A Bubble off Center
By Araminta Self
I had a dream the other night that I was living in a nomadic clan. My family looked like
those paintings of early North American natives. In my dream, I was running
from some sort of wild beast. I fell and my eleven year old son ran back to
help me. My mother, who was some sort of head matriarch, told him to leave me
and keep running; I was weak and useless. I woke from the dream and after I came
to my groggy but coherent senses, I went to check on my peacefully sleeping
child. Not wanting to wake him, I gently touched his cheek and thanked him for
at least stopping to try helping me.
from some sort of wild beast. I fell and my eleven year old son ran back to
help me. My mother, who was some sort of head matriarch, told him to leave me
and keep running; I was weak and useless. I woke from the dream and after I came
to my groggy but coherent senses, I went to check on my peacefully sleeping
child. Not wanting to wake him, I gently touched his cheek and thanked him for
at least stopping to try helping me.
This dream would have been just another odd
nightmare but it had more significance to me. I couldn't dismiss it as being a
random string of thoughts, laced together by my subconscious, causing me a
sense of discomfort. I've had this dream a lot over the years; different people were assigned the role as my attempted
rescuer. The first time the dream occurred, I was ten. I had watched a nature
show on PBS. The show featured a gazelle running from a cheetah. It was
callously left behind by the stronger runners. None of them stopping to help
it. The gazelle had been injured, or maybe it had been old and feeble; I forget
which. I do remember, however, I was disturbed by the show. I obsessed over
those cruel acts of nature and the apparently mean spirit that my beloved
God, had demonstrated against this
helpless creature. How could a loving creator, allow that to happen?
nightmare but it had more significance to me. I couldn't dismiss it as being a
random string of thoughts, laced together by my subconscious, causing me a
sense of discomfort. I've had this dream a lot over the years; different people were assigned the role as my attempted
rescuer. The first time the dream occurred, I was ten. I had watched a nature
show on PBS. The show featured a gazelle running from a cheetah. It was
callously left behind by the stronger runners. None of them stopping to help
it. The gazelle had been injured, or maybe it had been old and feeble; I forget
which. I do remember, however, I was disturbed by the show. I obsessed over
those cruel acts of nature and the apparently mean spirit that my beloved
God, had demonstrated against this
helpless creature. How could a loving creator, allow that to happen?
My mother assured me it was a
normal, natural course of nature. She had explained that the weak, weary,
disabled, and old are usually left to fend for themselves in the natural
kingdom. I remember feeling glad to be a human; that we were above that type of
primitive behavior. At least I thought this on a conscious level. My subconscious, however, knew there was something
off about me. There was a part of me that felt I would surely slow down the
clan and be left behind if we were part of the natural kingdom. I didn't know
what it was, but my very being knew that there was something not quite balanced
about me. This idea may have been the catalyst for my recurrent dream.
normal, natural course of nature. She had explained that the weak, weary,
disabled, and old are usually left to fend for themselves in the natural
kingdom. I remember feeling glad to be a human; that we were above that type of
primitive behavior. At least I thought this on a conscious level. My subconscious, however, knew there was something
off about me. There was a part of me that felt I would surely slow down the
clan and be left behind if we were part of the natural kingdom. I didn't know
what it was, but my very being knew that there was something not quite balanced
about me. This idea may have been the catalyst for my recurrent dream.
I was fascinated to no end and a developed
a drive to learn more about the gazelle.
I wrote a report on the animal for my fifth grade class. If I'm to be candidly
honest, I have to admit, even if it was the nimblest and most agile of
creatures, it was no match for a predator with speed, fangs, and claws. That
said, I related to the gazelle in more ways than one. I was pretty and slight
of build like the gazelle. Just as the gazelle was at the mercy of its
predators, I was at the mercy of my sisters and my loyal, but rough and tumble
friends; who always seemed more nimble and more assertive then I. The
similarities ended there. I was not agile or coordinated. I was actually quite
clumsy. That fact, of course, was related to the reason why I felt different.
a drive to learn more about the gazelle.
I wrote a report on the animal for my fifth grade class. If I'm to be candidly
honest, I have to admit, even if it was the nimblest and most agile of
creatures, it was no match for a predator with speed, fangs, and claws. That
said, I related to the gazelle in more ways than one. I was pretty and slight
of build like the gazelle. Just as the gazelle was at the mercy of its
predators, I was at the mercy of my sisters and my loyal, but rough and tumble
friends; who always seemed more nimble and more assertive then I. The
similarities ended there. I was not agile or coordinated. I was actually quite
clumsy. That fact, of course, was related to the reason why I felt different.
The explication for my strong
association to the gazelle wouldn't be discovered until my late teen years when
I was made aware of the anomaly. The name is quite fancy and sounds very
brooding. It's known as Agenesis of the Corpus Callosum or as the locals
call it, AgCC. I will go into detail about it later.
association to the gazelle wouldn't be discovered until my late teen years when
I was made aware of the anomaly. The name is quite fancy and sounds very
brooding. It's known as Agenesis of the Corpus Callosum or as the locals
call it, AgCC. I will go into detail about it later.
