MrBallen’s Medical Mysteries - Ep. 76 | Stage Fright
Episode Date: March 18, 2025When a high-achieving teenager suddenly starts to freeze up in social situations and her grades plummet, her mother tries to get her help. But doctors can’t explain why the girl is suddenly... struggling to do ordinary things like talk. Before long, she’s a shell of herself… and her mother fears that soon there may be nothing left.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.
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In the summer of 2009, an 18-year-old girl loaded up the family minivan and shut the trunk.
Then she squeezed into the backseat beside boxes of dorm room decorations and school supplies.
Up front, her parents buckled in and her dad made a lame joke about being aboard the College
Express.
But before they made the journey from their home in the New York suburbs to a New England
college town, they had to make a stop.
They drove down a cul-de-sac where the girl had spent so much time as a teenager and stopped
at a small White House halfway down the street.
As the minivan came to a stop, the girl's best friend shuffled blankly out the front
door guided by her mother, who waved enthusiastically.
The girl got out of the van and went to hug her friend, who just stared at the ground
vacantly.
The girl reminded her friend that she was off to college now, but she'd be back for
Thanksgiving and they'd watch movies together like old times.
But the friend just gazed down at the sidewalk, hollow and distant, almost like a ghost.
The girl wanted to shake her friend and just tell her to snap out of it, but just the thought
of that made her want to cry because she knew that would do no good.
Not that long ago, her friend had been on track to be valedictorian of their class,
and she had a potentially bright future as a ballet dancer.
The girls had planned to go to college together,
but now the girl would be going alone.
And the next time she came home,
she didn't know how much of her best friend would be left.
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I would define reclaiming as to take back what was yours.
Something you possess is lost or stolen.
And ultimately you triumph in finding it again.
Listen to Reclaiming with Monica Lewinsky
wherever you get your podcasts.
From Ballen Studios and Wondry, I'm Mr. Ballen and this is Mr. Ballen's Medical Mysteries,
where every week we will explore a new baffling mystery originating from the one place we all
can't escape, our own bodies. So if you liked today's story, please secretly put an entire pound of confetti in the Follow
Buttons leaf blower, so when it goes through yard work, it blasts a colorful surprise all
over their lawn.
This episode is called Stage Fright. In the spring of 2007, 16-year-old Lilly Kim sat in her school's auditorium watching
the annual talent show.
She clapped when the lights came up on her friend Joy Summers, who was dressed in a white
tutu.
Lilly turned to Joy's mom, Frances, who was sitting beside her and beaming with pride.
Joy was a classically trained dancer, she'd been performing her entire life, and Lily
had almost always been in the audience, cheering on her best friend.
She loved watching Joy perform, and she knew that Joy loved being on stage.
When the music started, it was like Joy came to life.
Lily sat on the edge of her chair, watching Joy turn pirouette after pirouette, then leap
into a graceful mid-air split.
The whole audience broke into applause even though the music was still playing.
Lily watched excitedly as her friend moved towards the lip of the stage, preparing for
her biggest move of the whole performance.
But right as Joy was about to rise up on the tips of her toes to begin this maneuver, she
seemed to just freeze.
It was like Joy was suddenly suspended, like time had stopped on stage.
Lily leaned forward, searching her friend's face for some sign of what was going on.
But Joy just stood there, flat footed, looking at the floor like she couldn't remember how
she got on stage in the first place.
Lily and Joy's mom exchanged worried glances.
Over the past few years, Joy had frozen up like this a few other times.
She just suddenly stopped whatever she was doing and stared off blankly into space.
But it had never happened while she was performing on stage.
Lily felt so bad she was about to jump out of her seat and run to her friend, but before
she could, Joy's mother had already gotten up and begun moving down the row of seats towards the center aisle.
Lily started to hear the murmurs filling the auditorium over Joy's music which was still
playing.
Some people clearly seemed worried like something might be wrong, but others were obviously
mocking the ballerina who couldn't seem to remember her dance.
And their mean comments made Lily's blood boil.
Lily watched helplessly as Joy's
mother walked up the aisle to the edge of the stage where Joy still stood motionless.
Francis began tapping Joy's foot until Joy finally looked down at her and seemed to snap
out of whatever had made her freeze. When she did, a mixture of applause and laughter
filled the auditorium as Francis pointed her daughter toward the side curtains and Joy quickly hurried off stage.
A few days later, Lily sat next to Joy in history class, taking notes as their teacher
peppered the students with questions.
Lily was a bit nervous.
