner, Iwould have been a step behind
each one of these things.
I mean, the FDA approved theAVI four years before I had it
implanted, knowing what I knowabout medicine.
(25:34):
The FDA knowing what I knowabout medicine.
Now the FDA doesn't approvesomething and it starts getting
implanted the next day.
So four years is actually apretty quick turnaround when it
takes time for someone to beexposed to it, trained on it,
develop an expertise in it.
So it was still very cuttingedge at the time, enough that
(25:55):
even Dr Miyamoto said I'm notcomfortable.
I've done hundreds and hundredsof CI surgeries and I'm not
comfortable doing this.
I think you need to go to LA.
And you were right about theHouse-Brackman facial scale,
because when I woke up withfacial paralysis initially, you
think, well, if the scale formeasuring this is named after my
(26:16):
surgeon, that's probably a goodsign.
But, the flip side of that iswell, wait, how many times have
they had to deal with this, ifthey had to develop a scale?
So I chose to think of it in amore positive manner, but you
know, another aspect of that,though, is hearing loss is
invisible.
You know, other people can'tsee hearing loss.
(26:37):
It's a physical thing, thatit's presumed to be, a physical
thing that people try to manage.
It's difficult, unless you havebeen there, to appreciate the
mental and emotional side ofmaybe feeling left out or not
picking up on something, orbeing the only one in a room
that doesn't know why someone islaughing.
To add on top of that facialparalysis where they, if I look
(27:00):
in the mirror, I look the same,whether I can hear or not.
But when you look in the mirrorand you have facial paralysis
and that face looking back atyou doesn't look like you think
it's supposed to look, there's apsychological and emotional
toll, and I was not prepared forthat.
I had spent a decade preparingfor hearing loss.
I had not spent a second beingprepared for it's not just I
(27:24):
can't blink, but I can't smile.
I mean my coping mechanism fordealing with hearing loss, yeah.
Dr. Douglas L. Beck (27:31):
And you're right.
I mean, you can't blink, youcan't smile, you can't eat
comfortably.
Food tends to fall out of theparalyzed side.
Matt Hay (27:40):
Yeah, oh, doug, I've never met a bowl of soup I can't
spill.
I mean, if I have chili, you'llknow it for a week.
Yeah, you will, okay.
Dr. Douglas L. Beck (27:50):
Now, before I let you go because you've
been very gracious with yourtime two things I want to talk
about.
One is I remember in the bookand I love this I reread this
section a couple of times over.
You knew you were going deaf,you knew you were going to lose
your hearing, and so you thoughtabout this and you and I have
very similar tastes in music butI didn't know what you chose.
You chose that you wanted tohave a song to listen to as the
(28:13):
last song you would hear throughyour own natural ears, and it
had to be a very moving, veryemotional, very brilliant song.
So what song did you choose?
Matt Hay (28:22):
So my wife and I wake up every day to here Comes the
Sun, and we have a little Sonyalarm clock CD alarm clock at
the time, and that was our wakeup song.
And so you know, and I writeabout this pretty extensively uh
, is that last day of hearing?
And I don't, I don't want togive it away, but the last day
of hearing, if you can only hearone more song, what's that
(28:44):
going to be?
If you can only hear one morething, what that's going to be?
And so you know, here comes thesun was the song that played a
pivotal role in that.
Um, you know, and then then thenext day you can't hear.
There's a lot, there's a lotthat goes into that.
But you're right, the title ofthe book is Soundtrack of
Silence, because I just had thisreally unique circumstance
(29:05):
where, if I'm never going tohear again, what songs do I want
stuck in my head, like, whatsongs do I want to be thinking
about in my head for the rest ofmy life?
And what I didn't expect is.
So that in itself is a story.
But I think what isparticularly unique about this
is, I mentioned earlier, we hadkids and, uh, after I lost my
(29:29):
hearing, and that was theadditional kick I needed to say
being able to hear oven timersis not going to be enough for me
.
Uh, or maybe that's what I willlive with, but it won't be for
a lack of trying to do more.
And I was not trying to do more.
I sort of self-diagosed auditorybrainstem implant training and
(29:50):
said if I have these songs stuckin my head and I was listening
to them with such intention whydon't I start listening to those
again?
It hopes that those songs in mybrain can tell my ABI.
This is what those songs aresupposed to sound like.
You think the opening chord oflet it be.
You know, there is bum, bum,bum, but it's not.
(30:11):
It's this.
And so can I start creating anargument between my brain and
the technology, the 12electrodes, because right now my
brain's losing thatconversation.
And so can I use John, paul,george and Ringo to help
convince my ABI.
This is the way things sound.
And again, some more detail here.
(30:32):
In the books, a seven or eighthour read.
And again some more detail here.
I mean the book's a seven oreight hour read, so it's hard to
cover all of this in a shorttime, but I talk about the day
that I was able to recognize asong again, and that was a very
powerful moment because not onlywas music the thing I turned to
ahead of my hearing loss, butmusic was the thing that I can
(30:52):
attribute to improving myhearing loss even after getting
my implant.
And I don't think that's anaspect of music very many.
Maybe you thought about that asa dream in the basement at the
House Ear Institute in 87, butthat was a real part of my life.
Dr. Douglas L. Beck (31:09):
This is an amazing self-rehabilitation
program you put yourself on andI'm just thrilled that you did
it.
