Hey humans. How's it going? Susan Ruth here.
Thanks for listening to another episode of Hey Human Podcast.
This is episode 384 and I had a conversation with Lauren
Reiner. Lauren's a talented young singer songwriter,
I've written with her and she's fabulous. She's working on new music.
As she recovers from brain surgery,
she had the brain surgery procedure to ease her epilepsy.
It's been an emotional and physical rollercoaster to be sure,
but she's navigating her way back to health and happiness.
She's fierce and brave and determined, and a badass.
If you ask me, there is a trigger warning on this episode.
We talked about mental health aspects and depression and things like that.
So make sure that if that's a trigger for you, you are aware of that.
If you're looking for a way to help with the humanitarian crisis happening in
the Middle East right now,
check out nrw.org and the other
great place to donate money, uh, uh, resources.
So Doctors Without Borders. So just wanted to get that out there.
And prayers for everyone. Check out, Hey,
human podcast for links and to learn more about my guests and the show,
check out Susan ruth.com.
To learn more about me and my other artistic endeavors,
follow Susan Ruths and hey, human podcast on social media.
Find my albums on Spotify, apple Music, Amazon music,
wherever you get your music. And rate review and subscribe to, Hey,
human podcast on iTunes or wherever you get your podcasts.
Thank you for listening. Be well. Stay safe, be kind.
And here we go. Okay,
get comfy. Feel good.
Yeah. .
I like the hair. It's cute.
Thank you. It took, it took a minute for me.
You have good face .
So thank you.
You could even, I feel like you could go Sinead full tilt and be fine.
A lot of people have said that it took some.
You have big.
It took me a while. Like I really hated it at first. And honestly like they,
I didn't think I was gonna have to shave my head. My surgeon was like, it's,
it's just gonna be like a small part that's shaved, but your hair will cover it.
And I was like, okay. And I woke up and literally like ,
like a third of my head was shaved. They went.
For the inverted.
Mohawk. Like I, yeah, I look like,
like the Cynthia Doll from the Rugrats . Are you kidding?
Like I can't what? So I have to cut it all off, obviously. Shut out.
Rugrats though. Yeah. Lauren Reiner, welcome to Hey Human .
Thank you for having me.
I'm excited.
Yeah, I've never done a podcast before so I'm so glad that you asked me.
I'll be gentle.
.
I'm, I'm an easy . We met,
I was trying to remember exactly did we meet at the B M I thing?
Was it the B m I thing where you like plugged your phone in and play a song or
was it when I played the Acoustic Lounge?
No, I think it's the, I.
Think it was that one.
Phone in and play a song. Yeah.
That was, it was 2019 right.
Before the Pandemic Baby. Yeah. the good old days. Yeah.
That was a good, I loved 2019.
It was a good year. I.
Feel like everybody was kind of thriving and then.
I was thriving. Me too.
I was really thriving. I mean,
I was ignoring things that I probably shouldn't have been ignoring,
but I thought I was thriving.
Well, hindsight is 2020 and ignorance is bliss.
Yeah, right. Oh God. , definitely.
Let's start with your start. Where did you grow up?
I grew up in Pleasantville, New York, which is like 40, 45 minutes.
Uh, north of New York City.
They made a movie about Pleasantville. Is it?
I don't, I don't know if it's the same one and I honestly have never seen it.
Which people are always like, how have you never seen that movie?
Like you grew up in Pleasantville? Who's in it?
Is it Reese Witherspoon or something?
Uh, Joaquin Phoenix. I feel like some of the town is in black and white.
It's been so long.
That's exactly.
What it's might be confusing it with another movie.
No, that's what it is. It's like when they go to Pleasantville,
I think it's black and white, but where I grew up was fully color. So .
Technicolor no less. Yeah. . How was, uh, childhood? Were you created,
you're a, you're a songwriter. Mm-hmm. performer. Yes.
I, yeah.
I always was into music from when I was super young.
Like my dad plays guitar and I think he would play for us. I know,
I don't know why I said I think I know he would play for us.
Like before we went to sleep Uhhuh and then my dad's parents were both
professional musicians.
Dad's mother was a classical pianist and my dad's father was a professional
violinist.
They ended up doing other stuff 'cause it's really hard to make money from
music. Obviously a lot worse now. But even then it was, you know, very hard.
And I started taking classical piano when I was five.
I started playing guitar when I was like 12 and I think I started voice lessons
when I was 12. I wanted to start earlier, but my parents were like, no,
'cause I think it can be actually not so great for your voice to start voice
lessons super young.
Oh, now you tell me. I started at six. Oh really?
. I'm sure it's like, I'm sure it's fine. Your voice sounds great.
So who knows .
I had a voice injury, a vocal injury in high school actually that.
Was Did you get a node or.
No, a hemorrhage. Ooh.
My You went full tilt. Yeah. From singing too hard.
I like had chronic strep at the time.
This was before I got my tonsils out and I was like with my voice teacher doing
warmups and I knew I was kind of pushing,
didn't want to seem like I was giving up. I don't know.
So I kind of went really high and I like felt this kind of like pop and I went
to the E N T and they told me I had hemorrhage,
but it's actually way less of a big deal than a node 'cause it just kind of
heals on its own versus a node needing to be taken out for my hemorrhage.
They were pretty much just like,
you need to not talk for like two weeks and then it's harder.
Than it looks.
I cried so much silently but still cried in the library at school,
like writing to my friends on like a whiteboard and I was like, my.
Life is.
Over. Yeah, no, I seriously thought my career was over but it, it healed up.
Like there's still maybe a tiny bit of scar tissue there,
but it's fine.
It's funny to think as adults,
someone telling us we can't talk for two weeks Sounds like a dream.
. Yeah. I don't know. It was, yeah,
in high school it was definitely harder than it would be now. Sure.
Although I'm like so ready to get back out into the world.
I feel like I've spent so much time like not talking and because of the surgery
and stuff, so eager to get out and do things.
But I also like still am really recovering and like need to chill
and it's, it's really hard to find that balance.
Did you have health issues as a kid?
I had a couple febrile seizures when I was a kid,
which is having a high fever and getting a seizure,
which honestly in kids is actually really common. I think only, I don't know,
10 to 20% of kids that have fever seizures end up having epilepsy.