Normally, she and Joy studied history together, and Lily could rely on her friend to figure
out the more challenging parts of the lesson.
But after what had happened at the talent show, Joy had not been in the mood to get
together.
And now it seemed like Joy wasn't paying any attention at all.
Normally she would closely follow along and raise her hand to answer questions, but now
she was just sitting there staring blankly like she was totally zoned out.
And then when the teacher actually called on Joy to read a passage from the textbook, Joy just sat there saying nothing. Lily could see her
friend was having another freezing spell, and so quickly she reached over and tapped Joy on the
shoulder trying to shake her out of it the same way Joy's mom had done at the talent show.
And after a few seconds, it worked. Joy shook her head like she was just getting startled out of
her sleep and couldn't remember
where she was.
Lily quietly showed Joy the spot in the textbook where they were.
Joy nodded and began reading out loud.
Except Joy's speech was slow and she stumbled over easy words and stuttered.
But Joy was an honor student and she had never had trouble reading aloud before.
Lily gave Joy a sidelong glance.
Something was clearly wrong here.
But when Joy didn't seem to react to Lily's stare, Lily just looked up at the teacher
as if to say please call in somebody else.
Finally, after what felt like an eternity, the teacher asked Joy if maybe she wanted
to stop and step out of the room for a minute and get some air.
Joy nodded, and as she got up, the teacher called on Lily to start reading.
Lily picked up where Joy had left off, and as she did, out of the corner of her eye,
she watched her dazed looking friend leave the classroom.
Joy didn't return for the last fifteen minutes of class.
So when class ended, Lily packed up Joy's belongings and went to go find her.
Lily left the classroom and walked down the locker lined hallway but didn't see Joy anywhere.
But then up ahead she saw two girls exiting the bathroom snickering at something they
had just seen.
Lily picked up her pace and at the same time felt a sinking feeling in her stomach.
She knew these girls could be laughing about Joy.
Lily opened up the bathroom door and sure enough there was Joy.
She was standing at the paper towel dispenser with a massive wad of paper towels bunched in
her hand and more paper littered the floor all around her feet. Joy had been methodically ripping
paper towel after paper towel out of the dispenser and just throwing them on the ground like she had
no idea what she was doing. But what really scared Lily was actually Joy's expression as she did this.
She was completely blank faced. She was just staring at the wall and pulling out paper towels
over and over again, seemingly unaware that anybody else was in the bathroom.
Lily didn't know what to do. It was like her friend was possessed or something.
She walked over and tapped Joy on the shoulder like she'd done in class, but this time Joy
didn't seem to even notice.
It was chilling.
Whatever was going on with Joy, Lily knew it was more than just zoning out.
A couple seconds later Joy did snap out of it, and as soon as she did, she couldn't remember
any of it.
It was like her memory had gone completely blank.
A few weeks later, near the end of the school year, Joy's mother, Francis, was upstairs changing into her running clothes when she heard the front door open. Joy was home from school.
Francis called out hello, but in return she heard a loud, heavy sob. It startled Francis.
She ran downstairs to find Joy in the kitchen,
sitting at the table and crying into her hands. Joy began unloading to her mother. School used
to be easy and fun for her, but now it was miserable. She'd failed another exam and she
was in danger of flunking some of her classes. Plus, other students were starting to make fun
of her for these weird zoning out spells she was having.
By the time Joy had ran out of tears and breath, all Francis could do was hug her daughter.
She was shocked.
She didn't realize that Joy had been zoning out so much at school, or that she was struggling
in school.
Francis almost felt mad at herself for not seeing how bad things had gotten.
And so she decided she would make an appointment with the school and talk to some of Joy's
teachers before summer vacation started.
She needed a clearer picture of what was going on.
The following week, Frances sat at a small conference table at Joy's school.
A few of Joy's teachers were sitting there too, along with the school's psychologist.
Frances recognized a few of the people from parent teacher conferences where they had all told her that Joy was a pleasure to have in class
and deep down Francis hoped they'd just say the same thing now. She wanted them to assure her that
Joy was doing fine, that her recent behavior was just normal teenage mood swings. But that didn't
happen. Joy's AP biology teacher told Francis that Joy was struggling, academically and socially,
and her behavior was alarming to the staff, who knew Joy as a bright, engaging student.
She wasn't keeping up with her work and never participated in class anymore.
She seemed overwhelmed a lot of the time, it was almost like she was shutting down.
The other teachers around the table just nodded their heads solemnly.
Joy's history teacher eventually chimed in, saying that Joy was actually struggling just
to read out loud, and that it was really alarming to hear an honors student struggle to sound
out common two-syllable words.
