May 18, 2025 • 74 mins
Daniel Waclawiw is an advocate for chronic pain awareness and the creator of HyperacusisHope, a YouTube channel dedicated to educating others and sharing his journey with hyperacusis — a condition causing severe sound sensitivity. Daniel’s story weaves together the challenges of navigating multiple chronic health conditions, growing up in the foster care system, and carving out a life grounded in hope, meaning, and self-improvement. In this conversation, we’ll explore the powerful lessons he’s learned through adversity and the compassion he shares with others through his advocacy.
Living with hyperacusis means that everyday sounds — from dishes clinking to traffic noise — can cause Daniel not just discomfort, but excruciating pain that lingers for hours or days. After his condition was triggered by an acoustic trauma, Daniel initially coped with cautious optimism, using protective gear and resting his ears. Over time, setbacks such as a severe vehicle accident made things worse, yet he found solace and strength in community and silence. Through HyperacusisHope, Daniel reminds others that while there may not be a cure, there is connection, purpose, and the power to endure. His message is simple but resonant: be kind to yourself, take life one day at a time, and stay connected to the world, even in small ways.
Daniel’s entry into foster care at age 14 marked a turning point in his life — one initiated by his own call to child protective services. While spared the worst horror stories of foster care, he faced challenges like overmedication and the emotional burden of preparing for adulthood without a strong support system. For Daniel, family has become a chosen concept, and trust is something still being rebuilt. Key figures like a long-term therapist and caring social workers helped him slowly develop self-love and resilience. He urges current foster youth to speak up, ask for help, and actively engage with available resources — a lesson he learned the hard way.
Self-improvement, for Daniel, isn’t about chasing perfection or productivity—it’s about listening to your inner rhythm and accepting where you are. Living with multiple chronic conditions has forced him to let go of external benchmarks and instead focus on authenticity, small victories, and self-compassion. While routines are difficult to maintain, he finds meaning in spiritual reflection, personal growth, and moments of connection. Over time, his definition of success has evolved from goal-setting to simply being present, recognizing that even the act of continuing on—especially through pain—is a profound form of growth.
Daniel Waclawiw’s story is a testament to human resilience in the face of relentless challenge. Through pain, loneliness, and adversity, he has built a life anchored in authenticity, service, and hope. Whether it’s by sharing his hyperacusis journey on YouTube or reflecting on his time in foster care, Daniel offers others not just awareness—but also permission to be vulnerable, imperfect, and alive. His journey reminds us that healing is nonlinear, success is personal, and meaning can be found in even the quietest, hardest days.
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Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
(00:00):
Yeah, dude, thank you so much for coming on.
It's Daniel Vaslaviv, everyone. And yeah.
So can you explain what hyperacusis is and how it
affects your daily life? I guess hyperacusis in a way is
a little bit of kind of a broad umbrella term in the sense that
(00:20):
it, it basically means that hearing condition where things
sound too loud. My particular form of
hyperacusis some people call anoxic uses, some people call it
pain hyperacusis. And basically what, what it
comes down to is sound causes physical pain.
(00:48):
And yeah, it's, it's one of those things where, you know,
sound is literally just everywhere.
And it's one of those things that I just never really gave a
second thought to until I got this condition.
(01:08):
And now simple things just like,you know, water running in a
sink or in a shower, a door closing, someone setting down a
glass. Even more subtle things like,
you know, bed sheets rubbing together or, you know, chewing
(01:35):
on something too hard can cause pain that lasts for anywhere
from minutes to days, depending on how intense of a sound it
was. And it's a pain that for me
radiates down my neck, shoulders, back ahead.
(01:57):
And basically it's just kind of made my life a lot smaller.
I used to travel a lot and now most of my life I pretty much am
stuck in my room. I can go downstairs to speak to
(02:17):
my friend slash landlord when we've arranged a time when she's
not going to be doing anything else.
But as you can imagine, you know, it's it's a balance
between how do I live my life and avoid debilitating pain?
(02:38):
Can you describe how this all came out to be?
My bad, man. That's all good.
All right, I was trying to turn the volume up a little bit and I
(02:58):
hit the wrong button anyways. Yeah, so basically I was, I was
just talking on the phone to my friend.
There was just this little pedestrian bridge that went over
some training tracks and I was just kind of walking back and
(03:22):
forth on it just because it was sort of aesthetically pleasing,
you know, it was just a nice little place to walk.
And at a certain point, you know, I see like, you know, I
hear and see the lights of like the an approaching train.
And actually I thought like, Oh,cool, you know, it was all just
(03:46):
very sort of like, you know, industrial aesthetic.
And there was actually an opportunity for a couple great
like a snapshots for me to take.So I actually even took pictures
with my phone. But what happened is as the
train got close, just the sound of the metal on the tracks.
It did. It didn't even like, you know,
(04:10):
do the the horn. It was just the the sound of the
the metal against the metal screeching caused this something
to just kind of flip in my brainand all of a sudden that sound
was just unbearable. The frequency was super loud and
all of a sudden my own voice started hurting me.
(04:37):
I figured I'd sleep it off. You know, I kept talking to my
friend. At a certain point I'm like,
man, I got to go, you know, this, this hurts.
And Long story short, I did not sleep it off.
And it, it kind of gradually worsened to, to kind of what it
(05:00):
is today. It's, it's a terrible condition,
Hey, and I've, I've experienced it myself and just every day is
agony. And for those of the people that
don't understand or they've never gone through it, it's like
this. It, it seems like you're crazy,
(05:20):
right? Because how can how can a sound
hurt a person when it's not to avolume like a gunshot, right?
Or you're like a lot of people are going through concerts or
when they're at the movies, thatthose sounds are enough to
proliferate someone to excruciating pain to just
(05:41):
catapult them in. Yeah.
Yeah. So when you first got this
right, did did you just think all this is like just a small
thing like this will go away eventually?
Or were you just highly anxious and thinking that the world was
going to end, that this is goingto be forever?
(06:02):
Well, I do just want to touch for a second on what you said
and I totally agree and I'm sorry that you had to go through
it. And I'm so happy that you've
gotten out because you know, that's that's the goal.
It's not just, you know, like it's not just like the sound is
(06:24):
annoying or like irritating. It's just, it's pain.
It's it's just like agonizing depending on the the frequency
and the volume. And so, yeah, that's something
that unless somebody really takes the time to inquire and
learn about it or listen, makes it kind of a very lonely
condition. So yeah, you're you're you're
(06:45):
very aptly described it as you know, I think agonizing is what
you said excruciating. And yeah, so when when I first
had the symptoms, I honestly wasn't really worried about it.
I was like, I'll sleep it off. And then I was like, yeah, you
(07:06):
know what, I'll give it like a week.
And usually it wasn't getting better.
You know, first videos is just my own voice that was bothering
me. And then it started being
outside sounds. I remember day four or five, I
took a shower and it was so incredibly loud and I went to
(07:28):
sleep in pain. And that's when I started kind
of researching. I went on Reddit, I went to the
hyperacusis subreddit. I found that I think I just
looked up sound is too loud, youknow, or something like that.
And somebody on there, basicallyit was like, you know, when you
(07:49):
sprain a muscle, like at first it doesn't hurt that bad and
then it hurts really bad the next couple days that says like
healing and then it like relaxes.
And I was like, solid, that makes sense.
And so I got earplugs because like when I go to the grocery
store, the, the shopping cart started being extremely jarring
(08:09):
and uncomfortable to, to listen to overhead speakers playing
music. That digital audio is just
killing me. So I just got a little loop
earplugs, 1 of it kept going about my life.
I was like, yeah, it'll heal, you know, a week, a month,
whatever. Like I've, I've dealt with
enough chronic health issues that I'm sort of just like, I
(08:35):
try not to make things more thanthey are because, you know, life
is, is stressful enough as it iswithout making it more than it
is, you know? So that's kind of, that was my
initial attitude and slowly, slowly over time, over about two
(08:56):
months, I would say I noticed maybe a couple percent
improvement every week. And I was like solid, you know,
and I've been dealing, like I said, with some other issues.
And so I haven't been working. So I, it hasn't, it wasn't
really a situation where there was like a particular urgency to
(09:19):
when I was going to heal. I was like a couple percent a
week. I'm like, I can deal with this,
you know, And then I had a very stressful dog sitting that
caused a flare in my, well, hyperacusis as well as some of
the other health issues I have. Fatigue can be one of the
(09:41):
symptoms of M cast mast cell activation syndrome.
And what ended up happening is Igot a solid 12 hours of sleep
after the dog sitting woke up the next day I'm like, I'm going
to go to 711, get an iced tea. It's a 5 minute drive.
On my way there I literally fainted and I my car veered into
(10:07):
the path of an oncoming semi truck.
I got hit 70 feet and I was physically, you know, had a
nasty bruise, had some sprains, but like I walked away from that
(10:27):
essentially unscathed. But the hyperacusis weirdly not
immediately. I think I was just so shaken up
and my body was probably full ofadrenaline and, and all that
stuff. But I noticed that over the next
couple weeks, my sound tolerancestarted really to decrease even.
(10:48):
And that's, I guess when I kind of really started realizing this
is not this might be here for a while.
Oh wow, and how long has it beensince the that time on the
railroad? I guess that would have been
what, July, it was like July 29th or something of last year.
(11:13):
So we're we're going on, I thinkwhat it's me nine months.
Nine months and you said it's kind of been progressively
getting worse. It's been very non linear and
you know, without getting into the the weeds too much, like
(11:39):
like when this first started, I didn't really have tinnitus and
now I have reactive tinnitus. And that's something that's
unfortunately been getting worsewhere I'll go outside in the
woods when, you know, there's a break from like the lawn mowing
or whatever. And I'll try to get like, you
know, a little walk in. But even just the breeze and the
(12:00):
birds and the sounds or even my own talking right now, ringing
in my ears is increasing. And.
And for the listeners that don'tknow what tinnitus is, what is
that? It's like, it's this, I mean, I
guess technically speaking, it'sit's sort of a, a neurologically
(12:23):
induced auditory hallucination. It's the, it's the sound of
ringing in the ears. That's how most people
experience it. And I read that somewhere about
17% of people experienced tinnitus to some degree.
But for many people, it's just very, very kind of low and
stable and just it's just kind of a fixture.
(12:46):
It doesn't really impact their life.
And I actually, I had a very lowlevel before.
But there's also other sounds, you know, it can be kind of like
squealing. That's my least favorite sound
that I get. It's like this break squealing.
(13:06):
And I've I've heard of people that get music.
There's people that get like like a grinding sounds, Morse
code, like all sorts of stuff. So I, I have several different
tones. I have got Jingle Bells, I got
brake squealing. So you know.
Wow, you don't you? Don't even need, no.
Need for Spotify anymore? Yeah.
(13:28):
Yeah, exactly. But yeah, no I of.
Course. Same way for me where it started
on my left ear after being at a party and being too close to the
speaker and then I felt it as soon as I left the party.
And then the next day I just my,the slamming my car door and
(13:51):
just shutting it was, I didn't know it at the time, but
apparently that's like 110 decibels because I eventually
got a decibel meter and I'm sureyou know, you know all this now,
I'm sure you've gone through allthe trouble to test the.
Decibel. Yeah, yeah.
For the the people that don't know, there's this app called
(14:12):
the decibel meter on your that you can get in your phone and it
just essentially tests the environment that is within that,
within sound and it can measure what it's like in the movies or
like a gunshot. But yeah, that's anything over
(14:33):
60 decibels though is where a person with hyperacusis can feel
or this is severe, a severe casethough, because a lot of people
have it maybe just at 90 decibels, but in a on a worst
case scenario, their own voice hurts, which is the voice is
around 60 decibels so. Yeah, yeah.
(14:57):
They say a conversation is like 60 to 70 decibels.
And so like I'm having to speak as quietly as I can and remind
myself to do so so that I don't get a pain, delayed pain.
So yeah. And how did your?