I think I was like maybe 18 months and my mom just like sensed that something
was wrong and looked on the baby monitor and saw that I was convulsing like the
whole thing.
Terrifying.
Yeah. Yeah. I mean I think they thought I was dying in that moment,
which was incredibly scary. Yeah.
So obviously like they rushed me to the hospital and, and they were like,
you know,
this happens 'cause as a baby I like had really high fevers and
they started kind of learning that putting me in a cold bath would kind of
stop it.
My dad said he would kind of see a certain look in my eyes and he was like, Hmm,
something's about to happen. And he would put me in a cold bath.
But I think there were a couple other seizures, maybe one or two,
but one of them lasted three to four minutes,
which is pretty long and is probably why I have epilepsy now. I also,
I mean I was born jaundiced,
like I've always kind of had some weird health stuff,
like stomach stuff and which I think we later learned in my life was really my
gallbladder. But that's, we'll get there later.
I kind of always struggled a little bit with stuff.
Got strep a lot and I think I just kind of was more prone to
getting sick. The seizures. Uh, once I turned two totally gone. Hmm.
In retrospect,
is there potential that the fever and seizure
relation was actually epilepsy back then? Oh.
Yeah. Actually fevers are like a massive, massive uh, trigger for seizures.
So it's possible that I had epilepsy already,
but I'm not really sure because after that I didn't have a seizure again until I
was 14.
And when I did I had no idea I was a seizure for many years.
You just thought you were a great dancer? No.
'Cause I, I was awake. That's the thing is like with epilepsy,
I'm actually gonna be participating in this documentary that this girl is making
about epilepsy, which I'm,
I'm really excited about 'cause I feel like there's so much that people don't
know about it. And I didn't know,
I didn't know that there were seizures that you could be awake and not convulse.
I didn't know that. So we had, so you.
Could have seizures that you're ocular seizures that are just, that make you.
My very good friend has that mm-hmm. . Yeah.
Who had the same surgery as me. That's how we met.
Her vision gets really weird and starry. And you've had that. Mm-hmm.
. Really? Mm-hmm . Do you have epilepsy?
I don't know. I've never been tested for it but I have on occasion gone blind.
But I see uh, wiggly things. Yeah.
And then I can't see it all and it lasts and then it usually has a terrible
headache associated. I just always assume they were migraines.
But the way you're describing.
That could be migraine with aura though. Yeah. Maybe you should see around.
Yeah.
Probably. I'll add it to the list. Yeah.
, I was on a flight back from France,
like it was the first time I'd ever left the country.
We did like a family trip and I had taken a nap and I woke up and I'd got this
really weird feeling and didn't know where I was and
got kind of tingly and just was really confused.
And then I kind of came out of it. I just didn't really understand.
I tried to explain it to my parents. I was like, yeah,
I woke up and I just felt like really weird and kind of really anxious and they,
they were like, oh you had a panic attack.
That's what it sounded like all the way through high school.
I would have them like every like four or five months at that point.
And it was always when I was waking up from sleep, oh, panic, attack, whatever.
And there was one actually though,
right after high school my friends and I were swimming and
I had one,
'cause we had smoked a lot of weeded and my friends kind of pulled me out.
Like I didn't go under but I just, I just,
it was clear I didn't really understand what was going on.
So they like pulled me outta the water and I just remember being like,
what the hell?
I just thought it was like I was too high or something and had a really bad
panic attack in college. I don't know, I thought I was fine.
And then my senior year, it started happening every
two weeks maybe. And.
Same when you woke up. Mm-hmm. ,
is there some sort of thing with waking up and seizures?
Sleep and seizures are intertwined.
One of the biggest seizure triggers ever is not getting enough sleep. But yeah,
so I was a senior and I don't know why I'm having these panic attacks.
I'm happy I'm thriving, I don't understand.
And I was talking to my dad and he just,
I think he was distracted but he was like, oh, like,
like what are your panic attacks? I didn't even think of it. I was like,
I get this really intense feeling of deja vu and there's like always this
Japanese woman and she's telling me the same thing and I know what she's gonna
say but like after the panic attack, I can't remember what she said.
And like I also can't read or speak a minute if I read something.
I remember looking at a text, my friend was like,
when do you want me to pick you up? And to me in that moment it was like blah,
blah blah. Like I was like, what the hell?
And I say things that don't really make sense. And my dad was like,
are you kidding me? That is not a panic attack.
I don't know what the hell that is, but I'm gonna come down to Miami.
So he came, which is where I was at school,
he came down to Miami and took me to see Dr.
Canner who's at the U Miami Hospital. And he's like a well-known neurologist.
First of all, I'd be remiss if I didn't bring up the Japanese woman. I.
I couldn't that you know, it's actually stopped.
But it didn't stop until I was like 22, 23. But it was like every time.
And.
You saw her outside of yourself or in your mind?
In my mind. But I have one of my friends with epilepsy,
he kind of had something similar.
Like he would always see his dad and it was al,
he was always saying the same thing to him.
Deja vu is a super common aura thing in the moment.
I knew what she was saying. I was like, yeah, yeah like get it over with.
But I will.
Never was a warning.
I don't know. I have no idea. .
Man.
Seizures are really weird. Like really fucking weird.
But always the same woman. Yes.
But.
You'd never seen her in real time. No. Whatever that means. No.
Fascinating. Really weird. Yeah, so far this is my favorite part. Alright,
.
So then my.
That's just wild.
Yeah, it was. I remember ,
I'll never forget that phone call with my dad 'cause he was like,
what are you talking about? Yeah. I.
Would've been like, I'm sorry what?
Yeah, he was like, um, we're gonna need to take you to the doctor.
Like immediately. So we went to see this guy,
Dr. Canner who's really wonderful and you know,
we sat down with him in his office and I spoke for a little bit and he was like,
you have epilepsy. No I don't. I don't. And he was like,
I mean you can be in denial but like you do, those are partial seizures.
They did an E E G which is kind of, you know,
have you ever seen pictures when they like put them on on your head? I'm done.
Sure. Yeah. They didn't really see much.
They saw a little bit of weirdness happening in
my left temporal lobe and he tried to put me on medication.
He put me on Lamictal and I was on it for one day and I freaked out and
stopped 'cause I'm just so sensitive and the epilepsy meds really
are not good for me, like mentally, which is not uncommon.