Francis was so shocked by what Joy's teachers were telling her that she struggled to say
anything in response.
That's when the psychologist suggested that maybe Joy's struggles were not really academic.
Maybe they were more psychological and Joy would benefit from therapy.
However, Frances was skeptical.
She didn't think that counseling would necessarily fix Joy's problem.
Whatever was happening to her daughter appeared to be more of a physical issue than a psychological
one.
By the time Frances left the meeting at the school, she decided to take Joy to see a doctor who could help figure out what was going on.
Several months later, in the fall of 2007,
Frances sat beside her daughter in their dining room having dinner. For dessert,
they enjoyed some leftover cake from Joy's birthday the week before. It had been a quiet affair.
Last year, for her sweet sixteen, Joy threw a big party with all her friends.
But this year, they had just celebrated with one friend, Lily, who'd been the only friend
to stick by Joy since her freezing episodes had started last spring.
After Frances had had that meeting with Joy's teachers, she had taken her daughter to see
a doctor.
Specifically, she had taken her to a psychoneurologist, which is a doctor who specializes in the relationship
between the physical state of the brain and how it affects human behavior.
And that doctor, to start with, had given Joy a standard test to measure intellectual
ability.
And the results were surprising.
Although Joy was having issues with memory and with language while she was in school,
the test results showed only minimal impairment in those categories, so the mother and daughter
had gone home without any real answers.
But the psychoneurologist reassured them that it did not seem like Joy was dealing with
anything really dangerous such as brain cancer.
However, over the course of that summer, Joy's behavior had grown even stranger.
Her staring spells had gotten longer
and they were happening more frequently
and she developed an even more disruptive behavior,
uncontrollable laughter.
Joy would just start laughing out loud for no reason
and she would have no idea what triggered it.
And then one evening,
after Francis came home from a workout class, she found Joy in the
kitchen and she just looked different.
It took Frances a moment to realize why.
The right side of her daughter's face was drooping, like she'd lost all muscle control
on that side of her face.
Frances knew that a drooping face is a telltale sign of a stroke, and so immediately she brought
Joy to the hospital, but a stroke was ruled out.
And in fact, other than her daughter's droopy face, she really had nothing else wrong with her.
And so between her daughter's concerning behavior, downward spiraling self-esteem,
and social struggles, Frances had decided to pull Joy out of school before the fall term started.
Now, Frances knew she would have to homeschool Joy now that she was out of school and so
she anticipated teaching Joy some of her advanced courses.
But Joy's intellectual struggles had grown so severe that she could barely even handle
a remedial course load.
And so the bright, vivacious girl with a bright future who'd taken the dance stage just a
few months earlier was nowhere to be seen.
And now, sitting at the dinner table, it made Frances unbelievably sad to watch her daughter
push her leftover birthday cake around her plate with the right side of her face completely
slack.
It always looked like she was frowning now, which Frances knew mirrored the way Joy very
likely felt.
But just then, Joy suddenly dropped her fork and sat upright.
She whipped around and scanned the room like she was expecting to see someone.
Before Frances could ask what was wrong, Joy started talking.
But not to her.
Joy wasn't even looking in her mother's direction.
Instead, Joy was basically staring at the wall, having some sort of heated discussion
with some imaginary person in the corner who apparently was making fun of her.
Frances didn't know if she was witnessing a mental breakdown or some kind of a seizure,
but she knew Joy's problems were now too extreme for her to manage.
Her daughter was in urgent need of help, and so Frances raised to call an ambulance. Hey, I'm Mike Corey, the host of Wondery's podcast Against the Odds.
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After the ambulance brought Joy to the hospital, the next few weeks passed by in a blur. Upon arriving, Joy was admitted to the hospital for testing to figure out what was causing
her delusions.
It took a few days, but Joy's doctors finally diagnosed her with schizophrenia, a serious
mental health condition that can cause hallucinations, delusions, and disorganized thinking and behavior.
From a medical perspective, it actually made sense to Joy's mom.
The doctors explained that schizophrenia often manifests around this time in people's lives,
as older teenagers or young adults.
But still, the diagnosis crushed Francis and caused Joy to burst into tears.
Schizophrenia is a chronic, debilitating disorder, and Frances knew that Joy would be managing
it for the rest of her life.
Following Joy's schizophrenia diagnosis, her doctors transferred her to the psych ward
and put her on antipsychotic drugs to help reduce her hallucinations.
However, although they tried several different medications, none of them worked.