And just imagine how many thingsin our daily lives, doors
(15:17):
closing, you know, people putting down a glass, you know,
God forbid somebody drop something, you know, that's
like, there's a lot of things that are much louder than the
human voice that we encounter onthe day-to-day life and don't
even think about. That's why so many people have
tinnitus too. And for the majority of the
(15:39):
population, they just don't care.
They just kind of live their lives.
But then there's a there's a subset of the population that
hones in on it, and that's all they can think about.
And a lot of people view it as their peace being taken away
because a lot of people just can't stand that sound, right?
(15:59):
And then on top of that, usuallypeople with hyperaesis have
tinnitus. And so it's this like reminder
of the pain that you're going through.
And it's just endless. And it just, and everything we
do is with sound, right? You, you talk to your loved
ones, you hit the gym, you when you study, when you go to class,
(16:20):
when you're on your phone, it's everything.
And to have this placed on someone is just drastically
reducing their quality of life now.
How did it go when you told other people about it?
Your family and friends. Oh, I was, you know, I've, I'm,
(16:49):
I'm an introvert and I'm, I've been dealing with, with chronic
illness for a while, which is made sort of keeping up real
life relationships difficult forme.
So a lot of the people that I speak to, I speak like online,
(17:15):
phone, phone as well. And that's something that I have
to be a lot more intentional about.
It's like, OK, you know, I have a therapy appointment today, so
I can't schedule, you know, say,a podcast or do more of my
videos or even like, go for a walk or something.
And so it is something that's definitely impacted my social
(17:37):
relationships, making new ones. Like I have old friends, like I,
I'm Ukrainian and like, I love learning my language, you know,
my ancestral language. And so there's like a couple
people that I've been chatting with since I've gotten
(17:58):
hyperacusis that, you know, I'vementioned it and it hasn't
really impacted the relationship.
But at least where I am with it right now, it puts me in a
position where and I, and I try not to live in fear, you know,
(18:19):
because I think that human connection is just so important.
And as I get older and I've losta lot of material things in my
life, I realize how much those relationships that we have and
how much just the little things like, you know, the sunset, you
know, stuff like that are, are things that bring me real joy.
(18:47):
But like, for example, I'm, I'm staying with a friend right now.
She's, she's pretty supportive as far as, you know, landlords
go. I mean, like, she works from
home, but we've arranged things in a way where she asked what
kind of things were bothering me.
(19:08):
If she's doing anything that bothers me, like she slammed the
dishwasher the other day, you know, just let it roll shut
after she, you know, loaded it. And that was painful for me.
And I just told her. And she's like, thanks for
letting me know. And so thankfully, the people in
my life that I do, you know, speak on the phone with her or
(19:35):
meet in real life are understanding, but it takes a
toll just emotionally. I get fatigued.
You know, a person laughs too loud and like, I have to go from
(19:56):
speaking regularly to whispering.
And they have no idea why I started whispering.
They just think my, you know, ears are getting tired.
And I'm not going to say don't laugh again.
You know, it, it, it, it, it's sort of just creates this
difficult situation where I am putting myself in a vulnerable
position when I do spend time around other people.
(20:21):
Because unless they're living itand even everybody with
hypercusis is different, they don't know, they don't
understand that like them talking is OK, but and then if
they put a, a dish down at the same volume as their voice, that
that can just have me in like really bad pain.
(20:41):
And so I do feel in many ways cornered in my room.
I try to challenge that notion, go down, talk to my friend.
But about half the time I end upcoming back up here and nursing
my pain. And so it's, it's difficult, you
(21:04):
know, I, I guess I try not to think about it too much, but
yeah, it's, it's really hard. Yeah, I'm sorry to hear about
that, man. But it's great that you do have
people around you that do understand.
And it's great that you're part of the hyperacusis community to
put your story out there for, togive people hope, because what I
found around this community as well is we, we can get really
(21:28):
cynical. Hey, like I, I've read like the,
the subreddit can get really dark sometimes.
And it's really rare to come across a person like you within
the subreddit or like the the Facebook group where you are,
you know, putting yourself out there and you're actually, you
know, still driving meaning and value and connection and still
(21:50):
trying it. Hopes of a cure one day.
Yeah. I don't.
Know if you've been on discord? Either it gets it gets pretty.
I haven't. Even darker on there.
It's really for the best, yeah. Jeez, I know it's the same for
tinnitus too. I'd say they're even darker even
though it's not as bad. You know, I don't want to say
that the hyper akhesis community's problems are worse,
(22:12):
but still, you know, like it. Definitely the mindset you have
going into these things can can really, really be the difference
of OK, like are you, can you geta little bit better or can you
get dressed? Yeah, it's, it's a matter of are
you going to keep your head above water or are you going to
let it take you down? You know, like.
(22:34):
Because life happens man and it's like these things it is we
we can chastise ourselves and wecan go why me?
You know why with this conditionis my brain is it?
Is it this is it because of karma?
But at the end of the day, you're not alone, right?
And there is a solution to this.You just can't give up because I
(22:57):
think that's once you do, once you let your chronic illnesses,
the chronic pain define how who you are.
If you let that become you, right?
Like, yes, it is a part of you, but you need to actively try to
live right? Of course you're going to need
(23:17):
to have a little bit of a handicap in certain aspects of
life need to explain, but you can't just drop everything and
just be hermit, you know, because that's like the quickest
way to just have everything become a catastrophe.
(23:37):
So with through your YouTube channel.
And walking that line is, has been, has been a very difficult
one for me, to be honest, because I have not gone on for a
walk in a week, for example, right now.
(23:57):
And I know how important that exercise is.
You know, I'll pace around the room or whatever.
But I've also learned like there's some weeks where I can
go out three or four times. You learn to kind of listen to
your body. And I think it's like those
(24:19):
times when you are able to push it within reason, you know, like
there's some people that say, you know, I don't entirely
agree. Some people will will say that
any sound that's, you know, under 85 decibels can't hurt
(24:43):
your auditory system. And there are some people that
are like literally just go back to your everyday life.
And there's, there's some peoplenow that are wearing ear muffs
and ear plugs and hiding in literal like closets or
(25:03):
bathrooms, you know, because it went too fast.
There is on hyperacusiacentral.org is a
wonderful resource where people's stories are shared,
mostly the, the severe people. And there is an entire wall
dedicated, you know. Oh, I've read many of those
(25:24):
stories. But the people who who couldn't
keep going, you know that there's even people who've
who've taken their lives becausefor one reason or another, their
condition got out of hand. So we can it can get really bad.
I also don't believe, you know, because people get so polarized,
(25:48):
right? There's like this other side
that's like you have to avoid sound forever.
Any discomfort or pain whatsoever means that you're
getting worse. Like I feel really bad for the
people for whom that's the case.I found that I have a baseline
that I come back to if I get a really bad like I, I go out for
(26:14):
doctor's appointments and like to get a ride to the pharmacy.
That's about it. I am hoping and praying and
choosing to believe that my lifewill be able to get bigger.
So I'm all about kind of trusting your gut and kind of
(26:35):
like going with your body, you know?
Yeah, I feel that. I mean I I fully got better
honestly I think and and this isthis is from .2 where I was.
I want to hear more about how how you did it because that's.
Yeah. It's hell there.
There's no other. It's hell.
(26:56):
I've, I suffered with it for like 2, three years.
Yeah. And I was at a point where I
just, I couldn't go hang out with my friends anymore.
Like, I went to the gym, I wore earplugs to the gym.
I still had to work, but it was excruciating.
I was suffering every single dayat work.
And this is like construction. I was working at this sign
(27:18):
company and I was hammering and nails and I was on the forklift,
beep, beep, beep. I'd measure the sound, the
decibels, and it'd be like 100 decibels.
And my ear was right up against it.
And I went to the route of, OK, push through and just didn't
neglect the pain. This isn't hurting you
(27:38):
physically. And that one really fucked me
up. That one just made it worse.
Like for a SEC it made me better, but then I just it would
this be this constant battle of OK, I'm feeling better this day
and then this day be excruciating and back and forth
and then I went to it. Has this weird it almost takes
on this life of its own where it's this entity almost where
(28:01):
you have to kind of learn how much you can push it before
it'll start kind of like back atyou.
Yeah, and I've also gone the route of just overprotecting and
just like headphones everywhere and then earplugs, but the loop
earplugs. And I found that anytime there
(28:22):
was sound, it would make it worse.
And so I was just so lost because I had gone to see 3
audiologists and they said my, all my hearing is fine.
I'd got gone to see two EN TS. They said everything was fine.
General doctor said it was fine.I got an MRI, nothing, nothing
wrong with the structure. Everything was clear.
So what was going on? So then I'm I went on to Reddit
(28:45):
and I surfed and I, I just kept looking at the positive stories.
How did they do it? And there's this guy that
eventually just did it through just relaxation and just stop
viewing the the sound as so as so imminent.
Maybe I'll have to search it up on Reddit and send you the link.
But it was just, it was crazy that he, he and this is this guy
(29:09):
was describing his hyperacusis as severe, like he wasn't able
to to go out for Christmas and he was just like the wrapping
sheets were were too much for him.
And eventually by him calming himself down and tell him that
the the sound was going to be fine.
And I, I did this. I followed his advice and I
messaged him on Reddit. And it wasn't linear.
(29:31):
Like there was just a zigzag zigzag.
But eventually I did some more meditation.
I was at prayer in there. I did some, a lot of exercise, a
lot of healing. I, I protected my ears just
enough, but not too much, right?And I'd always constantly hear
the decibels. And I, I can't say this will
(29:52):
work for everyone because there's, there's no actual
science that this is just my personal account.
This is all anecdotal. I I can't say, hey, this will
like make you 100% better, but what it did, what did it for me
was just meditation and just self affirmation that everything
was going to be fine and just prayer, you know, and then lots
(30:14):
of sleep, a lot of good connection.
Just essentially do like going back to what you said is just do
what's good for you and keep following that.
And if it's the making it worse,maybe give it some time and if
it's getting really out of hand,maybe dropped a little bit, come
back to it. But it's just you hear all this
advice, just do the things that are making it better and discard
(30:36):
the things that don't. And it sounds so easy, but it's
all just feeling. What that is different for
everybody? Yeah, no, exactly.
So I can't say that my the way Igot better maybe the same for a
listener that's listening to it right now or for you.
But I am 100% sure that there isa cure for everyone.
Maybe I'm just being too optimistic, but I'm, I'm
(30:58):
positive that everyone out there, there is a solution for
them. And it, this gets a lot of hate
because a lot of like every timeI, I told people this and I've
posted, it always gets downloaded.
And there's people that that call me just like delusional and
say I'm going to make things worse for people.
But I think this is kind of goesIn Sync with the hyperacusis
(31:20):
Hope Channel that you have, right?
It's just you can't lose that hope because as soon as you lose
that hope, what's what's there to live for?
You know, like. Yeah.
You know, it's, it's one of those things where I can't speak
for anybody else because I, I'veonly had my own experience with
(31:40):
it. You know, I know there is a
there, there were a few things that I did that I knew was
probably out of my comfort zone earlier on.
One of them was just walking down a a road with rough asphalt
with cars going by. Even in double protection, I
(32:01):
wouldn't wear it inside. I knew it was going to be too
much for me. And to this day I still have
this brake squealing tinnitus. You know, that said, if I was
still as at a certain point, I had to sort of consciously be
(32:21):
like, you've had some bad experiences, but you can't allow
those experiences to stop you from trying again.
You know, you didn't trust your gut that time.
But the fact is like, I don't want to live my whole life
(32:43):
hiding from sound. It's, I mean, you, you really
cannot live a normal life like this.
And here's the way I look at it.There's some people that have
been severe, they've been severefor a long time.
(33:06):
I mean, I, I consider myself moderate to severe.
You know, it's a some people wouldn't even be able to do what
we're doing right now. Yeah, this is, this is a
privilege, right? It's a blessing.
It is. So I try to focus on those
things. And the way I look at it is even
if even if I don't heal or even if I don't fully heal, it's a
(33:34):
lot better to be hopeful and optimistic than it is to just
assume this is what the rest of your life is going to be like.