The discovery would validate
some of my life's obstacles but it would also open many doors. One of the most
significant benefits from the discovery is that it has helped shape many of my
relationships; both with the external world around me, and internally within
myself.
some of my life's obstacles but it would also open many doors. One of the most
significant benefits from the discovery is that it has helped shape many of my
relationships; both with the external world around me, and internally within
myself.
Often, when a person has an anomaly, but is
none the wiser about it, until an event causes its indirect discovery, his or
her world is turned upside down. His or her whole existence— as it was
understood, is now altered permanently. He or she will have to come to terms
with this new existence. This may not be easy for many. It wasn't easy for
me.
none the wiser about it, until an event causes its indirect discovery, his or
her world is turned upside down. His or her whole existence— as it was
understood, is now altered permanently. He or she will have to come to terms
with this new existence. This may not be easy for many. It wasn't easy for
me.
I find myself often questioning
the reason for my anomaly; both on a spiritual level and a physical one. In
truth, I question my own worth. I have
had to re-learn how to accept myself. I've had to find a peaceful way to
develop a relationship between myself and this ACC albatross around my neck.
the reason for my anomaly; both on a spiritual level and a physical one. In
truth, I question my own worth. I have
had to re-learn how to accept myself. I've had to find a peaceful way to
develop a relationship between myself and this ACC albatross around my neck.
When others are made aware of my oddity they
often associate my worth as a person by the missing body part. In truth, when I
do tell people of my anomaly, I find that a new relationship forms. At the
center of the relationship is a perception of who I am and how I am supposed to
act in accordance to what it means when one is different.
often associate my worth as a person by the missing body part. In truth, when I
do tell people of my anomaly, I find that a new relationship forms. At the
center of the relationship is a perception of who I am and how I am supposed to
act in accordance to what it means when one is different.
What is this anomaly? I suppose
I need to explain that detail before I move forward. It has to do with my
brain, which is missing a crucial link between the two hemispheres. That link
is called the Corpus Callosum. It's a bundle of more than 250 million neurons.
It's completely absent; I was born without it.
I need to explain that detail before I move forward. It has to do with my
brain, which is missing a crucial link between the two hemispheres. That link
is called the Corpus Callosum. It's a bundle of more than 250 million neurons.
It's completely absent; I was born without it.
The Corpus Callosum, at one time
was said to house the center of creativity. I had a person once say to me,
“well no wonder you're a terrible writer! You don't have the creative part of
your brain.” I was also asked by a senior high, English teacher, why someone as
pretty as myself could have such ugly hand writing. Yes, I am not making this
stuff up, sadly. These were actual comments. Neither person showed much couth
and I often wonder if they suffer from a brain anomaly as well. In truth, the
Corpus Callosum, nuzzled smack dab in the middle of the brain, is a
communication device, allowing electrical impulses to travel between the left
and right cerebral hemispheres. It is literally thought of as a bridge. This of
course explains my lack of quick wit at times and my atrocious hand writing and
grammar.
was said to house the center of creativity. I had a person once say to me,
“well no wonder you're a terrible writer! You don't have the creative part of
your brain.” I was also asked by a senior high, English teacher, why someone as
pretty as myself could have such ugly hand writing. Yes, I am not making this
stuff up, sadly. These were actual comments. Neither person showed much couth
and I often wonder if they suffer from a brain anomaly as well. In truth, the
Corpus Callosum, nuzzled smack dab in the middle of the brain, is a
communication device, allowing electrical impulses to travel between the left
and right cerebral hemispheres. It is literally thought of as a bridge. This of
course explains my lack of quick wit at times and my atrocious hand writing and
grammar.
There are other callosums
centered in and around the Corpus Callosum that can take up the slack of their
missing comrade. Research is being done by bigwig experts to find out just how
the brain can rewire itself to allow for communication in the first place.
This, of course, leads me to the next part of my story.
centered in and around the Corpus Callosum that can take up the slack of their
missing comrade. Research is being done by bigwig experts to find out just how
the brain can rewire itself to allow for communication in the first place.
This, of course, leads me to the next part of my story.
The discovery of who and what I was all about would
be unearthed vie modern technology. Until the discovery, I was enjoying; quite with blissful ignorance, that era of life. I
was a young adult, no longer living at home. I was in the early stages of
finding myself. However, my existence,
as I knew it, would change inside a giant head scanner.
be unearthed vie modern technology. Until the discovery, I was enjoying; quite with blissful ignorance, that era of life. I
was a young adult, no longer living at home. I was in the early stages of
finding myself. However, my existence,
as I knew it, would change inside a giant head scanner.
Often, when people have a turning point in their
life, it's usually accompanied by an age. For some it may be sixteen, when the
average American teenager can drive. Another common turning point is the age of
twenty-one; the legal drinking age in the United States. For many, still, it is
eighteen, the official age of adulthood in the United States. I experienced
those rites of passage with not much fan fare. The turning point in my life:
The not so tender age of nineteen. For most, that age is about as significant
as the ages of twenty-two or sixty. It's just another year to pass through
until another golden milestone approaches. Many even consider it a limbo stage
of sorts; past the days of wild abandon and teenage recklessness but not yet a
full fledged experienced adult. All that aside, the age of nineteen represents
a turning point in my life. A crossroads, separated by raging waters
with no bridge to cross safely over. The age holds a memory I fear I'll most
assuredly be cursed with even after dementia sets in.
