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Permanent
Outsiders
The
number of epileptics in the world appears to remain steadfast
but many hope new surgical techniques will one day be able to
permanently eradicate the condition. A growing menu of treatment
options is also available, ranging from surgery to ketogenic diets,
amino acids, and herbs. A recent offshoot of the burgeoning hemp
movement has been the belief that marijuana can be used as a natural
anticonvulsant to stave off the dreaded shakes. The majority of
us take a cocktail of various meds and weather the many side effects.
The myriad of pills we ingest give us back something resembling
control of our lives. Although we may appear drowsy and suffer
other side effects because of them, they allow more than 50% of
us to exist seizure-free.
The
average epileptic looks no different than the control population
externally, but internally, I have noticed a distinctive bend
toward non-conformity among the cerebrally charged population.
Residual prejudice still remains and many states still have lawsunenforced
ordering the immediate sterilization of epileptics. Personal experiences
with teachers, cops, and supervisors over either my condition
or the size of my pupils have left me with less than a respectful
attitude toward those in authority. This sense of permanent outsider
status has existed since I was diagnosed in my early teens. In
my introspective moments, I question whether my mindset is an
offshoot of my epilepsy or the obnoxious people my condition has
forced me to encounter. I can never quite figure out the answer.
However, I dont
seem to be alone. My feelings can easily be seen expressed in
any epilepsy chat room on the Internet. Like long lost relatives,
we warmly greet one another and either converse happily or vent
our rage at cops, teachers, authority figures and doctors. A newfound
cybermate from Dallas tells me he has to change his medication
because hes being drug tested at work. A bright, articulate
man, he is forced to risk having a seizure rather than get caught
in the dragnet of the "war on drugs" and be forced to
admit his condition to his employer. When I tell a pal from Tampa
about my record store incident, he says it happens to every epileptic
and angrily recalls being handcuffed by local sheriffs after a
seizure, and almost suffocating on a sock they malevolently jammed
down his throat.
In many ways, we are
the fist-pumping antithesis to the American archetype. While drug
war hawks peddle their "war on drugs," and propose zero
tolerance of *any* drugs, we walk the streets pumped so full of
mind altering substances, our pupils look like silver dollars.
The car, possibly our nations most popular item of conspicuous
consumption and cultural identity, goes ignored by more than half
of the epilepsy nation because their seizures are uncontrollable
and leave them unable to legally drive. In fact, there is a growing
minority who cannot even watch television because the "strobe
effect" causes seizures (see sidebar).
However, dont
make the mistake of thinking that we consider ourselves "victims."
Most who suffer the disease (myself included) keep it to ourselves.
When I badly needed a job in the recession of the early 1990s,
I attended a series of employment seminars at the L.A County Epilepsy
Society. I expected to be fed a bunch of idiotic "proud to
be a trembler" slogans, but the savvy counselors urged a
"dont ask dont tell" strategy for job interviews.
We were directed to refrain from bringing up our condition until
we had achieved success at our respective jobs.
As a group, epileptics
dont "come out;" we hunker down. Although the
apologists among us like to normalize their condition by citing
famous earth-shakers like Roman Emperor Julius Caesar and world-beater
Alexander the Great, life for the average pill-popping epileptic
is far from kingdom-conquering.
But in my mind there
is hope. An article in Answer Me! magazine made the compelling
argument that the development of mind blowing new technology could
result in amputees gaining powers far beyond the average person.
I like to dream that one day my high octane brain cells will be
harnessed and allow me to utilize my brain power at a higher capacity
than has ever been known to modern man. Until that day comes,
all I can do is take my medication and wait for the revolution.
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