And regardless of where you are in your journey, I just think
it's so important to try to encourage others and make some
(34:00):
some sort of meaning of it. And that's kind of why I do my
channel, you know? And yeah, you know, I'm
optimistic. I'm also angry.
I have my days where I'm just like, you know, screw this.
Like, this is so painful, you know?
I remember last week I had to goto the pharmacy and I had to fix
some stuff. Ghost prescription.
(34:23):
I'm sure people have dealt with it before where they should have
something and they don't. And there was kids screaming and
I'm like, I really should just get out of here.
But I'm like, I'm broke. I paid money to get here.
I have to pay money to get back.I'm not going to.
I have to fix this, you know, and for like 3 days after that,
(34:43):
I was just laying in bed and my ears were just like, man, you
know, it was like more just kindof like, how can we get through
today until enough time has passed where I'll fall asleep,
you know? So I make no pretenses that I'm
like, you know, some seizure guru or that I'm always
(35:05):
optimistic. But I was like, you know, I
healed last time. I came back to baseline.
I'll probably come back to baseline again.
I'll be able to take that walk again.
You know, I might have to put itoff for another week, but I'll
be able to do it. And who knows?
Maybe that exposure reminded my brain like, yeah, there are
(35:28):
sounds that are louder than likebeing inside a room, you know?
And even though it hurt, then maybe I think it would be
foolish of me to go and do the same thing the next day.
But I think to make me to then be like, OK, that's it.
(35:48):
I'm never going to get in a car again.
I think if it heals, it's one ofthose things where like that's
where that's sort of been, I think the consensus from for
like the, I guess you could say kind of like the what's the
word? I'm looking for the people who
(36:14):
are even minded about it, you know that let yourself recover,
don't push too hard. But if you recover from
something, you can probably recover from it again.
And yeah, I know I'm just kind of going on because honestly, it
(36:36):
is one of those things where each day I'm kind of like
assessing, like, am I handling this the right way?
And I'm, I'm just following thatjourney as best as I can, you
know, and trying to encourage people to stay optimistic.
And in doing that is helping me accept what's happening and stay
optimistic myself. Yeah, if you think of the worst
(36:57):
case scenario that you've ever been in, chances are you
probably got over it. And if not, you survived the day
that you thought the world was going to end.
You survived that day. So maybe you could survive today
and the day after tomorrow and the day after tomorrow and
hoping just that things would get a little bit better, you
know? And then it's recognizing that
(37:18):
you have the strength in yourself to just keep on going.
It sounds really simple. And that's in within all
literature, right? They always tell us, yes, it
gets better. And you know what?
It does get better, you know, because a lot of people think
they get buried sometimes, right?
But a lot of time we're planted,you know, we grow to this person
(37:43):
that. Oh, yeah, sure.
We've gone through all these a myriad of things, but it's
helped us flourish, right? Because without the pain, how
would we be able to understand the happiness?
Do you hear that when it says recording in progress?
I do, yeah. Sweet.
I think they do. It's like a legal thing.
Right, so I can't just catch, Yeah, you know, without you
(38:04):
hearing it. Yeah.
Recording. Yeah, dude.
So through your YouTube channel,Hyper Accuses Hope.
What message do you most want toconvey to others dealing with
chronic pain? Well, the way I see it, being
(38:28):
hopeful is just the most practical thing to do, right?
It's when you're kind of forwardthinking.
It allows you to make goals and that gives you a reason to want
to, you know, keep fighting through.
(38:52):
And so, you know, that's kind ofthe the message that that I'm
I'm trying to put out there. And, you know, there there is
more research being done slowly but surely, you know, I mean,
it's a very grassroots effort. I mean, I want to thank you for,
you know, even doing a, a podcast on this because this is
(39:16):
how awareness happens, you know,one person at a time, 1
connection at a time. But you know, there, there are
people that are starting to lookinto this.
And hopefully over time, we'll have more standardized
treatments, especially for thosepeople who are very severe and
(39:39):
have not been able to recover. And so, yeah, you know, just, I
think it just makes the most sense, you know, to be hopeful.
So even if you can't find it within yourself emotionally,
just think about it pragmatically.
Like you know, being hopeful is gives you the the biggest chance
(40:09):
for for success. You mentioned you have a lot of
other chronic pains and illnesses.
Can you tell me about what that journey's been like and if you
don't mind sharing some of thoseillnesses?
Yeah, so I'm diagnosed with mastcell activation syndrome, which
(40:33):
is a Long story short. I'm like allergic to the world.
I'm sensitive to all food. It's just a matter of degree.
So there's a couple foods like beef that I can eat, you know,
sweet potato within reason that I have almost no reaction to
(40:57):
that I'm able to like sustain myself with.
But you know, gluten, dairy, legumes, nuts, fruits, all those
things I have like reactions to in addition to mold is a huge 1.
And I don't think people recognize how many buildings and
(41:18):
vehicles have mold. You know, it doesn't necessarily
have to be like this giant blackBLOB.
You know, it can, it can be, youknow, spores and the AC ducts
are in the carpet and stuff likethat.
Different detergents, colognes, personal care products, vehicle
exhaust, all these different things that have also made my
(41:41):
world smaller because it's hard for me to be in a lot of
buildings and it's hard for me to be around people who don't
understand the things that trigger me.
And the other big one I would say is the Ehlers Danlos
syndrome, which is a connective tissue disorder where
(42:03):
essentially you're, well, the type I have the hypermobile
Ehlers Danlos syndrome is where you're connective tissue and
joints are too bendy. And what that is ultimately
meant for me is that I have different chronic injuries.
I have chronic whiplash, like 50% neck mobility because
(42:28):
there's actually a hypermobilityin the structures that support
my neck. And so my muscles are trying to,
you know, make sure that there'sno internal damage.
And so for me, it's manifested as, you know, I sprained very
easily, but I also have a lot ofstiffness that really limits my
mobility because my body is trying to protect me.
(42:52):
Yeah, I, I feel comfortable sharing this.
You know, I, I was actually homeless for close to three
years after aging out of foster care, which I'm sure we'll talk
about, but fatigue with both of those diagnosis I mentioned is,
(43:13):
is a big symptom and me being able to support myself, I was
able to do so, but not doing so paying rent.
And so I was actually living outof a vehicle in order to make
ends meet and survive because unfortunately there's not too
(43:33):
many resources out there for people who have aged out of
foster care. So at a certain point I wasn't
able to, to, to make, I guess sort of the traditional
lifestyle work anymore. So that's been a big part of my
journey that actually ended whenI had that accident that I, I, I
(43:56):
don't know if I mentioned the accident, but the truck, I
believe I did, yeah. You did.
You did. And that's when that chapter
ended. You know, I, I finally have,
after couch surfing for a while,found a place that's a
relatively quiet that I'm, I'm doing my best to sort of just
recover from the burnout of it all, you know, So it's, it's
(44:17):
been, it's been a long journey, no doubt.
How has your experience growing up in foster care and shape your
view on family Family trust and support systems?
Yeah, so I know there's people that hear horror stories about
foster care and I'm, I'm super grateful that that has not been
(44:40):
a part of my life. One thing though, that you know,
it's, it's basically, you know, a system designed to help raise
you until you're old enough ostensibly, you know, to be able
to, you know, function on your own when your home situation is
(45:00):
is less than ideal. I actually called Child
Protective Services on my parents, which, I mean, I don't
have any statistics, but I had alot of guilt and conflict about
that for a long time. I don't think that's super
common. But, you know, looking back, I
(45:25):
made the decision I needed to make, you know, so I kind of had
the, I guess, typical experience, although it was
unfortunately emotionally abusive.
I believe my parents tried theirbest, you know, as I've gotten
older. But, you know, sometimes hurt
(45:46):
people hurt people, as they say.And these days, foster care
itself, you know, they didn't give me a whole lot of tools,
(46:07):
but I didn't, I just kind of like put pushed it all aside,
you know, like the, the whole looming thing of like, I'm going
to have to be independent eventually.
You know, they also, I wrote a paper about this in, in
Community College. They, they foster kids get 800%
more medication than the generalpopulation.
And really there's just a lack of resources for like really
(46:29):
proper, like trauma informed therapy and stuff like that.
And so, you know, they just throw a bunch of meds at you and
then, you know, wish you luck when thankfully, in my state,
it's a 21. So it was fairly uneventful.
But when I, when I left foster care, it really made me realize
(46:52):
how important to learn to ask for help.
And I really wish that that's something that it was a journey
I had to go through. But I really realize, I really
wish that I had been able to be vulnerable enough earlier on in
(47:17):
order to recognize that I was not at all prepared for, you
know, after all that trauma. I'm just trying to kind of catch
my breath. And next thing you know, you
know, two years fly by and I'm on my own, you know, And as far
as family goes, like family isn't necessarily the people who
(47:45):
your blood related to. It's the people who really are
are there for you in your time of need and allow you to be
yourself and encourage you to beyourself and encourage you to
succeed. You know, and there's, I have
(48:07):
people in my life who have good words for me, which I
appreciate. And a lot of people, that's all
they have to offer. And I've had other people at
different points in my journey that have, you know, given me a
home for, for some time. And, you know, those actions, I
mean, nobody owes me anything, but it means a lot.
(48:33):
And it's helped me heal to see that there are people, including
today, you know, who you know, it's not forever.
But right now, despite my unemployment, you know, I have a
place to stay. And somebody who actively, you
(48:54):
know, encourages me as best as they can and believes me, you
know, about the hyperacusis and does their best to accommodate
me. And without that human
connection, I wouldn't be here anymore.
I can tell you that much. There's been some angels along
(49:17):
the way for here. Yeah.
So with in regards to those key people or moments during your
time in foster care, can you elaborate on how that has helped
you build your resilience and ifyou don't mind recognizing
those, those people? One person was my my therapist.
(49:41):
You know, I was, excuse me, I was hooked up with a therapist
through a nonprofit for foster kids.
I've been seeing her for going on 12 years at this point.
We meet remotely and just havingsomebody be there that entire
(50:09):
time, just that presence of somebody who's always there
every week, no matter what. It's modeled to me something
that I really didn't get at home, you know, And it's
something that I'm learning to not seek external validation as
(50:33):
much. I'm human.
And so there's only so, so far that I can push that, you know,
and so I'm, I'm sort of in the process, though, of learning to
kind of give that love and validation and drive to myself.
And having, you know, my therapist has been instrumental,
(50:58):
my foster mom, you know, we still, we still talk, you know,
I guess I'm older now, so the dynamics a little different.
But, you know, it was not just about the money for her.
She really cared and she tried. And a social worker even, you
(51:21):
know, that I had through the IT was my case was contracted out
to a third party agency that the, the state was paying to
administer my, my case. But that social worker was
great, you know? I still had to go through my own
(51:44):
journey, you know, I do wish that there had been more trauma
informed therapy available and that I had understood more than
I needed it. But I think that's one of those
things that, you know, sometimeswe kind of just have to take our
own paths to, to find our way home, which I'm, I'm, I'm trying
(52:05):
to do, you know, and it's, it's,and I mean that quite literally,
you know, what is home, where ishome?
You know, I've, I've lived so many places ranging from a
couple months to a couple years.I'm 29 now, almost 30.
(52:26):
So, you know, it's been a while since I aged out.
Yeah. You mentioned that you had to
call the police and your own parents and this is at the age
of 14. Do you mind talking about that
or? No, I don't.
(52:50):
I guess like the, the, the nuts in the bolts of it is my father
and my mom just kind of went along with it was very
controlling to the point of it being just inappropriate, you
know. Like, were they, you know,
(53:11):
wanting you to stay home when you wanted to go outside?
Or did they just not? In a sense, yes, you know,
extremely strict. So for example, I'd go sneak out
and hang out with some friends, you know, and like, not even up
to anything. I was a nerd, man.
I was like getting like straightas, you know, but I listen to
(53:34):
Eminem, for example, and my father absolutely hated that.
You know, they're very strictly religious.
And, you know, I know plenty of really cool religious people.
But so it's not the religion. But I think my father kind of
hid behind the religion because in many ways he was afraid of
the world. And so by controlling my beliefs
(53:56):
and controlling me, I think that's how he was trying to find
sort of a sense of safety and security.