So I stopped it and I was like, you know what? My seizures aren't that serious.
Like who caress whatever. And then I went back to New York, you know,
I was done with college and I started seeing this doctor, Dr. Jacobson,
who's also really wonderful in Westchester.
And he put me on Trileptol, which is another epilepsy med.
I went with my friend to Europe for the summer.
I was pretty okay.
But I had really bad headaches literally every day and
suddenly had a temper, which was not something that I'd had before.
And like there were a couple times that I like screamed at her.
So when I got back from Europe I was like, I don't wanna be on this,
I don't like this. And then I was like,
would you be okay if I tried medical marijuana? And he was like, sure.
So this was like end of 2018,
I started taking pills that were like 20 milligram C B d one milligram T H c
twice a day. Didn't have a seizure for 16 months. Thought I was cured,
living my best life. I moved out here January, 2019.
I was driving so happy and then like I,
I truly was like, oh I'm cured. Like that was, that was easy, whatever.
And then November, 2019 I was in a session with some friends and I had a seizure
music session. Yeah.
And I have like a voice memo of it when I'm having a seizure.
I can't say that I'm having a seizure. Like I can't find the words.
And they didn't know what was going on.
So they were trying to guess what was happening.
I guess I was kind of saying like, and they were like,
like they had no idea what was happening. They were like,
oh I don't know what I don't know.
And then eventually once I was out of it, they were like, oh.
And I told them and I sent it to my neurologist and he was like,
your friends are not very bright . I don't know, they just had no idea.
Do they know ahead of time that you had this issue? So that.
I wasn't really talking about it. I.
Mean it's pretty private I suppose.
I mean, well kind of. You watched the Kickstarter video? Yeah,
I kind of mentioned in that when I moved here. Yeah.
It was pretty easy at the time to pretend that I didn't have epilepsy because I
wasn't having seizures. I was taking the medical marijuana. So I was like,
oh why would I tell people about it? Like you know,
and it's this girl who's gonna be doing this documentary that I'm
gonna be working on with her.
We spoke a couple weeks ago and she was saying she didn't really tell anybody
about her epilepsy for a really long time. And somehow hidden,
even though hers like her,
she like convulses and stuff but she's just felt so embarrassed by it.
Which is really sad. And I get it because I've felt,
I don't know if embarrassed is the right word,
but like worried that I'm gonna seem burdensome,
broken. Yeah.
Or like worried that people don't wanna handle it and like are freaked out by
it. I was like dating and stuff.
I wasn't really telling people.
I mean I started dating somebody at the end of 2019 and we dated two years on
and off and I think I told him relatively early on because I was having seizures
again like right after we met. And I try really hard,
honestly I'm very open about it because I think it's, you know,
it should not be something to be ashamed of. Like it's not my fault,
it's a brain disease, you know? And I think there's just a lot that people don't
understand.
We like lived together during the pandemic at his parents' house and he was
incredibly supportive and not judgmental,
which meant a lot to me.
And he was very much there for me through a lot of, a lot of epilepsy stuff,
which I really appreciate. But you know,
it did definitely cause stress in our relationship.
Like when my epilepsy was getting really bad 'cause it was scary for him.
It was scary for me and it was, what do you think made it get worse?
So in 2020 I was still kind of pretending that I was healthy.
I had over a couple years,
like 2017 to 20 19, 20 20 maybe 2018 more.
I was kind of losing weight and I didn't really know why
and I like had no appetite but I was just like,
oh it must be like one of the antidepressants I'm on or like whatever.
And I was kind of fine with it 'cause I was like oh I look good.
And people kind of were treating me differently and it was,
which is annoying right now. I'm like one 40 and I got down to like one 15.
Yeah, that's a lot. No it was not good. It was not good but,
and 'cause like every time I took a bite of food,
I like felt like I couldn't breathe And we went to all these stomach doctors
over the years and they were just like, I don't know.
So I was living in Kansas City with my boyfriend at the time and
it was just getting worse. We drove, I remember like very specifically,
we drove from Missouri to New York in like June to see my parents
and I was in the fetal position the entire drive.
I just didn't understand what was going on.
And I was literally constipated for two weeks straight.
And I was like, something is seriously wrong. And you know,
any physical illness just exacerbates epilepsy.
Any sort of stress on your body exacerbates it.
So I came back to LA honestly spent most of,
I was with Roger actually all the time. Our mutual friend Yes.
Who was lovely and very talented.
We were hanging out every day and I was just like in the fetal position on his
couch or in the car or we went to Malibu one day and I was like in
unbelievable pain.
Got to the point where I was constipated for three weeks straight.
I went to a doctor. Were you having any movements? No. Okay. Nothing. Wow.
I went to a doctor that's very dangerous. Yeah.
And I went to the A doctor at U C L A. He was like,
well just like take some laxatives. And I was like, no,
something's like seriously wrong. And he was like, you're fine, whatever.
And then I ended up, eventually I,
my shoulder started really hurting and I was talking to my cousin and I was
like, I don't know,
I've been having these stomach issues and I don't know my shoulder like somehow
is injured. And she was like, wait, is it your left shoulder? And I was like,
yes. And she was like, something's wrong with your gallbladder.
Like that's textbook gallbladder if you have left shoulder pain
and stomach pain.
So I went to urgent care and the doctor there was like,
you're fine.
And I was like no you have to do a fucking ultrasound 'cause something is wrong.
And he was like, Ugh fine, whatever. I.
Hate that. I know so much.
No, he was totally not listening to me and I was like,
something is really wrong.
So I get this ultrasound and you know how like the people who do that,
they're not supposed to tell you things,
but she was doing the ultrasound and she was like,
I know that I'm not supposed to talk to you but you need to call a surgeon
like right now because your gallbladder's literally about to explode.
And she probably knows that you're gonna be.
What? Yeah. You.
Know, shoved off by doctors.
Well no once, oh god. Once they saw the pictures of my gallbladder,
they were like, holy shit, you need to get surgery. Like right now, what.
Is the gallbladder responsible for? That's the bile.
Yes. Yeah. So yeah, the bile duct, which that also got destroyed. But that's,
I'll get to that. So went back to New York, went to N Y U and.
That's laparoscopic. Yes.
It can be.
