By Bob Dorn
Some six weeks ago I had my first grand mal seizure. In its aftermath I’ve read only enough about the brain’s temporal lobe, and its neurons and mitochondria to be able to say epilepsy remains a bit of a mystery.
Mystery’s not a word doctors like to combine with illness. After all, there are causes and effects. Modest physicians will go so far as to say we don’t know enough to name the cause and the mechanism that delivers the startling effects of these convulsive explosions.
I went to black immediately after some fascinating warning signs (about which, later). I knew nothing once I was down on the living room floor, gurgling and grimacing, my whole body stiffening. “A man will do that” I joked from the hospital bed, inspiring a laugh from my beloved wife, who’d witnessed the horror from its start.
“It was,” she told me, “like the sound of gargling, and you seemed to be resisting something.” To demonstrate, she turned her head to one side and grimaced. She didn’t try to mimic the gurgling. (I was actually chewing my tongue.)
The 911 operater told her to lay me on my side. She can’t remember how I got to the floor. The paramedics complained about the two flights of steps they’d have to negotiate while carrying my 210 pounds. I can understand that. My precious wife says I tried to brush their hands away. They gave me something to calm the tension in me.
I remember nothing of this.
I was taken to the ER at Scripps Mercy, then wheeled away for a scan of my head and neck. No clots, no bleeds equaled no stroke. I also don’t remember any of those tests.
My first memory was of a nurse, female, holding up two fingers (or was it three?) and asking how many I saw. She moved her hand and again asked me how many. She wanted to know my name and birthdate; I think I had some hesitation on the date, and felt embarrassed and fearful about the potential big ugly: dementia.
I remember her calling out, “He’s coming around!”
A young guy in scrubs and a shower cap was issuing orders, Dr. Jonathon Lee. He was giving almost as much attention to my wife as to me, explaining to her, I think, what was happening. There’d been an EEG, an Echo, CAT scans, and I imagine he must have explained the results to her. She would have questioned him, for sure.
It seemed to me I was gone an indefinitely long time. “Impossible,” they said when she and I told them it was at least an hour. Normally epileptics regain consciousness after three or four minutes.
Had I been talking, perceiving, cracking jokes that my memory never recorded? Maybe we can be sentient, conscious and engaged, registering everything around us and in an instant be unable to install it in our memory banks. Time forever lost. Something about this reminds me of the old metaphysical question, “Does a tree falling in the forest make a noise if no one’s there to hear it?”
I still think I was not really alive for about an hour. Deborah says that during her worst moments, “I thought you were dying, or dead.”
I finally got to a neurologist after overnighting at Scripps. She said that the brain scans showed priors. She said they were petit mal seizures, less severe episodes of this altered state. I know I’ve had them.
A few of my friends — and Deborah, of course — know as well. For the last 30 years or so I’ve had infrequent periods of up to a month during which I might have three or six of these small events a day. When I first experienced them I went paranoid, scared, almost breathless but over the years they became more amusing than horrifying.
There’d be a moment of portent, a second or two when all around me seemed more intense, and familiar. Or, conversely, a remark might seem to touch on something new to me. Light seemed to grow brighter. Then the aphasia would come down. I’d have thoughts I could not express. If I did try, the words I produced were gibberish — what Deborah calls “word salad.” She only once tried to record a phrase.
Here it is: “Regetal Hamburger Gap.”
Once on a bike trip through Holland we asked a local for directions on a very sunny day — the tulip fields ahead of us brilliantly illuminated, the sky almost unnaturally blue, –when a petit mal settled in and I signaled her to take over. By then all I needed to do would be to look at her, smile, and raise an eyebrow or point at my mouth, and she’d know.
The report from tests say I had a temporal tonic-clonic seizure. Biology.com tells me that the temporal lobes “play an important role in organizing sensory input, auditory perception, language and speech production, as well as memory association and formation.”
Light sensitivity, I’ve since read, accompanies these seizures. So do the premonitions and auras. I’m not proud that the elusiveness of cause and the features of this condition or state — its effects on speech (Babel, speaking in tongues), the intensity and nameless omens and sensitivity to light — have lent the name “Sacred Disease” to epilepsy. I imagine Salem may have executed people as witches because of its other names involving the Devil, Satan, demonism.
I can say without a doubt that after the milder attacks (I never went to doctors to report them) I began to notice during the days afterward I’d feel a heightened sense of certainty, of discovery and awareness. My head was clearer. I’ve said my brain defrags itself. I write better after the attacks.
Dr. Schlosser, a Kaiser neurologist, gave me some encouraging words when she explained that neurons in the temporal lobe are sensitive to inputs from the physical world, sounds, light, and language. They can become overactive as they do their work. They begin firing rapidly — up to five or six times their normal rate — so rapidly that they make random and meaningless connections.
Regetal hamburger gaps, you might say.
“Artists and smart people are more commonly epileptic,” the doctor said.
Think of Dali and other masters of nonsense. William Burroughs. John Coltrane.
Well. I listen to music closely, I play the trumpet almost every day, studying the minor and major, the diminished and the augmented. I’ve memorized the seven classical modes with majestic names like Ionian and Aeolian, the triads and quads of all of these, the altered scales and their chordal notes. Music is important enough to me that I don’t like to go to public sessions with friends because — inevitably and understandably — they want to talk over and through the sounds I want to hear.
And I write every day linking words to words, trying to make sense as I go, then returning to the top and starting down the blocks of print again, seeing where I didn’t make sense. Wondering why I — we all — make mistakes of expression.
Science and method are good. So is a little bit of mystery; it causes us to make connections we otherwise wouldn’t.