And I was just the type of person I was a free spirit, you
know, I mean, yeah, I, I did a couple dumb things, you know,
like, but I, I wasn't a bad kid.And I finally believe that.
Yeah, it's suffocating, man. And what was wrong with ass like
(54:19):
that, Right, Eminem? Like there was such a good song,
Why? Why wouldn't your dad vibe with
that? I don't know man.
It's it's just a certain my, it was kind of how I, I dealt with
my emotions of being so controlled because, you know,
(54:40):
I'd sneak out and then I'd tell them I went with my friends and
they're like, no, what did you really do?
You know, I was like, I was withmy friends.
They wouldn't believe me. So they'd like take my door off,
you know, And it just, it just spiraled into this thing where
they like, think I'm this monster when it's like I'm a kid
who listens to music with cuss words, you know, and then.
(55:01):
Like built up to you calling thecops on them?
How did? This So what?
What ultimately happened is I came out as gay, and my father,
at that point, total coincidence, According to him,
(55:21):
decides to send me to a Christian boarding school in
Texas for an indeterminate period of time.
And, you know, I talked to the missions person and they were
asking me all these intrusive questions about, you know, my
(55:42):
sexuality and all these things and.
What the fuck? That's.
My understanding was that, like,this place was meant to change
me and kind of crush who I was, you know, And I realized that
even if I didn't, like, physically kill myself like
(56:03):
that, that I'm just being real. Like, you know, I just felt like
I had nothing to lose. I felt like that place was going
to just crush my soul. And so ultimately, I decided it
was a place where, you know, youcan have, like, access with the
outside world. It was very much not something
that sounded like it would be good.
So I called CPS and they ultimately looked into it and
(56:29):
recognized that I needed some support.
You know, I needed some therapy,but I certainly did not need to
be sent to that place. In fact, they I'm super grateful
(56:50):
I wasn't because, you know, I have a feeling that the, that
place could have been very hurtful.
Hear stories about places like that.
You know, apparently my dad, he made the mistake of telling me
that he had hired a private jet with security guards and that
(57:13):
they were going to take me whether I wanted to or not.
You know, So he, it was this alllike, you know, bringing the big
guns show a force, you know, we'll show you who's boss.
And because he told me 3 days before I was due to go, I was
able to make that call. And then the court put an
(57:34):
injunction while they did the investigation.
So that's that's the story. And I'm sorry to hear you had to
go through that. And just, yeah, it's great that
you got separated from that because that could have been
fatal for you. And it's great that you've made
you'd had a life full of meaningand still carrying hope in your
(57:57):
heart. And even amidst all the chronic
pain and illnesses and the abusethat you've even endured, I
don't think I sense you feeling like a victim.
I I sense a person that's gone through a lot and still comes
out of it with a positive lens. And you're honest about it and
(58:20):
you do you recognize that there are the parts in your life.
There are days and weeks where you do become a little bit
gloomy, cynical, but still, moreoften than not, you still carry
the lens of half cup full instead of empty, which a lot of
people. It's so easy in this world to
(58:41):
be, you know, caught up in the muck, in the mire of just the
horrors of the world and just being rejected and having
chronic pain and illnesses and just that morphs our reality
into a very dark place. But it, it's, I'm, I'm happy to
(59:03):
hear that you're still trying and you're still going forward
and trying to live your life even with hyperacusis and being
a foster kid and being homeless for three years.
You said, wow. And what advice would you give
to young people currently in foster care who might be
(59:23):
struggling to find a sense of stability or purpose?
Yeah, to anybody in foster care and anybody who's even not in
foster care but is living in a situation where they don't feel
valued or that things aren't stable, I would just say look
(59:44):
for the people around you who are there to help you.
And this could be anything from somebody who could help you
escape a bad situation to your guidance counselor at school.
Make a plan, have goals. Because honestly, like I was
just mentally in this sort of survival mode thing.
(01:00:07):
Even in foster care, you know, there is so much like emotional
stuff that I just had never, like a sort of tenderness and
unconditional love that I think everybody really needs to thrive
that I had never gotten. And so I don't blame myself for
(01:00:31):
being in the survival mode, but make plans, prepare because life
is going to keep going whether you do or not.
And it's a lot better to whetherit's a business or because I
had, I had like a lawn care business at one point.
(01:00:53):
I had a pets in business. I wish I had sort of kept that
up instead of sort of allowing life to just go by having people
(01:01:21):
rescue me, you know, and I'm glad that there are people that
let me stay, but I could have used that time more wisely.
And so it's just believe that you're worth it.
I think that's how I would sum all that up and then start
making those plans because life is going to keep going either
(01:01:43):
way. Yeah, well, sad.
Like the sun is going to rise inthe East, set in the West every
single day. And whether you do the things
that make you feel whole and fulfilled or not this time,
still going to run forward. And you had mentioned that oh,
you, there's some regrets in your past.
I think you still made the best out of it though, because you
(01:02:05):
know what the resources that youhad at that time, you made the
best out of it and still look using that information, looking
back and still seeing kind of the silver lining and still
choosing to move forward. I think that's ultimately what's
made the difference, right? And thank you for sharing all
that. Now you you still have a lot of
(01:02:28):
meaning and drive for self improvement.
Living with chronic conditions, How have you found ways to
pursue self improvement without falling into burnout?
This is a super good question. And to be honest with you, I, I
(01:02:49):
don't know that I have, I'm verymuch, my life has been survival
mode, you know, for as long as Ican remember.
And so even though I know logically that like, you know,
I've been in this laying in thisbed to sleep for several months.
(01:03:13):
And I'm also going to be, I havethe next several months and
probably longer because my friend is a very caring person
who's really trying to help me out that I have this opportunity
here. My mind is still not feeling
like it's safe, you know, and soI'm learning to sort of just
(01:03:36):
calm down and be in the moment and realize the best I can do is
work with what I had of them. I just got denied for
disability, which means I'm going to have to find some sort
of online work. And I want to like, you know, I,
(01:03:57):
I did this one interview alreadyfor my channel.
I have like 3 more lined up and I was just so incredibly
overwhelmed. I was even nervous about this
one because I didn't know where where my head was at.
But you know, there's something about once you actually start
doing it, it's almost like the anticipation is worse than the
(01:04:19):
the actual action. Yeah, did.
The antidote to just anxious thought is action.
That's a great. Way to put it.
We think of all these things that could happen, that might
happen and it doesn't happen. It just goes smoothly a lot of
the time or even with excitement, we think that things
(01:04:40):
will be better than they are. And so they, they did a study
with, I think people they were, they asked college students to
measure their happiness from like getting ready to, to go out
and then having the, the actually attending the event and
(01:05:00):
then arriving back. And then they were asked at
which points they felt the happiest.
And usually it's the times when they were getting ready.
And this works well with us whenwe're suffering too.
And we're an actress thought is we suffer the most right before
it happens because during it, it's like, not that bad.
(01:05:22):
It's not that bad. Yeah, not not that good, but not
that bad, right? Yeah, Yeah, I guess it goes both
ways. What practices or mindsets that
have helped you find meaning even through the pain and
adversity? I wish I could say I had any
sort of like routine or practiceor anything, but to be honest,
I'm very much sort of a, you know, I have ADHD.
(01:05:48):
I'm very much diverse to routine, despite how it's
probably good for me. But with, with my health issues,
I got days where I can't, I don't get up till 5:00 PM, you
know, realistically, like I justtry to sort of take things a day
(01:06:16):
at a time, make the best of things.
And I am a spiritual person, youknow, I do believe there is a
sort of like method to the madness.
I wish there wasn't so much madness sometimes, you know, But
I just, I don't know. I just, I sort of have this sort
(01:06:37):
of faith and belief. I don't know exactly in what or
in who, but I, I sort of just, Itry to stay.
I just, I, I try to stay connected in, in every sense of
the word to people and to life. They could be as simple as just
(01:07:01):
looking out the window. Even if I can't make it outside
that day, you know, watching thedeer come.
I live right by the edge of the woods.
Very fortunate. Just because it's beautiful and
also because of the hyperacusis.I mean, you'd be amazed how many
ways people find ways to make sound.
(01:07:23):
But yeah, just just just stayingconnected and tapped into life,
you know, because I don't know about everybody.
I know there's, there's some people who are very good at just
and content with just kind of maintaining status quo.
(01:07:47):
I don't even want to call it being stagnant because for them,
maybe that's just there's N spot, you know?
But I know for me, I either haveto be moving towards life or I
start just kind of the voices from my past and the depression
and stuff kind of starts taking me over.
(01:08:07):
So I just I have to keep moving.I really don't have much of A
choice and it's exhausting sometimes.
And I got to tell myself it's OKto kind of take a break.
A break or even a backslide isn't doesn't necessarily mean,
you know, it's the end of the world.
It just means that you need a break.
Yeah. What does success or growth look
(01:08:29):
like to you now compared to earlier stages in your life?
Well, at this point, when I was younger, you know, I, I had this
idea that, you know, and I know I have a lot of potential.
And the fact is like I'm trying to embrace the unknown and with
(01:08:55):
excitement. You know what, what is saying
yes to the people asking me to be on podcast.
I think this is my 3rd or 4th like podcast appearance, right?
So like, that's, that's pretty cool.
(01:09:16):
And it's actually like, it's, it's led to like people knowing
me and some cool like connections, conversations and
even some help when I least expected it.
So, so if I just keep this momentum going, you know, who
knows what'll happen? So I guess my whole thing is
(01:09:39):
like, who knows, maybe I will dosomething big, but I'm, I'm, I'm
not, that's not the goal anymore.
I've realized life is, there's only one destination, right?
It's, it's the journey. The journey is the destination.
That's kind of, that's kind of the, the understanding that I've
come to. And I don't know, for me, it's
(01:10:00):
all about the inner journey. I don't try to compare myself to
other people. I and the only person I'm
competing with is myself, you know?
And there's no way to win or lose that.
I, yeah, I did. I, I appreciate you and thank
(01:10:21):
you so much for coming in the LONG term podcast, bro.
It's been a pleasure to hear about your stories of the trials
and tribulations. And still you stand strong,
right? Despite the chaos that has, you
know, run rampant, it seems likeyou still find the silver
(01:10:44):
lighting and you still try to bethankful.
And you're filled with gratitude.
And it's great what you're doing, spreading the story out
there and being so open. It's it's really brave, it's
courageous. And you're changing a lot.
Of the kind words. And I appreciate the opportunity
to connect with you and to shareall this.
(01:11:08):
And yeah, I mean, like just justgiving a voice to hyperacusis
and also just to to share my story.
And you know, if it, if it touches just one person, you
know, you know, we, we, we did something right.
Yeah, bro, there's one person listening to this, at least one.
You know, it's, I mean, maybe itmight be just my mom, but you
(01:11:30):
know, at least one person, whether they take some positive
away from this. Yeah, if y'all have made it to
this point, y'all are rock stars.
Yeah, I know exactly who like who has the attention span these
days? Hey, with all the tik toks and
the reels, I'll I'll make a bunch of clips for this too.
So no worries for the people that that can't stand an hour
(01:11:51):
conversation then clips will do.I may be a little guilty of that
myself sometimes. Me too dude.
I spent a couple hours scrollingyesterday man, it was really
bad. I'm, I'm not proud of myself for
that, but hey, you know where we're not perfect?
Nobody's perfect. Yeah, dude.
And I love what you're doing, man.
(01:12:11):
Like, you know, you're, we are two people coming together to
make this podcast, but you know,you're the one that that made it
happen. And it's just great that you're
sharing people's stories. And I wish you a lot of success
(01:12:32):
as well, you know, moving forward.
And who knows, maybe, maybe we'll do like a reunion or
someone of these days. Oh.
Bro yeah, we're we're connected now we're I know your YouTube
and then that's Hyperacusus hoperight for everybody that.