First of all, why is your arm in I, is it referred pain? The left arm? It's.
Just, yeah, I think it's just referred pain. Fascinating. It was really weird.
I, I truly thought that I like pulled a muscle. I was like, what is going on?
Mm-hmm. Yeah. So we went to this doctor at N Y U and I didn't even,
he looked at the pictures of the ultrasound and he was like, oh god, yeah I,
or maybe he even just looked at the report and he like scheduled the surgery for
like the next week gallbladder removal, which is a cholecystectomy.
Like it's supposed to be quite easy. It is usually laparoscopic.
Mine was laparoscopic.
But they also can do it open and honestly they probably should have done mine
open 'cause maybe they would've seen what was about to happen.
But it's basically they took my gallbladder out, I went home,
it's really not supposed to be a big deal.
And like a weekend I was just not doing well.
Like I felt honestly I kind of felt like I was dying,
which I guess I would have if we didn't do anything.
And I had a fever and we called my surgeon and he was like,
oh just stand outside it. It was like what December? Yeah. And I was like,
what? Then I think this was like seven days after, is this.
Not malpractice?
We wanted to sue and we thought that it was a seven year statute of
limitations and just found out it's only two and a half years and I just missed
it. Fuck. Which sucks we, we've talked to some lawyers about it,
but it is what it is.
My mom and I were driving to the mall and like I don't have the best memory
but there are some of these moments that are so clear.
Like we were driving to the the mole and she looked at me and she was like,
okay, your eyes are fully yellow.
And like I looked at the car mirror and I was like oh my god. Oh.
No. Yeah.
Liver. Liver. Yeah. Yeah. Liver shutting down.
And so we called the doctor and he was like, okay,
that's actually a serious problem. Like you need to come. Oh gee.
You think buddy? Yeah.
, you need to come back. By the time I got there,
my whole body was yellow. I looked like I'd been in the sun.
I remember the nurse being like, whoa, you are really jaundiced.
And you know, they took some blood tests and they're like, okay,
your liver's like totally blocked bile.
Looks connected to the liver bone. Right? Yeah. Is that how that.
Works? So it turned out that my bile duct was completely twisted,
which that's not supposed to happen obviously. Did.
That happen from the surgery or did that happen from the Yeah,
so when they pulled that puppy out they.
Something happened. Yeah,
something happened and they didn't realize it obviously. So this guy, Dr.
Haber who did a lot of surgeries on me after that,
but he was like, yeah there's probably just a stone stuck.
It's not a big deal. It'll be like 30 minutes. They do an E R C P,
which is an endoscopic procedure.
Somehow they can get from your mouth to your bile doctor, which.
We are just a tube, whatever. That's.
All we are. Yeah. and.
Technically that's what we are. We're a tube.
That is true. And so he, I go into this surgery, he's like, it's me 30 minutes,
like three hours go by and my parents are like, what is going on? What,
what the hell? And I wake up and I hear him, you know, I was really out of it.
But I hear him telling my parents like,
yeah her bile duct got kinked and like twisted.
So we had to put a stent in and we're gonna need to do
a, a fair number of these over the next year. And I just.
To expand the bile, the duct. Yes.
I just started sobbing 'cause I was like, are you kidding me right now?
And the stents were just hell for me.
So that was the end of 2020.
So through 2021 I got nine of those procedures.
All endoscopic.
Yeah. But the problem is, is like I don't,
the stents were just incredibly painful for me.
I got pancreatitis like three times. Which.
Inflammation of the pancreas, is that all that means? Or is that Yeah.
But pancreatitis is known to be like one of the most painful screaming fetal
position. Oh my god. I mean the amount of opiates.
And the pancreas is responsible for insulin.
I think so I should know this. Yeah.
That's, that's our insulin production.
Yes. And then.
So that must've been sending your blood sugars all over the map too.
I don't know so much. It was,
it was more my liver enzymes that were kind of going crazy. Um,
your.
Poor body.
Yeah. And then you know, obviously I started um,
having more like partial seizures and then in
July, 2021 I had my first like adult grandma mal
seizure. I hadn't had a grandma mal seizure since I was a baby.
It's actually called a tonic-clonic seizure.
But most people know it as grandma Mal. Yeah, grandma. Yeah. Um,
'cause I had this idea that that wasn't possible for me.
I had these partial seizures, I was still driving. I was like, uh, it's fine.
What does a grandma do to you?
That's like fully passing out convulsing for me.
I like stop breathing for sometimes like 40 seconds.
Yeah. Not good. And it was in, it was interesting.
My grandma had like rushed me to the hospital.
It was a couple days after I got my stent switch and I was like in extreme pain
and it turned out it was like infected and I think had fallen into my
small intestine. But we got to the hospital and I was like begging them for
morphine and I think they thought that I was a drug addict. Yeah, yeah.
And my grandma was like, no you don't understand.
She's been through all this stuff.
And they were kind of like ignoring us even though they were empty.
And the second they got me into the hospital bed,
I went into a full gram mal seizure. I think the pain was just too much.
And my body was like, okay, I can't do this. I'm shutting down bye.
And I woke up and my grandma was sobbing and it was just terrible
for everybody. It traumatized her.
It traumatized my parents who were on the phone when it was happening and they
like thought I was dying 'cause my grandma was like screaming and it was not
good.
But that day definitely changed my life
before I had had these partial seizures that like,
yeah they were annoying but like I could kind of get through
with them. Like I was, you know,
like I could kind of hide it and it wasn't like I could,
I have had a partial while driving and I was fine.
Like it didn't affect my motor skills. But once I had that grand mal,
I remember like being on the phone with my ex-boyfriend and
we were together at the time and just,
I don't think my life's ever gonna be the same after this. And
he was like, no, no I don't. I don't know. I just knew it was different.
So I stopped driving, I was living here and I was hoping, you know,
okay if I get, if I go six months without a grand mal, I can drive again.
And I was doing pretty well. Went home for Christmas break,
had a massive grand mal seizure at home. Thank God you were at home though.
Geez. I was in bed with my mom.
We were just like hanging out and I had been crying about something and then it
was just like, like it just,
I woke up to paramedics standing over me and I was like, what happened?
Whatever. And do you have siblings? I have an older sister, yeah. After that,
you know, my parents were like, you need to move back here.
You can't live across the country right now and be having these seizures.
