Episode Transcript
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0:00
This Is Actually Happening features real experiences
0:02
that often include traumatic events. Please consult
0:04
the show notes for specific content warnings
0:06
on each episode and for more information
0:08
about support services. [♪
0:10
music ♪ I
0:17
was feeling as if I were
0:19
underwater. And everything
0:22
underwater is like
0:25
slow and dark and heavy.
0:28
I couldn't find the right
0:30
words to convey, I'm under
0:33
the water. I need somebody to pull me
0:35
up. From
0:45
Wondery, I'm Witt Misseldein. You're
0:48
listening to This Is Actually Happening.
0:51
Episode 312. What
1:01
if you believed your love could cure him?
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Prices vary based on how you buy. I
2:49
had the good fortune of being raised
2:51
by hippies. My
2:54
dad came to Bloomington, Indiana
2:56
for college where I was
2:58
born. He was
3:01
from a farming family. He
3:04
was someone who wanted to look
3:06
at the world differently and live differently
3:08
than his parents. He
3:11
really tuned into the
3:14
spiritual hippie movement.
3:17
He got all the way to his senior year of college
3:19
and he dropped out. He
3:22
had already met my mom at that point. They
3:25
actually fell in love on an acid trip.
3:28
They were drawing circles on a piece
3:30
of paper and their circles connected and
3:32
that's when they both knew that they
3:34
were meant to be with each other.
3:38
My mom also, you know,
3:40
it's kind of a similar background in
3:42
that she came to IU for college,
3:45
started a degree and then dropped out with
3:48
my dad to go live on a commune.
3:51
My mom came from a very working class
3:53
background. Her dad was a truck driver and
3:55
her mom was a nurse. And
3:58
she also had a... a
4:00
just kind of deep-seated sense
4:02
of spirituality. And so my
4:04
mom and dad came together
4:07
and completely abandoned the dreams
4:09
their parents had for them.
4:12
And it did cause some fallout for both of
4:14
them. My
4:16
parents kind of created a family
4:19
with their friends, their group of
4:21
hippies. So I often say I
4:23
was raised by a pack of
4:25
hippies because the people who my
4:27
parents ended up forming an intentional
4:30
community with ended up really raising
4:32
me. There were
4:34
so many people who were
4:36
really deeply invested in me
4:38
growing up. Overall,
4:40
it was a really lovely way to be
4:43
raised. I
4:46
was born in 1976 and I was born at home. My
4:52
parents were living in this unroomed house
4:55
and they ended up moving
4:57
from this little house into
4:59
a trailer. It
5:02
was all pretty good. And then my
5:04
mom had a second child and I
5:06
think it started getting harder to support
5:08
us. They were
5:11
really struggling to get by.
5:14
And so my mom ended up
5:16
putting herself through an
5:18
RN program. She had
5:20
two kids when she started and she
5:22
got pregnant with my brother, Sam, my
5:24
youngest brother. I
5:26
remember times when my family had
5:28
to rely on government food that
5:30
was being handed out at the
5:32
local fire station and times
5:34
where all of us
5:37
kids gathered our change jars and dumped them
5:39
into a big pile on the floor so
5:41
that we could count up the change to
5:43
have enough money to go get milk and
5:45
bread. That was
5:47
one of the more challenging things
5:49
that sometimes cast a pall over
5:52
my family. I
5:55
definitely emerged as a caregiver
5:58
pretty early. in my
6:00
life, in a lot
6:02
of ways, my family's level of need
6:04
kind of brought out the part of
6:06
me that was like, I am the
6:08
meter of needs, like I am the
6:10
problem solver, I'll fix it, which
6:14
isn't necessarily a bad skill set to
6:16
have in life, but I was
6:18
pretty young when I started
6:21
feeling like I needed to step forward.
6:25
Growing up, it was a
6:28
very independent type of upbringing and
6:32
I think my parents' generation were coming
6:34
out of homes where there was a
6:36
lot of control, a lot of discipline,
6:38
and a lot of rules and sometimes
6:40
even abuse. So
6:42
I think they really were trying this
6:45
thing where, you
6:47
know, they wanted to see what would happen if there
6:50
was just total freedom. There
6:52
was just total freedom for
6:54
themselves and their children. I
6:58
started first grade at an alternative
7:00
school that was basically like a
7:02
school designed for the hippie population
7:04
in our town. So
7:06
I went to school with other kids who
7:09
were getting raised by hippies and
7:11
it was a really loving
7:13
environment, but there was a
7:16
kind of extreme permissiveness
7:19
and I did start getting
7:21
pretty heavily into drugs as a
7:24
teenager and sometimes
7:26
even drugs that have some
7:29
really serious consequences for my
7:31
brain and body. And
7:34
no one ever put the brakes
7:37
on that. No one was
7:39
really in charge or
7:41
like really minding the store. That
7:44
was a little bit scary in a
7:46
way. Not knowing where the
7:49
boundaries and the limits are. I
7:53
was coming of age in the early 90s and
7:55
I was considered overweight. I was like
7:58
a size 16 in high school. school.
8:01
And this is the era
8:03
of Kate Moss and super,
8:05
super, super skinny. That was
8:08
on all the magazine covers
8:10
and there wasn't really much
8:12
representation of curvy women at
8:14
all. And so
8:17
the combination of going a
8:19
little overboard with drugs and
8:21
then also just being bombarded
8:23
by our culture with this
8:26
idea that my body was
8:28
wrong and you know I
8:30
was ugly and undesirable really
8:33
messed with my concept of
8:35
like my own worth and
8:37
my own desirability that led
8:40
to a kind of
8:43
challenging adolescence. And I
8:46
think I really struggled
8:48
to believe that I
8:51
could be loved in
8:53
a romantic way that I was unlovable. When
8:57
I left high school I
9:00
was able to secure a
9:02
scholarship to go to Antioch College,
9:04
which is really exciting for me.