Was hyperacusis hope? It's pretty much the probably
(01:12:57):
Vegas hypercuses channel out there and they're, I mean,
that's it didn't take much to get there, but if you search it,
you can find it. You know, it's very niche and
I'm just I'm so I'm so I'm so touched that people have been
finding those videos meaningful and that, you know, it's making
(01:13:20):
a difference because on my worstday, I can be like, hey,
somebody just left me a comment.Thank you so much Keep going.
You know, this, this helps me not feel so alone and I'm like,
like, it makes me cry sometime. You know, it's like it, it
really it makes a difference. Still working on the image for
(01:13:41):
it. It's this AI generated ear in
like cupped. Hands.
A little bit of kind of like dismembered ear vibes, but I
haven't been able to come up with anything better yet.
But yeah, hyperacusive hope on YouTube.
Yeah, people that just see that they don't know anything about
hyperacusis be like, is this like an ear amputee sword?
(01:14:02):
Yeah, exactly. And then I also am going to plug
the Canary Uncaged, which is a channel where it's kind of a
fallen by the wayside where I kind of followed more of my
chronic illness journey and my car living journey.
And so if anybody wants to learna little bit more about that,
(01:14:26):
that's on there as well. Sweet, sweet man and as always
to everyone listening and watching, there is a place for
you in this chaotic world. Never lose hope, strengthen your
faith and keep up long term. Daniel Vaclavive everyone peace.
And then yeah, man, that's that's it.
Yeah, dude, thank you so much for coming on.
It's Daniel Vaslaviv, everyone. And yeah.
So can you explain what hyperacusis is and how it
affects your daily life? I guess hyperacusis in a way is
a little bit of kind of a broad umbrella term in the sense that
(00:20):
it, it basically means that hearing condition where things
sound too loud. My particular form of
hyperacusis some people call anoxic uses, some people call it
pain hyperacusis. And basically what, what it
comes down to is sound causes physical pain.
(00:48):
And yeah, it's, it's one of those things where, you know,
sound is literally just everywhere.
And it's one of those things that I just never really gave a
second thought to until I got this condition.
(01:08):
And now simple things just like,you know, water running in a
sink or in a shower, a door closing, someone setting down a
glass. Even more subtle things like,
you know, bed sheets rubbing together or, you know, chewing
(01:35):
on something too hard can cause pain that lasts for anywhere
from minutes to days, depending on how intense of a sound it
was. And it's a pain that for me
radiates down my neck, shoulders, back ahead.
(01:57):
And basically it's just kind of made my life a lot smaller.
I used to travel a lot and now most of my life I pretty much am
stuck in my room. I can go downstairs to speak to
(02:17):
my friend slash landlord when we've arranged a time when she's
not going to be doing anything else.
But as you can imagine, you know, it's it's a balance
between how do I live my life and avoid debilitating pain?
(02:38):
Can you describe how this all came out to be?
My bad, man. That's all good.
All right, I was trying to turn the volume up a little bit and I
(02:58):
hit the wrong button anyways. Yeah, so basically I was, I was
just talking on the phone to my friend.
There was just this little pedestrian bridge that went over
some training tracks and I was just kind of walking back and
(03:22):
forth on it just because it was sort of aesthetically pleasing,
you know, it was just a nice little place to walk.
And at a certain point, you know, I see like, you know, I
hear and see the lights of like the an approaching train.
And actually I thought like, Oh,cool, you know, it was all just
(03:46):
very sort of like, you know, industrial aesthetic.
And there was actually an opportunity for a couple great
like a snapshots for me to take.So I actually even took pictures
with my phone. But what happened is as the
train got close, just the sound of the metal on the tracks.
It did. It didn't even like, you know,
(04:10):
do the the horn. It was just the the sound of the
the metal against the metal screeching caused this something
to just kind of flip in my brainand all of a sudden that sound
was just unbearable. The frequency was super loud and
all of a sudden my own voice started hurting me.
(04:37):
I figured I'd sleep it off. You know, I kept talking to my
friend. At a certain point I'm like,
man, I got to go, you know, this, this hurts.
And Long story short, I did not sleep it off.
And it, it kind of gradually worsened to, to kind of what it
(05:00):
is today. It's, it's a terrible condition,
Hey, and I've, I've experienced it myself and just every day is
agony. And for those of the people that
don't understand or they've never gone through it, it's like
this. It, it seems like you're crazy,
(05:20):
right? Because how can how can a sound
hurt a person when it's not to avolume like a gunshot, right?
Or you're like a lot of people are going through concerts or
when they're at the movies, thatthose sounds are enough to
proliferate someone to excruciating pain to just
(05:41):
catapult them in. Yeah.
Yeah. So when you first got this
right, did did you just think all this is like just a small
thing like this will go away eventually?
Or were you just highly anxious and thinking that the world was
going to end, that this is goingto be forever?
(06:02):
Well, I do just want to touch for a second on what you said
and I totally agree and I'm sorry that you had to go through
it. And I'm so happy that you've
gotten out because you know, that's that's the goal.
It's not just, you know, like it's not just like the sound is
(06:24):
annoying or like irritating. It's just, it's pain.
It's it's just like agonizing depending on the the frequency
and the volume. And so, yeah, that's something
that unless somebody really takes the time to inquire and
learn about it or listen, makes it kind of a very lonely
condition. So yeah, you're you're you're
(06:45):
very aptly described it as you know, I think agonizing is what
you said excruciating. And yeah, so when when I first
had the symptoms, I honestly wasn't really worried about it.
I was like, I'll sleep it off. And then I was like, yeah, you
(07:06):
know what, I'll give it like a week.
And usually it wasn't getting better.
You know, first videos is just my own voice that was bothering
me. And then it started being
outside sounds. I remember day four or five, I
took a shower and it was so incredibly loud and I went to
(07:28):
sleep in pain. And that's when I started kind
of researching. I went on Reddit, I went to the
hyperacusis subreddit. I found that I think I just
looked up sound is too loud, youknow, or something like that.
And somebody on there, basicallyit was like, you know, when you
(07:49):
sprain a muscle, like at first it doesn't hurt that bad and
then it hurts really bad the next couple days that says like
healing and then it like relaxes.
And I was like, solid, that makes sense.
And so I got earplugs because like when I go to the grocery
store, the, the shopping cart started being extremely jarring
(08:09):
and uncomfortable to, to listen to overhead speakers playing
music. That digital audio is just
killing me. So I just got a little loop
earplugs, 1 of it kept going about my life.
I was like, yeah, it'll heal, you know, a week, a month,
whatever. Like I've, I've dealt with
enough chronic health issues that I'm sort of just like, I
(08:35):
try not to make things more thanthey are because, you know, life
is, is stressful enough as it iswithout making it more than it
is, you know? So that's kind of, that was my
initial attitude and slowly, slowly over time, over about two
(08:56):
months, I would say I noticed maybe a couple percent
improvement every week. And I was like solid, you know,
and I've been dealing, like I said, with some other issues.
And so I haven't been working. So I, it hasn't, it wasn't
really a situation where there was like a particular urgency to
(09:19):
when I was going to heal. I was like a couple percent a
week. I'm like, I can deal with this,
you know, And then I had a very stressful dog sitting that
caused a flare in my, well, hyperacusis as well as some of
the other health issues I have. Fatigue can be one of the
(09:41):
symptoms of M cast mast cell activation syndrome.
And what ended up happening is Igot a solid 12 hours of sleep
after the dog sitting woke up the next day I'm like, I'm going
to go to 711, get an iced tea. It's a 5 minute drive.
On my way there I literally fainted and I my car veered into
(10:07):
the path of an oncoming semi truck.
I got hit 70 feet and I was physically, you know, had a
nasty bruise, had some sprains, but like I walked away from that
(10:27):
essentially unscathed. But the hyperacusis weirdly not
immediately. I think I was just so shaken up
and my body was probably full ofadrenaline and, and all that
stuff. But I noticed that over the next
couple weeks, my sound tolerancestarted really to decrease even.
(10:48):
And that's, I guess when I kind of really started realizing this
is not this might be here for a while.
Oh wow, and how long has it beensince the that time on the
railroad? I guess that would have been
what, July, it was like July 29th or something of last year.
(11:13):
So we're we're going on, I thinkwhat it's me nine months.
Nine months and you said it's kind of been progressively
getting worse. It's been very non linear and
you know, without getting into the the weeds too much, like
(11:39):
like when this first started, I didn't really have tinnitus and
now I have reactive tinnitus. And that's something that's
unfortunately been getting worsewhere I'll go outside in the
woods when, you know, there's a break from like the lawn mowing
or whatever. And I'll try to get like, you
know, a little walk in. But even just the breeze and the
(12:00):
birds and the sounds or even my own talking right now, ringing
in my ears is increasing. And.
And for the listeners that don'tknow what tinnitus is, what is
that? It's like, it's this, I mean, I
guess technically speaking, it'sit's sort of a, a neurologically
(12:23):
induced auditory hallucination. It's the, it's the sound of
ringing in the ears. That's how most people
experience it. And I read that somewhere about
17% of people experienced tinnitus to some degree.
But for many people, it's just very, very kind of low and
stable and just it's just kind of a fixture.
(12:46):
It doesn't really impact their life.
And I actually, I had a very lowlevel before.
But there's also other sounds, you know, it can be kind of like
squealing. That's my least favorite sound
that I get. It's like this break squealing.
(13:06):
And I've I've heard of people that get music.
There's people that get like like a grinding sounds, Morse
code, like all sorts of stuff. So I, I have several different
tones. I have got Jingle Bells, I got
brake squealing. So you know.
Wow, you don't you? Don't even need, no.
Need for Spotify anymore? Yeah.
(13:28):
Yeah, exactly. But yeah, no I of.
Course. Same way for me where it started
on my left ear after being at a party and being too close to the
speaker and then I felt it as soon as I left the party.
And then the next day I just my,the slamming my car door and
(13:51):
just shutting it was, I didn't know it at the time, but
apparently that's like 110 decibels because I eventually
got a decibel meter and I'm sureyou know, you know all this now,
I'm sure you've gone through allthe trouble to test the.
Decibel. Yeah, yeah.
For the the people that don't know, there's this app called
(14:12):
the decibel meter on your that you can get in your phone and it
just essentially tests the environment that is within that,
within sound and it can measure what it's like in the movies or
like a gunshot. But yeah, that's anything over
(14:33):
60 decibels though is where a person with hyperacusis can feel
or this is severe, a severe casethough, because a lot of people
have it maybe just at 90 decibels, but in a on a worst
case scenario, their own voice hurts, which is the voice is
around 60 decibels so. Yeah, yeah.
(14:57):
They say a conversation is like 60 to 70 decibels.
And so like I'm having to speak as quietly as I can and remind
myself to do so so that I don't get a pain, delayed pain.
So yeah. And how did your?
And just imagine how many thingsin our daily lives, doors
(15:17):
closing, you know, people putting down a glass, you know,
God forbid somebody drop something, you know, that's
like, there's a lot of things that are much louder than the
human voice that we encounter onthe day-to-day life and don't
even think about. That's why so many people have
tinnitus too. And for the majority of the
(15:39):
population, they just don't care.
They just kind of live their lives.
But then there's a there's a subset of the population that
hones in on it, and that's all they can think about.
And a lot of people view it as their peace being taken away
because a lot of people just can't stand that sound, right?
(15:59):
And then on top of that, usuallypeople with hyperaesis have
tinnitus. And so it's this like reminder
of the pain that you're going through.
And it's just endless. And it just, and everything we
do is with sound, right? You, you talk to your loved
ones, you hit the gym, you when you study, when you go to class,
(16:20):
when you're on your phone, it's everything.
And to have this placed on someone is just drastically
reducing their quality of life now.
How did it go when you told other people about it?
Your family and friends. Oh, I was, you know, I've, I'm,
(16:49):
I'm an introvert and I'm, I've been dealing with, with chronic
illness for a while, which is made sort of keeping up real
life relationships difficult forme.
So a lot of the people that I speak to, I speak like online,
(17:15):
phone, phone as well. And that's something that I have
to be a lot more intentional about.
It's like, OK, you know, I have a therapy appointment today, so
I can't schedule, you know, say,a podcast or do more of my
videos or even like, go for a walk or something.
