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Thursday, November 13, 2008

Epilepsy Awareness Month

Betcha didn't know it, but November is Epilepsy Awareness Month. That's why I'm wearing the purple ribbon. See it up there?
I was diagnosed with epilepsy in my early 20's and since then, life has been a roller coaster ride of finding a medication that controls my seizures without turning me into, well, one of these

I've had some pretty costly medical expenses, ambulance bills, hospital stays,
EEGs, CT scans, MRIs, you name it, they've done it to me. I even once had probes inserted into my jaws, just below my brain, so they could monitor my brainwaves in the temporal lobes, where my seizures seem to reside. All to find out that I am not a candidate for the surgery that many find relieves them from most of their seizures. So here I am, balancing medications, with cognitive functions. Balancing what I can do, with what I'm restricted from doing. Much like so many others out there with epilepsy. I'm not complaining. I'm just happy that today epilepsy is seen as the disease it is, rather than psychosis, mental retardation, or even demonic possession as it was in years past.

Did you know that the earliest references to epilepsy date back to the fifth millennium B.C. in Mesopotamia? That's a few years before Sarah
Palin believes that the earth was even created. Sorry, I couldn't resist. Priests unsuccessfully tried to cure people with epilepsy by exercising the "demons" out of them. Atreya of India and later Hippocrates, both of whom recognized a seizure as a dysfunction of the brain, challenged this absurdity of superstitious thought surrounding epilepsy. But the superstitions surrounding epilepsy continued for hundreds of years.

I actually feel a bit honored to be amongst a rather commendable group of other epileptics. You see, epileptic seizures historically, have suggested a relationship with creativity or unusual leadership abilities. Scholars have long studied evidence that prominent prophets and other holy men, political leaders, philosophers, artists and scientists, suffered from epilepsy.
According to, Aristotle was apparently the first to connect epilepsy and genius.

His catalog of "great epileptics" (which included Socrates) was added to during the Renaissance. Only people from Western culture were included, however. So strong was this tradition that even in the nineteenth century, when new names of "great epileptics" were added, they were rarely chosen from among people in other parts of the world. Working from this biased historical legacy, the famous people with epilepsy that we know about are primarily white males.

LaPlante in her book Seized writes that the abnormal brain activity found in temporal lobe (complex partial) epilepsy plays a role in creative thinking and the making of art. Neuropsychologist Dr. Paul Spiers says:

"Sometimes the same things that cause epilepsy result in giftedness. If you damage an area [of the brain] early enough in life, the corresponding area on the other side has a chance to overdevelop."

We know that epilepsy involves temporary bursts of excessive electrical activity in different locations in the brain, locations which house our bodily sensations and functions as well as our memories and emotions. Psychiatrist Dr. David Bear states that the abnormal brain activity found in temporal lobe epilepsy can play a role in creative thinking and the making of art by uniting sensitivity, insight and sustained, critical attention. According to Dr. Bear:

"A temporal lobe focus in the superior individual may spark an extraordinary search for that entity we alternately call truth or beauty."

What is also clear in the discussion of genius and epilepsy is that some of the most famous people in history had seizures. People with epilepsy have excelled in every area.
The list of famous authors and playwrights whom historians believe had epilepsy is a bit overwhelming. It includes: Dante, the author of The Divine Comedy, who is not only Italy's pre-eminent poet but one of the towering figures of Western literature; Moliere, the master comic dramatist of the eighteenth century whose plays Tartuffe, The Imaginary Invalid and The Misanthrope are still being regularly performed today; Sir Walter Scott, one of the foremost literary figures of the romantic period whose books like Ivanhoe and Waverley remain widely read classics; the 18th century English satirist Jonathan Swift, author of Gulliver's Travels; the nineteenth century American author Edgar Allan Poe; as well as three of the greatest English Romantic poets, Lord Byron, Percy Bysshe Shelley, and Alfred Lord Tennyson.

Charles Dickens, the Victorian author of such classic books as A Christmas Carol and Oliver Twist had epilepsy, as did several of the characters in his books. The medical accuracy of Dickens's descriptions of epilepsy has amazed the doctors who read him today.

Lewis Carroll, in his famous stories Alice's Adventures in Wonderland and Through the Looking-Glass, was probably writing about his own temporal lobe seizures. The very sensation initiating Alice' adventures- that of falling down a hole- is a familiar one to many people with seizures. Alice often feels that her own body (or the objects around her) is shrinking or growing before her eyes, another seizure symptom. Carroll recorded his seizures, which were followed by prolonged headaches and feeling not his usual self, in his journal.

From his writings we know a lot about the epilepsy of the great Russian novelist Fyodor Dostoevsky, author of such classics as Crime and Punishment and The Brothers Karamazov, who is considered by many to have brought the Western novel to the peak of its possibilities.

Dostoevsky had his first seizure at age nine. After a remission which lasted up to age 25, he had seizures every few days or months, fluctuating between good and bad periods. His ecstatic auras occurring seconds before his bigger seizures were moments of transcendent happiness, which then changed to an anguished feeling of dread. He saw a blinding flash of light, then would cry out and lose consciousness for a second or two. Sometimes the epileptic discharge generalized across his brain, producing a secondary tonic-clonic (grand mal) seizure. Afterward he could not recall events and conversations that had occurred during the seizure, and he often felt depressed, guilty and irritable for days. Epilepsy is a central source of themes, personalities, and events in his books; he gave epilepsy to about 30 of his characters.

The other great nineteenth century Russian author, Count Leo Tolstoy, author of Anna Karenina and War and Peace, also had epilepsy.