9:07
And so I did. I went
9:09
and I had a really good year there
9:12
and I left all
9:15
of that substance use behind.
9:17
And then my folks had
9:20
made just a tiny bit
9:22
more money than they had
9:25
the year before. So I lost
9:28
the scholarship. I left
9:30
Antioch College and that opened
9:33
a chapter in my life that
9:35
was very adventurous. I
9:39
did go back to partying
9:41
pretty hard. But I also
9:43
kind of set my mind to
9:45
like okay if I am not
9:47
going to get an education in
9:49
the traditional sense, I
9:51
am going to get an education in the world.
9:54
And so I worked
9:56
these low-wage jobs
9:58
and I would
10:01
save every single penny that
10:03
I made and then I
10:05
would take myself on these
10:08
incredible trips. As
10:12
I was settling down, kind of
10:14
coming out of this time period
10:16
where I had all my great
10:18
travels, I was 23
10:21
and had a friend that had a
10:23
baby. I went over
10:25
to her house to meet her baby
10:28
and she and her partner had a roommate. And
10:30
this roommate and I chatted a
10:33
bit and you know he just
10:35
seemed kind and funny. And
10:38
pretty shortly after that he asked
10:40
me on like our first sort
10:42
of official date. We
10:45
were kind of hot and heavy
10:47
pretty fast and it
10:49
was so magical for
10:52
the first couple
10:55
of months that we lived together. But
10:58
within two or
11:00
three months Scott had
11:03
an episode of depression and
11:05
it was really kind of
11:07
startling. I mean it changed
11:09
his personality dramatically and
11:11
he was pretty irritable and
11:14
he lost his sex drive. And
11:17
he could not name that
11:20
it was depression. You
11:23
know a lot of what he explained to
11:26
me about how he was feeling had to
11:28
do with me. He'd
11:30
say it was because I had
11:33
done something, some small thing that
11:35
irritated him. And when
11:37
he lost his sex drive he said
11:39
that he just didn't find me attractive
11:41
anymore. So
11:44
when we had only been together for six
11:46
months because this depression had dragged on for
11:49
a bit, we ended up
11:51
going to couples counseling and
11:53
after like a couple
11:55
months in couples counseling, he started
11:58
to feel better. He started to come out of it. depression
12:00
and I sort of felt
12:02
like, oh okay, like we handled that, we
12:05
tackled it. And
12:07
now it's better and we can move
12:09
forward. Eventually
12:12
we ended up deciding to
12:14
get married and definitely
12:17
I noticed that there were
12:19
more of those periods of
12:21
time and because we'd
12:24
been into therapy and it had been
12:26
named as depression, like I knew it
12:28
was depression, but it wasn't
12:30
ever something that Scott could
12:32
really like name and identify
12:34
when it was happening. I
12:38
would sort of just rationalize it like, okay,
12:40
well, I've seen this and I know he'll
12:42
come through it and I just kind of
12:44
have to bear with him during these times.
12:48
Also, I hadn't had anyone
12:51
show interest in having
12:53
a relationship with me, definitely not making
12:55
a life for me and I wanted
12:57
to get married and have kids. I
13:00
really thought like this was my
13:02
opportunity to do that because he
13:04
always seemed really committed to being
13:06
with me and so
13:08
I think I liked the certainty of
13:10
that. There
13:14
was a side to Scott
13:16
that I didn't really
13:18
have a name for
13:21
or could explain that would come out
13:23
every once in a while. It tended
13:26
to come out during times
13:28
where Scott was actually in
13:30
a really good mood and
13:32
really energetic and he'd be
13:34
dreaming big dreams and really
13:36
productive at work and
13:39
then his mood would kind of
13:41
like ramp up a little more
13:43
but it would turn sour and
13:45
sometimes in
13:49
those head spaces he
13:52
would really get angry.
13:56
This was just like a different level of
13:58
anger and And it
14:01
really did scare me sometimes.
14:04
And it really threatened my dream
14:06
of marriage and babies and this life
14:08
that I imagined. And so I
14:10
think I just wanted to shove that
14:13
down and forget about it. I
14:17
had a very clear story that
14:19
we were deeply in love and
14:21
we were gonna get married and
14:23
the depression was woven into that
14:25
story and something that I felt
14:27
like I could manage. But
14:30
there wasn't any room in that story
14:32
for these rages. There
14:36
was some part of me that knew
14:39
that this wasn't healthy, but
14:42
that would have been so threatening to
14:44
this story. And I was really invested
14:46
in this story that I
14:49
was gonna have this life and
14:51
I couldn't let it in. In
14:55
2003, Scott and I did get married. We
15:00
started our life together and it
15:02
was actually really happy.
15:05
I got pregnant with our
15:07
first child and he was born in
15:09
2005 and
15:11
it was just a golden time.
15:15
Scott was an incredible father
15:18
during that period of time.
15:23
He did the night shift with me
15:26
and I don't know if I've ever
15:28
seen a man so in love with his baby.
15:31
He was great, he was
15:33
supportive and we were great and
15:36
we just had so much fun being a
15:38
family. And as my first child
15:41
grew, I applied to go
15:43
to graduate school. And so I did MSW.
15:47
I liked the first few
15:49
social workouts I got a lot.
15:52
So I was happy when I worked. I
15:54
was happy with my family and
15:57
everything seemed kind of
15:59
perfect. Scott's
16:02
depression even seemed like it had just
16:04
sort of cleared up. He
16:09
had a really challenging childhood.