Joy still zoned out for minutes at a time and hallucinated faces right there in the
hospital room.
She still burst out laughing at random moments.
And one side of Joy's face was still drooping, which didn't even seem like a problem that
would come from schizophrenia.
And so the doctors ordered extensive blood work to try to rule out the possibility that
maybe her hallucinations were being caused by something else, like an infectious disease
such as Lyme disease.
But all of Joy's blood work came back normal.
Next, doctors explored the possibility that there was something going on in Joy's brain
in addition to schizophrenia.
So a neurologist ordered an electroencephalogram, or EEG for short,
which is a test that detects conditions like epilepsy and brain tumors by measuring the
electrical activity in the brain. By this point, after several weeks of being in the hospital,
Frances really didn't know what to think. Did her daughter have schizophrenia, which was bad enough?
Or was it possible Joy had something even worse? Francis was just so anxious about her daughter.
But the EEG didn't provide any answers either. When the doctor came back with the results,
they were completely normal. Francis told the doctor that she was beyond confused. Based on
the battery of tests they'd run on her daughter over the past few weeks, her daughter was physically
fine. Her brain activity was normal.
And so Francis was beginning to doubt that Joy even had schizophrenia, especially since
none of the antipsychotic drugs had made any difference.
It just sort of felt like there had been weeks of hospitalization here and nobody has a clue
what's going on and Joy's condition was completely unchanged.
So what was the plan here?
The doctor nodded sympathetically to Francis, but then told Francis that the plan was they
were going to commit Joy to the hospital indefinitely until they could figure out what was actually
going on.
Instinctively Francis stepped in front of her daughter.
It was like something had snapped inside of Francis.
There was just no way she was going to let her daughter just languish here indefinitely.
And so she told the doctor no, and then turned to Joy, who looked terrified, and she assured her
daughter that nobody was keeping her in a psych ward against her will. The doctor's face was stern
as she asked Francis to reconsider, but Francis put her foot down. If they didn't have answers
by the end of this week, she was taking Joy back home.
About six months later, in May of 2008, Francis finished setting the table for dinner.
Joy was already seated, staring at the dining room wall.
Francis fixed Joy a plate of food and slid it over to her daughter, knowing that Joy very likely wouldn't even eat a single bite.
Joy was in one of her freezing spells that seemed to go on forever these days.
Over the last six months that Joy had been home from the hospital, her condition had
not improved.
But Joy was lucky to be home at all.
A week after Francis had rejected that doctor's advice, she had found out that the doctor
was planning to take Joy's case to probate court to try to force Joy to remain in the
psych ward.
Francis had to bring a lawyer to the hospital to get the doctor to back down.
The entire incident still made Francis sick to think about.
And Francis was especially angry because the hospital doctors never even agreed on what
was actually wrong with Joy.
Her neurologist believed it was a psychiatric issue, even though the schizophrenia medication
hadn't helped, and the psychiatrist thought her problem was neurological, even though
there didn't seem to be any physical issues with her brain.
It broke Francis' heart to see her daughter like this.
Joy had once had such a bright future, and now she was listless and often hopeless.
Sometimes her old friend Lily would come over and the girls would watch a movie together,
but Lily always left the house looking very sad.
Frances knew her daughter needed more medical help, but she really didn't know where to
turn.
A few weeks earlier, she'd taken Joy to a different medical center where neurologists
had performed more tests, including extensive testing for epilepsy.
They thought Joy's freezing spells might actually be seizures. But Joy didn't have any freezing spells while they were at the medical center,
so the doctors weren't able to monitor and diagnose them. They did take images of her brain
with an MRI machine, but it came back normal. It had been another disappointing trip.
And so now, Frances felt like they were back to the drawing board.
She took a bite of dinner and watched her daughter, who seemed off in her own world. Frances was desperate
to understand what was going on with Joy, but an answer seemed further off than ever.
More than a year later, in August of 2009, Dr. Kian Farsi sat in his examination room across from Francis and also Joy, who
was now 19 years old.
Dr. Farsi was a neurologist at a hospital in New York City, and he specialized in tricky
diseases that other doctors couldn't figure out.
And he had to admit, whatever was going on with Joy definitely fit the bill.
As Dr. Farsi talked to Francis about her daughter's baffling condition, he kept glancing up at
Joy's face.
It was drooping on one side, a symptom that had started after her freezing spells had
begun.
And while the freezing spells had sort of become the thing Joy and her mother most focused
on when talking about her symptoms, to Dr. Farsi, the symptom that stood out the most
and likely was the most consequential was actually the drooping face.
