Hannah's Medical Syndrome Revealed

Join us this week as we dive into another round of Caregiver or Funeral Home! But before the fun, we have to learn some important things about Hannah's health and explore more of Shane's scary dreams. Hop on in our dump truck and enjoy the ride.


For transcripts of this week's podcast click HERE:

Thank you to this week's sponsors:

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Executive Producers are Riley Peleuses + Michaela Garrison for YEA Networks / YEA Podcasts

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Episode Transcript

(00:03):
Yay networks. And it feels reallynice that I'm not the only one in
our relationship with a severe disability.Yeah, that's so nice for you.
Well, how about here man,welcome back. My parents are on the

(00:24):
way. They are, they're ona plane right now. We are frantically
trying to get the house. You'reready for them, yes, And yet
here we sit and we need tobang out this podcast. The clock is
kicked in. Before we begin,I would like to share a what is
that sleep talk that I wrote downin Dreams sleep talk talk? Shane talks

(00:45):
into sleep. He does it almostevery single night whenever like he falls asleep,
and then if I move and itlike wakes him a little. He
begins to talk to me almost everysingle night, And some nights I'm too
tired to care about it, andother nights I will begin to write it
down on my phone and try toengage with him. That's what I did
two nights ago. And before westart, I'm going to read what he

(01:07):
said to me. Oh, andlet me just preface this by saying,
I we just talked about this acouple episodes ago. But I'm a scaredy
cat, so at night I'm veryvery, very easily spooked. I like
to preface it by saying, whymust my dreamscape be like the pits of
Hell? Why do I automatically enterinto like nightmare escape? So I'm turning

(01:30):
over and Shane starts to go andyeah, scared. So I tired.
I'm like, what's wrong? AndI wrote that down. I wrote down
what's wrong? So I go,what's wrong? Shane responds read my line
with almost the worst thing he couldsay. But I couldn't understand what your

(01:53):
words were. So I'm going totake him a couple of times to enunciate.
I'm going to read it how Iprobably should at the first time first,
and then I'll read it nicely.I mean, yeah, really good.
And so then I'm like, what, I'm being attacked by the smiler.

(02:21):
I'm being attacked by the smiler.And then I wrote wines. So
then I was horrified, say who'sthe smiler? Because what the hell?
What this reply is? You gonnamake your break Hannah's night of sleep?
And I say, you'll never understandwhat I was being honest, So then

(02:47):
I just had to go. Iwas like, Okay, good night,
thanks. I wonder who the smileris? And why she was attaching me.
I don't know. I thought yousaid spider. So the first time
I was like what, and yousaid it again. I was like the
spider and you were like the Smier. There's a man that visits me named

(03:07):
the Smiler in my sleep. Thatis unfair. That's probably a thing,
like I bet people are gonna commentbeing like the Smiler is a blah blah
blah legend that visits people. Yeah, when they visit you, you know
you have seven days to live Jesus. But I also have to tell them
about my less scary but more absurddream that I had, I think the

(03:29):
same night. Finally, not ascary dream for you at least, just
still entertaining, just conserting enough tolike, I don't deserve this, Okay,
So I do dream that Hannah andI were in a playground park area
creepy, and Hannah was writing theswailings, writing, yeah, you were

(03:52):
swinging on the silence. Where doyou what? What verbs was like?
Hannah was swinging her Handah was onthe swing, and I had writing is
just and I had mounted the swingsetwas gyrating, bagging further, swinging is
fine. HANDA was swinging on aswing set, and she was lamenting the

(04:12):
fact that she had to leave soonfor a sound chat in this dreamland.
And it must have been the performerof some kind, and you were pissed,
and you were like, I haveto stop swinging. I have to
get your sound chat. Got alittle weird, but fine. I lift
up a garden hose, the endof the garden hose, and I say,

(04:36):
I have to do sound check too. I begin to sin into the
open end of the garden hose.I wrap up my sound check. It
went well. I sang into thehose. I bring the hose down and
begin to pee into it. WhenI say, Hannah, they like me

(05:03):
to do a sound chat before Ipee into the hose. Who was they?
The smiling man? I don't know, so I say, very long,
I am the logic in this stream. Uh huh, I say,
Hannah says, I don't think theyneed you to do a sound chat for

(05:24):
that. True, very true.And I just as logically reply, no,
it's because I use it for pooptoo. If you can't follow that
logic, oh my god, youin your dreams. I don't know what

(05:46):
it is. My brain just legsgoes not to the night. It pitchs
random words and forms a whole worldaround them. Those sound check poop.
None of those things are like anythinglike to point too, I know in
my life and be like I wasthinking about that. Nope, not even
the smiling man, not even thesmiler. Maybe I am a smiling man.