16:11
His mom had bipolar disorder
16:14
and was really significantly
16:16
impacted and would have
16:19
very long manic
16:21
episodes where she'd become psychotic
16:24
and violent at times.
16:28
His dad drank heavily and
16:30
was just not a very
16:32
kind person. And
16:35
I remember even thinking to myself,
16:37
you know, maybe having a family
16:39
has done something to anchor him
16:41
in a different way. You
16:44
know, I think I really thought like
16:46
problem solved. Like we got through it.
16:48
Like we're good. Then
16:52
I got pregnant with my second daughter in 2009.
16:58
But Scott actually got pretty
17:01
angry that I was pregnant.
17:04
And he was also just mean. I
17:09
remember this time very early in
17:11
my pregnancy. I had given
17:14
up refined sugar to lose
17:16
some weight. But I got pregnant
17:18
and I'm like, okay, I'm going to have cravings.
17:20
I'm going to eat refined sugar. We were at
17:22
a wedding and I was like, oh, I just
17:25
want to have this wedding cake. And
17:28
he looked at me and at a table
17:30
full of people, he said, look, you're going
17:32
to get fat. It
17:35
totally floored me that he would say
17:38
something like that in front of a
17:40
whole group of people. And
17:42
he was so cold about it. He
17:45
almost looked at me like he was kind of disgusted with
17:47
me. Like, oh, you're going to get fat again. That
17:51
was the beginning of knowing like
17:53
some tide was turning that was
17:56
not feeling very safe and secure
17:58
and good. Things
18:02
really deteriorated from there. Scott
18:06
had become absolutely
18:08
obsessed at this point with climate change.
18:11
Like, it was all he could talk
18:13
about. And he
18:15
was spending hours and hours and
18:17
hours volunteering for this organization that
18:19
was focused on renewable energy. At
18:23
one point, he asked me if he could take
18:25
two weeks off to really work on this event
18:28
that they were going to host. And
18:31
he took two weeks off, and then he
18:33
just didn't go back to work. You
18:37
know, it was like a month, and then
18:39
it was like two months. And I was
18:41
pregnant, and the only person
18:43
working. When
18:46
I would try to talk to him about
18:48
it, he would get irate and say I
18:50
wasn't supporting him and that he had to
18:52
do this. He was
18:54
really focused on the apocalyptic
18:57
side of climate change. But
19:00
he would talk about it in such detail
19:02
and with such animation that it would be
19:04
a little frightening. And it would frighten our
19:06
son, who was only four at the time.
19:08
And I would ask him to stop talking
19:11
about it in front of our son, and
19:13
he would insist that our son needed to
19:15
know that we're all going to die. It
19:20
got real bizarre, and
19:22
he wasn't sleeping much. I
19:26
think at that point, I recognized that
19:28
he was manic, but I could not
19:30
talk to him about it. Any
19:33
discussion of mental health would just set him off.
19:36
And then he really crashed, and
19:38
he became so, so depressed.
19:41
Foul mood and irritable kind
19:43
of depressed, where he would
19:46
really lash out at me and
19:48
my son. And
19:50
then finally, at the very end of
19:53
my pregnancy, I think that was probably
19:55
the first time that I really seriously
19:57
thought about leaving him. a
20:01
tiny infant and
20:03
we had no money. I was
20:07
back to work full-time and
20:10
it was just chaos and
20:12
I just didn't have the bandwidth to really even
20:14
deal with what had just happened and I just
20:16
sort of put it in the vault
20:18
with everything else and was like okay
20:21
well that happened but I
20:23
gotta keep moving forward and
20:26
it was just two children and
20:28
working full-time you don't have a
20:30
lot of space to contemplate things
20:33
it was just go go go this
20:44
is actually happening is sponsored by better
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help what's the first thing you do
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therapy can help you find what matters to you
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some point, I just started focusing on
22:38
myself and I was just taking really
22:40
good care of myself and I was
22:42
enjoying being a mom and I liked
22:44
my job. I had a job as
22:46
a hospice social worker. Things
22:49
with Scott felt manageable again.
22:53
Then, at the height
22:56
of me being strong
22:58
and healthy and in
23:00
great shape physically, I
23:03
just all of a sudden
23:05
started to feel really tired.
23:09
This was in the late summer of
23:11
2014. I
23:14
remember thinking that my job was just
23:16
getting more stressful and that's why I'm
23:18
getting tired. I scheduled
23:20
a week off for the week of my birthday
23:23
in October. I get
23:25
to my week off and
23:27
almost immediately, I start
23:30
having the symptoms of a cold. I'm
23:32
even more tired and I'm
23:35
achy, really achy. It
23:38
was a type of tired that
23:40
I'd just never experienced. My
23:45
whole body was like lead
23:48
and getting up from the couch felt
23:51
nearly impossible. I was
23:53
dragging my legs behind me
23:55
because they were so heavy.
23:58
I started to feel really tired. started having the
24:00
shortness of breath. I
24:03
went to my doctor and
24:05
she couldn't find anything that
24:07
seemed particularly wrong, but
24:09
I just was getting even worse
24:11
and the shortness of breath was
24:14
getting worse. I couldn't
24:16
catch my breath and I was
24:18
getting really freaked out. So
24:21
I went to the emergency department and
24:24
it really took some doing to get
24:26
my breathing under control. Finally,
24:29
after several rounds of
24:32
steroids and injecting a
24:34
muscle relaxer, finally
24:37
I got to where my breathing was
24:39
stable and they told me I had
24:42
an adult reactive airway disorder,
24:45
which was odd because I'd
24:47
never had any trouble with my
24:50
respiratory health ever. I
24:52
went home and by the
24:55
very next day, I was having
24:57
these problems again. And
24:59
then I started to get profoundly
25:01
weak to where
25:04
I was barely able
25:06
to walk. I
25:09
was feeling as if I were
25:11
underwater and
25:14
everything underwater is
25:17
like slow and dark and
25:19
heavy. I
25:21
couldn't find the right words
25:23
to convey. I'm under the
25:26
water. I need somebody to pull me up.
