Seizure Diaries: Falling Sickness
An electrical impulse seized his brain, waking him up from a dead sleep. His vision became blurred and his left side went limp as he slipped off the bed. His head slammed to the floor, and again and again in rhythm with stronger and stronger spasms. As if possessed, he lost complete control of the left side of his body. An eerie force took control, his body was both energized and limp. The man’s 22 year-old frame had never experienced anything like it before, as he throbbed in pain from his head to his arched fingers and toes. He could vaguely feel saliva drip across his face. Sliding into semi-consciousness, his mind went numb. His dreams wandered to his mother…she had died a few months earlier. Gone too soon, gone too soon.
The boy’s father heard the thrashing about and rushed into the bedroom. He immediately recognized the symptoms – an epileptic seizure. A prep school roommate had had seizures, so the father knew the rudimentary procedures of first aid: put patient on his side, keep his breathing airway open, and comfort him as he rides out the electrical storm inside.
Two days later in the hospital ward the three neurologists and two neurosurgeons looked at the MRI: the brain deformity, the tennis ball-sized cyst and the jumble of blood vessels. These were the best and brightest at Johns Hopkins Hospital and they were scratching their heads. Do we operate? The surgeon always wants to operate. Put in a shunt? Consider a vagus nerve stimulator? Put him on heavy medications? The neurologist always prefers pushing pills. This time, however, they were perplexed. They had seen nothing quite like this brain scan before.
Nearly 30 years later that man is still seeking a cure. He has good periods (20 days seizure-free) and bad ones (15 seizures a day). That man is my brother, Charlie Hooper.
Despite the fact that nearly 65 million people worldwide suffer from different forms of epilepsy, it remains a highly mysterious and unknown disease. Its history is cloaked in demonic possession and lunacy. Even the Bible, in both the New and Old Testament, have stories of seizures. The Hebrew translations of the episodes point to God’s punishment of those who side with the devil: as if they brought the affliction upon themselves, the demons must be expelled to stop the seizures.
Iago holding Shakespeare’s Othello during a seizure
About 500 years later William Shakespeare piles on by afflicting two of his tragic protagonists, Julius Caesar (falling sickness) and Othello (fits), with epilepsy. These characters had flaws that were obvious and they were exploited by those closest to them: greed, pride, jealousy, power. Their epilepsy pointed to a deeper, devilish side of their characters, which was congruent with the malignant social morays of the time.
Today, we have the same levels of fear and loathing about epilepsy. It seems as if people are frightened when they spot someone having a seizure. They cover their mouths, run away in shock, and act as if the air around the victim were contaminated, infectious, and contagious.
What is going on? Why are we no better informed about epilepsy than theater audiences of Shakespeare’s era?
Over the next few Seizure Diaries, this site will explore the myths and struggles of “falling sickness.” It is time to put a light on the subject of epilepsy. The diary posts will let Charlie Hooper tell his own Seizure Stories, his wife Steph will give her perspective as a care giver, and one post will describe the myriad list of drugs pushed at Charlie Hooper in the form of pills; all in the name of better living conditions.
Despite the prevalence of epilepsy in our population (65 million worldwide or 1%), it remains one of the least understood and most feared human diseases. It is time to change the perspective and urge medical researchers to get on a path toward a cure. The last frontier is the human brain. It’s time to get cracking.