life, it's usually accompanied by an age. For some it may be sixteen, when the
average American teenager can drive. Another common turning point is the age of
twenty-one; the legal drinking age in the United States. For many, still, it is
eighteen, the official age of adulthood in the United States. I experienced
those rites of passage with not much fan fare. The turning point in my life:
The not so tender age of nineteen. For most, that age is about as significant
as the ages of twenty-two or sixty. It's just another year to pass through
until another golden milestone approaches. Many even consider it a limbo stage
of sorts; past the days of wild abandon and teenage recklessness but not yet a
full fledged experienced adult. All that aside, the age of nineteen represents
a turning point in my life. A crossroads, separated by raging waters
with no bridge to cross safely over. The age holds a memory I fear I'll most
assuredly be cursed with even after dementia sets in.
I had finished high school and I
felt I needed to do something significant with my life. I wished to do
something that would help prove my worth to myself and my mother, and make my
father proud. I toyed with the idea of buying a car and driving to Mexico. That
was not practical as I don't care for Mexican food. I took a road trip with a
few friends to say good bye and discuss our future.
felt I needed to do something significant with my life. I wished to do
something that would help prove my worth to myself and my mother, and make my
father proud. I toyed with the idea of buying a car and driving to Mexico. That
was not practical as I don't care for Mexican food. I took a road trip with a
few friends to say good bye and discuss our future.
While on the trip, we stopped in
Birmingham, Alabama. I walked down a street next to a convention center. It was
on the side of that building that I saw a poster which would change my life in
the most significant way, forever. It was an Army poster with the catch phrase
of the era, “Be all that you can be, in the Army”. I obeyed. I decided then
and there to join the United States Army and hopefully have the adventure of a
lifetime. The decision to join the Army is one I look back on and always tell
others I don't regret. That, I must confess, is not entirely true. I regret one
thing. I wish I would have kept my mouth shut about a certain head injury I
endured at age twelve from being bucked off of a spirited Arabian mare, whom I
had foolishly jumped onto bareback. That poor judgment, of daredevil
proportions, would cost me dearly in the area of blissful ignorance.
Birmingham, Alabama. I walked down a street next to a convention center. It was
on the side of that building that I saw a poster which would change my life in
the most significant way, forever. It was an Army poster with the catch phrase
of the era, “Be all that you can be, in the Army”. I obeyed. I decided then
and there to join the United States Army and hopefully have the adventure of a
lifetime. The decision to join the Army is one I look back on and always tell
others I don't regret. That, I must confess, is not entirely true. I regret one
thing. I wish I would have kept my mouth shut about a certain head injury I
endured at age twelve from being bucked off of a spirited Arabian mare, whom I
had foolishly jumped onto bareback. That poor judgment, of daredevil
proportions, would cost me dearly in the area of blissful ignorance.
When you make the mistake of
being absurdly honest on a medical history form for the military, you get poked
and prodded more thoroughly than a lab rat. Not knowing this fact at the time,
I took the leap of faith and admitted to a head injury. If you have ever worked
for the United States government, you would be quick to agree that it's known
for its over broad assessment. I was no exception. Away they whisked me into a
CT machine. That machine betrayed my most intimate secret. I'm certain Jehovah
actually meant to keep that top secret fact about me, hidden. Why else would a
wise God have given me the fairly decent facade of a normal appearance, coupled
with an average intellect and a some what pretty face? Don't get me wrong, the fact that the creator
forgot to install a corpus callosum was most assuredly no mistake.
Perhaps, he simply made the small error of forgetting to place me in an earlier
century after he neglected to install the crucial middle section of my brain. I
feel he must have intended to place my soul in a time before machines (that are able see through you better then
Superman's x ray vision) were invented.
being absurdly honest on a medical history form for the military, you get poked
and prodded more thoroughly than a lab rat. Not knowing this fact at the time,
I took the leap of faith and admitted to a head injury. If you have ever worked
for the United States government, you would be quick to agree that it's known
for its over broad assessment. I was no exception. Away they whisked me into a
CT machine. That machine betrayed my most intimate secret. I'm certain Jehovah
actually meant to keep that top secret fact about me, hidden. Why else would a
wise God have given me the fairly decent facade of a normal appearance, coupled
with an average intellect and a some what pretty face? Don't get me wrong, the fact that the creator
forgot to install a corpus callosum was most assuredly no mistake.
Perhaps, he simply made the small error of forgetting to place me in an earlier
century after he neglected to install the crucial middle section of my brain. I
feel he must have intended to place my soul in a time before machines (that are able see through you better then
Superman's x ray vision) were invented.
Dream as I might of being born
in a bygone time, I was stuck being born in the crummy twentieth century, alongside
the birth of high powered technology. Oddly enough, and here's the kicker, even
with a partial brain, the Army still took me. Go figure. I'm glad they did
though. Army Basic Training was the most fun I've had within a six week period
of my life to date. Even the early morning physical training sessions;
conducted ever so strategically in the pouring rain, were exciting and
rewarding for me. Don't get me
wrong, it didn't come easy to me.
in a bygone time, I was stuck being born in the crummy twentieth century, alongside
the birth of high powered technology. Oddly enough, and here's the kicker, even
with a partial brain, the Army still took me. Go figure. I'm glad they did
though. Army Basic Training was the most fun I've had within a six week period
of my life to date. Even the early morning physical training sessions;
conducted ever so strategically in the pouring rain, were exciting and
rewarding for me. Don't get me
wrong, it didn't come easy to me.