25:31
One night my legs totally gave out
25:33
on me. We called
25:35
my doctor's office and they said, I
25:37
think you've just really got hit hard
25:39
by a virus and you're really struggling
25:42
right now, but I bet in a
25:44
few days you're gonna feel better. That
25:47
was the first time that I
25:49
had an internal feeling of like,
25:52
no, no, something
25:54
else is happening. Like something is going
25:57
on in my body that is really...
26:00
wrong. But I couldn't
26:03
really give voice to that.
26:06
All I said is I'm really
26:08
scared. I ended
26:12
up going to bed that night and then
26:14
waking up in the morning to find that
26:16
my legs just didn't work. I
26:20
could not stand on them. At
26:24
that point, you know, we called the
26:26
doctor's office again and said something
26:28
has to happen. And
26:31
she said to me, I think that
26:33
you might be having this rare autoimmune
26:35
reaction that people can have when they
26:37
get a virus. And it's actually
26:39
pretty serious and you do need to go
26:41
to the hospital right away. When
26:44
we got to the hospital, my torso
26:46
and my arms were starting to
26:48
become so weak that I couldn't
26:50
move them. At which
26:53
point, my whole body
26:55
became paralyzed. Little
26:59
by little, my ability to breathe
27:01
began to wane because
27:04
also the muscles that control my
27:06
breathing were becoming paralyzed. The
27:10
hospital staff decided that I needed
27:12
to be on a ventilator. I
27:17
was diagnosed with Guillain-Barre
27:19
syndrome, which is an
27:21
autoimmune disorder that can paralyze
27:23
people and it's very serious.
27:26
What happens is that the antibodies
27:28
in your system, instead of like
27:31
attacking the virus, they attack this
27:33
myelin sheath that we have around
27:35
our nerves and they cause
27:37
damage to it. And that's what
27:39
causes the paralysis. And sometimes
27:42
that damage is irreversible. Oftentimes
27:45
people can come back from full
27:47
paralysis but they will always have
27:49
problems. They
27:52
gave me the treatment for Guillain-Barre,
27:54
which is pumping good antibodies into
27:56
your system. And they gave
27:58
me this IV antibiotic. treatment because
28:00
they thought I had some kind of
28:02
infection but they didn't know exactly what
28:05
and I was better
28:08
like really better. They
28:12
took me off the vents after three
28:14
days. By day
28:16
six I was up and walking
28:18
the hallways and
28:21
I was like back. I
28:23
was walking staircases and
28:26
doing all the tasks all the
28:28
tests that they had for arm
28:30
strength that was passing with flying
28:32
colors. They just
28:34
couldn't believe it. Like we
28:36
never see this with Guillain-Barre. People with
28:38
Guillain-Barre are here for six months at
28:40
least and I thought it
28:42
was great news. I'm like oh my
28:44
god like I'm the miracle person. So
28:48
we were all very happy and I
28:50
got discharged home and then
28:54
I started to
28:56
have these periods
28:58
where I would become very very weak again.
29:00
I was just
29:03
right back to barely being able
29:05
to get to the bathroom. My
29:09
husband and I had both read a
29:11
ton about Guillain-Barre and we were like
29:13
this is not what happens. This
29:15
doesn't make sense. That's
29:17
when I started to realize
29:20
that I was
29:22
misdiagnosed. It
29:25
was so frightening because whatever
29:27
that thing was that was wrong with me
29:29
had caused me to be paralyzed before and
29:31
I don't
29:34
know if that's gonna happen again. Like am
29:36
I gonna suddenly be paralyzed and not be
29:38
able to breathe? I
29:41
got so sick that I was
29:43
hospitalized again. I ended up for
29:46
the first time having a neurologist
29:48
suggest that I might have something
29:50
called a conversion disorder and
29:53
that was a huge turning
29:56
point and a very sad
29:58
and bad way for me. me because
30:02
conversion disorder is the modern
30:04
day equivalent to Freud's hysteria.
30:09
It's where your buried
30:12
trauma is, you know, like
30:14
somehow your system just like can't face it
30:16
and can't cope with it. And
30:19
it's causing you to have these
30:21
somatic symptoms, these symptoms
30:23
that seem real to you but
30:25
they're not of physical origin. It's
30:29
the fancy way of saying it's all in your head. I
30:34
knew there was something physically wrong
30:36
with me but unfortunately
30:39
the neurologist I've been seeing
30:41
really took that conversion disorder
30:43
ball and ran with it
30:46
and said the entire thing,
30:48
the full paralysis where I
30:50
was put on the ventilator,
30:52
the respiratory arrest, the
30:55
whole thing was a conversion
30:57
disorder. I
31:00
remember being in the office with him and my mom was with
31:02
me and I'm saying to him,
31:04
but I didn't have reflexes. That
31:07
doesn't compute. You can't
31:09
psychologically influence your body to
31:11
not have reflexes. That doesn't
31:14
make sense. It
31:16
was extra frustrating because I
31:18
at that time was a
31:21
social worker with a master's
31:23
degree and my concentration was
31:25
in mental health and I
31:27
had done an entire semester
31:29
on this diagnostic and statistical
31:31
manual that this diagnosis comes
31:33
out of conversion disorder because
31:35
it's a psychiatric diagnosis. I'm
31:38
just like, no. And
31:40
the other thing I kept
31:42
saying was like prior to
31:45
this event, I had
31:47
not had really significant trauma
31:49
that could cause a conversion
31:52
disorder. For conversion
31:54
disorder, it's usually like somebody loses someone
31:56
who's very close to them and they
31:58
can't cope with it. And so they
32:00
develop somatic symptoms or somebody was
32:02
sexually abused as a child and
32:04
they've repressed the memory and they
32:07
just can't face it. And so
32:09
their body starts to sort of
32:11
tell the story, right? But
32:13
I hadn't had anything like that. And
32:16
when I said that part, this
32:19
neurologist actually said, this is
32:22
my mom sitting right there in the
32:24
room, said, well, you were probably abused
32:26
as a child and you've blocked it
32:28
out. What?