(06:10):
Oh god, No, that's creepy. What else should be doing today?
We are going to talk about aa syndrome, A syndrome that I
possess that I until this week genuinelydid not know, and it possessed and
I think I've told you about itbefore those I don't think you did.

(06:30):
It's a really weird it's a rarecondition. It's a big enough condition,
and it runs in my family.I feel like i'd be like, oh,
yeah, I know my wife hasthat. Yeah, I don't think
I do. I did not knowthat well, but it hasn't. But
like, might talk to you aboutit? I don't think so. The
whole genetic thing. No, maybeyou weren't in the room. So I'm
finding out new information about my wife'smedal. That's nice. It is learning

(06:54):
new things about each other. You'relearning about it with me, Yes,
And then we are going to playanother round of funeral home or caregiving agency,
which is a game. They handledit up last week, Yes,
and boy did I love it towrap up? Right now? We have
a little housekeep family about the futuremayhem can we do and would you like

(07:15):
to explain? Sure? So wehave this episode. Then we're going to
have one more episode before the endof the year. We're going to take
a few it's going to be aspecial one end of season one. Yeah,
season finale, and then we're goingto take some time off and begin
early in the new year having seasontwo season two that have a new new

(07:38):
feel. Season one was over ayear long, because I don't know how
long season two is going to be. If you had told us a year
ago that we would actually create likeover fifty I tast episodes, I'd be
like, no, I can't believethey will flay out. We'll do it,
I know, But we did it. We did it. It was
a lot of fun. It wasa lot of mayhem. All right.

(07:59):
So, now that we have doneour housekeeping, should we move on to
my condition? Yes? The lightstage break, yes, so I can
review your medical documents and then we'llbe right back. This year For our
third wedding anniversary, Shane and Igot one of our favorite photos from our
wedding day painted hand painted into areal painting by Paint your Life. We

(08:20):
want to show it to you againbecause we love it so much. We
really do. This painting has aplace of honor in our heart. It
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(08:41):
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Yeah, their website makes it supereasy. The hardest part was Picky
rich Feo. I know we wantedto forever memorialize in paint. Every time
I look at the painting, Ihave a new favorite part. But right
now, as I'm looking at it, I think my favorite part is my
bouquet. The flowers are so beautiful, and I loved my bouquet at our
wedding, so to have it paintedso perfectly, I just love looking at

(09:05):
it. Yeah, my favorite parirtis my smile. Oh okay, I'm
say yeah, everyone, My favoritepart of the painting. And I've said
this before. It's just how happyto be a lot? Yeah, faces
are really I mean, I knowI'm not a professional, but faces are
so hard to capture accurately in painting, and they absolutely know it. They

(09:26):
really did. I can't believe howwell they did our hair. Like I'm
just not a painter, so I'mlike, how did you do that?
Like? Why does it look soreal? I didn't like to see only
on hair? Is we just feltreally hot? You were like, h
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(09:48):
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(10:11):
rates may apply. She terms fordetails. Fad did you paint your life?
First of all, through in thisepisode, we're back Shane. It
is a dark, dark night inConnecticut. Already in this narrative stay we
are in two thousand, let's saytwo thousand and four. A narrative style,

(10:31):
you have to have the details.This was ongoing. Yeah, but
I'm just this is a thing thatI had a lot, But I'm just
picking one night. We are inConnecticut, two thousand and four. I'm
tucked into bed. How old areyou? Nine? Eight? I guess
yeah, baby Hannah, little me, tucked into bed. She's already feet
tall. No, then I wouldhave been eleven. Okay, So I

(10:56):
am in my bed, it isdark, lights are out, I'm trying
to fall asleep. Mm hm,I SMI. I start to get a
feeling that is familiar to me,and it is horrific. I hate this
feeling. I'm becoming distressed. I'mbecoming anxious, and I'm like, no,
no, no, no, no, no, no, please don't
happen. What does it feel like? The feeling it's hard, like it's

(11:18):
hard to explain this feeling. I'mjust gonna say what I did then,
Okay, it doesn't matter. SoI'm getting this feeling and I'm like,
you know what. No, likenot today, this is not this is
not happening tonight. I'm freaking gonnamake this not happen. I sit up.
I turn on the light to tryto make this stop. I think
maybe it's because I'm laying down.I sit up, turned on the light.

