TRANSCRIPT
copyright 2009
Qualia Diaries
by Emily Mode
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It wasn't the first time I felt so dizzy...
that I reached for something to keep from
falling.
Lara, do you remember?
I began experiencing the sensations again...
a few months ago.
But this time it was different.
-
I remember flying out the door of my 6th floor apartment,
swinging 'round the banister,
thinking of the childhood friend I was to meet,
making the 20 minute sprint to the subway,
sweating in a crowd on the F train,
dodging holiday shoppers to get back above ground,
feeling a gust of bitter wind against my skin,
the strange rush as I ran into the restaurant,
-
and hearing Helga's "Hello."
-
According to an eye witness, the patient
said: "Wait a minute sometimes I get this
feeling..."
...then her eyes had a far away look,
and rolled to the right. She fell forward, her
arms became rigid, she started twitching,
and her lips turned blue.
-
Neurologist:
Patient had her first seizure episode at 1pm.
The incident occurred prior to eating lunch at
a restaurant. Friends accompanied her to
the hospital via ambulance. Two more
seizure episodes occurred in the emergency
room.
All were Grand Mal seizures.
Diagnosis: Seizure Disorder.
-
EEG monitoring and testing
Patient admitted to hospital for one week...
to determine the cause of seizure onset.
-
Unsuccessful attempts were made by
the doctors to trigger a seizure and
localize the abnormal activity in my brain.
Then I was released on a daily regimen of
anticonvulsants.
Quickly it became apparent that
drugs for mental health can have
torturous mind altering side effects.
-
* Prescription 1: D_ _ _ _ _ _ _ (anticonvulsant)
Side Effects: Serious hallucinations. Psychosis.
Sensory disturbance. Constant shifts in body
temperature.
Conclusion: Unmanageable.
-
Lewis Carroll had seizures.
Alice In Wonderland Syndrome (AIWS)
is a form of epilepsy.
If you see yourself,
people,
animals,
and objects
looking larger or smaller
than they actually are...
you have AIWS.
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I must have been 7 or 8 years old when I saw
the 1951 Disney version of Alice in Wonderland.
I watched the movie at my best friend
Lara's house. Her father had built a
movie theater in the basement. The
dirt floor was cemented over and
covered with scrap carpet. The walls
were raw, untouched foundation
stones filled with mud and cement.
Five rows of attached
wooden seats were
salvaged from an
old movie theater.
Yard sale paintings, lamps, and cheap
antiques hung off the cold earthy stone
walls.
-
As the film progressed, I grew restless and
unhappy... I wanted out of the basement.
I wanted out of Alice's absurd world.
-
For years after that, no one could coax me into
their cryptic worlds...
..until the day I collapsed.
-
Then a doctor in a hospital ward gave me
something to take.
One pill made my teeth dance like the Cheshire
cat's... floating in space.
And one pill made me panic,
like Dorothy's Lion with the shakes.
-
* Prescription 2: T_ _ _ _ _ _ _ (anticonvulsant)
Side Effects: Anxiety attacks. Irrational
aggressive behavior. Constant headaches.
Short term memory loss. Hair loss.
Extreme weight gain. Constant fatigue.
Metallic taste and smell.
Conclusion: Unmanageable.
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One pill set off a primal will to survive... ...as if death lingered by my side.
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* Prescription 3: T_ _ _ _ _ _ (anticonvulsant)
Side Effects: Psychosis. Panic attacks. Insomnia.
Loss of mental integrity. Agoraphobia.
Conclusion: Unmanageable.
-
One pill, and I hid in my apartment for weeks...
obsessed with safety and convinced strangers
were a threat.
In my apartment I had some control.
If I felt dizzy or worried I'd fall, I could crawl
on the floor.
-
I was sent to a Psychopharmacologist.
The anticonvulsants had triggered an Anxiety
Disorder. I was put on more drugs.
-
* Prescription 4: B_ _ _ _ _ _ _ _ (anxiolytic)
Side Effects: Dreamy state. Drowsiness.
Loss of balance.
Conclusion: Manageable, but insufficient.
-
A few new pills and life felt like a dream.
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* Prescription 5: L_ _ _ _ _ _ _ (anticonvulsant)
Side Effects: Sense of unreality.