32:32
It was so frustrating.
32:36
But beyond that, it was
32:40
demoralizing and
32:42
terrifying because
32:45
I had been home
32:47
from the hospital and really, really
32:50
sick for like about six weeks.
32:53
And he's telling me, it's
32:55
all in your head. There's nothing I can do for
32:57
you. It was
32:59
so scary to
33:01
be that sick and to think
33:04
that there was no path forward. There
33:09
was absolutely a
33:11
part of me that couldn't
33:14
shake what he'd said. And
33:18
I would have these moments where I
33:20
would think about it obsessively. Could
33:22
it be true? Could
33:24
it be that my mind is doing this? That
33:28
was awful because I already
33:31
felt like I couldn't rely on
33:33
my body. And
33:35
now I'm being told that
33:38
my mind has failed too and
33:40
I couldn't trust my mind either. It
33:43
just felt like such a black hole.
33:45
Could this be true? It
33:48
also induced it for me, just
33:51
a huge feeling of guilt, like
33:54
something that I did me
33:56
not taking care of myself, me
33:59
not facing. things properly. I
34:02
wasn't able to be a mom at
34:04
this time. I could barely
34:06
get to the bathroom. I couldn't give
34:08
my children a bath or read them
34:10
bedtime stories. I couldn't hold a book.
34:14
There was an emotional part of
34:16
me that was like, I did
34:18
this, I brought this on myself,
34:21
and I'm failing my kids because of it.
34:24
And I think the
34:26
most challenging element was
34:28
the uncertainty and it
34:31
was like, what's the
34:33
end point of this disease process? Right? Like,
34:35
do I have something that's gonna kill me?
34:38
And then not knowing how long I
34:40
was gonna be in that state of
34:42
illness and how it
34:44
changed everything about me.
34:46
I am
34:50
an energetic person
34:53
and I was like, so
34:55
physically impaired. I had
34:58
been such a caregiver that had
35:00
been such a big part of
35:03
my personality. I took care of
35:05
people and it felt like I lost
35:07
me. I lost myself.
35:11
I lost the things that make me
35:13
me. It unlocked
35:17
this relentless pursuit of
35:20
health and myself. Like, I
35:23
had to get back to myself.
35:26
I have to get back to my life. In
35:30
the winter into the spring
35:33
of 2015, I was experiencing
35:35
still periods of
35:40
profound weakness. My
35:42
body couldn't hold itself up anymore.
35:45
That was my life. For months,
35:49
that coupled with a
35:51
lot of moments where I
35:53
would have involuntary movement. I
35:56
had this one really odd experience where half of my life was
35:59
just a little bit of a half of my body
36:01
became paralyzed, like I couldn't move it,
36:03
and half of it was tremoring. And
36:06
then I would have intermittent pain.
36:09
It would just sort of come on all of a
36:11
sudden. It could be pretty severe at times. On
36:14
any given day I could wake
36:16
up to a whole new bizarre
36:18
set of symptoms, like weird
36:21
buzzing sensations in my body, like
36:23
there was like an electrical wire
36:25
that was buzzing. But
36:28
the constant was this utterly
36:30
debilitating weakness. After
36:34
trying to go to
36:37
a couple of different doctors, as
36:39
soon as people saw the conversion disorder
36:41
diagnosis on my chart, they didn't want
36:43
to do anything more. So I
36:46
finally met with a psychologist and
36:49
she ended up finding that I
36:51
did not have a conversion disorder.
36:54
And so we start looking at other
36:56
options. And
36:58
then I ended up having
37:00
another like weird neurologic episode
37:02
and I decided to go
37:05
to the emergency department and
37:07
a physician's assistant, she said, you
37:09
might want to find somebody that
37:12
knows about tick-borne illness. So
37:15
we went home and my
37:17
husband was like researching tick-borne
37:19
illness and he found the
37:22
Columbia University Research Center on
37:24
tick-borne illness. And oh
37:26
my god, it was like every symptom.
37:29
Every, every symptom I had had
37:31
was on that list and
37:33
it was super exciting. We
37:37
found a nurse practitioner who
37:39
had a small private practice,
37:42
what she called Lyme aware, and
37:45
we made an appointment with
37:47
her and I talked my
37:49
doctor into starting me on
37:51
the medication for these tick-borne
37:53
illnesses. And
37:55
I had a really
37:58
violent reaction to the medication. Then
38:00
when it. Happens with
38:02
lime disease and tick borne
38:04
illnesses. and my brain
38:06
got really inflamed of us are having his of
38:08
violent of the said that were like. Seizures
38:10
like I was just like
38:12
taking. All over flop and like
38:14
a search. It
38:16
was a very weird moment
38:18
in time because I was
38:20
like so excited at we
38:23
found that we find out
38:25
that and dad a search
38:27
treatment and i am leg
38:29
sicker. Even still, More
38:31
debilitated. Only actually
38:34
got to see the nurse practitioner that knew
38:36
about it. She set me off the medicine and
38:38
then add to start back on a lower
38:40
dose. And that really
38:42
began my. Education and
38:45
about Lyme and bacterial
38:47
illnesses come along with
38:49
to buy. The
38:54
next two years. Were. An
38:57
absolute roller coaster ride with my Hell.