And so it is something that's definitely impacted my social
(17:37):
relationships, making new ones. Like I have old friends, like I,
I'm Ukrainian and like, I love learning my language, you know,
my ancestral language. And so there's like a couple
people that I've been chatting with since I've gotten
(17:58):
hyperacusis that, you know, I'vementioned it and it hasn't
really impacted the relationship.
But at least where I am with it right now, it puts me in a
position where and I, and I try not to live in fear, you know,
(18:19):
because I think that human connection is just so important.
And as I get older and I've losta lot of material things in my
life, I realize how much those relationships that we have and
how much just the little things like, you know, the sunset, you
know, stuff like that are, are things that bring me real joy.
(18:47):
But like, for example, I'm, I'm staying with a friend right now.
She's, she's pretty supportive as far as, you know, landlords
go. I mean, like, she works from
home, but we've arranged things in a way where she asked what
kind of things were bothering me.
(19:08):
If she's doing anything that bothers me, like she slammed the
dishwasher the other day, you know, just let it roll shut
after she, you know, loaded it. And that was painful for me.
And I just told her. And she's like, thanks for
letting me know. And so thankfully, the people in
my life that I do, you know, speak on the phone with her or
(19:35):
meet in real life are understanding, but it takes a
toll just emotionally. I get fatigued.
You know, a person laughs too loud and like, I have to go from
(19:56):
speaking regularly to whispering.
And they have no idea why I started whispering.
They just think my, you know, ears are getting tired.
And I'm not going to say don't laugh again.
You know, it, it, it, it, it's sort of just creates this
difficult situation where I am putting myself in a vulnerable
position when I do spend time around other people.
(20:21):
Because unless they're living itand even everybody with
hypercusis is different, they don't know, they don't
understand that like them talking is OK, but and then if
they put a, a dish down at the same volume as their voice, that
that can just have me in like really bad pain.
(20:41):
And so I do feel in many ways cornered in my room.
I try to challenge that notion, go down, talk to my friend.
But about half the time I end upcoming back up here and nursing
my pain. And so it's, it's difficult, you
(21:04):
know, I, I guess I try not to think about it too much, but
yeah, it's, it's really hard. Yeah, I'm sorry to hear about
that, man. But it's great that you do have
people around you that do understand.
And it's great that you're part of the hyperacusis community to
put your story out there for, togive people hope, because what I
found around this community as well is we, we can get really
(21:28):
cynical. Hey, like I, I've read like the,
the subreddit can get really dark sometimes.
And it's really rare to come across a person like you within
the subreddit or like the the Facebook group where you are,
you know, putting yourself out there and you're actually, you
know, still driving meaning and value and connection and still
(21:50):
trying it. Hopes of a cure one day.
Yeah. I don't.
Know if you've been on discord? Either it gets it gets pretty.
I haven't. Even darker on there.
It's really for the best, yeah. Jeez, I know it's the same for
tinnitus too. I'd say they're even darker even
though it's not as bad. You know, I don't want to say
that the hyper akhesis community's problems are worse,
(22:12):
but still, you know, like it. Definitely the mindset you have
going into these things can can really, really be the difference
of OK, like are you, can you geta little bit better or can you
get dressed? Yeah, it's, it's a matter of are
you going to keep your head above water or are you going to
let it take you down? You know, like.
(22:34):
Because life happens man and it's like these things it is we
we can chastise ourselves and wecan go why me?
You know why with this conditionis my brain is it?
Is it this is it because of karma?
But at the end of the day, you're not alone, right?
And there is a solution to this.You just can't give up because I
(22:57):
think that's once you do, once you let your chronic illnesses,
the chronic pain define how who you are.
If you let that become you, right?
Like, yes, it is a part of you, but you need to actively try to
live right? Of course you're going to need
(23:17):
to have a little bit of a handicap in certain aspects of
life need to explain, but you can't just drop everything and
just be hermit, you know, because that's like the quickest
way to just have everything become a catastrophe.
(23:37):
So with through your YouTube channel.
And walking that line is, has been, has been a very difficult
one for me, to be honest, because I have not gone on for a
walk in a week, for example, right now.
(23:57):
And I know how important that exercise is.
You know, I'll pace around the room or whatever.
But I've also learned like there's some weeks where I can
go out three or four times. You learn to kind of listen to
your body. And I think it's like those
(24:19):
times when you are able to push it within reason, you know, like
there's some people that say, you know, I don't entirely
agree. Some people will will say that
any sound that's, you know, under 85 decibels can't hurt
(24:43):
your auditory system. And there are some people that
are like literally just go back to your everyday life.
And there's, there's some peoplenow that are wearing ear muffs
and ear plugs and hiding in literal like closets or
(25:03):
bathrooms, you know, because it went too fast.
There is on hyperacusiacentral.org is a
wonderful resource where people's stories are shared,
mostly the, the severe people. And there is an entire wall
dedicated, you know. Oh, I've read many of those
(25:24):
stories. But the people who who couldn't
keep going, you know that there's even people who've
who've taken their lives becausefor one reason or another, their
condition got out of hand. So we can it can get really bad.
I also don't believe, you know, because people get so polarized,
(25:48):
right? There's like this other side
that's like you have to avoid sound forever.
Any discomfort or pain whatsoever means that you're
getting worse. Like I feel really bad for the
people for whom that's the case.I found that I have a baseline
that I come back to if I get a really bad like I, I go out for
(26:14):
doctor's appointments and like to get a ride to the pharmacy.
That's about it. I am hoping and praying and
choosing to believe that my lifewill be able to get bigger.
So I'm all about kind of trusting your gut and kind of
(26:35):
like going with your body, you know?
Yeah, I feel that. I mean I I fully got better
honestly I think and and this isthis is from .2 where I was.
I want to hear more about how how you did it because that's.
Yeah. It's hell there.
There's no other. It's hell.
(26:56):
I've, I suffered with it for like 2, three years.
Yeah. And I was at a point where I
just, I couldn't go hang out with my friends anymore.
Like, I went to the gym, I wore earplugs to the gym.
I still had to work, but it was excruciating.
I was suffering every single dayat work.
And this is like construction. I was working at this sign
(27:18):
company and I was hammering and nails and I was on the forklift,
beep, beep, beep. I'd measure the sound, the
decibels, and it'd be like 100 decibels.
And my ear was right up against it.
And I went to the route of, OK, push through and just didn't
neglect the pain. This isn't hurting you
(27:38):
physically. And that one really fucked me
up. That one just made it worse.
Like for a SEC it made me better, but then I just it would
this be this constant battle of OK, I'm feeling better this day
and then this day be excruciating and back and forth
and then I went to it. Has this weird it almost takes
on this life of its own where it's this entity almost where
(28:01):
you have to kind of learn how much you can push it before
it'll start kind of like back atyou.
Yeah, and I've also gone the route of just overprotecting and
just like headphones everywhere and then earplugs, but the loop
earplugs. And I found that anytime there
(28:22):
was sound, it would make it worse.
And so I was just so lost because I had gone to see 3
audiologists and they said my, all my hearing is fine.
I'd got gone to see two EN TS. They said everything was fine.
General doctor said it was fine.I got an MRI, nothing, nothing
wrong with the structure. Everything was clear.
So what was going on? So then I'm I went on to Reddit
(28:45):
and I surfed and I, I just kept looking at the positive stories.
How did they do it? And there's this guy that
eventually just did it through just relaxation and just stop
viewing the the sound as so as so imminent.
Maybe I'll have to search it up on Reddit and send you the link.
But it was just, it was crazy that he, he and this is this guy
(29:09):
was describing his hyperacusis as severe, like he wasn't able
to to go out for Christmas and he was just like the wrapping
sheets were were too much for him.
And eventually by him calming himself down and tell him that
the the sound was going to be fine.
And I, I did this. I followed his advice and I
messaged him on Reddit. And it wasn't linear.
(29:31):
Like there was just a zigzag zigzag.
But eventually I did some more meditation.
I was at prayer in there. I did some, a lot of exercise, a
lot of healing. I, I protected my ears just
enough, but not too much, right?And I'd always constantly hear
the decibels. And I, I can't say this will
(29:52):
work for everyone because there's, there's no actual
science that this is just my personal account.
This is all anecdotal. I I can't say, hey, this will
like make you 100% better, but what it did, what did it for me
was just meditation and just self affirmation that everything
was going to be fine and just prayer, you know, and then lots
(30:14):
of sleep, a lot of good connection.
Just essentially do like going back to what you said is just do
what's good for you and keep following that.
And if it's the making it worse,maybe give it some time and if
it's getting really out of hand,maybe dropped a little bit, come
back to it. But it's just you hear all this
advice, just do the things that are making it better and discard
(30:36):
the things that don't. And it sounds so easy, but it's
all just feeling. What that is different for
everybody? Yeah, no, exactly.
So I can't say that my the way Igot better maybe the same for a
listener that's listening to it right now or for you.
But I am 100% sure that there isa cure for everyone.
Maybe I'm just being too optimistic, but I'm, I'm
(30:58):
positive that everyone out there, there is a solution for
them. And it, this gets a lot of hate
because a lot of like every timeI, I told people this and I've
posted, it always gets downloaded.
And there's people that that call me just like delusional and
say I'm going to make things worse for people.
But I think this is kind of goesIn Sync with the hyperacusis
(31:20):
Hope Channel that you have, right?
It's just you can't lose that hope because as soon as you lose
that hope, what's what's there to live for?
You know, like. Yeah.
You know, it's, it's one of those things where I can't speak
for anybody else because I, I'veonly had my own experience with
(31:40):
it. You know, I know there is a
there, there were a few things that I did that I knew was
probably out of my comfort zone earlier on.
One of them was just walking down a a road with rough asphalt
with cars going by. Even in double protection, I
(32:01):
wouldn't wear it inside. I knew it was going to be too
much for me. And to this day I still have
this brake squealing tinnitus. You know, that said, if I was
still as at a certain point, I had to sort of consciously be
(32:21):
like, you've had some bad experiences, but you can't allow
those experiences to stop you from trying again.
You know, you didn't trust your gut that time.
But the fact is like, I don't want to live my whole life
(32:43):
hiding from sound. It's, I mean, you, you really
cannot live a normal life like this.
And here's the way I look at it.There's some people that have
been severe, they've been severefor a long time.
(33:06):
I mean, I, I consider myself moderate to severe.
You know, it's a some people wouldn't even be able to do what
we're doing right now. Yeah, this is, this is a
privilege, right? It's a blessing.
It is. So I try to focus on those
things. And the way I look at it is even
if even if I don't heal or even if I don't fully heal, it's a
(33:34):
lot better to be hopeful and optimistic than it is to just
assume this is what the rest of your life is going to be like.
And regardless of where you are in your journey, I just think
it's so important to try to encourage others and make some
(34:00):
some sort of meaning of it. And that's kind of why I do my
channel, you know? And yeah, you know, I'm
optimistic. I'm also angry.
I have my days where I'm just like, you know, screw this.
Like, this is so painful, you know?
I remember last week I had to goto the pharmacy and I had to fix
some stuff. Ghost prescription.
(34:23):
I'm sure people have dealt with it before where they should have
something and they don't. And there was kids screaming and
I'm like, I really should just get out of here.
But I'm like, I'm broke. I paid money to get here.
I have to pay money to get back.I'm not going to.
I have to fix this, you know, and for like 3 days after that,
(34:43):
I was just laying in bed and my ears were just like, man, you
know, it was like more just kindof like, how can we get through
today until enough time has passed where I'll fall asleep,
you know? So I make no pretenses that I'm
like, you know, some seizure guru or that I'm always
(35:05):
optimistic. But I was like, you know, I
healed last time. I came back to baseline.
I'll probably come back to baseline again.
I'll be able to take that walk again.
You know, I might have to put itoff for another week, but I'll
be able to do it. And who knows?
Maybe that exposure reminded my brain like, yeah, there are
(35:28):
sounds that are louder than likebeing inside a room, you know?
And even though it hurt, then maybe I think it would be
foolish of me to go and do the same thing the next day.