Rare but deadly rash.
Conclusion: Deadly. Unmanageable.
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After 5 months of mental disintegration
the anti-anxiety medications began to help,
and I wanted to find my old self again...
...but I wasn't sure that self still existed.
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Have you ever gazed
into the looking glass until
you were gone...
...and it was someone
else looking back
at you?
It happened to me...
and I wanted to leave my shadowy
double locked in the mirror...
and search for a more promising reflection.
-
So I started a journal.
The black notebook I bought was dimpled and hard,
the pages cool beneath my fingers,
the lines ready to instill order.
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Do you remember your first encounter with death?
When you were a child did your imagination run
wild in the dark?
Did you cling to something or someone for security?
-
As a child I was scared of losing myself in books,
believed I'd become one of the characters...
thought I'd never return from the pages.
-
As an adult I look to books to find myself...
Now I'm reading...
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[Spoken text:
“I keep looking, looking. Trying to understand. Trying to give what I’ve gone through to someone else, and I don’t know who, but I don’t want to be alone with that experience. I don’t know what to do with it, I’m terrified of that profound disorganization... ...(it’s) as though I had lost a third leg that until then kept me from walking but made me a stable tripod. It’s that third leg that’s now missing. And I’ve gone back to being someone I never was. I’ve gone back to having something I never had before: just two legs. I know I can walk only when I have two legs. But I sense the irrelevant loss of the third one, and it horrifies me, it was that leg that made me able to find myself, and without even having to look.”]
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Dear Diary,
It seems at some point we all have to find peace
in the dark unknown...
in letting go...
in being alone...
-
It's the alone part I'm not ready for...
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I've watched twins interact... ...they communicate without words.
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I always wanted a twin...
another half...
a stronger half...
a half with no fears...
-
and now a half with no seizures...
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Dear Diary,
When I was 4 I met my best friend Lara, and
we often made believe that we were twins.
When we were 10, Lara and I kept secret
journals. We wrote about strange sensations
we shared from across a room.
As kids we decided they were a confirmation
that our souls were bound.
-
Now doctors tell me those sensations were
"Auras," the sensations that precede seizures...
caused by neurons shooting off in the brain
randomly... mysteriously.
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[Spoken text starts:
“The medications were there to keep me from blacking out again and they caused some of the most difficult side effects… and memories… that my body has the most trouble letting go of. And at the core of those side effects is fear, and I guess at the core of fear is… a fear of losing control, a fear of the unknown, and a fear of never waking up again.”]
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* Prescription 6: K_ _ _ _ _ (anticonvulsant)
Side Effects: Constant head and stomach aches.
Unresponsiveness. Fatigue.
Conclusion: Manageable.
-
* Prescription 7: L_ _ _ _ _ _ (escitalopram)
Psychopharmacologist: Patient's Anxiety
Disorder requires supplementing B_ _ _ _ _ _ _
with L_ _ _ _ _ _.
-
After 7 months a regime was found, and all 3
prescriptions were manageable.
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Dear Diary,
The last time I saw Lara, we were 15,
she was high.
On that night she fell unconscious to the ground.
Her eyes rolled back and her lips turned blue...
She wouldn't wake up. I thought she was dying.
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[Spoken text ends here]
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Now more than a decade later, I went on the web
and found the phone number for a woman fitting
Lara's description.
Through the phone I immediately felt our eerie
connection.
-
Lara told me that she has bipolar disorder.
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Dear Diary,
I no longer want a twin... ...or to feel such affinity.
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I'm ready to wake from my dreaming bed...
to face a new day... Alone.
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I wonder how many of us are bound for Wonderland?
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To fall in with white rabbits...
have tea
with mad hatters...
and make it back no thanks to the queen.
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Each year 300,000 people in the United States
have their first convulsion. 10 percent of the
population will have a seizure at least once
in their life time and 3 percent will develop
epilepsy.
-
In 70 percent of new cases, no cause can be
found.
-
Information on reactions to prescription
treatment is difficult to find. Most information
is anecdotal and shared only between
patients and their doctors.
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There are over 50 million people in the world today
living with epilepsy.
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(Thank You: …..) |