There were telltale signs of my
brain anomaly that were with me my whole life and didn't abandon me during
Basic Training. For example. Zeroing my weapon; I was able to do that about as
well as I was able to cut a straight line in kindergarten. In other words I was
sadly inept at the skill. I still can't cut a straight line and I am 35 years
old. Recently, thought, I am proud to say, I have learned to zero a weapon; the
ones at children fun centers, where you aim at a target and win tickets. Hay,
it's a start.
brain anomaly that were with me my whole life and didn't abandon me during
Basic Training. For example. Zeroing my weapon; I was able to do that about as
well as I was able to cut a straight line in kindergarten. In other words I was
sadly inept at the skill. I still can't cut a straight line and I am 35 years
old. Recently, thought, I am proud to say, I have learned to zero a weapon; the
ones at children fun centers, where you aim at a target and win tickets. Hay,
it's a start.
I'm amazingly strong, however
and Basic Training was a place to show that gift off. I was able to do 160
pushups in one set. I'm still proud of that number. I've always had upper body
strength. Sadly that alone could not keep me in the Army.
and Basic Training was a place to show that gift off. I was able to do 160
pushups in one set. I'm still proud of that number. I've always had upper body
strength. Sadly that alone could not keep me in the Army.
I never finished Basic Training.
I suffered an acute medical condition, not related to my brain. It was with a
heavy heart I left that wondrous life behind to remain an unfinished chapter in
my life. But nonetheless, I am one to take fate at fate's terms. I wasn't able
to finish due to ovarian cysts that got out of control causing me severe pain
and other issues. After I was medically discharged from Army Basic, I decided
that I might as well enroll in college since Uncle Sam didn't want me. You know what? I'll be forever grateful to my
logical brain for making that decision.
I suffered an acute medical condition, not related to my brain. It was with a
heavy heart I left that wondrous life behind to remain an unfinished chapter in
my life. But nonetheless, I am one to take fate at fate's terms. I wasn't able
to finish due to ovarian cysts that got out of control causing me severe pain
and other issues. After I was medically discharged from Army Basic, I decided
that I might as well enroll in college since Uncle Sam didn't want me. You know what? I'll be forever grateful to my
logical brain for making that decision.
I have known of my oddity for fifteen years
and it still feels surreal to me. This is because I have somewhat of a normal
intellect. I am all too aware of the brain and its abilities. My college
education centered on the central nervous system and its potentials; I have a
BA in Psychology. My education gave me more awareness of what I don't have.
This made it harder for me. I was that much more aware of what I could have.
Therefore often I find that I regret the discovery because there are not a lot
of people who want to feel different and have it confirmed that they are indeed
“different.” Trust me, there is comfort to be found in occasional ignorance.
Having AgCC can feel like an albatross around my neck at times.
and it still feels surreal to me. This is because I have somewhat of a normal
intellect. I am all too aware of the brain and its abilities. My college
education centered on the central nervous system and its potentials; I have a
BA in Psychology. My education gave me more awareness of what I don't have.
This made it harder for me. I was that much more aware of what I could have.
Therefore often I find that I regret the discovery because there are not a lot
of people who want to feel different and have it confirmed that they are indeed
“different.” Trust me, there is comfort to be found in occasional ignorance.
Having AgCC can feel like an albatross around my neck at times.
One source of my irritation is when people
find out about the little brain glitch of mine, they often respond by saying,
“wow, you're a miracle! You're so smart for someone with a brain anomaly!” They
say this with honest amazement; as if having a brain anomaly automatically
qualifies you for being an individual who is a bubble off center ,or a
slobbering, slow witted person.
find out about the little brain glitch of mine, they often respond by saying,
“wow, you're a miracle! You're so smart for someone with a brain anomaly!” They
say this with honest amazement; as if having a brain anomaly automatically
qualifies you for being an individual who is a bubble off center ,or a
slobbering, slow witted person.
I once saw this episode on NOVA,
a show on PBS that explores scientific findings and facts. The episode centered
on this gal who had been born with enlarged lateral ventricles, so much so that
the cerebral matter of the left and right hemispheres looked as if they were
squished aside. Still, she was this amazing intellect. She was a living,
breathing, Spock-like character. Upon meeting her, you may be convinced there
is reason to believe in miracles. You might ask yourself, “Her brain is so
deformed, how can she function?” Well, at least those were my reactions.
a show on PBS that explores scientific findings and facts. The episode centered
on this gal who had been born with enlarged lateral ventricles, so much so that
the cerebral matter of the left and right hemispheres looked as if they were
squished aside. Still, she was this amazing intellect. She was a living,
breathing, Spock-like character. Upon meeting her, you may be convinced there
is reason to believe in miracles. You might ask yourself, “Her brain is so
deformed, how can she function?” Well, at least those were my reactions.
