Epilepsy - A Brief Historical Perspective

Hippocrates, known as the father of medicine, in his book The Sacred Disease of 400 B.C., refuted the belief that this hidden and fearful disease of epilepsy had any sacredness at all!

The belief in the sacred or divine nature of epilepsy lasted for many centuries along with other beliefs about epilepsy. Another book, Malleus Maleficarum, a handbook on witch-hunting written by two Dominican friars in 1494, identified the presence of seizures as a characteristic of witches, signing death warrants for many people with such an affliction.

Because of epilepsy’s elegant and varied array of signs and symptoms of voice, movement and behaviour, it would seem that we have been confusing, and frightening people for centuries. So much so that a short list of many names and qualities besides witch and ‘divine‘ is:

degenerate, idiots and lunatics

possessed of demons

an affinity for music and dance

morally insane and that

epilepsy was contagious

There have been epilepsy colonies to remove epileptics from society, the last closing as recently as the 1950’s and 1960‘s. We have been dumped, shunned and in general pushed aside as inferior to others. Beliefs are the framework by which individuals and cultures define those things that cannot be understood easily and so culture, belief systems and superficial medical knowledge all contributed to these odd, and in some cases, fatal beliefs.

While we must be careful not to medicalize the human condition, it was a good thing that Hippocrates began this discussion so many centuries ago. As medicine has evolved, learning about the various ways that our brains function, neurology and neurobiology have come to the fore, providing us with diagnosis, medication, and treatment. These medical advances through history, while slow and not without difficulty, have allowed us to take a rightful place within society.

“Men think epilepsy divine, merely because they do not

understand it. But if they called everything divine which they

do not understand, why, there would be no end to divine things.”

~ Hippocrates

Because You are Strong......

This phrase puzzled me.

When does strength start?

Where does strength come from?

When my own strength has been wrenched from me, weakened by those ‘slings and arrows’ that Will Shakespeare speaks of, I have questioned whether I had any strength at all,

whether I would ever have any strength again.

Epilepsy has been one of those ‘slings’; and seizures, the ‘arrows’.

When my strength, weakened and frayed, crumples and falls,

when an arrow cuts through and pins me to the ground, someone has been there to help me step into my life once more.

Friends, loved ones, family and colleagues,

whomever was present when my consciousness left me,

when my consciousness returned ~

your life interrupted by my life.

I thank each of you always.

The strength you so freely shared with me,

has gathered within me,

to be shared with others each day.

In the sharing of strength, we each grow stronger.

When does strength start?

Within the sound of a newborn’s cry and the first gentle touch of caring.

Where does the spark of strength in each of us come from?

Only spirit knows the answer.

“Was it you or I who stumbled first? It does not matter. The one of us

who finds the strength to get up first, must help the other.”

~ Vera Nazarian, The Perpetual Calendar of Inspiration

Author's note: Edited December 03, 2023

Once I Knew Nothing

From somewhere deep within me, a rogue current had pushed me off a ledge I did not know was there.

I fell, twisting and turning, into a dark chasm.

When I awoke the sun shone in my face and I knew not what had happened.

The Doctor said ‘you have epilepsy’

What more was said, I did not know.

The ledge remained

a chasm not always avoided

learning to walk around it

a learning curve not in any curriculum.

Pills - an easy piece of the puzzle

Lessons for living with epilepsy gathered slowly and steadily

while moving forward against layers of historical baggage

trying to force secrecy upon me and those like me.

The chasm of active epilepsy has not opened for a long time.

Talking about the chasm has taken the mystery and fear away,

so that now I know many things.

“Secrecy involves a tension which, at the 

moment of revelation, finds it’s release.”

~ George Simmel

Why Me?

Why am I different? 

Researchers, 

in papers and texts,

with grants and funding,

define epilepsy clinically, 

describing all the ins and outs of

genetics

familial inheritance

neurological structure

misfiring in the synapses

brain injuries from

chicken pox and fever I had as a baby

severe headache when I was five

car accident I had when I was fifteen

But that doesn’t answer my question ~

Why am I different?

It is only an explanation for  

the roll of the dice,

or luck of the draw

in minute and excruciating details of

opinion and speculative possibilities.

The only answer I have arrived at

with any acceptance is ~ 

Because.........

“Big questions bruised my mind but still I let

Small answers be a bullwark to my fear.”

~Edith Stillwell, from the poem Answers

Triumph, Tragedy and Unknowns

Bringing a child into this world, many resist, afraid of....what?

Joy of participating in blossoming hope?

Fear of not knowing how to raise a child without injury by

feast or famine, flood or war, disease or just a skinned knee?

Fear of not enough ~ money, time, knowledge.................

To continue the human race 

children must be 

born and raised,

educated and developed

with whatever they have been given,

and whatever parents have to give.

