A FACES Friend

L.R. Harper

Look around you. Stigmas exist everywhere in our lives. The natural tendency for most people is to jump to fear and preconceived notions of things they are not familiar with, whether it be someone else’s religion, where they are from, how they look or act, what they do, a sickness or condition they have – the list goes on and on.

I have had temporal lobe epilepsy for twenty-plus years and have a small benign tumor in my left temporal lobe, which was diagnosed seven years ago. Fortunately my seizures have been well controlled with medications, although they have been ever-changing over the years. I also regularly see my excellent doctors for check-ups and testing, as it is very important to be compliant and responsible. So, how do we do that? We have to step up to the plate and take care of ourselves so that perhaps the world will take notice in a more kind and gentle way. In fact, my husband always tells me that epilepsy is a sweet part of who I am and never looks at it as something scary and fearful like it has been in less educated times.  

The earliest references to epilepsy date back to the fifth millennium in Mesopotamia where what was referred to as “the falling disease” was recorded with remarkably accurate descriptions. Ancient people thought seizures were caused by religious “otherworldly” experiences... evil spirits or demons.  This superstition was challenged by Atreya of India and Hippocrates of Greece, both of whom recognized it as a dysfunction of the brain. Hippocrates remarked that epilepsy would cease to be considered divine the day it was understood. Regrettably, I guess we are still divine to many people, but thanks to my good doctor, Orrin Devinsky, plus all the other amazing doctors and others associated with FACES, we may all become simply normal one day.

Nonetheless, in most cultures the superstitious interpretation has persisted for centuries and people with epilepsy have been stigmatized, shunned, or even imprisoned. In parts of Africa, epilepsy is still associated with possession by evil spirits, witchcraft or poisoning and is believed by many to be contagious. Unfortunately to this day in all parts of the world, people with epilepsy still continue to bravely face fear, prejudice and discrimination.

On the upside, epilepsy has also been associated with genius, greatness, amazing creativity, extraordinary leadership abilities and being revered as a shaman. There are quite a lot of us who have changed the world as we know it. A partial list of those purported to have had epilepsy includes:  Socrates, Julius Caesar, Peter the Great, Napoleon, Michelangelo, Leonardo Da Vinci, Lewis Carroll, Charles Dickens and Teddy Roosevelt. That’s some list. 

Regrettably, I do not have, even remotely, this kind of “extraordinary” epilepsy, and most with epilepsy probably do not think it enhances their natural abilities or lives, but we can still manage and live normal everyday lives. In fact, I feel I live a very full life filled with joy and laughter, the love and adoration of my husband, extremely loving family and friends, a wonderfully busy job, yoga and kickboxing, travel, and catching all the curveballs life throws at me as effectively as anyone.

Currently about 50 million people in the world have epilepsy, including 3 million people in the United States. It is surprising to me how little people still know about it. When people learn I have epilepsy they are usually completely surprised. Several have told me a story about someone they knew in school that used to have “fits” and suffered from that type of "mental illness." The misconceptions and stigmas remain, and this is where the opportunity for education begins, case by case, to enlighten and raise public awareness and understanding of my and millions of others’ condition. Take the risk to talk openly about epilepsy and little by little understanding will follow and the stigma will fade.

In the not-so-distant past, people did not talk openly about cancer, mental illness, addictions, HIV/AIDS, diabetes, autism, prostate issues and erectile dysfunction, simply out of fear and lack of knowledge, but today they are part of the common vernacular;  in the media, at home, dinner conversations, everywhere. And, the drugs used to treat these conditions are advertised everywhere. Epilepsy should be invited to the party and have a place at the table, too.

People are all different and we should embrace rather than fear our differences, as this is what makes each of us special and unique.

I recognize that some suffer far more than others and have been dealt a much more difficult hand than I have, and whatever the degree, we should never shoulder the burden alone. There is support, people who care and understand, friends, family, strangers and our FACES family because really, we are all of like kind.

Let the hearts understand

That love and reverence go hand in hand

Towards true understanding

Truth, beauty, life, love and need

Life and love as thought and deed

Trusting the heart and the mind

 and seeing in beautiful eyes

that we are all of like kind.

- Jack Frederick Raesener 1989