But I think to make me to then be like, OK, that's it.
(35:48):
I'm never going to get in a car again.
I think if it heals, it's one ofthose things where like that's
where that's sort of been, I think the consensus from for
like the, I guess you could say kind of like the what's the
word? I'm looking for the people who
(36:14):
are even minded about it, you know that let yourself recover,
don't push too hard. But if you recover from
something, you can probably recover from it again.
And yeah, I know I'm just kind of going on because honestly, it
(36:36):
is one of those things where each day I'm kind of like
assessing, like, am I handling this the right way?
And I'm, I'm just following thatjourney as best as I can, you
know, and trying to encourage people to stay optimistic.
And in doing that is helping me accept what's happening and stay
optimistic myself. Yeah, if you think of the worst
(36:57):
case scenario that you've ever been in, chances are you
probably got over it. And if not, you survived the day
that you thought the world was going to end.
You survived that day. So maybe you could survive today
and the day after tomorrow and the day after tomorrow and
hoping just that things would get a little bit better, you
know? And then it's recognizing that
(37:18):
you have the strength in yourself to just keep on going.
It sounds really simple. And that's in within all
literature, right? They always tell us, yes, it
gets better. And you know what?
It does get better, you know, because a lot of people think
they get buried sometimes, right?
But a lot of time we're planted,you know, we grow to this person
(37:43):
that. Oh, yeah, sure.
We've gone through all these a myriad of things, but it's
helped us flourish, right? Because without the pain, how
would we be able to understand the happiness?
Do you hear that when it says recording in progress?
I do, yeah. Sweet.
I think they do. It's like a legal thing.
Right, so I can't just catch, Yeah, you know, without you
(38:04):
hearing it. Yeah.
Recording. Yeah, dude.
So through your YouTube channel,Hyper Accuses Hope.
What message do you most want toconvey to others dealing with
chronic pain? Well, the way I see it, being
(38:28):
hopeful is just the most practical thing to do, right?
It's when you're kind of forwardthinking.
It allows you to make goals and that gives you a reason to want
to, you know, keep fighting through.
(38:52):
And so, you know, that's kind ofthe the message that that I'm
I'm trying to put out there. And, you know, there there is
more research being done slowly but surely, you know, I mean,
it's a very grassroots effort. I mean, I want to thank you for,
you know, even doing a, a podcast on this because this is
(39:16):
how awareness happens, you know,one person at a time, 1
connection at a time. But you know, there, there are
people that are starting to lookinto this.
And hopefully over time, we'll have more standardized
treatments, especially for thosepeople who are very severe and
(39:39):
have not been able to recover. And so, yeah, you know, just, I
think it just makes the most sense, you know, to be hopeful.
So even if you can't find it within yourself emotionally,
just think about it pragmatically.
Like you know, being hopeful is gives you the the biggest chance
(40:09):
for for success. You mentioned you have a lot of
other chronic pains and illnesses.
Can you tell me about what that journey's been like and if you
don't mind sharing some of thoseillnesses?
Yeah, so I'm diagnosed with mastcell activation syndrome, which
(40:33):
is a Long story short. I'm like allergic to the world.
I'm sensitive to all food. It's just a matter of degree.
So there's a couple foods like beef that I can eat, you know,
sweet potato within reason that I have almost no reaction to
(40:57):
that I'm able to like sustain myself with.
But you know, gluten, dairy, legumes, nuts, fruits, all those
things I have like reactions to in addition to mold is a huge 1.
And I don't think people recognize how many buildings and
(41:18):
vehicles have mold. You know, it doesn't necessarily
have to be like this giant blackBLOB.
You know, it can, it can be, youknow, spores and the AC ducts
are in the carpet and stuff likethat.
Different detergents, colognes, personal care products, vehicle
exhaust, all these different things that have also made my
(41:41):
world smaller because it's hard for me to be in a lot of
buildings and it's hard for me to be around people who don't
understand the things that trigger me.
And the other big one I would say is the Ehlers Danlos
syndrome, which is a connective tissue disorder where
(42:03):
essentially you're, well, the type I have the hypermobile
Ehlers Danlos syndrome is where you're connective tissue and
joints are too bendy. And what that is ultimately
meant for me is that I have different chronic injuries.
I have chronic whiplash, like 50% neck mobility because
(42:28):
there's actually a hypermobilityin the structures that support
my neck. And so my muscles are trying to,
you know, make sure that there'sno internal damage.
And so for me, it's manifested as, you know, I sprained very
easily, but I also have a lot ofstiffness that really limits my
mobility because my body is trying to protect me.
(42:52):
Yeah, I, I feel comfortable sharing this.
You know, I, I was actually homeless for close to three
years after aging out of foster care, which I'm sure we'll talk
about, but fatigue with both of those diagnosis I mentioned is,
(43:13):
is a big symptom and me being able to support myself, I was
able to do so, but not doing so paying rent.
And so I was actually living outof a vehicle in order to make
ends meet and survive because unfortunately there's not too
(43:33):
many resources out there for people who have aged out of
foster care. So at a certain point I wasn't
able to, to, to make, I guess sort of the traditional
lifestyle work anymore. So that's been a big part of my
journey that actually ended whenI had that accident that I, I, I
(43:56):
don't know if I mentioned the accident, but the truck, I
believe I did, yeah. You did.
You did. And that's when that chapter
ended. You know, I, I finally have,
after couch surfing for a while,found a place that's a
relatively quiet that I'm, I'm doing my best to sort of just
recover from the burnout of it all, you know, So it's, it's
(44:17):
been, it's been a long journey, no doubt.
How has your experience growing up in foster care and shape your
view on family Family trust and support systems?
Yeah, so I know there's people that hear horror stories about
foster care and I'm, I'm super grateful that that has not been
(44:40):
a part of my life. One thing though, that you know,
it's, it's basically, you know, a system designed to help raise
you until you're old enough ostensibly, you know, to be able
to, you know, function on your own when your home situation is
(45:00):
is less than ideal. I actually called Child
Protective Services on my parents, which, I mean, I don't
have any statistics, but I had alot of guilt and conflict about
that for a long time. I don't think that's super
common. But, you know, looking back, I
(45:25):
made the decision I needed to make, you know, so I kind of had
the, I guess, typical experience, although it was
unfortunately emotionally abusive.
I believe my parents tried theirbest, you know, as I've gotten
older. But, you know, sometimes hurt
(45:46):
people hurt people, as they say.And these days, foster care
itself, you know, they didn't give me a whole lot of tools,
(46:07):
but I didn't, I just kind of like put pushed it all aside,
you know, like the, the whole looming thing of like, I'm going
to have to be independent eventually.
You know, they also, I wrote a paper about this in, in
Community College. They, they foster kids get 800%
more medication than the generalpopulation.
And really there's just a lack of resources for like really
(46:29):
proper, like trauma informed therapy and stuff like that.
And so, you know, they just throw a bunch of meds at you and
then, you know, wish you luck when thankfully, in my state,
it's a 21. So it was fairly uneventful.
But when I, when I left foster care, it really made me realize
(46:52):
how important to learn to ask for help.
And I really wish that that's something that it was a journey
I had to go through. But I really realize, I really
wish that I had been able to be vulnerable enough earlier on in
(47:17):
order to recognize that I was not at all prepared for, you
know, after all that trauma. I'm just trying to kind of catch
my breath. And next thing you know, you
know, two years fly by and I'm on my own, you know, And as far
as family goes, like family isn't necessarily the people who
(47:45):
your blood related to. It's the people who really are
are there for you in your time of need and allow you to be
yourself and encourage you to beyourself and encourage you to
succeed. You know, and there's, I have
(48:07):
people in my life who have good words for me, which I
appreciate. And a lot of people, that's all
they have to offer. And I've had other people at
different points in my journey that have, you know, given me a
home for, for some time. And, you know, those actions, I
mean, nobody owes me anything, but it means a lot.
(48:33):
And it's helped me heal to see that there are people, including
today, you know, who you know, it's not forever.
But right now, despite my unemployment, you know, I have a
place to stay. And somebody who actively, you
(48:54):
know, encourages me as best as they can and believes me, you
know, about the hyperacusis and does their best to accommodate
me. And without that human
connection, I wouldn't be here anymore.
I can tell you that much. There's been some angels along
(49:17):
the way for here. Yeah.
So with in regards to those key people or moments during your
time in foster care, can you elaborate on how that has helped
you build your resilience and ifyou don't mind recognizing
those, those people? One person was my my therapist.
(49:41):
You know, I was, excuse me, I was hooked up with a therapist
through a nonprofit for foster kids.
I've been seeing her for going on 12 years at this point.
We meet remotely and just havingsomebody be there that entire
(50:09):
time, just that presence of somebody who's always there
every week, no matter what. It's modeled to me something
that I really didn't get at home, you know, And it's
something that I'm learning to not seek external validation as
(50:33):
much. I'm human.
And so there's only so, so far that I can push that, you know,
and so I'm, I'm sort of in the process, though, of learning to
kind of give that love and validation and drive to myself.
And having, you know, my therapist has been instrumental,
(50:58):
my foster mom, you know, we still, we still talk, you know,
I guess I'm older now, so the dynamics a little different.
But, you know, it was not just about the money for her.
She really cared and she tried. And a social worker even, you
(51:21):
know, that I had through the IT was my case was contracted out
to a third party agency that the, the state was paying to
administer my, my case. But that social worker was
great, you know? I still had to go through my own
(51:44):
journey, you know, I do wish that there had been more trauma
informed therapy available and that I had understood more than
I needed it. But I think that's one of those
things that, you know, sometimeswe kind of just have to take our
own paths to, to find our way home, which I'm, I'm, I'm trying
(52:05):
to do, you know, and it's, it's,and I mean that quite literally,
you know, what is home, where ishome?
You know, I've, I've lived so many places ranging from a
couple months to a couple years.I'm 29 now, almost 30.
(52:26):
So, you know, it's been a while since I aged out.
Yeah. You mentioned that you had to
call the police and your own parents and this is at the age
of 14. Do you mind talking about that
or? No, I don't.
(52:50):
I guess like the, the, the nuts in the bolts of it is my father
and my mom just kind of went along with it was very
controlling to the point of it being just inappropriate, you
know. Like, were they, you know,
(53:11):
wanting you to stay home when you wanted to go outside?
Or did they just not? In a sense, yes, you know,
extremely strict. So for example, I'd go sneak out
and hang out with some friends, you know, and like, not even up
to anything. I was a nerd, man.
I was like getting like straightas, you know, but I listen to
(53:34):
Eminem, for example, and my father absolutely hated that.
You know, they're very strictly religious.
And, you know, I know plenty of really cool religious people.
But so it's not the religion. But I think my father kind of
hid behind the religion because in many ways he was afraid of
the world. And so by controlling my beliefs
(53:56):
and controlling me, I think that's how he was trying to find
sort of a sense of safety and security.
And I was just the type of person I was a free spirit, you
know, I mean, yeah, I, I did a couple dumb things, you know,
like, but I, I wasn't a bad kid.And I finally believe that.
Yeah, it's suffocating, man. And what was wrong with ass like
(54:19):
that, Right, Eminem? Like there was such a good song,
Why? Why wouldn't your dad vibe with
that? I don't know man.
It's it's just a certain my, it was kind of how I, I dealt with
my emotions of being so controlled because, you know,
(54:40):
I'd sneak out and then I'd tell them I went with my friends and
they're like, no, what did you really do?
You know, I was like, I was withmy friends.
They wouldn't believe me. So they'd like take my door off,
you know, And it just, it just spiraled into this thing where
they like, think I'm this monster when it's like I'm a kid
who listens to music with cuss words, you know, and then.
(55:01):
Like built up to you calling thecops on them?
How did? This So what?
What ultimately happened is I came out as gay, and my father,
at that point, total coincidence, According to him,
(55:21):
decides to send me to a Christian boarding school in
Texas for an indeterminate period of time.
And, you know, I talked to the missions person and they were
asking me all these intrusive questions about, you know, my
(55:42):
sexuality and all these things and.