(11:39):
The entire room begins to spin aroundin and out, bigger and smaller.
And that was the first time thatI was like, this is a
real thing that is not just likemy anxiety. I am physically watching this
occur like you you were sound mind. Yes, I was sitting there like,
holy moly, this is actually crazycompared to just straight out dizziness.

(12:05):
Yeah, I wasn't dizzy. Ididn't feel dizzy at all. I felt
totally fine because it sound everything aroundme. No, not dizzy at all.
I wasn't because I've had like vertigolike stuff. No, no,
no, I wasn't dizzy. Itwas everything in the room was changing shape,
getting the actual I just did likea really hard pee into the microphone.
Go ahead, but so like anactual visual like objects in the room

(12:28):
were changing visual size and auditory.Yeah. Because I had my Harry Potter
tape playing that I would listen toevery night. My singular tape that I
decided was my good night soundtrack thatwould get like louder and quieter. You
know, anything in my hands wouldfeel bigger and smaller in like a pulsim

(12:48):
man like in and out and kindof just relatively Yeah, it wasn't like
out. It's like, oh thateven gives me the feeling though it is
faster and slower, like to stopit. Anything that could get bigger and
smaller, faster and slower allowed itwould just alternate, which is just it

(13:09):
was, Oh my god, itsounds very like this is sincere damn.
Yes, So this would happen tome a lot, always at night while
you're finally a sleep. I thinkit was always at night. Yeah,
I don't think I ever had itlike in school during the daytime. I'm
pretty sure it was always at night. But that was the first time that
it happened that when it wasn't likeI had a lot in my dreams.

(13:31):
I would have nightmares of it happening. That was the first time that I
like turned on the light and itwas actually still happening, not just like
in the dark. So, Imean, I if that it happened to
me I may just go their life, being like sometimes when I'm falling asleep,
I have these beer weird, dizzykind of hallucination. That's what I

(13:54):
did, because like, what areyou supposed to tell your pediatrician me at
eight years old is supposed to belike, hey, doc, sometimes they
get bigger and smaller. And Ididn't even know how to say it at
that time, but my dreams wouldbe like I was holding a hair,
like a strand of hair. Ohmy god, I can like still feel
it. It's so horrible. Itgives me a horrible pit in my stomach.
I'd be holding like I don't evenwant to touch my hair because of
it. I'd be holding like astrain of hair, and then it would

(14:16):
grow into like a huge like rope, and then it would get small again.
And what I'm describing is not evendistrict, Like that's not distressing on
its own, but it was accompaniedby a feeling that was, yeah,
horrible, which is just like Idon't know why, and I mean even
now as a you know, adult, it's difficult. Yeah, describes an
eight year old yeah, being like, yeah, this is what's happening.

(14:39):
And when I told my doctor thatI was having like remember the breathing things,
and she said it was anxiety andI was told to breathe into a
paper bag. Like I don't thinkthat if I had said something to that
doctor that she would have been like, hey, I know what this is.
It should have been like, okay, kiddo, maybe try the paper
bag again. But in fact,it is a real thing, and this
is what I learned. It toldme yes about it. Go ahead.

(15:01):
It is called Alice in Wonderland syndrome. You're eating in for this condition,
by the way, So it's namedbecause the guy who wrote Alice in Wonderland,
Lewis Carroll, like, it's verysimilar in description, and they think
that he himself had that based onthe way that he wrote the book,
that he had this like perceptual distortionthing. So I'm going to read to

(15:22):
you. Well, actually, firstI'll tell you how I found out what
it was. I actually like,I don't know exactly how I found out,
but it had to do with mybrother. He's a doctor and at
some point in my life we Ithink he honestly asked me like, has
this ever happened to you? Becauseit was happening to my niece. Yeah,
and like he was like, andmy mom had had it, and
I think he when he was littlehad it, so he knew my mom

(15:43):
had had it. And then heasked me if I had it. That's
how Yeah, But basically he waslike, hey, I even googled like
a genetic link and it's like it'sthought to maybe be like genetically passed,
but there's no actual proof of it. And he was like, maybe our
family can be proof, Like Iwant this to be like the thing you
steady to do some one to doa study on this family. So yeah,
it's definitely it runs in my familybecause otherwise it says that, like

