Generational Disbelief
My mom turned 71 this year.
She lives alone in a converted chicken coop
clinging to 10 wooded south-facing mountainside acres
with no power,
no water,
with her 5 horses,
2 chickens,
and her dog, Bucky
who answers to "Damn Dog!"
just a little bit faster....
so "Bucky" might as well be his nickname.
A formative experience happened to my mother
when she was 8 years old in second grade
when her teacher on the first day mixed up her,
and another girl
and called each girl
by the OTHER girls' names.
The other girl, Jan
thought that was fine.
My mom,
was INCENSED.
She was NOT Jan, she was Kay.
She refused to answer to Jan...
but since her teacher called her Jan,
and Jan *answered* to "Kay",
all her classmates
called her Jan, too.
This lasted all year long.
This was 1955, and teachers were not to be argued with.
My mom tried to reason with the teacher,
the teacher reprimanded her for impertinence
for correcting a teacher.
If she wasn't Jan, how come the other girl
answered to "Kay" if her name was "Jan"?
She called my mom a liar.
The kids in her class called her "retard" and "idiot"
and teased her for not knowing her own name.
My mom tried to get her mother to correct the teacher,
my Grandmother said, "Who cares? You know your name is Kay.
What does it matter what anyone else says?
Just answer to 'Jan'. Problem solved."
My mom spent the whole year of 2nd grade
being called an idiot for refusing to answer to someone else's name,
while 'Kay'(Jan) became 'Teacher's Pet' for all her 'good behavior'.
No one defended my mom.
No one stood up for her.
Not Jan.
Not her mother.
Not her first grade teacher, who knew her.
She was on her own, all year.
When I was a child,
it was my severe asthma that was not believed.
Those who grew up in the 1940's, 50's, and 60's
(ie: my teachers, my authority figures as a child of the 80's)
believed asthma was 'made up'.
They were taught it was psychological feedback loop,
like a tantrum.
It was BEHAVIORAL.
They were taught there was no such things as food allergies
(that were not anaphylactic),
dander, grass, or dust allergies,
and CERTAINLY no such thing as being allergic to smells,
certain levels of physical activity,
or air pollution.
Absolutely impossible.
I was "picky".
I was a liar.
Teachers.
Coaches.
My friend's parents.
My grandmother.
My aunt *and* uncles.
I was "coddled" and "lazy"
and THAT was my problem.
I could not trust most adults in my life,
to preserve my life
in case of an asthma attack.
I had to be in full control of my multiple medications,
and my avoidance of a LONG list of allergens
and to self-diagnose/self-treat/self-track
all stages of any asthma attack
as an individual
by the time I was 6.
By 8 or 9, I had it DOWN.
My grandma wasn't convinced,
until I was in an ambulance in Seattle,
after having a very fast onset attack
when she took me on vacation to see her wily old friend.
I came in from outside, gasping...
saying, "Something is wrong. I think I need to go to the hospital."
She poo-pooh'd me, saying she'd do no such thing.
I'm just bored and overreacting.
She called the ambulance when she grabbed my wrist,
to pull me over to a chair...
and my heartbeat was skyrocketing,
over 200 bpm, I was ghastly pale.
As one EMT was intubating me
and the other asked her point blank,
"How did you let this go on so long?
This is very serious, you know."
And my grandma honestly told him,
"I thought... she was kidding.
I thought she was upset.
To be honest, she ALWAYS does this.
Can it really be that serious?"
The EMT looked at her and said,
"Does this look like WE'RE kidding, ma'am?
Are you telling me you don't believe this is real?
Believe me right now, and understand that what we are doing
to keep her breathing is painful,
and apologize because this is your fault if you watched this spiral happen
and did nothing."
My grandma was NOT a woman used to be being talked to this way.
She was shocked silent and tearful; she nodded.
I focused on this,
rather than the feeling of being intubated.
He asked her if I was on any medications.
She said "Yes, several."
"What are they?"
She crumpled.
It's the only time I've ever seen my grandmother cowed.
Seen her afraid. Seen her... quiet.
"I don't know. She handles it."
I was intubated and being bagged by that time,
I was focusing on not breathing,
and letting them do it for me,
but I was terrified.. on high alert
trying not to panic.
He asked if I could write down my medications.
I was 7 years old.
I wrote down all 6 of my medications,
and my dosages and timing.
Four twice-daily pills,
2 inhalers,
and the 3 medical devices I don't leave home without.
I tried to talk, to clarify...
bad idea.
I choked and gagged on the intubation setup.
It does strange things to a child's mind
when trusted adults
and authority figures
dismiss your *very real* reality,
because they *believe* they know better.
It does other things
what that person is finally told off
but a grander authority figure.
Spending 9 months being told
by a teacher and the entire class,
that you don't know your own name.
It AFFECTS you.