39:01
Sadly, After one year
39:03
on that roller coaster, the
39:05
stress of it really impacted
39:07
my husband's mental health. And
39:10
he began having a period of
39:12
time or his raises became something
39:15
yeah and what they ever had.
39:17
An. A
39:20
level love, screaming. Became.
39:23
Really menacing. And it wasn't
39:25
short outbursts, it was long
39:28
tirades, then. It was
39:30
very irrational and it was
39:32
triggered by the tiniest of
39:34
things. Not.
39:36
Knowing what I was gonna contend
39:39
with data day with my health
39:41
and then not knowing if I
39:43
was going to be frightened and
39:45
scared by my husband's. All
39:47
of that me about period of time.
39:50
Just so a challenge here. I.
39:54
must have had a really big
39:56
vaults gonna just sort of served
39:58
all that ugly hard
40:00
stuff into the vault and tried
40:03
to make our home happy for my kids
40:06
because they had just lived through a really
40:09
awful two years. We
40:11
really tried to just launch back into life
40:13
as usual and we were pretty successful for
40:16
a while. My husband
40:19
went back to school
40:22
and I finally got back
40:24
to work. I started a private
40:26
practice and I became a licensed
40:29
clinical social worker. I loved being
40:33
a therapist that was enjoying being
40:35
with my kids and I was proud of
40:37
my husband for doing this thing that I
40:40
knew meant a lot to him and it
40:42
seemed like we'd been able to reset.
40:48
Then one day, Labor Day of 2017, I came home.
40:50
My husband
40:56
was on his computer. He
40:58
turned around and looked at me and he looked off.
41:02
Something was not right and
41:05
he said, I need to
41:07
tell you something and
41:10
he said to me, where's your cell
41:12
phone? Are you sure it's not out
41:14
here? And I'm like, no it's not out here. And
41:17
then I noticed his cell phone
41:19
had tape over the camera and
41:21
the microphone and
41:23
then he like shoved it in this
41:26
pile of camping mattresses that we kept
41:28
in the front porch. I was
41:30
like, that's weird.
41:32
I sit down on
41:34
the porch swing and he just starts to
41:37
pace in circles. He's
41:39
got his wild look in his eye and he
41:42
starts telling me this
41:44
story. This group of
41:46
women have targeted him and
41:49
he calls them gander stalkers.
41:52
She isn't actually a word
41:55
but it's what his word for it
41:57
was. Gander
42:00
stalkers have targeted him and
42:03
they're watching him through the computer
42:05
and they're watching him through all
42:08
of their phones and They
42:11
want to destroy him and they want to
42:13
destroy his life because he was
42:15
looking at pornography They
42:18
found out about it and this
42:20
is their mission. This is what they do. They
42:22
find men who look at pornography and they target
42:25
them I've
42:27
worked on psychiatric units before So
42:30
I was like, oh shit. He
42:32
is psychotic Once
42:35
you've seen someone in a state of psychosis Like
42:37
there's just a certain look people have like on
42:39
their faces and in their eyes and it's
42:42
kind of unmistakable Once you learn
42:44
how to recognize it He
42:46
was so clearly there. I Immediately
42:50
started to try to coax him into
42:52
going to the hospital and he would
42:55
not have it it
42:57
was absolutely terrifying
43:02
We're in this like tiny house. My
43:04
kids are there and he's
43:06
totally psychotic and
43:08
I cannot get him to go to
43:10
the hospital He
43:13
maintained this delusion about the
43:15
gander stalkers the whole time
43:17
but the kind of pitch
43:19
of his paranoia grew
43:22
and grew First
43:25
it was like they're watching me. He
43:28
would get really really scared if any
43:30
of us pulled out our phones He
43:34
also had what's called delusions of
43:36
reference You can have
43:38
delusions where you're looking at something
43:40
from the outside world and
43:43
in your mind it very clearly says
43:46
these people are out to get me and as
43:49
time went on he began to believe that
43:51
they were going to kill him and He
43:54
was absolutely terrified
43:59
To be watching somebody who's
44:01
like in a waking nightmare
44:03
and you can't wake them up.
44:07
It was awful. I
44:10
just couldn't get him help. And I
44:12
did everything I would need to
44:15
do to make that happen. I got
44:17
a chance to call the emergency
44:19
services therapist. And she told
44:22
me that there was nothing she could do.
44:25
That he didn't have a diagnosis
44:27
on his chart of bipolar disorder
44:29
or anything related to psychosis. And
44:32
I was just gobsmacked.
44:36
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slash wondery. Eventually,
46:20
his psychosis got
46:22
so severe that
46:25
one night we were at
46:27
home and just trying to get
46:29
some sleep. I
46:31
remember hearing his footsteps on the
46:33
stairs and they were loud. And
46:36
he wakes me up and he tells me there's
46:38
something that I have to see downstairs. So
46:42
I just went ahead and I got up
46:44
and my cell phone was
46:46
sitting next to the bed. I
46:51
just sort of discreetly like
46:53
picked it up and pressed
46:55
it against my thigh. And
46:58
he, for the first
47:00
time in our whole
47:02
time together, like
47:04
16 years, he
47:07
laid hands on me. He
47:09
grabbed my arm and he twisted it.