I have nothing on her. I'm only
missing a teeny tiny part of my brain. I'm not even sure it considered part of
the brain itself. I was told by my family practitioner that the Corpus Callosum
is not part of the “brain” itself but is
part of the central nervous system, yes. However, the actual brain is this
blood rich, pink matter; spongy things that the bigwig, smarty pants call the
cerebral cortex and frontal lobe. The Corpus Callosum is just this connective
tissue.
missing a teeny tiny part of my brain. I'm not even sure it considered part of
the brain itself. I was told by my family practitioner that the Corpus Callosum
is not part of the “brain” itself but is
part of the central nervous system, yes. However, the actual brain is this
blood rich, pink matter; spongy things that the bigwig, smarty pants call the
cerebral cortex and frontal lobe. The Corpus Callosum is just this connective
tissue.
The woman featured on NOVA was
very intelligent and could communicate well. However, she had little to no
emotion, and that really bothered me. I have issues with people who display a
phenomenon known as flat affect. It's when people show no expression on their
faces. They rarely smile or frown. People need emotion. So I guess I would say
she was a walking lobotomy. So brilliant, but no emotion; this leads to
antisocial, card holding, crazy thinking
in some. Of course, I'm just jealous. Let's face it, that gal is the “miracle”
not me. To have pure logical ability is not one of my strengths. At times, I
seem to run off of emotion and thrive on chaos the way a vampire thrives off of
blood.
very intelligent and could communicate well. However, she had little to no
emotion, and that really bothered me. I have issues with people who display a
phenomenon known as flat affect. It's when people show no expression on their
faces. They rarely smile or frown. People need emotion. So I guess I would say
she was a walking lobotomy. So brilliant, but no emotion; this leads to
antisocial, card holding, crazy thinking
in some. Of course, I'm just jealous. Let's face it, that gal is the “miracle”
not me. To have pure logical ability is not one of my strengths. At times, I
seem to run off of emotion and thrive on chaos the way a vampire thrives off of
blood.
As I said earlier, people are in awe over my
intellect, despite the fact I am brain challenged. I recall a memory, wherein a
smarty pants, expert said to me: “As I looked at your brain on the MRI, I
blurted out loud to the research team, How could that brain belong to that
person?” She said this in good humor. I hold nothing against her for
impulsively blurting out that comment. However, it got me to thinking.
intellect, despite the fact I am brain challenged. I recall a memory, wherein a
smarty pants, expert said to me: “As I looked at your brain on the MRI, I
blurted out loud to the research team, How could that brain belong to that
person?” She said this in good humor. I hold nothing against her for
impulsively blurting out that comment. However, it got me to thinking.
I thought, to myself, “Well,
that was rude.” Yet, I said nothing back. I smiled and nodded in the fashion of
a newly crossed-over- the-border Mexican who speaks nar a lick of English, but
does not want to give that inconvenient- truth away. I felt just as
discriminated against as well. Of course that brain [mine] belonged to
that person, [me]! That is why they were paying me the big bucks! I
agreed to be poked, prodded, and unveiled so long as they paid me for my time
and humiliation. It served two purposes: First, they could be amazed at the
wonders of the supposedly malformed brain and its crazy, cool ability to
compensate. And second, I could be amused that they would pay me to do nothing
but lay there and punch buttons. Now that was a worthy trade off. I was
never one who liked to actually work for my pay. According to a recent facebook
test and a tarot card reading, I was royalty in my past life. Two accurate,
dead on, souses can't be wrong, right? I bet, in a past life, I was one of
those arrogant queens who beheaded unsuspecting, innocent town folk; hence my
own missing head part in this life. I feel that's a more romantic explanation
then just a random genetic fluke.
that was rude.” Yet, I said nothing back. I smiled and nodded in the fashion of
a newly crossed-over- the-border Mexican who speaks nar a lick of English, but
does not want to give that inconvenient- truth away. I felt just as
discriminated against as well. Of course that brain [mine] belonged to
that person, [me]! That is why they were paying me the big bucks! I
agreed to be poked, prodded, and unveiled so long as they paid me for my time
and humiliation. It served two purposes: First, they could be amazed at the
wonders of the supposedly malformed brain and its crazy, cool ability to
compensate. And second, I could be amused that they would pay me to do nothing
but lay there and punch buttons. Now that was a worthy trade off. I was
never one who liked to actually work for my pay. According to a recent facebook
test and a tarot card reading, I was royalty in my past life. Two accurate,
dead on, souses can't be wrong, right? I bet, in a past life, I was one of
those arrogant queens who beheaded unsuspecting, innocent town folk; hence my
own missing head part in this life. I feel that's a more romantic explanation
then just a random genetic fluke.
I’ve undergone three or four research trials.
Some were fun and exciting. Some were mind numbingly dull. Though I made good
money, I would not have gone through with those incredibly idiotic tasks
without financial compensation. Many of the studies required magnetic
resolution imaging or an MRI. These MRI's are confining tunnels that get very
hot. The question has arisen if I get claustrophobic in them. To that, I reply,
“Not when $600.00, along with a few days stay in California, my favorite place
on earth, is waiting for me at the end of the tunnel.”
Some were fun and exciting. Some were mind numbingly dull. Though I made good
money, I would not have gone through with those incredibly idiotic tasks
without financial compensation. Many of the studies required magnetic
resolution imaging or an MRI. These MRI's are confining tunnels that get very
hot. The question has arisen if I get claustrophobic in them. To that, I reply,
“Not when $600.00, along with a few days stay in California, my favorite place
on earth, is waiting for me at the end of the tunnel.”