More close to home, it can be really quite selfish.

Gurgling belly laughs,

pleasure in the words ‘I love you’,

excitement of each success

anticipation as unknown and fearsome territories are explored,

with learning and struggle to gain hard won ground.

A child’s epilepsy is one such challenge

for parents, and for the child,

making successes richer and full of pride,

and yes, there may be many tragedies.
Tragedies and successes experienced which may or may not
have anything to do with epilepsy.

Bringing a new life into this world full of so much

good, bad, indifferent and so very many unknown’s

is an act of bravery and of faith.

Faith that whatever challenges arise,

they can be met squarely to become 

a strong piece of the family’s fabric.

“We are born weak, we need strength; helpless, we need aid; 

foolish, we need reason. All that we lack at birth, all that we 

need when we come to man’s estate, is the gift of education.”

~ Jean-Jacques Rousseau

Tending the Soil

Tending the soil in any garden, and providing protection from stormy weather, will help plants so they can blossom and grow strong.

Epilepsy, untended, grows stronger and more destructive to all in the family.

Learning that I was powerless over the fact that epilepsy resided in my brain and that I was NOT powerless over how I managed that condition, was a turning point for me as a parent, and an individual.

As a parent with epilepsy,

once I knew of my responsibility for the self care,

I learned what I could about 
managing my epilepsy,
minimizing my risk of seizures and,

that self care always came first ~ 

for birthday cakes and balloons

being a den mom with a Beaver troop

or going to gymnastic events or water polo

and so very much more during the ‘raising kids’ years.

Epilepsy had to sit quietly within - there was work to be done, fun to be shared

Epilepsy is merely a part of me

like any other part of me,

and deserved my attention then and now,

just as my children have deserved my attention.

Information abounds about epilepsy and

epilepsy has long been seen as something that children have.

But those children grow up to become parents, and

there are those of us whose epilepsy didn’t show itself until we were parents.

Ask questions of any health care professional that you can about whether you need to do anything 

differently, 

more carefully, 

with more planning

and how to enlist family members in this crucially important endeavor.

An online resource I have recently located is, 

http://www.epilepsy.com/

for common sense information about epilepsy and parenting.

“Trust yourself.  You know more than you think you do.”

~ Benjamin Spock

The Information Age, Pregnancy and Epilepsy

This nasty cold virus has given me a lot of time on my hands today and yesterday. My energy level determined my ability for mind browsing (I think that’s called day dreaming) and browsing the world wide web. 

History of women was a direction that I took with my blog post last night. I wanted to know more about the history of epilepsy specific to women, so began to browse epilepsy sites. Pregnancy intrigued me. My sons, that I love so dearly, are both miracles for having survived my epilepsy and I would not trade either of them for the world. They each had a different experience with me, in relation to my epilepsy. One was conceived and carried to term after I had been on medication for about two years.  

The sites that google popped open were full of details about epilepsy, pregnancy, life, medications, and other treatments. It was so much that I felt a certain amount of information overload. I can also say that I felt frightened with some of the details that pertained to my situation so long ago, and that are issues to be dealt with today for other young families.

I’m getting old enough now to say that I have some history behind me and what the roving cursor reminded me of was how little I knew, and was told, about pregnancy and epilepsy in 1970. Not just pregnancy itself, but the possible effects of a seizure on the child. And from there it was a short trip to what would be the potential effects of anticonvulsant drugs (AED) on the child. To my recollection, these things were not discussed with me. I don’t know if anyone even thought about them, which I find rather odd as I was in the middle of nurses training with nurses and doctors all around.

There was definitely no world wide web with it’s present wealth of information in 1970. Now, when I think of all the homes in our communities, I think of the young families where epilepsy may be that not so silent companion. So I would encourage anyone with epilepsy planning a family, or the family of someone with epilepsy, to research pregnancy and epilepsy. I also am aware that not everyone has, or has access to, a computer. However, libraries, schools and universities usually welcome those requiring such services.

Since the initial post of epilepsy information in BC, it has changed - epilepsy has not changed. Contact the BC Epilepsy Society on Google for a provincial phone number and a local phone number for Victoria.

“In pregnancy, there are two bodies, one inside the other. Two people live under one skin......when so much of life is dedicated to maintain our 
integrity as distinct beings, this bodily tandem is an uncanny fact.

~ Joan Raphael-Leff

Author's note:

~ Post edited on December 03, 2023

~ This following information and links are no longer valid:  In Victoria, a local source of information and support is at the 

Victoria Epilepsy and Parkinson’s Centre now Headway as of 2013

202-1640 Oak Bay Ave. (previously on Darwin Ave)

Victoria BC V8R 1B2

Phone:  250-475-6677

Email:  help@vepc.ca

Web: www.headwayvictoria.com (previously www.vepc.bc.ca)