Like this is not working. Um.
Meanwhile in LA you're trying to pursue your career.
Yeah, I really didn't do much in 2021 because of the stent surgeries.
I was honestly in bed in the pandemic 90% of the time.
I actually kind of stopped playing music in 2021.
They put me back on epilepsy meds after the gram mal seizure.
And the one they put me on called Vimpat was the only one that ever
didn't make me depressed. But it made me,
it made music honestly sound like nails on a chalkboard.
And I don't know why,
but I like stop listening to music, stop playing.
And that med also gave me debilitating anxiety and then like I switched
to another medication and blah blah blah.
And then I stopped them again and then I had that huge seizure and my parents
were like, okay, you have to come back.
If I remember correctly we're having some bouts of depression through this.
Who wouldn't really.
Oh my god. And yeah, it, yeah,
it was 2021 was a really rough year.
My ex kind of got me through the second half of that year.
Like we had broken up the first half of 2021 and then we got back together the
second half of 2021. And he was really supportive.
We were long distance but he was, you know,
we were talking every day and I was seeing him every couple weeks and that was
like the light of my life at the time.
And then January, 2022 we break up and
I get put on like a new epilepsy med and yeah,
my depression started going absolutely bonkers and I started
seeing this new neuropsychiatrist who I will not name because
I hate her.
She completely gaslit me and my parents and
told me that the side effects were all in my head and
that I needed to be on epilepsy meds and that I was not
a candidate for brain surgery. And she was just like,
you just need to suck it up 'cause you have to stay on these meds.
So in 2022 I went through like, oh my god, I don't, oh God,
I've been on 10 epilepsy meds total . Which is ridiculous.
They absolutely ripped my mental health to shreds to the point
where in March, 2022 my parents sent me to Sierra Tucson,
which is like a rehab facility, whether it's for sobriety, depression,
you know, and it, it was, I, I needed to be there like I was,
I was becoming very, very suicidal. I was not doing well.
And I went there and it was okay. You know,
I came back home and I don't know,
they put me on this other medication and I was sobbing every day.
And what was ,
what was ridiculous is it wasn't even stopping my seizures.
I was still having a partial seizure like once every three weeks,
which was what it usually was. Anyways.
So they kept switching the meds I got sent to multiple rehab
places. There was one in California that was a nightmare.
There was one in Nashville.
Rehab for your mental health or rehab for your brain.
Mental health, like an inpatient therapy thing. And I was,
the whole time I was like, this is not me.
But I was becoming so suicidal.
I was having a very hard time with the breakup because you know,
he had become my safe person. You know,
we were still talking but like we shouldn't have been.
And it got really messy.
Like there was this point in July of 2022,
my parents really wanted to go on on a week vacation,
but they were worried that I was gonna kill myself when they were gone.
So my ex ended up coming for a week.
That's a lot of pressure.
On him. Yeah, well my parents ended up paying him.
It was not a good situation for anybody.
Did you know that he was being paid?
Yes,
but I didn't really care because I was in the darkest place ever.
And I just was like, I don't know what to do. And it did not feel good.
It didn't, I, it didn't feel good for him either. Like it,
it felt awful for me too. Like it felt, I don't ever,
ever in my life wanna have to pay somebody to like be there for me
ever. That's the last time I ever saw him in person actually.
But we continued talking actually until quite recently,
like a couple months ago and we decided to go no contact but you know.
Were you taking the suicidal ideations to their
limits?
Um, before I went to Sierra Tucson I
had self-harmed and then cutting. Yeah.
So then in like
September I started at this really fucked up outpatient inpatient
therapy place in the city.
I honestly will say their name 'cause I hate them so much. It's called the dorm.
I lived at this place called Dwell and it was like run by two people who
literally were not mental health professionals.
It was an incredibly traumatic experience. Where.
In, in New York?
Yeah. When I was there I attempted twice and
like once in my room and then another time I like almost jumped in front of a
subway and then I was like, stop myself. And I ended up,
they ended up making me go to the psych ward that night and I was just,
I was just so done 'cause nobody was hearing me.
My neuropsychiatrist had kind of gaslit my parents into thinking that I was
crazy. Like I remember telling her and this neurologist,
they were at Columbia by the way.
It's not like they were just some random people. And I said to them,
I feel like I am about a thousand times more likely to die from suicide than a
seizure. And they were like, I don't know what to tell you.
I'm literally gonna end my life. Like I can't live like this.
Like these meds have stripped me of my personality.
I lost best friends.
One of my best friends who was like a best friend of mine for like eight years.
She couldn't handle it anymore. Yeah.
Most of my friends honestly weren't really,
a lot of them weren't really there for me during that time.
I forgive them because I was not me.
And it was getting really hard. Like it had been. Well.
You carried quite a burden on your own too, I feel like.
Of course. But like I, you know, so my and my ex was kind of,
I was still leaning on him really heavily because we just had become so
trauma bonded.
But like he was ready to move on and I was like,
I can't do this without you. And it just started getting really unhealthy.
Which like, God, if I could go back and change things,
I would, you know, I can't.
And we both really care about each other still.
And like, I hope he doesn't hate me. I don't think he does, you know.
But we basically agreed to go no contact for a year a couple months
ago after my brain surgery. And it's been really good for me.
Getting trauma bonded to somebody is not a joke.
Like if you go through really hard shit and you go through it with somebody,
my brain was like, you cannot do this without him.
And I met my current therapist in March of this year. This was,
I don't know, a really profound moment for me.
Like I was crying to her and I was like, I can't like live without him.
I can't do this without him. And she said, you can,
you just don't want to but you can. And like that kind of, I don't,
it honestly kinda shifted my perspective a little bit.
I actually do have a choice here. Even though my brain was telling me like, no,
you're gonna die without him. Things got really rough. Yeah. Like I said,
if I could go back in time I would.
But I'm very grateful for how much he was there for me during that.
And just anybody that was there for me. 'cause I know it was hard and yeah,
I lost a fair amount of people from my life.
Sickness is hard for people. It's.
Really hard. My personality changed.
That was like in 2022 'cause of the meds,
I became like I wasn't me anymore.
I didn't have like a light in my eyes anymore. I didn't have like,
like a sense of humor. I like, I was just like a shell. And yeah.