Alexander the Great, King of Macedonia about 2,300 years ago and one of the greatest generals in history, had epilepsy. At the time epilepsy was known as "the sacred disease" because of the belief that those who had seizures were possessed by evil spirits or touched by the gods and should be treated by invoking mystical powers.

Julius Caesar, another brilliant general and formidable politician, had seizures in the last two years of his life, possibly caused by a brain tumour. Caesar was known to have fallen convulsing into the River Tiber. By this time, epilepsy had become known as "the falling sickness" because the kind of seizures that made a person lose consciousness and fall down were the only kind then recognized as epilepsy. (Complex partial seizures were not recognized until the middle of the nineteenth century.) Human blood was widely regarded by the Romans as having curative powers, and people with epilepsy in Caesar's time were commonly seen sucking blood from fallen gladiators.
Napoleon Bonaparte was probably the most brilliant military figure in history. He too is known to have had epilepsy.

Another extraordinary leader of a very different time and place was Harriet Tubman, the black woman with epilepsy who led hundreds of her fellow slaves from the American South to freedom in Canada on the Underground Railroad. Tubman developed her seizure disorder through sustaining a head injury: her slave master hit her in the head with a rock.

Saint Paul's seizure-like experiences are the best documented of the major religious figures. On the road to Damascus he saw a bright light flashing around him, fell to the ground and was left temporarily blinded by his vision and unable to eat or drink. Paul is thought by some physicians to have had facial motor and sensitive disturbances coming after ecstatic seizures; they have diagnosed him with temporal lobe epilepsy which occasionally developed into secondary tonic-
clonic attacks.

Joan of Arc was an uneducated farmer's daughter in a remote village of medieval France who altered the course of history through her amazing military victories. From age thirteen Joan reported ecstatic moments in which she saw flashes of light coming from the side, heard voices of saints and saw visions of angels.

In the opinion of the neurologist Dr. Lydia Bayne, Joan's blissful experiences "in which she felt that the secrets of the universe were about to be revealed to her"- were seizures, and they were triggered by the ringing of church bells. Joan displayed symptoms of a temporal lobe focus epilepsy: specifically, a musicogenic form of reflex epilepsy with an ecstatic aura. Musicogenic epilepsy is generally triggered by particular music which has an emotional significance to the individual. Joan's voices and visions propelled her to become an heroic soldier in the effort to save France from English domination and led to her martyrdom in 1431, burned at the stake as a heretic when she was 19 years old.

Soren Kierkegaard, the brilliant Danish philosopher and religious thinker considered to be the father of existentialism, worked hard at keeping his epilepsy secret.

In the fine arts, Vincent van Gogh is today probably the most widely known and appreciated artist with epilepsy. "The storm within" was how van Gogh described his typical seizure, which consisted of hallucinations, unprovoked feelings of anger, confusion and fear, and floods of early memories that disturbed him because they were outside his control.

Van Gogh also had convulsive seizures; a hospital worker witnessed Vincent having one while painting outside. He was prescribed potassium bromide as an anticonvulsant and ordered to spend countless hours bathing in tubs at the asylum in Saint-Remy. His most troubling seizures peaked with his greatest art in the south of France, where he painted A Starry Night, the extraordinary Self-Portrait, and the famous Crows in the Wheatfields.

There have been a number of prominent composers and musicians with epilepsy. George Frederick Handel, the famous baroque composer of the Messiah, is one. Niccolo Paganini is another. Paganini was an Italian violinist and composer considered by many to be the greatest violinist of all time. The eminent Russian composer of the ballets Sleeping Beauty and The Nutcracker, Peter Tchaikovsky, is believed to have had epilepsy. Ludwig van Beethoven, one of the greatest masters of music, may have had epilepsy as well.

Modern writers who had epilepsy include: Dame Agatha Christie, the leading British writer of mystery novels, and Truman Capote, American author of In Cold Blood and Breakfast at Tiffany's.

Modern actors with epilepsy include Richard Burton, Michael Wilding, Margaux Hemingway and Danny Glover.

On second thought, boy oh boy, that sure puts the pressure on me to be brilliant. Oh well, I can be one of the not so fabulous epileptics that achieved mediocrity in full force.

5 cookies cracked:

Anndi said...

Did you know I had classes at the Montreal neurological Institute and Wilder Penfield was one of my heroes?


You are brilliant dear, a brilliant friend and if the art I've seen and poems I've read are any indication you hold your own in that illustrious group.

*non-germy hugs**

Fortune Cookies said...

anndi - you are too kind!
the Montreal Neurological Institute, eh? Color me impressed!

Hope mr.germy is leaving you alone...

sunflowereyes said...

I don't even know you, just found this site when I was googling Epilepsy Awareness Month. Thanks for so perfectly summing it all up! I was diagnosed at seven, and I understand how it feels to try to balance the ability to function with the zombi-like non-emotion that comes with our oh-so-fun medications.

Seize the day!

-Heather Talbot

K said...

Thanks for the information on epilepsy. It's great that you celebrate epilepsy awareness month by spreading awareness through your blog!

We recently wrote an article on a new drup for epilepsy at Brain Blogger. Back in October the FDA approved a new treatment for epilepsy. But how does it work and what are the risks?

We would like to read your comments on our article. Thank you.


DeeDee said...

Thank you so much!!! I Loved reading this. I have had epilepsy since 11/05 and have had a hard time with visons/hallucinations with the episodes and then feeling so strange durring the post ictal phase. It is so great to find some positive words and to know that I am not alone even through history. I wish that I could feel like Joan of Arc though, and not have so much Fear and feelings of Dread...I will keep this in my thoughts for the next time it comes around, maybe it will help.