It INFECTS you.
Mom never gave in.
She refused to be "Jan".
She didn't care if it "didn't matter".
She didn't care if she was in trouble,
if she was teased,
if she was tormented...
she was NOT Jan,
and she was NOT going to give her teacher
the satisfaction of MAKING her "Jan".
My mom is one of the most stubborn people
you will ever meet
(if you ever meet her)
hence being 71 years old
living alone on a mountaintop
with no water/electricity
hauling water for 5 horses,
and snowed in for up to 2 months a year.
Her choice. PROMISE.
We tried SO HARD to talk her out of it.
But, I was lucky.
OTHER people didn't believe me.
Other people distrusted my 'claims' of asthma
when I had to stop running in gym,
or couldn't pet someone's cat
(or even go to their house because they HAD a cat),
or had to say 'no' to chocolate cake
or peanut butter.
But I had a mom who believed me,
and who stood up for me,
and trained me to stand up for myself.
And also how to advocate
for others.
In fact, my asthma
was a replay of "Your name is Jan"
for my mom.
Because... her mother,
her brothers and sister,
her friends
didn't believe in MY asthma.
They told her she was overreacting.
They told her *I* was overreacting.
They told her she must have MISUNDERSTOOD the doctors.
They told her SHE was making me sick in some
Münchhausen by Proxy situation
for attention, or as a cry for help
because it isn't POSSIBLE
for me to be so "sensitive",
unless I was faking it,
or unless it was *her* fault.
They knew I was in the hospital all the time,
they knew I was being treated by a slough of doctors,
but they figured
it was all...
.... an unfathomable ploy.
Mine or hers
they weren't sure.
Gym and home ec teachers would take my doctors notes on the matter,
of banned activities and foods,
but not my mother's.
And my word was dirt, of course.
I was just a kid, the owner of this body.
What did *I* know?
She wasn't to be trusted, either.
She was considered complicit in my scam,
or perhaps my ringleader
and I a duped victim of her mental/emotional "sensitivities".
In High School, I met the only other person
who had ever encountered this sort of treatment.
My best friend Morgan had a little sister Alice
who suffered and extreme form of epilepsy
where she had hundreds, if not thousands of small seizures every day.
Every. Single. Day.
She had trouble tracking conversations,
keeping memories straight,
she was always complaining of strange smells
and random, wandering headaches.
She was a *violent* sleepwalker. Sometimes she fell suddenly.
Teachers said she was an attention seeker,
because they *knew* what seizures were... from TV..
and what they saw her eyes glaze and then clear...
they were obviously NOT seizures.
She was lying. She was a liar.
She was making up excuses.
It was a lack of focus.
It was a lack of interest.
It was laziness.
It was inattention.
It was an overactive imagination.
She died at 26, when a bad series of seizures
triggered a stroke.
Because when little girls have overactive imaginations
we apparently imagine we have a rare form of epilepsy,
or an acute form of asthma,
or that our name IS our name.
I was thinking about this matched mother/daughter set
of discounted, disbelieved, degraded children
ridiculed by adults
for stubbornly believing themselves, and their experience
even in the face of enormous social pressure
to believe OTHERWISE;
because
I've been thinking heavily about a conversation
I had (recently, around here)
about 'work ethic'.
Historically, despite arguments to the contrary,
regardless of curses, catcalls, and threats,
I am going to do... what I need to do... to be comfortable
and to live.
To enforce my boundaries,
abide my limitations,
respect my experience,
and know myself deeply,
while making clear my needs
and supporting the needs of others
with respect, politeness, and dignity.
And I remain *astounded*
that this could be interpreted by ANYONE as selfishness.
As laziness.
As contrariness.
As an excuse.
As insubordination.
As feeble moral fiber,
or lax work ethic.
Yes. I admit it,
I am my own top priority.
An employer, for instance,
doesn't even come close.
I promise, I don't waste time,
I preserve it! I have EVERY REASON to!
It's amazing what years in ICU,
millions in hospital bills
(Thanks 1980s welfare with total child coverage!!),
years of physical pain and discomfort
of both illness and treatments,
decades of personal restraint,
and most of my family,
my teachers,
and my peers
painting me as a liar
for living with my own rules as I needed,
despite all the dyin' I was also obviously doing....
brings me to confront this question
over and over....
....
What good is a personal ethic,
a personal paradigm,
a personal experience
if you try and imagine it is equally applicable to *everyone*?
That question goes in all directions,
including coming back at me.
I think that's what I like about it.
The individual nature of individual nature, by nature.. is individual.
What are we saying when we try to apply (or deny) our personal unique experiences
as our lead measuring stick as our expectations for/of others?
We discount them... (or we discount ourselves)
if what we see is too disparate
from the little sliver we DO know as
The Real
whether or not
it actually is
indeed
REAL
.....for others.