And also people go through their own stuff too. We were in a pandemic.
Totally. And people forgot.
How to human in a lot of ways. Yeah.
And I didn't have the energy or space really to be supportive. No.
Towards my friends. You.
Shouldn't have had to have been. Well.
But what you're saying is, is true is they were going through stuff too.
Mm-hmm . But I couldn't be there for them. And like I wish I could.
I was just trying to survive the day. Totally. I was just like,
I don't wanna be on this planet anymore.
Like if this is what my life's gonna be.
So then thankfully I met my current
neurologist, his name is Dr. Kuznick.
And this was actually like four days after I attempted suicide for the second
time. And my parents were like, come on, let's, like we got,
we heard good things about him. He's at Lennox Hill, let's just go see him.
And we went and he was like, oh my god,
this is not working. You need to get off these meds. This is insane.
They're not even stopping your seizures. You're trying to kill yourself.
What the fuck? I don't know why any doctor did this to you,
but we're getting you off of these and you're totally a candidate for brain
surgery. I have absolutely no idea what they were talking about.
In January, 2023, I went into the hospital for like,
um,
10 days and they took me off the meds while having me on an e E G.
And I had a seizure, which was what they wanted. Not a grand mal,
but they saw that it was coming from my left temporal lobe.
We started kind of prepping for brain surgery tests and the
withdrawal from the meds was rough. But about three weeks in,
my parents were like, whoa, you're like you again.
And it was like I was seeing my friends and they were like, oh my god.
And I'm so much more me now.
Like then I was still like really dealing with
everything. And this was a funny thing that my surgeon said. He,
I think this was before the second surgery.
'cause the first surgery was this thing called an S E E G,
which is actually torture and I would wish it on nobody.
It's an intracranial E E g. Basically they put you to sleep,
drill like 13 holes into your brain,
put electrodes in there and then you have to stay in a bed for like two weeks.
Not, not even allowed to get up to pee torture. And it's very painful.
But the reason they do it is so they can see exactly where the seizures are
coming from.
And I had a big seizure while I was there and they saw that it was coming from
my hippocampus. And the thing is,
so there's different options for epilepsy brain surgery,
like the most successful one.
But like biggest deal is them taking out a piece of your brain,
which I know a couple of people who have had that.
But when they discovered it was in my hippocampus, they were like,
if we take out a part of your hippocampus,
there's like a 90% chance you're not gonna have any short-term memory function.
And I was like, no. Like I'm not doing that.
Obviously there's lasering but they didn't have a good
spot and they wanted to do another S E E G and my doctor was like, no,
no we're not putting her through this again. We decided on the R N Ss,
which I have now,
which is a responsive neurostimulator and it's basically,
it's like this big that's.
What, four inches? Mm three inches? Yeah. I'm not good with that kind of thing.
I don't know. I have no idea. Size.
Of an okay symbol of your hand.
Yeah, a little bit bigger. Yeah. So they have to, you know,
on July 6th was my surgery and they have to cut out a piece of your skull and
put it in there and they drill in like a couple holes to put
two different electrodes in that will be sending electric signals like shocks
and stuff.
Are you awake during this procedure?
Hell no. That is such like a myth. And people ask me that all the time.
People always think that you're awake during brain surgery.
That's like very rare. Is it the.
Only time it's always on tv. They're like, all right,
say the alphabet and they're drilling away on something.
The only time you're like awake during brain surgery is if they're working on
something that is your language center for this. No, hell no.
They knew where it was gonna be put. Like they weren't taking out anything.
So what they just put it, lay it down on top of the brain.
Mm-hmm stick the little stickies in there.
Well like they go deep. Those go deep in. Yeah. It's like wires.
How do you wrap
yourself around the concept of all of this?
Somebody's rooting around in your cranium,
plucking little wires here and there.
I was so desperate at this point to get
away from anything with the medications that I was like, I don't even care.
Just do it. And I would do anything to get these seizures to stop. So,
and I honestly had so many surgeries at that point. I had,
I've had 13 in the past couple years that I was used
to it to like a disturbing degree. Mm-hmm .
Like I would just give my arm and I was like, yeah, whatever.
And just like put the IV in and give me propofol. Like,
and the amount of times that I've had to go through opiate withdrawal,
like so bad, so bad because I had to be on pain meds obviously.
But then I would end up being on Dilaudid,
which is very strong for like three weeks. And the.
Drug of poets.
. Yeah. That, that drug is crazy. Yeah. I don't know.
I think that I just kind of had to pretend it wasn't happening.
I just had to kind of be in, I don't know.
The only way is kind of just to be like, okay, this is happening. I'm doing it.
Like.
This device in your brain anticipates when your brain's gonna have a seizure.
How does it work? So.
It sends like, um, an electric shock. It's basically,
it's a neuromodulation device. It's trying to retrain the brain.
So anytime it's seeing like a spike in my brainwaves, in my hippocampus,
it's like sending a shock. It's like, hey, stop. Don't do that. Is.
It? This is gonna be a dumbass question. Is it battery operated?
Yes. I have to get the battery changed in like four years,
but that's not as big of a deal 'cause they don't need to like take out my skull
again. How.
Do they change the battery?
They just open the skin and put in a new one. Okay. So that's,
it's not a big deal. So.
Badass.
No . It's not like big.
A bionic woman over here.
Yeah, no, I, I like am a cyborg. Which is, which is wild.
Yeah.
And it's on the lowest setting right now 'cause they have to turn it up slowly.
Otherwise the opposite effect will happen. Which is like,
it can shock you into having a seizure. It's not a quick fix. It's a,
after one year people usually it's like an average of 70% decrease
in seizures after two. It's like 83% after three.
It's like 87%. Like it keeps getting better and better.
And what I really like about the R N Ss is it's reversible, you know,
brain surgery where you get a piece taken out. Like once that's out, that's out.
There's no going back. The R N Ss has only been around 10 years.
There's like only 10,000 people that have it.
And I actually have a matching tattoo with one of those people whose name is
Deandra and she is amazing. She's the one that has the ocular or it's,
it's in her occipital lobe.
We got this 'cause like lightning for lightning McQueen and like
shocking. And we also can't drive. So we were like, that's hilarious. You know,
there's still so much research happening,
just like medical research in general right now is like accelerating
at a very fast pace.