I know that probably sounds a
bit selfish. The way I see it, I was cheated out of a vital part of my cranial
make up, so I am owed compensation. Before you go chastising me, let me
explain. If you bought a car and it didn't come equip with an otherwise
standard feature, you would be able to return the car on an assured recall and
get compensation. This is my version of a compensation policy. Sadly my brain
will not be recalled. However, make no mistake about it, if AgCC brains are
recalled, I will be the first to turn it over to the creator. But in reality,
since I was short changed, I will make up that change in monetarily rewarded,
research opportunities. I've been invited to participate in a lot of research.
One was of the genetic discovery type. It sounded fascinating. Alas, however,
they did not want to offer me financial compensation. The gal who was setting
up the appointments had the nerve to tell me that I could get copies of a CT
and MRI instead of money. I have a husband who does MRI's and CT scans for a
living, I get all the free ones my body's tolerance for radiation will allow.
bit selfish. The way I see it, I was cheated out of a vital part of my cranial
make up, so I am owed compensation. Before you go chastising me, let me
explain. If you bought a car and it didn't come equip with an otherwise
standard feature, you would be able to return the car on an assured recall and
get compensation. This is my version of a compensation policy. Sadly my brain
will not be recalled. However, make no mistake about it, if AgCC brains are
recalled, I will be the first to turn it over to the creator. But in reality,
since I was short changed, I will make up that change in monetarily rewarded,
research opportunities. I've been invited to participate in a lot of research.
One was of the genetic discovery type. It sounded fascinating. Alas, however,
they did not want to offer me financial compensation. The gal who was setting
up the appointments had the nerve to tell me that I could get copies of a CT
and MRI instead of money. I have a husband who does MRI's and CT scans for a
living, I get all the free ones my body's tolerance for radiation will allow.
I declined and will continue declining any
research that does not pay me. Even those annoying automated phone surveys; if
they don't pay I don't waste my day. I say I'm thrilled to help scientific
discovery. Truth be told, I don't give a rat's pa'tooty about any of the
research. How's it going to benefit me in any way, shape, or form? I have a
brain glitch. I'm a bit flighty. Yeah, I'll be the first to admit that.
Nonetheless, I have to ask, how will studying my brain to see if I think like
the “normal people” think, help me think like a normal person? Maybe I
don't want to know how the “normal” think. I say this simply because I
liked it better when I was considered one of the “normal people”, just slightly
a bubble off center. I was once your normal, life of the party, pretty—yet
ditzy blond. Now, not only am I the ditzy blond, I'm one with a not so normal
brain! Where is the fairness in that?
research that does not pay me. Even those annoying automated phone surveys; if
they don't pay I don't waste my day. I say I'm thrilled to help scientific
discovery. Truth be told, I don't give a rat's pa'tooty about any of the
research. How's it going to benefit me in any way, shape, or form? I have a
brain glitch. I'm a bit flighty. Yeah, I'll be the first to admit that.
Nonetheless, I have to ask, how will studying my brain to see if I think like
the “normal people” think, help me think like a normal person? Maybe I
don't want to know how the “normal” think. I say this simply because I
liked it better when I was considered one of the “normal people”, just slightly
a bubble off center. I was once your normal, life of the party, pretty—yet
ditzy blond. Now, not only am I the ditzy blond, I'm one with a not so normal
brain! Where is the fairness in that?
Please don't misunderstand. I'm
not all bitter and angry over the awareness of my new found self. Though it can
be burdensome, I'm glad for the albatross in some ways. I've met and developed
relationships with others like me. This is because AgCC is thought to be
present in one in four thousand people. Those numbers are in accordance with a
recent statistical review on the National Disorders of the Corpus callosum web
page, www.nodcc.org. That
said, I am bound to connect with other like minded people, Pun intended.
not all bitter and angry over the awareness of my new found self. Though it can
be burdensome, I'm glad for the albatross in some ways. I've met and developed
relationships with others like me. This is because AgCC is thought to be
present in one in four thousand people. Those numbers are in accordance with a
recent statistical review on the National Disorders of the Corpus callosum web
page, www.nodcc.org. That
said, I am bound to connect with other like minded people, Pun intended.
The first person I corresponded
with was a gal from Ohio who found out in her late 40's. I found her through a
Yahoo chat group for Corpus Callosum disorders. She was a school teacher for
years before she found out. She had many of the same issues I had growing up. Poor
coordination, fine motor and speech issues, social awkwardness; Well, okay I
was not all that socially awkward. Many with AgCC claim to be. I grew up with
four sisters; I was never allowed to be socially awkward. They would have tar
and feathered me if I ever ruined a party or acted out of the ordinary toward
one of their friends. I learned by observing how they acted. That helped.
Perhaps, others with AgCC were not as lucky as I was in that regards. It is a
mystery to me why some with the anomaly are socially able and others inept.