And it's one of those thingsthat we used to encourage people
back in the 80s when they gotcochlear implants.
We would say you know books ontape, read familiar things, have
people that love you, read toyou so that you know it's a
script that you're alreadyfamiliar with.
(31:30):
So the words, the story, so youcan start to take in sound and
line that up with your brain,because your brain is plastic
through your whole life.
It's more plastic when you'reyounger but your brain can adapt
if given good information.
Matt Hay (31:44):
Well, and it was unexpected for me was once I
started thinking about things interms of brain hearing and
brain learning versus, becausemy again, my ears don't do
anything except keep glassesfrom falling off my face, so
it's everything I hear isdirectly to my brain.
So I, all of a sudden and justin the last few years I hit my
(32:06):
audiologist has started usingthe phrase brain hearing.
Using the phrase brain hearing,I've had the good fortune to
work with, just in the lastmonth, nina Krauss and Carol
Flexer and Angela Alexander andCarolyn Herbert at IU, and all
of these just brilliant womenthat are focused on brain
(32:27):
learning.
And when I, when AngelaAlexander started sharing with
me some of the work she wasdoing in auditory processing
disorder training, I agreed towork with her and I said, angela
, I'm on year 16 with my implant.
You're not going to help meLike I, I will do this.
At the time I was working witha wonderful company still a
wonderful company called Redux,and I was like I'll do this with
you If you, in exchange, yousay nice things about Redux.
(32:50):
Um, so she said, let's just seewhat happens.
And we spent about 20 hourstogether working on phonemes and
really my life had been tryingto hear better by osmosis and
then focusing on individualsongs and then lines of songs.
It took my conversation withher and the work she was doing
(33:10):
with jack Katz to say let's notwork on a line, let's work on a
ma-pa-ta.
And again I was like I'm at 67%open-aided speech recognition
with an implant.
And so researchers are tellingme they've never seen somebody
with an implant do that well.
So let's just be cautiouslyoptimistic here.
(33:31):
After about 20 hours of training.
I remember driving to work oneday and the line came on.
When I find myself in times oftrouble, mother Mary comforts me
, which was the line I had beensinging in my head the day
before we had been working on ta, ta, point to ta, say
toothpaste.
And that next morning, drivingto work, I heard my mother,
(33:54):
mother Mary, comes to me and Ihad not heard to me.
I had not heard the T in therein a decade and there's some
correlation, causation there.
But a day before we had beenworking on that individual sound
.
And so following 20 hours ofphoneme work, my open-aided
(34:15):
speech recognition testing after16 years went from 67% to 96%
and I did not do anythingdifferent other than working on,
I guess some still relativelynew concepts in how does your
brain hear stuff?
Dr. Douglas L. Beck (34:33):
Fantastic.
Matt Hay (34:34):
Versus.
How do your ears hear stuff?
So I owe a lot to a lot, youknow, like I said, the right
place right there.
There's never been a bettertime to be deaf.
Dr. Douglas L. Beck (34:43):
And you know all three of those women I
mean.
Angela is brilliant.
She's in Australia, so you'redoing courses with her online
right.
Carol Flexer, past president ofAAA, and she is a professor
emeritus at the Ohio StateUniversity.
Carol and I wrote a lot ofarticles together.
She is such a joy to work with.
She is so much fun and so smart.
(35:04):
And, of course, nina youmentioned Dr Nina Krause.
She's actually a biologist andshe is at Northwestern in
Chicago and her book came outabout two or three years ago
Also a brilliant book.
Anybody who hasn't read thatreally should.
But, matt, you've been sogenerous with your time.
I want to totally endorse thesoundtrack of Silence.
(35:25):
I read it.
I got teary every now and then.
It's a very deep story.
It's not just about auditorybrainstem implants or
neurofibromatosis.
It's about living with andliving through these situations
and managing them probablybetter than most people could
have.
And I'm just so proud of youand so thrilled with your
success.
I really want to encouragepeople to buy the book.
(35:46):
I just thought it was aspectacular read and it's a fun
read And'll.
Matt Hay (35:50):
It's a feel-good story because you, you just are
amazing well, I appreciate thebet, doug, and I will say I
would not be here if I didn'tknow you and the work you're
doing and, uh, the delfinos andthe work that they are doing.
You know, blaise delfino wasthe first person that ever said
to me I would like to see howreal ear measurement works and
(36:14):
to be able to observe the waythat his team and the best
practices that they follow andthe patient approach that.
These are the kind of peoplethat in my professional hearing
care journey, in my patientadvocacy journey, these are the
people that I want to work withand learn from and serve
patients alongside.
(36:34):
So, even though I'm not ahearing care professional, I'm
here because you guys are thepeople that I want to align with
.
Might be seem a little bitstrong, but you guys are doing
the work that I want to be apart of.
So thank you for doing that.
Dr. Douglas L. Beck (36:46):
I am so appreciative of that.
I couldn't agree with you moreBlaise Delfino is a powerhouse,
a very energetic, enthusiasticand intelligent young man, and,
yeah, he's wonderful.
Matt, thank you so much for allyou've done, for your advocacy
and for telling your story andfor writing an incredible book.
Matt Hay (37:05):
Well, thanks, Doug.
I hope other people enjoy it aswell.
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