47:12
He twisted my wrist and
47:16
wrenched the phone away from me. And I
47:19
was like, this is a new level. He
47:24
pulls me towards the computer that grabs
47:26
both of my arms and
47:29
he is showing me the Craigslist
47:31
IQ page. He
47:34
says to me, I
47:36
know what you did. I
47:38
know you're behind all of it. And
47:42
I was just like, no,
47:44
honey, no. Why
47:47
would I do this to you? Why
47:49
would I bring this on our family? And
47:52
he just goes on this
47:55
tirade about how I
47:57
am behind everything. figured
48:00
it out from the Craigslist tycoons and
48:03
I'm the mastermind. At
48:07
this point, you know, we'd already done
48:10
this like walk-in clinic and
48:12
they wouldn't prescribe him antipsychotics and
48:14
what they prescribed him was basically
48:17
it was like a really strong
48:19
antihistamine. So then he
48:21
tells me, and I know you're
48:23
trying to kill me, I know that you
48:25
had them
48:28
give me this poison and he
48:31
picks up the pill bottle and he
48:33
opens the pill bottle and he pours
48:36
a bunch in his hands and
48:38
he tells me, I know these
48:40
are poisons and that I'm
48:43
going to take these pills to
48:45
prove to him that they're not poison and
48:48
that's when he actually attacked
48:50
me. He
48:52
grabbed my arm and he started to try
48:54
to push the pill into my mouth and
48:56
we're both standing at this point. I'm
48:59
resisting and I'm trying to pull away from
49:01
him and so in that process, like we're
49:03
backing up and we're backing up and then
49:05
we hit the sink and
49:07
I can't go any further away
49:09
from him and he's pressing this
49:11
pill against my lips really really
49:13
hard and I'm gritting my teeth
49:16
and I'm still just trying to get away
49:18
from him but I'm back to the sink
49:20
so I start jerking my body side to
49:22
side trying to just get loose from him
49:25
and then we end up tumbling to the
49:27
floor. I don't have
49:29
the strength to fight him off. He's a construction
49:31
worker and he quickly, you know,
49:33
gains the upper hand and he gets
49:35
on top of me and he pins
49:37
my arms with his legs and
49:40
I clenched my teeth so hard
49:43
that my teeth actually cracked and
49:46
I'm just crying so hard not to
49:48
open my mouth under all the pressure
49:50
that he's putting on it. I
49:54
don't know how long we were like that but
49:57
in those moments I really
49:59
thought... that he might kill me just
50:02
from the struggle because he was pressing
50:04
so hard and he was so strong. Luckily,
50:08
his own mind distracted
50:10
him again. He thought
50:13
of some other thing he'd seen in
50:15
the Craigslist tycoon that could prove that
50:17
I was behind it all. And he
50:20
actually got off of me on his
50:22
own volition and
50:24
he walked back over to the computer.
50:29
As quietly as possible, I creeped
50:31
up off of the floor and
50:33
I crawled until I was just behind him.
50:36
And then, as fast as I could, I
50:40
sprung up and I grabbed the
50:42
landline and I turned around and
50:45
I sprinted for the bathroom. I
50:48
got in there and I locked the door and I
50:51
called 911. I
50:53
was worried he was going to come through and I
50:55
think I said, you have to stop this because the
50:58
cops are on the way. At that
51:01
he fled. He left
51:03
the house and didn't come
51:05
home until the next evening.
51:11
Four days later, Scott
51:13
had another violent episode with
51:15
me. He pushed me
51:18
down in our gravel driveway and
51:20
he stole my car. He
51:23
drove my car to
51:25
southern Indiana. He
51:27
really believed that, you
51:29
know, this group of men were after him. I
51:31
was after him. My brother
51:34
had come to stay with me to help keep me
51:36
safe and he thought my brother
51:38
was trying to kill him. Everyone was trying to
51:40
kill him. So
51:42
he just stopped the car in the middle
51:44
of one of the busiest highways in Indiana
51:46
and just left it in
51:49
the lane. He got
51:51
out and he ran through
51:54
the median for a while and he found
51:56
a state police outpost. He
51:59
went in and he asked the police officer
52:01
for help because he thought he was being
52:03
chased and he thought he was going to
52:05
be killed. And somehow
52:07
that police officer talked him in to
52:09
going to a hospital
52:11
down in Southern Indiana
52:13
that had psychiatric emergency
52:16
department. And he had
52:19
a moment of lucidity, remembered
52:21
that he had pushed me
52:24
down and he realized he
52:26
had to get killed.
52:28
He did want to be hospitalized in Bloomington, which
52:30
I was all for. And he was not
52:33
kept for a super long time. And
52:36
he was discharged on a medication that takes four
52:38
to six weeks to build up to a therapeutic
52:40
level in your system. So of
52:43
course he quit taking it. So
52:46
it wasn't the end of things. The
52:49
end didn't come until I moved
52:52
out in May of 2018. I just
52:56
finally decided like, didn't do
52:58
it anymore. So I asked for
53:00
a legal separation asked him
53:03
to leave. Unfortunately,
53:05
he wouldn't leave. So
53:08
I ended up leaving our home with my
53:10
kids and moving into a crappy apartment. I
53:15
was really grieving the loss of
53:17
him and our marriage, but
53:20
I was finally finding some peace.