So like we don't know what the epilepsy treatment is gonna be in
10 years. 'cause 10 years ago this didn't even exist. Brain.
Is deep space. I,
I look to the brain as a is akin to deep space in the universe.
Yeah, it's it's very crazy. I have hope that in like,
you know, 10 years there's gonna be, that will definitely be different stuff.
And who knows like I, you know, and right now, like I had,
I had two seizures last week. They weren't gram mal seizures, but you know,
I'm already noticing the benefits.
'cause like in the past after a seizure I would be really depressed and tired
for like three, four days.
But last week the two seizures I had the next day I was totally fine.
Which was nice. And I downloaded it onto a computer every night.
I have like a wand and a laptop and I like download like I put the
wand on my head and then I like send it to them via an ethernet cable
so my doctor can see it is recording 24 7.
My doctor can see 24 7 ba It's basically a 24 7 e e g
in your brain that also like sends shock signals.
No one can ever kidnap you.
I don't know. You're.
Tracked. You can be tracked.
I don't know if it has like a location thing. Hmm.
Unless I had the computer. Maybe, but I don't, I don't,
that would be ridiculous if it was like a chip, like a cat or something. Yeah,
when.
It's like a little apple, there's a little tile is in there. .
I don't think they have a tracker in it that would,
I mean that wouldn't be like a terrible idea for like family members to have.
But no, I think that would be a little weird. That'd be a little too far. Yeah,
that wouldn't be great.
I mean I let my parents obviously have my location and whatnot. I mean,
just before I got to la literally less than 20, less than 48 hours before,
you know, song set jets. Yeah. I was at the one in New York.
I played it in August. It was great. And two days before I came here,
I was at the one in New York and I was watching my friend perform
and next thing I knew there was people standing over me and an ambulance
called and I had had a pretty bad grand mal seizure and I like smacked my head
on the floor. And now I have a concussion, which I've never had.
And I, you know, coming to LA for the month,
I really wanted to do a lot of songwriting.
But honestly a really big part of the past of the work I've been doing in
therapy this year is radical acceptance and just like
practicing anything. Like I'm getting a lot better at it and just,
I've been okay while I've been here this month because I'm like, you know what,
like I haven't really been able to song write this month 'cause my brain is just
not really up for it. And that doesn't mean that like,
I can't song write ever again.
It doesn't mean like if I move here when I'm 28 or 29,
it doesn't matter. There's no How old are you now? No, I'm 27. I just turned 27.
There's no time limit.
And it's really, you know,
tomorrow's three months from the brain surgery. Like it has not been that long.
I definitely have seen how like pushing myself
is filled with consequences when I push myself for a couple days.
I feel like really terrible after. And like Ill, and like,
like literally yesterday I laid in bed all day and today before you came.
'cause I was like, okay,
I know I'm gonna have this so I need to like mentally prepare by like doing
literally nothing. Yeah. I was diagnosed with,
with P T S D like a couple months ago, which understandably,
which obviously . I'd.
Be shocked if you didn't have that.
No, that'd be weird.
Is it, is it disrespectful to say shocked.
? No. . I didn't, no, I love that. I love a good pun . Um,
but yeah, I, I had, I remember I'd said to my surgeon, I was like,
I feel like I have, I'm gonna like have like I have P T S D and he, he said,
Lauren, you don't even have P T S D yet. Like you're still in the T S D.
He was like, you're not in the post yet. Yeah. Like it's,
you're not even there yet. Yeah.
And like honestly he was right because like I was living in survival mode and
then two months ago,
kind of once I was out of the surgery and going up these nightmares
have started that like, you know,
it's the stereotypical P T S D thing of having like the same two
nightmares like over and over.
It's either I'm like trapped in a hospital and like locked
in a hospital room and like no one can hear me. Or I'm like,
the other one is like,
I'm being sent to like some sort of rehab place and everybody thinks I'm crazy
and no one will listen to me that it's the epilepsy med.
And I had a dream the other night that I was like locked away in like a jail
kind of thing. And when I wake up from those dreams,
it's incredibly distressing. It takes me like an hour to kind of like be like,
okay, that's not real. Like that's not happening anymore.
And also recently my anxiety levels have been bananas.
It's really annoying. And yeah, I'll be like to my therapist or psychiatrist,
I'm like, I don't know why I'm so anxious recently. Like, ugh. And they're like,
what do you mean? It would be weird if you didn't have anxiety right now.
I would be freaked out if you didn't have anxiety right now the thing about
epilepsy is just, it is not predictable. Yeah.
So right now I'm having a lot of anxiety every day of like,
when am I gonna have another huge seizure? They, my doctor,
I spoke to her the other day and she was like, okay,
it's time to turn up the device because you're like having a lot of seizures.
So when I go back to New York, we're gonna turn it up,
which they basically just like put a wand over it and they're like,
they like click a button and they're like, okay.
Oh that's nice. They don't have to get in there. Yeah. Oh.
My god. Hell no. No. That'd be fricking crazy. Like put a zipper up there.
Hell no. No. Um, but.
And your hair's growing back, although it looks super cute short.
Yeah, you know, it's kind grown on me. Um, you.
Kind of have a Sarah McLaughlin nineties vibe.
, so I was wearing a wig a lot.
But honestly and I'm sure he'll end up listening to this podcast,
but I've told him this, this,
I've been hanging out with a guy while I've been here first thing since having
that long relationship and it's been really good for me.
And honestly he has really helped me get comfortable with his hair because
one of my biggest worries with it was like,
no guy is gonna be attracted to me with this hair.
And on our first date I wore a wig and then the second time we hung out I was
like, I don't feel like wearing this like five pound wool hat right now.
And he was like, I don't care. And he was like, you look beautiful. What?
Someone can be attracted to me and interested in me like with this hair.
And it, it kind of changed things. I haven't really put a wig on since hanging.
Good.
You look beautiful. Thank.
You. He's not the only one that thinks that ,
but I'm a I appreciate the fact that you said so. Yeah.
It just kind of.
But I get it. I get that it was,
it's gotta be bizarre to go from having your hair to suddenly having no
hair then to have to Oh, very upsetting.
And femininity in this culture is wrapped. No, that's.
Wrapped.
Wrapped up in hairs. What I.