There are studies in the works to link our kind and Asperger’s Syndrome. This
is a syndrome that is characterized by individuals who are very intelligent but
have poor social skills. It's just as much a viable explainable as any. At any
rate, the spectrum of individuals with AgCC is a great. There are those of us
who walk, talk, eat, drive, have spouses and children; we even hold down job as
well as understand and laugh at jokes. Then there are the classic, Hollywood
style intellectually delayed individuals with ineptness ranging from moderate
to severe. The spectrum is wide with the only real similarities being that
there is missing brain tissue.
with was a gal from Ohio who found out in her late 40's. I found her through a
Yahoo chat group for Corpus Callosum disorders. She was a school teacher for
years before she found out. She had many of the same issues I had growing up. Poor
coordination, fine motor and speech issues, social awkwardness; Well, okay I
was not all that socially awkward. Many with AgCC claim to be. I grew up with
four sisters; I was never allowed to be socially awkward. They would have tar
and feathered me if I ever ruined a party or acted out of the ordinary toward
one of their friends. I learned by observing how they acted. That helped.
Perhaps, others with AgCC were not as lucky as I was in that regards. It is a
mystery to me why some with the anomaly are socially able and others inept.
There are studies in the works to link our kind and Asperger’s Syndrome. This
is a syndrome that is characterized by individuals who are very intelligent but
have poor social skills. It's just as much a viable explainable as any. At any
rate, the spectrum of individuals with AgCC is a great. There are those of us
who walk, talk, eat, drive, have spouses and children; we even hold down job as
well as understand and laugh at jokes. Then there are the classic, Hollywood
style intellectually delayed individuals with ineptness ranging from moderate
to severe. The spectrum is wide with the only real similarities being that
there is missing brain tissue.
I have connected with others like me at a national gathering called the
NODCC Conference, sponsored by, who else? The National Organization of
Disorders of the Corpus Callosum. Held every other summer in late July, all
over the United States, This conference is where I go to feel normal. I feel
part of a bigger plan. In essence, I go there to belong. The first year I went
was in 2006. A full eleven years after I discovered my anomaly. Why so long?
Well, for starters, I didn't have a need to care, nor vested interest in my
anomaly until I took a Biological Psychology course in college. Funny, how
university life creates a need for greater understanding. I wanted to win
brownie points with my instructor so I asked if I could do research on Agenesis
of the Corpus Callosum and present the findings to my fellow class mates. The
class went over malformations of the brain and I was a walking, talking live
cadaver. I felt special, indeed.
In the process of my research, I
became intrigued at how few studies there were. The few I managed to scrounge
up were done in the 21st century. The bulk of that research happened
at California Institute of Technology or Cal tech to the locals. It was because
of this research I discovered Dr. Lynn Paul and Dr. Warren Brown, leading
bigwigs in the field of AgCC. I wrote to Dr. Lynn Paul, at Cal tech, spilling
my life story. She wrote back asking me to participate in a study. The rest is
history.
became intrigued at how few studies there were. The few I managed to scrounge
up were done in the 21st century. The bulk of that research happened
at California Institute of Technology or Cal tech to the locals. It was because
of this research I discovered Dr. Lynn Paul and Dr. Warren Brown, leading
bigwigs in the field of AgCC. I wrote to Dr. Lynn Paul, at Cal tech, spilling
my life story. She wrote back asking me to participate in a study. The rest is
history.
It was through her and her
research team that I found out about the conference. I jumped at the chance to
go. It was in California so I could finally realize a life dream. I would visit
the Pacific Ocean. Not only did I realize my dream, I was also granted a bonus.
I was given the opportunity to meet fourteen others with my brain anomaly. In
the preceding years that number has grown from fourteen to more than thirty.
Those are just the adults with AgCC that make it to the conference. None were
exactly like me, but we all had some issue in common. One was the fact there
were a few of us over the age of 20. Another similarity was our willingness to
share our life stories with parents to infants and very young children with our
anomaly.
research team that I found out about the conference. I jumped at the chance to
go. It was in California so I could finally realize a life dream. I would visit
the Pacific Ocean. Not only did I realize my dream, I was also granted a bonus.
I was given the opportunity to meet fourteen others with my brain anomaly. In
the preceding years that number has grown from fourteen to more than thirty.
Those are just the adults with AgCC that make it to the conference. None were
exactly like me, but we all had some issue in common. One was the fact there
were a few of us over the age of 20. Another similarity was our willingness to
share our life stories with parents to infants and very young children with our
anomaly.
Many of the children are as
normal in intellectual ability as we were. However, there are children and
adults with AgCC that have physical and mental delays from moderate to severe.
The spectrum for AgCC is incredibly broad; ranging from very high intellect to
low functioning. For example, I met a politician from Australia through a
Facebook group, in his late 60's who just recently discovered the anomaly.
Imagine living your whole life, accomplishing such a great achievement as
public office and having your world change overnight. He claims the discovery
means little to him, I wonder though how true that is. I also met a young man
who looked normal in every way but when he spoke, his difficulties were
obvious. He could not carry on a coherent sentence. He tried and when observed
him, it was as if he knew what he wanted to say and tried very hard, but the
words would not form in any coherent order. You may think me a terrible person
when I say I am glad that I'm a bit witty and not a half wit, but it's a true
statement. I am grateful I can carry on a conversation, even if half my topics
are argumentatively arrogant and self centered. I have learned to appreciate
that I have any ability at all.
normal in intellectual ability as we were. However, there are children and
adults with AgCC that have physical and mental delays from moderate to severe.
