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What if you believed your love could cure him?

What if you believed your love could cure him?

Released Tuesday, 26th March 2024
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What if you believed your love could cure him?

What if you believed your love could cure him?

What if you believed your love could cure him?

What if you believed your love could cure him?

Tuesday, 26th March 2024
Good episode? Give it some love!
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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?

1:10

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rates not available in all states or situations.

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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

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22:36

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

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