(16:04):
they it's caused by a bunch ofstuff. It can be like epilepsy.
It can be epstein bar that youget like infected with. It can be
a bunch of different stuff that triggersit, and then I guess you just
like have it. But it's mostcommon in children. I have not had
it since I was maybe fifteen,fifteen or sixteen. Yeah, I had
it, but I can still rememberthe feeling and that's probably why, like

(16:27):
it's you know, very well heavythe taste that you have told me you've
had this, and I forgot.Yeah, but as I really don't remember,
it may also be true that youforgot to talk about this. Yeah,
it hasn't happened to even ten years, you know. Yeah. So
this is a This is an articlefrom the Global Security for Help No Global

(16:48):
Center for Health Security, sorry,and from u n MC, And it's
about a nine year old named Joshwho would have these episodes. I'm not
going to read his description. It'svery similar to mine, Like things would
get bigger and smaller, his mom'svoice would get slower and you know,
faster. Sounds like you're tripping.Yeah, it really is like that.

(17:11):
Uh. And it said it saysthat Alice in Wonderland syndrome affects the way
people perceive the world around them andcan distort how they experience their own bodies
and the space it occupies. Thesecan include distortions and vision. Imagine seeing
people's faces change blah blah blah.There's forty types of visual distortions that you
can get changing my face and theystop it. I'm Other symptoms include seeing

(17:34):
people or objects moving in slow motionor moving unnaturally fast. You can hear
loved ones speaking oddly slow or unnaturallyfast. Your own body parts can get
bigger and smaller like your hand.Yeah, that was part of the thing.
Wow, isn't that interesting? It'sso interesting. Yeah. The elosest
thing I've had to it is I'vehad a phenomena where while I'm falling asleep

(17:56):
inside the vacuum of my brain,Yeah, I feel like I'm in the
middle of an endless like black expanse. Yeah, and I can feel the
edges of it, even though it'sendless, shrinking and then getting bigular.
But when I opened, my eyesare instantly sucked. Yeah. So it's
only it's different, but you know, similar in that way, and it's

(18:18):
a very that feeling is like almosta nice one. Yeah. When it
happens, it's like kind of likeyour riding waves. Yeah, yeah,
flow down. So I'm trying torelate clear condition, but I can't.
Well, if anyone else that's watchingthis has had Alice in Wonderland syndrome,
let us know. I hope thatsomeone out there has had this and doesn't

(18:42):
know there's a name and the conditionbehind it. Is it like detrimental any
way other than like emotionally, No, it depends on what it's from,
Like if it is a sign ofseizures. Obviously that the seizures can be
a problem, but if it's justwhat you have, then no, it's
not like dangerous. If anyone hasAlice's Wonderlands and dren is you know,
incumentally affected by it, I'm notmaking fun of that fact. Nine year

(19:07):
old me would be like, it'svery detrimental. I'm laughing about it.
But it's not like a sign ofa breen bleed, you know, just
on its own. It's it's notlike that I make fun of everyone that
has it. Okay, all right, well that's I mean. I was
astounded to learn or relearn that youlived with this addition that I never knew
about it. And it feels reallynice to know that it's a real thing

(19:30):
and not just like something I becauseit feels so fake. It feels like
such a weird thing to say.And it feels really nice that I'm not
the only one in our relationship witha severe disability. Yeah, that's so
nice for you. Am I gettingbigger or smaller? Should we move on
and stop it? Take a break? That's why like when when you like
the fan, we use white noiseon your phone when it gets too loud.

(19:53):
You know how I say a panic. Yeah, it's that kind of
a thing. Interesting. It's like, I swear to God, it's related
to that, really is, becausethat would happen to me in my room.
The fan would get so loud eventhough it was not, and then
I would be like, oh mygod. Okay, doctors, if you're
interested in studying my wife, Iallow. I just said, let's get
her under a magus or let's gether under amitric. You get this brilliant

(20:18):
analyze and see what's happening. We'regoing to take a break, and then
we're going to be back with afuneral home or caregiving agency. My favorite
game. We'll be right for sponsoringthis episode is the room getting bigger and
smaller all around you. Shane,do you feel like you need to find

(20:38):
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(21:00):
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(21:22):
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(21:51):
All right, for our second tolast episode of the year, our penultimate
episode of the year, It's timeto play carrygiver Agency or funeral Home.
I've got a really good one tokick us off. I think this is
going to stump you. This gameis very simple, Hannah's only to read
me the name of either a funeralhome or a carrygiver agency, and I