And so Dr. Farsi asked Francis and Joy if anybody else in their family suffered from
schizophrenia or another mental illness, and Francis said no, which confirmed Dr. Farsi's
suspicion.
He told Francis and Joy that Joy's quick deterioration was uncommon for patients with schizophrenia.
Also facial drooping is uncommon in schizophrenics.
To him, facial drooping was evidence that Joy's problems were physical, not a sign
of mental illness.
Francis frowned and shook her head.
She told Dr. Farsi that Joy had already been given an MRI and an EEG and neither showed
that there was anything wrong with her brain physically.
The doctor knew this, but told Francis he had a theory.
He thought that Joy may have suffered neurological damage that causes a particular kind of inflammation
in her brain.
EEGs and MRIs would not necessarily pick up on this kind of inflammation, and so he wanted
to run some tests on a bit of Joy's brain tissue.
To do this, he would need to perform a surgical procedure known as a biopsy to collect a tissue
sample from Joy's brain.
Frances winced at the idea of somebody removing a bit of her daughter's brain, and she told
the doctor that she was very reluctant to subject her daughter to more procedures.
But if he really thought this biopsy could lead to answers, she was willing to trust
him.
A few weeks later, the results of Joy's brain biopsy came back, and finally, Frances and
her daughter had some answers.
Dr. Farsi was relieved to see that his hunch had been right, though the diagnosis was still
frightening.
The lab had tested Joy's brain tissue for numerous rare autoimmune diseases, and the
results had come back positive for one that was extremely rare, even by Dr. Farsi's standards.
Joy had an extremely rare autoimmune disease called GAD autoantibody syndrome, a condition
where antibodies that usually protect the brain began attacking it instead.
Specifically, antibodies in Joy's brain were attacking a crucial brain chemical that allows
brain cells to talk to each other.
As a result, Joy's brain didn't have enough of this chemical, called GAD enzymes, and
her thoughts were becoming less and less organized.
This is why Joy experienced seizures, hallucinations, and cognitive decline.
While other doctors assumed
these were the symptoms of schizophrenia, Dr. Farsi had seen the whole picture and realized that the
deeper problem was the chemistry inside of Joy's brain. It was a remarkably observant diagnosis.
Joy's previous doctors probably did not think to even test her for GAD-Autoantibody Syndrome
because Joy was a very special case.
She was the first documented patient to have the disease present as a mental illness.
Dr. Farcy told Francis that he wondered if there were more patients like Joy out there,
who were diagnosed with conditions such as schizophrenia but were actually suffering
from GAD-Autoantibody Syndrome.
But for the moment, Joy was the first.
After Dr. Farsi cracked Joy's case, he found at least five other cases that were similar
to hers.
The medical community still doesn't know what causes GAD autoantibody syndrome.
But Joy's biopsy revealed that her brain had been under attack for years.
Many of the nerve cells in her brain had been damaged.
Unfortunately, the damage to those nerve cells was irreversible.
However, Dr. Farse was able to put Joy on medicine to bring down the inflammation in
her brain.
He also had her undergo a procedure in which he replaced her plasma with saline to clear
her blood of harmful antibodies.
And after these measures were in place, Joy did begin to improve.
She became more communicative and experienced fewer hallucinations.
While she'll never regain the cognitive function she lost, Dr. Farsi's treatment plan has
kept her from further decline and saved her from what he called a death sentence while
still alive.
For several years following Dr. Farsi's treatment, we know that Joy lived with her mother and
worked on regaining a sense of normalcy. However, we don't know if she ever finished high school
or was able to ever live independently.
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From Ballin Studios and Wondry, this is Mr. Ballin's Medical Mysteries, hosted by me, now. And a reminder, the content in this episode is not intended to be a substitute for professional
medical advice, diagnosis, or treatment.
This episode was written by Aaron Lann.
Our editor is Heather Dundas.
Sound design is by Andre Plouce.
Our senior managing producer is Nick Ryan.
And our coordinating producer is Taylor Sniffin.
Our senior producer is Alex Benedon.
Our associate producers and researchers are Sarah Vytak and Tasia Palaconda.
Fact checking was done by Sheila Patterson.
For Ballen Studios, our head of production is Zach Levitt.
Script editing by Scott Allen and Evan Allen.
Our coordinating producer is Samantha Collins.
Production support by Avery Siegel.
Executive producers are myself, Mr. Ballen, and also Nick Witters.
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Senior producers are Laura Donna Palavota and Dave Schilling.
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Our executive producers are Aaron O'Flaherty
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