The spectrum for AgCC is incredibly broad; ranging from very high intellect to
low functioning. For example, I met a politician from Australia through a
Facebook group, in his late 60's who just recently discovered the anomaly.
Imagine living your whole life, accomplishing such a great achievement as
public office and having your world change overnight. He claims the discovery
means little to him, I wonder though how true that is. I also met a young man
who looked normal in every way but when he spoke, his difficulties were
obvious. He could not carry on a coherent sentence. He tried and when observed
him, it was as if he knew what he wanted to say and tried very hard, but the
words would not form in any coherent order. You may think me a terrible person
when I say I am glad that I'm a bit witty and not a half wit, but it's a true
statement. I am grateful I can carry on a conversation, even if half my topics
are argumentatively arrogant and self centered. I have learned to appreciate
that I have any ability at all.
Regardless of my personal
feeling of relief, I have to admit that the ethnic, gender, social-economic,
and age differences that come packaged with this brain glitch have allowed me
much comfort. It shows that it's truly a human anomaly. It's not prejudicial in
picking its host. It's not just a female anomaly, a child's anomaly, a poor
man's anomaly, or a white, middle class, wife and mother’s anomaly. It makes me
wonder if I’ve misinterpreted the dream all these years, wherein I belonged to
a clan. Perhaps the dream was preparing me for when I met my own kind. For you
see, I have indeed found my people. I still feel as if I am a weak link. I feel
I am missing out on something bigger than me.
feeling of relief, I have to admit that the ethnic, gender, social-economic,
and age differences that come packaged with this brain glitch have allowed me
much comfort. It shows that it's truly a human anomaly. It's not prejudicial in
picking its host. It's not just a female anomaly, a child's anomaly, a poor
man's anomaly, or a white, middle class, wife and mother’s anomaly. It makes me
wonder if I’ve misinterpreted the dream all these years, wherein I belonged to
a clan. Perhaps the dream was preparing me for when I met my own kind. For you
see, I have indeed found my people. I still feel as if I am a weak link. I feel
I am missing out on something bigger than me.
After I discovered the organization and became
active with the group's on line chat site, it would not be for a few more years
that I would truly come to terms with who or what I was and what I stood for.
active with the group's on line chat site, it would not be for a few more years
that I would truly come to terms with who or what I was and what I stood for.
In the summer of 2009, I was
invited back to Caltech to participate in another study. It was there I met my
celestial sister of sorts. Her name is Pamela. She graciously allowed
me to use her name in my story; in truth this part of my story is as much hers
as it is mine. Pam is twenty years my senior. We both participated in a study
the same week. When the opportunity knocked, to meet her face to face, I opened
that door and embraced her. We found we had so many things in common. Some
exciting and some eerily too close to home. We discovered we lived in the same
part of the country, she in Washington State, and myself in Idaho. We
discovered we were both married twice. The first time, we were both very young
and reckless. We both have an only child. A son. I have been married a second
time to a fantastic guy; twelve years now, she to just as wonderful a man,
twenty-four years as of June 2011.
invited back to Caltech to participate in another study. It was there I met my
celestial sister of sorts. Her name is Pamela. She graciously allowed
me to use her name in my story; in truth this part of my story is as much hers
as it is mine. Pam is twenty years my senior. We both participated in a study
the same week. When the opportunity knocked, to meet her face to face, I opened
that door and embraced her. We found we had so many things in common. Some
exciting and some eerily too close to home. We discovered we lived in the same
part of the country, she in Washington State, and myself in Idaho. We
discovered we were both married twice. The first time, we were both very young
and reckless. We both have an only child. A son. I have been married a second
time to a fantastic guy; twelve years now, she to just as wonderful a man,
twenty-four years as of June 2011.
Pam is creative, very pretty, and like me, has
had multiple jobs. We share more in common with one another than we do with our
own flesh and blood siblings. We often spend an hour or more talking on the
phone or chatting on Facebook about our similarities. I'll often call her about
an issue and we have an ah-ha moment. It's more comforting then I can
explain with words alone, to know I have her in my life. When I found her, I
found myself. I will be forever grateful to Dr. Warren Brown and Dr. Lynn Paul
for introducing us.
had multiple jobs. We share more in common with one another than we do with our
own flesh and blood siblings. We often spend an hour or more talking on the
phone or chatting on Facebook about our similarities. I'll often call her about
an issue and we have an ah-ha moment. It's more comforting then I can
explain with words alone, to know I have her in my life. When I found her, I
found myself. I will be forever grateful to Dr. Warren Brown and Dr. Lynn Paul
for introducing us.
The relationship I developed with Pam, along
with knowing about the others and speaking with them at the conference or on Facebook chat groups, has helped me come to terms with the anomaly and its role
in my life. The absence of my corpus callosum may be a missing link in my
body's communication ability; however, its absence links me to other routes of
connections.
with knowing about the others and speaking with them at the conference or on Facebook chat groups, has helped me come to terms with the anomaly and its role
in my life. The absence of my corpus callosum may be a missing link in my
body's communication ability; however, its absence links me to other routes of
connections.
No comments:
Post a Comment