By Bob Dorn

Photo by Gellinger (Pixabay)
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.
Beautifully written, Bob!
Nice work, Bob. Thoughtful situationer with useful info. Hope you continue to flourish. We all need all the help we can get.
Thanks, Welton, thanks Tim O. I appreciate.
Hope you continue to heal and feel better. Just a question- why not go to doc earlier?
The petit mal events didn’t seem serious enough to report to
doctors; my motor skills and general awareness were not
compromised during and after the lesser attacks. I sort of
wrote them off to concussions from playing ball and/or some
chemical trips I took, back then. which, I’ve lately read, turn
out to be considered potentially causal. Also, I was stupid enough to
think that if I couldn’t reproduce the symptoms at will doctors
wouldn’t be able to diagnose. There’s a lesson
in there, somewhere. I wouldn’t recommend anybody ignoring
these blips on the mental screen.
Thanks. My dad and brother both ignored symptoms, and sadly they both passed at relatively young ages. How about recommending folks just get things checked out? Best wishes for a calm recovery.
ps- thank you so much for writing about your experiences- It can help people more than you know.♥
That last sentence means a whole lot to me.
Is it just a rumor or is it true that cannabis is an effective rub on treatment during one of these event> Hear anything like that? What would have happened if your wife had not called 911? Glad you are prospering.
I haven’t heard or read anything on cannabis oil. Not sure I’d
try smoke during the light spells and it woulda been impossible
during the full-on lights out. A good source is the U. of
Michigan’s Epilepsy Foundation, home paged at:
http://www.epilepsymichigan.org/page.php?id=358
Some of the interesting stats there:
— it’s the 4th most common neurological disorder, after migraine,
stroke and Alzheimers;
— 4% of population will develop it to some degree, or another;
— most common among children and the elderly. You can guess
which cohort I’m in.
Excellent article Bob. Thanks much for sharing your experience and insight. Stay healthy!
Beautifully written Bob. You continue to amaze me. Love you, my friend!
Be well, dear Bob!
Bob this information should make all of us stop and think about some of our experiences. I appreciate you sharing this information we all needed this lesson. Please take care of yourself my friend. REGULAR DOCTORES APPOINTEMNTS.!
Bob thank you very much for sharing. I’ve been learning a lot about the branding since my 29 year old son had a traumatic head injury and September 11th and it’s still going through the three stages of rehab reconstructing his brain from zero, and I’m looking forward to I’m getting into kindergarten
Thanks to all for the best wishes.
Had no idea you were going through all this. Great expression of your personal experiences. Heal well and happy holidays, my friend.
We love you Bob
Kevin, Cindy and Emma
Well, Bob, I always felt you were unique. And now I’m going to help you show the world. I promise by next Christmas you will have a generously padded full body suit along with a fluffy helmet to protect next time you are befalled with an episode. You’re much too cherished and important to lose to the corner of a coffee table. As we all slowly deteriorate, most tend to keep quiet about impacts and withdraw into dark, personal spaces. I know this from personal experience when I had implants to prevent “old man ass” syndrome. So kudos for having the balls to talk about this and share it with your fellow deterioratees. But then, you keeping quiet is an oxymoron. And now after reading about your experience, I have to say, “Thanks so very fucking much.” Now everytime I catch the glint of the sun’s reflection off a window, windshield, or the bald guys head in front of me, I gotta start worrying about whether I’m also gonna start gargling. Just great! I’m inordinately worried enough about so many other health signs, now you’ve saddled me with this? But I’m making this about me, apologies. You are a dear friend and I’m glad you are in my life. I’m better for it. And keep playing that damn trumpet, regardless of the pain you cause everyone. Hope to see you and Barb soon. Let’s go to a place where you don’t need to wear the suit…unless it’s Christmas time when padded suits are in. Seasons best to you both. Talk soon, Buz
Get will soon Bob and you have my prayers. Here’s to a full recovery.
Go on Bob… You are a fascination, for sure! Keep us posted.
Beautifully written, Bob. Keep on top of it. Never realized how serious this could be.
Thank you for sharing your experience, Bob. I had a grand mal in 2009, lost my drivers license and everything. Wearing the bracelet, taking meds, was very hard for me to process. I now understand so much more, which helps me to connect with others who have serizures. Your candor is much appreciated.
It never quite goes away, supongo. But… I wonder if it isn’t a
sort of spice that makes us more aware of each moment, huh?
See you on the same pathways.