(22:15):
have to guess which one it is. And it is harder and you think,
sadly, one of the hardest gamesI've ever played. Okay, are
you ready for number one? Uh? Huh? Day and night? No,
day and night, good luck.It really gives carrigiver vibes. Yeah,

(22:37):
day and night. Maybe it's afull service funeral home. Aren't they
all full service? Well? Whatfuneral is not full service? I mean
maybe they're open twenty thirty seven.If you lose someone at you know,
at two am and you've only getthat funeral done boom before of course,

(23:00):
classic two am funerals. Why didn'tI think of that? I'm arryer agency.
It must be day and night removalsand cremation. No like removals.
Why day? Just saying day andnight? Yeah, yeah, night removals

(23:21):
is not a good name. It'sday and night like they're always open.
You were right, you were right. It's morbid. They're all morbid,
Shane, Okay, ever loving jeez, all right? You know, and
that's that's one word. If itis a tarrier agency, that bothers me.

(23:42):
I do not think that the tarriersthat are you know, paid the
yem and the random people's Probably theyare, don't get me wrong, lovely
and wonderful people doing a very importantjob, but they don't love the people
that they're helping. Maybe instarin instancesmaybe, but as a rule, now

(24:04):
ever loving and get over yourself.Funeral home locked it in ever loving home
health. Damn it, Jesus,this is so hard. Hm. Okay,
divine integrity. Oh it's better.It's very God, it's better to

(24:25):
be a funeral home. I haveto say funeral home. If divine integrity
is a harry giver agency trying tolike home health care. Oh my god,
integrity. I'm surprised the word integritydidn't give it, give it away.

(24:48):
But you want your your end oflife services to be divine is ridiculous.
Yeah, home on, you're helpingpeople get to the bath there,
You're not their savior. I know. Okay, Friends, that's all caps.
I wonder if it stands for something. It's all caps and there's a
it's a chain, there's a coupleof like location. I don't know what

(25:11):
friends stands for, but it's it'sjust friends, family, restless in every
everyone's everyone's neighborhood. All right,friends, friends, funeral home. You

(25:32):
haven't gotten a single one. Everyoneon friend's funeral. What is that?
I don't know. There's a coupleof them though. Is that just trying
to be like we're friendly? Ithink it stands for something, but yeah,
it probably is just someone's last name. No, it's all caps,
which is weird. Lighthouse that makesme feel like like heavenly, like we're

(25:57):
a beating of hope. Mm hmm. Funeral home lighthouse, memorials and receptions.
I don't want you got on thehead, quit while on the head,
downs still one, here's the lastone, Halo. It's gonna be

(26:18):
a terrier agency. I wanted tobe a funeral home. Such a word
sentence. It's a terrier agency.And they all have a god complet They
should not have. Companies carry giversare important and great, but the people

(26:40):
that make the companies that do thisfor need to step off of their ivory
tower and realize that you're providing amy my caregiver agency would be called prompt
and reliable. Yes, there yougo. You don't like respectful, listen
to you Dignity plus Home Help,Home Help Care with Compassion. Oh yeah,

(27:04):
that's nice. Is annoying me andI made it up, all right,
So Halo, your final guess isI don't wait, what was it?
If it's Terry ever, I'm done. I'm pissed. Halo Homecare,
Oh my god, do you wantto do one more? You guys as
opposed to Devil hometare? Yeah,you know all the Evil Carrier Very Agency,

(27:26):
Devil Horn, Halo Homecare. Well, I did it ship to say
I'm not very good at this game. I don't think anyone could be good
at this game. Why did generalhomes and carrygiver agencies have such overlapping names?
I love it. I think itis the funniest thing ever because you

(27:47):
almost always get it wrong. Soit's so satisfying for me to find these
names and be like, he's nevergonna go, and you're very like,
shit, you've bill out with itthis list? Yeah, yeah, Shanka
being like, oh, I'll looksome up for you. M m mm
hmmm. Cheater, cheater, cheater, I know, all right, All
right, Well, we hope youenjoyed this episode, our penultimate episode.

(28:07):
Yes, one of my favorite wordsone more. All right, let's let's
go. If you enjoyed this,please like a review, subscribe, I'll
leave a comment. All of that. And it's a drunk yard out there.
And wait a minute, is ourtrash baller getting bigger? Oh my

(28:29):
god, it's stetting, bigger,it's bigger. No wait, it's smaller,
smaller, smelling. Oh what ishappening? Oh yeah, goodbye everybody,