What the fuck? That's.
My understanding was that, like,this place was meant to change
me and kind of crush who I was, you know, And I realized that
even if I didn't, like, physically kill myself like
(56:03):
that, that I'm just being real. Like, you know, I just felt like
I had nothing to lose. I felt like that place was going
to just crush my soul. And so ultimately, I decided it
was a place where, you know, youcan have, like, access with the
outside world. It was very much not something
that sounded like it would be good.
So I called CPS and they ultimately looked into it and
(56:29):
recognized that I needed some support.
You know, I needed some therapy,but I certainly did not need to
be sent to that place. In fact, they I'm super grateful
(56:50):
I wasn't because, you know, I have a feeling that the, that
place could have been very hurtful.
Hear stories about places like that.
You know, apparently my dad, he made the mistake of telling me
that he had hired a private jet with security guards and that
(57:13):
they were going to take me whether I wanted to or not.
You know, So he, it was this alllike, you know, bringing the big
guns show a force, you know, we'll show you who's boss.
And because he told me 3 days before I was due to go, I was
able to make that call. And then the court put an
(57:34):
injunction while they did the investigation.
So that's that's the story. And I'm sorry to hear you had to
go through that. And just, yeah, it's great that
you got separated from that because that could have been
fatal for you. And it's great that you've made
you'd had a life full of meaningand still carrying hope in your
(57:57):
heart. And even amidst all the chronic
pain and illnesses and the abusethat you've even endured, I
don't think I sense you feeling like a victim.
I I sense a person that's gone through a lot and still comes
out of it with a positive lens. And you're honest about it and
(58:20):
you do you recognize that there are the parts in your life.
There are days and weeks where you do become a little bit
gloomy, cynical, but still, moreoften than not, you still carry
the lens of half cup full instead of empty, which a lot of
people. It's so easy in this world to
(58:41):
be, you know, caught up in the muck, in the mire of just the
horrors of the world and just being rejected and having
chronic pain and illnesses and just that morphs our reality
into a very dark place. But it, it's, I'm, I'm happy to
(59:03):
hear that you're still trying and you're still going forward
and trying to live your life even with hyperacusis and being
a foster kid and being homeless for three years.
You said, wow. And what advice would you give
to young people currently in foster care who might be
(59:23):
struggling to find a sense of stability or purpose?
Yeah, to anybody in foster care and anybody who's even not in
foster care but is living in a situation where they don't feel
valued or that things aren't stable, I would just say look
(59:44):
for the people around you who are there to help you.
And this could be anything from somebody who could help you
escape a bad situation to your guidance counselor at school.
Make a plan, have goals. Because honestly, like I was
just mentally in this sort of survival mode thing.
(01:00:07):
Even in foster care, you know, there is so much like emotional
stuff that I just had never, like a sort of tenderness and
unconditional love that I think everybody really needs to thrive
that I had never gotten. And so I don't blame myself for
(01:00:31):
being in the survival mode, but make plans, prepare because life
is going to keep going whether you do or not.
And it's a lot better to whetherit's a business or because I
had, I had like a lawn care business at one point.
(01:00:53):
I had a pets in business. I wish I had sort of kept that
up instead of sort of allowing life to just go by having people
(01:01:21):
rescue me, you know, and I'm glad that there are people that
let me stay, but I could have used that time more wisely.
And so it's just believe that you're worth it.
I think that's how I would sum all that up and then start
making those plans because life is going to keep going either
(01:01:43):
way. Yeah, well, sad.
Like the sun is going to rise inthe East, set in the West every
single day. And whether you do the things
that make you feel whole and fulfilled or not this time,
still going to run forward. And you had mentioned that oh,
you, there's some regrets in your past.
I think you still made the best out of it though, because you
(01:02:05):
know what the resources that youhad at that time, you made the
best out of it and still look using that information, looking
back and still seeing kind of the silver lining and still
choosing to move forward. I think that's ultimately what's
made the difference, right? And thank you for sharing all
that. Now you you still have a lot of
(01:02:28):
meaning and drive for self improvement.
Living with chronic conditions, How have you found ways to
pursue self improvement without falling into burnout?
This is a super good question. And to be honest with you, I, I
(01:02:49):
don't know that I have, I'm verymuch, my life has been survival
mode, you know, for as long as Ican remember.
And so even though I know logically that like, you know,
I've been in this laying in thisbed to sleep for several months.
(01:03:13):
And I'm also going to be, I havethe next several months and
probably longer because my friend is a very caring person
who's really trying to help me out that I have this opportunity
here. My mind is still not feeling
like it's safe, you know, and soI'm learning to sort of just
(01:03:36):
calm down and be in the moment and realize the best I can do is
work with what I had of them. I just got denied for
disability, which means I'm going to have to find some sort
of online work. And I want to like, you know, I,
(01:03:57):
I did this one interview alreadyfor my channel.
I have like 3 more lined up and I was just so incredibly
overwhelmed. I was even nervous about this
one because I didn't know where where my head was at.
But you know, there's something about once you actually start
doing it, it's almost like the anticipation is worse than the
(01:04:19):
the actual action. Yeah, did.
The antidote to just anxious thought is action.
That's a great. Way to put it.
We think of all these things that could happen, that might
happen and it doesn't happen. It just goes smoothly a lot of
the time or even with excitement, we think that things
(01:04:40):
will be better than they are. And so they, they did a study
with, I think people they were, they asked college students to
measure their happiness from like getting ready to, to go out
and then having the, the actually attending the event and
(01:05:00):
then arriving back. And then they were asked at
which points they felt the happiest.
And usually it's the times when they were getting ready.
And this works well with us whenwe're suffering too.
And we're an actress thought is we suffer the most right before
it happens because during it, it's like, not that bad.
(01:05:22):
It's not that bad. Yeah, not not that good, but not
that bad, right? Yeah, Yeah, I guess it goes both
ways. What practices or mindsets that
have helped you find meaning even through the pain and
adversity? I wish I could say I had any
sort of like routine or practiceor anything, but to be honest,
I'm very much sort of a, you know, I have ADHD.
(01:05:48):
I'm very much diverse to routine, despite how it's
probably good for me. But with, with my health issues,
I got days where I can't, I don't get up till 5:00 PM, you
know, realistically, like I justtry to sort of take things a day
(01:06:16):
at a time, make the best of things.
And I am a spiritual person, youknow, I do believe there is a
sort of like method to the madness.
I wish there wasn't so much madness sometimes, you know, But
I just, I don't know. I just, I sort of have this sort
(01:06:37):
of faith and belief. I don't know exactly in what or
in who, but I, I sort of just, Itry to stay.
I just, I, I try to stay connected in, in every sense of
the word to people and to life. They could be as simple as just
(01:07:01):
looking out the window. Even if I can't make it outside
that day, you know, watching thedeer come.
I live right by the edge of the woods.
Very fortunate. Just because it's beautiful and
also because of the hyperacusis.I mean, you'd be amazed how many
ways people find ways to make sound.
(01:07:23):
But yeah, just just just stayingconnected and tapped into life,
you know, because I don't know about everybody.
I know there's, there's some people who are very good at just
and content with just kind of maintaining status quo.
(01:07:47):
I don't even want to call it being stagnant because for them,
maybe that's just there's N spot, you know?
But I know for me, I either haveto be moving towards life or I
start just kind of the voices from my past and the depression
and stuff kind of starts taking me over.
(01:08:07):
So I just I have to keep moving.I really don't have much of A
choice and it's exhausting sometimes.
And I got to tell myself it's OKto kind of take a break.
A break or even a backslide isn't doesn't necessarily mean,
you know, it's the end of the world.
It just means that you need a break.
Yeah. What does success or growth look
(01:08:29):
like to you now compared to earlier stages in your life?
Well, at this point, when I was younger, you know, I, I had this
idea that, you know, and I know I have a lot of potential.
And the fact is like I'm trying to embrace the unknown and with
(01:08:55):
excitement. You know what, what is saying
yes to the people asking me to be on podcast.
I think this is my 3rd or 4th like podcast appearance, right?
So like, that's, that's pretty cool.
(01:09:16):
And it's actually like, it's, it's led to like people knowing
me and some cool like connections, conversations and
even some help when I least expected it.
So, so if I just keep this momentum going, you know, who
knows what'll happen? So I guess my whole thing is
(01:09:39):
like, who knows, maybe I will dosomething big, but I'm, I'm, I'm
not, that's not the goal anymore.
I've realized life is, there's only one destination, right?
It's, it's the journey. The journey is the destination.
That's kind of, that's kind of the, the understanding that I've
come to. And I don't know, for me, it's
(01:10:00):
all about the inner journey. I don't try to compare myself to
other people. I and the only person I'm
competing with is myself, you know?
And there's no way to win or lose that.
I, yeah, I did. I, I appreciate you and thank
(01:10:21):
you so much for coming in the LONG term podcast, bro.
It's been a pleasure to hear about your stories of the trials
and tribulations. And still you stand strong,
right? Despite the chaos that has, you
know, run rampant, it seems likeyou still find the silver
(01:10:44):
lighting and you still try to bethankful.
And you're filled with gratitude.
And it's great what you're doing, spreading the story out
there and being so open. It's it's really brave, it's
courageous. And you're changing a lot.
Of the kind words. And I appreciate the opportunity
to connect with you and to shareall this.
(01:11:08):
And yeah, I mean, like just justgiving a voice to hyperacusis
and also just to to share my story.
And you know, if it, if it touches just one person, you
know, you know, we, we, we did something right.
Yeah, bro, there's one person listening to this, at least one.
You know, it's, I mean, maybe itmight be just my mom, but you
(01:11:30):
know, at least one person, whether they take some positive
away from this. Yeah, if y'all have made it to
this point, y'all are rock stars.
Yeah, I know exactly who like who has the attention span these
days? Hey, with all the tik toks and
the reels, I'll I'll make a bunch of clips for this too.
So no worries for the people that that can't stand an hour
(01:11:51):
conversation then clips will do.I may be a little guilty of that
myself sometimes. Me too dude.
I spent a couple hours scrollingyesterday man, it was really
bad. I'm, I'm not proud of myself for
that, but hey, you know where we're not perfect?
Nobody's perfect. Yeah, dude.
And I love what you're doing, man.
(01:12:11):
Like, you know, you're, we are two people coming together to
make this podcast, but you know,you're the one that that made it
happen. And it's just great that you're
sharing people's stories. And I wish you a lot of success
(01:12:32):
as well, you know, moving forward.
And who knows, maybe, maybe we'll do like a reunion or
someone of these days. Oh.
Bro yeah, we're we're connected now we're I know your YouTube
and then that's Hyperacusus hoperight for everybody that.
Was hyperacusis hope? It's pretty much the probably
(01:12:57):
Vegas hypercuses channel out there and they're, I mean,
that's it didn't take much to get there, but if you search it,
you can find it. You know, it's very niche and
I'm just I'm so I'm so I'm so touched that people have been
finding those videos meaningful and that, you know, it's making
(01:13:20):
a difference because on my worstday, I can be like, hey,
somebody just left me a comment.Thank you so much Keep going.
You know, this, this helps me not feel so alone and I'm like,
like, it makes me cry sometime. You know, it's like it, it
really it makes a difference. Still working on the image for
(01:13:41):
it. It's this AI generated ear in
like cupped. Hands.
A little bit of kind of like dismembered ear vibes, but I
haven't been able to come up with anything better yet.
But yeah, hyperacusive hope on YouTube.
Yeah, people that just see that they don't know anything about
hyperacusis be like, is this like an ear amputee sword?
(01:14:02):
Yeah, exactly. And then I also am going to plug
the Canary Uncaged, which is a channel where it's kind of a
fallen by the wayside where I kind of followed more of my
chronic illness journey and my car living journey.
And so if anybody wants to learna little bit more about that,
(01:14:26):
that's on there as well. Sweet, sweet man and as always
to everyone listening and watching, there is a place for
you in this chaotic world. Never lose hope, strengthen your
faith and keep up long term. Daniel Vaclavive everyone peace.
And then yeah, man, that's that's it.
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