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 laws–unenforced– 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 don’t 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 he’s 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 nation’s 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, don’t 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 1990’s, 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 "don’t ask don’t 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 don’t "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.

EPILITERATURE : TYPES OF SEIZURES : WEB SIGHTS : STROBE EFFECT EPILEPSY

 

 

 

Contents : Marrow : Freezone : Detritus : Catacombs