She lives alone in a converted chicken coop
clinging to 10 wooded south-facing mountainside acres
with no power,
no water,
with her 5 horses,
2 chickens,
and her dog, Bucky
who answers to "Damn Dog!"
just a little bit faster....
so "Bucky" might as well be his nickname.
A formative experience happened to my mother
when she was 8 years old in second grade
when her teacher on the first day mixed up her,
and another girl
and called each girl
by the OTHER girls' names.
The other girl, Jan
thought that was fine.
My mom,
was INCENSED.
She was NOT Jan, she was Kay.
She refused to answer to Jan...
but since her teacher called her Jan,
and Jan *answered* to "Kay",
all her classmates
called her Jan, too.
This lasted all year long.
This was 1955, and teachers were not to be argued with.
My mom tried to reason with the teacher,
the teacher reprimanded her for impertinence
for correcting a teacher.
If she wasn't Jan, how come the other girl
answered to "Kay" if her name was "Jan"?
She called my mom a liar.
The kids in her class called her "retard" and "idiot"
and teased her for not knowing her own name.
My mom tried to get her mother to correct the teacher,
my Grandmother said, "Who cares? You know your name is Kay.
What does it matter what anyone else says?
Just answer to 'Jan'. Problem solved."
My mom spent the whole year of 2nd grade
being called an idiot for refusing to answer to someone else's name,
while 'Kay'(Jan) became 'Teacher's Pet' for all her 'good behavior'.
No one defended my mom.
No one stood up for her.
Not Jan.
Not her mother.
Not her first grade teacher, who knew her.
She was on her own, all year.
When I was a child,
it was my severe asthma that was not believed.
Those who grew up in the 1940's, 50's, and 60's
(ie: my teachers, my authority figures as a child of the 80's)
believed asthma was 'made up'.
They were taught it was psychological feedback loop,
like a tantrum.
It was BEHAVIORAL.
They were taught there was no such things as food allergies
(that were not anaphylactic),
dander, grass, or dust allergies,
and CERTAINLY no such thing as being allergic to smells,
certain levels of physical activity,
or air pollution.
Absolutely impossible.
I was "picky".
I was a liar.
Teachers.
Coaches.
My friend's parents.
My grandmother.
My aunt *and* uncles.
I was "coddled" and "lazy"
and THAT was my problem.
I could not trust most adults in my life,
to preserve my life
in case of an asthma attack.
I had to be in full control of my multiple medications,
and my avoidance of a LONG list of allergens
and to self-diagnose/self-treat/self-track
all stages of any asthma attack
as an individual
by the time I was 6.
By 8 or 9, I had it DOWN.
My grandma wasn't convinced,
until I was in an ambulance in Seattle,
after having a very fast onset attack
when she took me on vacation to see her wily old friend.
I came in from outside, gasping...
saying, "Something is wrong. I think I need to go to the hospital."
She poo-pooh'd me, saying she'd do no such thing.
I'm just bored and overreacting.
She called the ambulance when she grabbed my wrist,
to pull me over to a chair...
and my heartbeat was skyrocketing,
over 200 bpm, I was ghastly pale.
As one EMT was intubating me
and the other asked her point blank,
"How did you let this go on so long?
This is very serious, you know."
And my grandma honestly told him,
"I thought... she was kidding.
I thought she was upset.
To be honest, she ALWAYS does this.
Can it really be that serious?"
The EMT looked at her and said,
"Does this look like WE'RE kidding, ma'am?
Are you telling me you don't believe this is real?
Believe me right now, and understand that what we are doing
to keep her breathing is painful,
and apologize because this is your fault if you watched this spiral happen
and did nothing."
My grandma was NOT a woman used to be being talked to this way.
She was shocked silent and tearful; she nodded.
I focused on this,
rather than the feeling of being intubated.
He asked her if I was on any medications.
She said "Yes, several."
"What are they?"
She crumpled.
It's the only time I've ever seen my grandmother cowed.
Seen her afraid. Seen her... quiet.
"I don't know. She handles it."
I was intubated and being bagged by that time,
I was focusing on not breathing,
and letting them do it for me,
but I was terrified.. on high alert
trying not to panic.
He asked if I could write down my medications.
I was 7 years old.
I wrote down all 6 of my medications,
and my dosages and timing.
Four twice-daily pills,
2 inhalers,
and the 3 medical devices I don't leave home without.
I tried to talk, to clarify...
bad idea.
I choked and gagged on the intubation setup.
It does strange things to a child's mind
when trusted adults
and authority figures
dismiss your *very real* reality,
because they *believe* they know better.
It does other things
what that person is finally told off
but a grander authority figure.
Spending 9 months being told
by a teacher and the entire class,
that you don't know your own name.
It AFFECTS you.
It INFECTS you.