53:22
And I
53:24
just realized like, I absolutely could
53:27
not go back. It's
53:31
still very complicated. The
53:33
duality of losing someone
53:36
and having that both be a thing that you
53:38
grieve and a thing that brings you peace. I
53:42
remember this one moment when
53:45
we were house sitting for
53:47
someone and my mom took
53:49
my kids. I was alone for the first time
53:51
since we left. And I
53:54
remember this wave of grief hit
53:57
me and it was so powerful that
53:59
it actually knocked me over and
54:02
I was crying for Scott because
54:05
it felt as if this illness had been
54:08
like a death. It
54:10
just completely took away the man that
54:12
I knew and I was crying
54:15
for myself and
54:17
all that I'd been through and all that I had
54:19
lost and I was crying for my kids. They
54:22
no longer had you know a
54:25
family, an intact family and
54:27
I couldn't grieve this with him. I
54:30
couldn't even acknowledge it was hard with him.
54:33
There was no closure.
54:35
That was something that just got taken from
54:37
both of us. I've
54:42
definitely still had struggles with
54:44
Lyme disease. I had a
54:46
really significant relapse of Lyme disease in
54:48
2020. Lyme disease is gonna be
54:52
something that I'm always gonna have to deal with on
54:54
some level and there's been
54:57
something about coming through all this where it's
54:59
gonna like hey you know life is fragile
55:01
and you never know what's gonna happen. After
55:06
actually leaving and kind
55:09
of getting settled in in my own
55:11
new life, I bought my own home.
55:13
You know I lost my home. I
55:15
just I couldn't
55:18
get Scott out of that house and I
55:20
decided just to give it to him in
55:22
the divorce but I ended
55:24
up buying a home. It's really
55:26
beautiful. You know little
55:28
bit I love it and it's really
55:31
mine. Our divorce
55:34
was final in August of 2018 and I started dating
55:36
in November of 2018. On the
55:44
second date I went on after
55:46
trying out the Bumble app, I
55:48
met this man who ended
55:51
up being kind and smart
55:53
and supportive and I ended
55:56
up falling in love. At
56:00
the same time, I was
56:02
still really grieving my
56:04
marriage and also had
56:06
a pretty terrible case
56:08
of PTSD symptoms that
56:10
was impacting me quite
56:13
a lot and like being wildly
56:15
in love and like the euphoria
56:17
that comes with that, that was
56:19
another like roller coaster kind of
56:21
a time. And
56:23
there was something about finding
56:26
a new love that was
56:28
a healthier love, a healthier
56:30
relationship that allowed me to
56:32
see the patterns of dynamics
56:34
in my past relationship differently.
56:38
And I had this really interesting thing
56:40
happen to me where, you know, I
56:42
talked earlier about like there
56:44
was this vault and I just
56:46
kept pushing things into the vault. And
56:49
there was this one night I was lying in
56:51
bed and all of a sudden the vault flew open
56:59
and years and years
57:02
of memories of,
57:04
you know, Scott being controlling
57:07
or raising his voice at
57:09
me or treating me unkindly
57:11
just came
57:13
flooding out. And
57:16
it was totally overwhelming when it happened.
57:19
But I really did need to be
57:22
loved and when my new partner was capable
57:24
of loving me to really
57:26
reckon with the way I'd
57:28
been loved before that was
57:31
so hurtful. One
57:35
of the things that absolutely changed
57:37
for me having lived through all
57:39
of this is that I really
57:43
believed that love is
57:45
curative. I
57:47
thought love can conquer
57:49
the obstacles. And
57:51
so I think for years I
57:54
just thought I could love Scott
57:56
out of his traumatic childhood and
57:58
his mental health. illness. There
58:03
came a point when I finally realized I
58:05
had to leave him where
58:07
I really understood
58:09
that love by itself, no
58:11
matter how much love I had, it wasn't
58:14
actually going to save him. I
58:19
really switched to like
58:21
really consciously channeling love
58:23
and compassion for myself
58:26
and not being so much in
58:28
the mindset that like it's my
58:30
job to save people because
58:33
sometimes you just can't. Honestly
58:38
I don't know how to make peace with that.
58:40
It's a hard reality of life
58:43
and it's important to know
58:46
when it's time to take
58:48
those kind of valuable resources and
58:50
tend to yourself with them. I
58:55
still do know my own words and
58:58
I still have that thing
59:00
I discovered the first time I was
59:02
sick which is just this persistence
59:04
in me to get back
59:07
to health when I'm not
59:09
in health, to get back
59:11
to happiness when I'm not
59:13
in happiness, and I
59:16
have that for my kids too. Like I feel
59:18
very dedicated for them and whatever life is going
59:20
to throw at us we're going to get through
59:22
it and we're going to get through it together.
59:38
Today's episode featured Mirabai Rose.
59:41
To learn more about
59:43
Mirabai, you can find
59:46
her on Instagram at
59:48
mirabai.rose. That's MARABAI.rose. And
59:51
on her website
59:53
at mirabairose.com. That's
59:56
marabairose.com. There you
59:58
can find links
1:00:00
to her own podcast, Badass,
1:00:02
Tales of Resilience, which showcases
1:00:04
authentic conversations about trauma and
1:00:06
resilience. You can also find
1:00:08
links to her memoir, Holding
1:00:10
Hope, One Family's Odyssey Through
1:00:12
Lyme Disease and Psychosis, which
1:00:14
dives deeper into many aspects
1:00:16
of the story you heard
1:00:19
today and more. If you'd
1:00:21
like to reach out to
1:00:23
her, you can email at
1:00:25
contactatmirabairose.com or on Facebook at
1:00:27
facebook.com/m a r a b
1:00:29
a i. From
1:00:36
Wondery, you're listening to This Is
1:00:39
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