With and I, what's,
what's been interesting is I honestly didn't really use to wear makeup much,
but I've been wearing it every day because your eyes look great. Thank you.
I've gotten,
I've gotten better at the wing letter 'cause I'm been doing it every day.
Gonna teach me how to do that. Oh my god, it looks really good. My.
God, . But, um,
I just find that it helps me connect to my femininity a little bit and helps
me feel better about my day and stuff. Like when I don't wear makeup,
I feel like I kind of look like a young boy, which is fine.
My femininity definitely is something that's important to me,
which there's nothing wrong with that. I like feeling like a girl. Absolutely.
You know, and definitely cutting the hair, I was like, oh my God,
I look like a fricking egg. Yeah. It's getting to a better length now.
Like it looks, it looks purposeful. Before it was kind of like,
the scar was like really visible and like, it was kind of like a patchy,
like buzz cut going on.
But I I've had multiple people approaching me. I love your hair.
Hmm. And I'm like, you know, it was not a choice, but thank you. Anyways. Yeah.
And I, I have a couple friends including Roger, who are like, no,
you never grow it out. You have to keep it like this forever.
It's super cute. But upkeep on short hair. I had hair very,
very short at one time and really, and I loved it,
but the upkeep is a pain in the ass.
Oh. I feel like this is the easiest hair I've ever had.
Yeah. I had to cut my hair every three weeks it felt like. Oh.
To make it stay in shape.
Right. Well that's fair. But the everyday care is so minor.
Oh, for sure. I just put a little gel on it and I'm like, okay, . Yeah.
I'm, I'm really interested.
I think it'll be fun kind of to see like the different phases of growth.
Like it'll,
when it gets like more a little bit moldy and then it'll be kind of like.
Pigtail time, like a.
Like a short bob kind of thing. Mm-hmm. But the other night I performed, um,
at writer's block and I played on a stage without a wig for the first time,
which was a big step to get up there with this hair,
which just feels like so vulnerable.
I felt good for some reason when I'm wearing a wig,
I feel like I'm not being genuine, even though that's not really true. Like,
we don't realize like celebrities are wearing wigs in like literally everything.
Mm-hmm. true. Like, we don't know. And it's,
or they either have extensions, like none of them, it's not,
they don't all just have magically like thick, long hair.
Hair. No.
'cause they've been beating their hair to death for years and so most of them
are probably thinning. Oh.
Yeah. Honestly, neither have wigs or whatever, but yeah, I don't know. But I'm,
you know, I'm finally playing music again. And let's talk about the.
Kickstarter.
Yes. Yeah. You know, I was,
I like honestly never thought I would do one and it's for.
A record.
Yes. I have a lot of songs that I've written since, you know,
2019 that I really love and I've wanted to put out music for a long time.
But, you know, I got really, really sick and it just,
the time I kept getting more sick and more sick and it was just not happening.
And like before brain surgery, I was just like, after this, like,
I am recording an album. Like I want to put these songs out there.
I'm not letting this destroy my life anymore.
I'm not letting this disability stop me from like,
continuing with my passion and the thing that I love. And I, yeah.
So I felt kind of weird about doing it and I still feel a little weird. It's,
it's a little un it's so uncomfortable asking people for money. You know,
I haven't been able to work for years, so I haven't been able to save up.
And I was like, you know what? I have been through enough.
This is okay, I can do this. And I posted on my birthday,
which was October 1st, and the first day was insane.
It got up to like 8,000 out of 20,000,
which was the the best birthday gift ever.
And made me feel really supported and like,
people are excited to hear my music and I'm so excited to share it.
I already kind of have the producers that I'm gonna be working with,
and one of them is in Nashville and one of them is in New York.
And who do you have in Nashville? Um, her name's Elise Hugo. She's great.
She's really great. And this guy Colin Rowe in Brooklyn, who,
he actually just moved from Nashville.
The person that is going to master it has done like little big town stuff like
that. So it, it's, I'm really excited.
Well tell people how they find you.
I guess maybe the best place right now is Instagram, which is just my name, uh,
Lauren Reiner, r e i n e r.
They can reach me on email at lauren
reiner@gmail.com. And yeah, I mean,
I'm on the, you know, normal socials like TikTok, Facebook, blah, blah, blah.
But I would say that I do the most posting on, on Instagram. And.
Your Kickstarter is accessible through.
Yes, it is in the link in my bio.
Great.
Yeah.
Lauren, thank you.
Thank you for having me. , you're.
A trooper.
, thank you. I, I'm trying.
A lot of people wouldn't have survived all of that.
Yeah.
I.
I didn't think I would. I, you know.
Yeah. I just, I hope that you leave room to, to realize that about yourself.
Yeah. I,
I've been working on it and it's definitely been like the self appreciation
and respect has kind of gotten better as I've gotten a little bit further away.
I'm like, oh shit, actually, I'm like really strong for getting through this.
This is kind of insane. Yeah. Um, yeah, absolutely. Yeah.
I'm sure your family is thrilled. I'm glad you're still here.
Yeah, no, of course. Mm-hmm.
, welcome to your new life.
. Thank you. Thank you for having me.
Maybe get yourself a cute helmet so you don't get a concussion.
Oh yeah. I've honestly thought about that,
but I don't wanna walk around wearing a helmet.
Yeah. Maybe like a little plate inside the wig or something.
No, I was, I think there are beanies that have like
a helmet kind of insert, but I don't wanna be living in fear. I don't know. Oh.
I get that. You know, what about a service dog that is trained to smell your,
your chemistry changing before a seizure?
I've watched so many tos about those dogs. Yeah.
They're amazing. But I, it is a huge responsibility,
like huge to have a dog, obviously. And I'm not sure that I.
But they're supposed to be taking care of you.
I know, but you also have to take care of them. Of course.
Like going on like multiple walks a day and paying for food and like, you know,
I'm just like, I don't know if I, if if like,
if a dog genuinely could sniff like five minutes
before I was having a seizure, that would be incredible. That's what they do.
I don't know. I'll ask my doctor about it. I'll send you some tos.
Yeah, definitely send me some tos. I would love, I would love to see them. Yeah.
Yeah. All right, love. Thank you.
. And thank you for listening everybody. Bye.
Bye. .
Rate review and subscribe to Hey,
human podcast on iTunes or wherever you get your podcast. Thanks. Bye.