Mom never gave in.
She refused to be "Jan".
She didn't care if it "didn't matter".
She didn't care if she was in trouble,
if she was teased,
if she was tormented...
she was NOT Jan,
and she was NOT going to give her teacher
the satisfaction of MAKING her "Jan".
My mom is one of the most stubborn people
you will ever meet
(if you ever meet her)
hence being 71 years old
living alone on a mountaintop
with no water/electricity
hauling water for 5 horses,
and snowed in for up to 2 months a year.
Her choice. PROMISE.
We tried SO HARD to talk her out of it.
But, I was lucky.
OTHER people didn't believe me.
Other people distrusted my 'claims' of asthma
when I had to stop running in gym,
or couldn't pet someone's cat
(or even go to their house because they HAD a cat),
or had to say 'no' to chocolate cake
or peanut butter.
But I had a mom who believed me,
and who stood up for me,
and trained me to stand up for myself.
And also how to advocate
for others.
In fact, my asthma
was a replay of "Your name is Jan"
for my mom.
Because... her mother,
her brothers and sister,
her friends
didn't believe in MY asthma.
They told her she was overreacting.
They told her *I* was overreacting.
They told her she must have MISUNDERSTOOD the doctors.
They told her SHE was making me sick in some
Münchhausen by Proxy situation
for attention, or as a cry for help
because it isn't POSSIBLE
for me to be so "sensitive",
unless I was faking it,
or unless it was *her* fault.
They knew I was in the hospital all the time,
they knew I was being treated by a slough of doctors,
but they figured
it was all...
.... an unfathomable ploy.
Mine or hers
they weren't sure.
Gym and home ec teachers would take my doctors notes on the matter,
of banned activities and foods,
but not my mother's.
And my word was dirt, of course.
I was just a kid, the owner of this body.
What did *I* know?
She wasn't to be trusted, either.
She was considered complicit in my scam,
or perhaps my ringleader
and I a duped victim of her mental/emotional "sensitivities".
In High School, I met the only other person
who had ever encountered this sort of treatment.
My best friend Morgan had a little sister Alice
who suffered and extreme form of epilepsy
where she had hundreds, if not thousands of small seizures every day.
Every. Single. Day.
She had trouble tracking conversations,
keeping memories straight,
she was always complaining of strange smells
and random, wandering headaches.
She was a *violent* sleepwalker. Sometimes she fell suddenly.
Teachers said she was an attention seeker,
because they *knew* what seizures were... from TV..
and what they saw her eyes glaze and then clear...
they were obviously NOT seizures.
She was lying. She was a liar.
She was making up excuses.
It was a lack of focus.
It was a lack of interest.
It was laziness.
It was inattention.
It was an overactive imagination.
She died at 26, when a bad series of seizures
triggered a stroke.
Because when little girls have overactive imaginations
we apparently imagine we have a rare form of epilepsy,
or an acute form of asthma,
or that our name IS our name.
I was thinking about this matched mother/daughter set
of discounted, disbelieved, degraded children
ridiculed by adults
for stubbornly believing themselves, and their experience
even in the face of enormous social pressure
to believe OTHERWISE;
because
I've been thinking heavily about a conversation
I had (recently, around here)
about 'work ethic'.
Historically, despite arguments to the contrary,
regardless of curses, catcalls, and threats,
I am going to do... what I need to do... to be comfortable
and to live.
To enforce my boundaries,
abide my limitations,
respect my experience,
and know myself deeply,
while making clear my needs
and supporting the needs of others
with respect, politeness, and dignity.
And I remain *astounded*
that this could be interpreted by ANYONE as selfishness.
As laziness.
As contrariness.
As an excuse.
As insubordination.
As feeble moral fiber,
or lax work ethic.
Yes. I admit it,
I am my own top priority.
An employer, for instance,
doesn't even come close.
I promise, I don't waste time,
I preserve it! I have EVERY REASON to!
It's amazing what years in ICU,
millions in hospital bills
(Thanks 1980s welfare with total child coverage!!),
years of physical pain and discomfort
of both illness and treatments,
decades of personal restraint,
and most of my family,
my teachers,
and my peers
painting me as a liar
for living with my own rules as I needed,
despite all the dyin' I was also obviously doing....
brings me to confront this question
over and over....
....
What good is a personal ethic,
a personal paradigm,
a personal experience
if you try and imagine it is equally applicable to *everyone*?
That question goes in all directions,
including coming back at me.
I think that's what I like about it.
The individual nature of individual nature, by nature.. is individual.
What are we saying when we try to apply (or deny) our personal unique experiences
as our lead measuring stick as our expectations for/of others?
We discount them... (or we discount ourselves)
if what we see is too disparate
from the little sliver we DO know as
The Real
whether or not
it actually is
indeed
REAL
.....for others.