I return to something like consciousness lying outside the gate in the driveway, partly in the county road. Our big akitas whine and leap against the chain-link fence surrounding our place, trying to reach me. My cheek rests against gravel and I’m thinking how coarse these English beaches are, feeling about for my towel, abruptly lifting my head, for I can’t understand what my dogs are doing with me in England twenty-five years ago. I hear a car alarm blaring, likely at the church next door, and return to the present. My tongue lolls from my mouth like a dead fish; the inside of my cheeks and lips are chewed up.
“Damn you!” I moan. “Leave me alone.”
How many times has he come for me today? I lick the asphalt: salty funkiness. My legs and back are scraped up. I float in time, neither in past nor present, neither conscious nor unconscious, somewhere between. It feels like a thumb is pressing behind my eyes: his thumb. That old, dreaded, familiar feeling.
I hear crickets chirping, see stars through olive tree branches. It can’t be dark; I just woke up. Wasn’t I in the kitchen just minutes ago making coffee, counting my meds to make sure I had enough for a trip we are taking? I recall it vividly: the tingling sensation in my fingertips as if my hands were falling asleep, a foul taste at back of my mouth, numbness spreading through my arms and legs, pressure building behind my eyes as electrical discharges pulsed through my brain. I began to detach from myself, stepping out of my body and watching myself from across the room, saw pills rise in slow motion from an up-thrown hand and hang in the air. Urgent sense impressions like dreams mixed together in a blender. All went to black. At such times, I don’t know that I have fallen or that my arms and legs are doing a fierce tonic-clonic dance that will leave my muscles sore for days to come.
Yes, didn’t I have a seizure this morning? Why am I lying in the driveway?
Let’s step back a few minutes to when I was unlocking the front gate to take out the trash. An epileptic’s time is fluid at such ictal moments, everything happening at once: morning bleeds into night. Vaguely, I recall fitting the key in the padlock before being overtaken by cotton candy fuzziness, a tingling sensation across my mind as if that organ were falling asleep. I was experiencing an aura—that ineffable preamble to seizures that is hard to describe to nonepileptics since no other experience is quite like it—in a liminal state on the border of consciousness and unconsciousness, in both places at once. Not like waking out of anesthesia or a drug or alcohol high. The word “aura” comes from the Greek for breeze and might suggest a gentle wind caressing the cheeks, but there’s nothing gentle about auras, although they are often surreal and otherworldly. It feels like you are visited by some alien and pernicious numen.
Auras take many forms and evoke varied sensations: visual, tactile, aural, olfactory. Some people smell lilacs before a fit, some hear their mother calling their name, some, like writer Philip K. Dick, see space aliens; Saint Paul was knocked off his horse by a flash of blinding light; some hear a musical phrase, say Mozart or Elton John. As a young man I heard celestial music; now I hear something like a scratchy radio reporting the news. Age is hard on auras. An amorphous fog engulfs cognition like cotton swaddling the mind. Something sugary in it, a vagrant sweetness, something foreboding. I watch, mesmerized and tense, knowing what’s coming, holding my breath, all too aware of the unwelcome trespasser in my head preparing to seize control. Just before stepping beyond the seizure threshold, I experience the sensation that I’m leaving my body. Some describe it as falling into a pit or going down Lewis Carroll’s rabbit hole. Flaubert wrote of it, “My me sank like a vessel in a storm.”
That I manage to walk to the road before falling isn’t surprising. I’ve often fought off fits for minutes before succumbing; have volleyed off simple-partial seizures like a tennis player handling easy forehands; I’ve hyperventilated to infuse my brain with oxygen. Sometimes I can will seizures away. Not today.
Grand mals last mere minutes but seem to last an eternity. This one shakes the ground beneath me. I come to gurgling, needing to piss, looking up at what seems a huge granite boulder in the driveway; I can’t imagine how it’s gotten there. Can’t be sure I’m not still lying in the kitchen after the morning’s seizure. Didn’t I have a seizure earlier? Several? I can’t be sure given the retrograde amnesia that follows fits. Entire days can be lost. Surely there isn’t a granite boulder in my kitchen. I’m looking down at my body lying in the drive as if at a stranger: legs and arms akimbo, mouth twisted to one side, blood trickling out. Poor bastard. It’s alarming to vacate yourself this way. Terrifying. It means that SOB has taken possession. He’s in control. Maybe permanently.
Just then my wife Cin comes out the front gate shouting my name, alerted by the car alarm that I set off when I fell on my keys. This is the racket I’ve been hearing, not crashing surf or my dogs yowling. I realize, too, that the boulder I am staring at point blank is no boulder at all but a rock no more than four inches high.
I don’t remember Cin helping me to the house. Consciousness is spotty around fits, as if the fabric is half eaten away by acid. One moment I’m in one place, the next in another without transition. That blathering car alarm morphs to Cin on the phone dialing 911 to flashing lights painting the inside of our farmhouse blue-red-blue-red, sirens winding down, our big akita Mo snarling at paramedics entering the house. He’s trying to protect me; Cin coaxes him into a bedroom. I witness it all detachedly. Tall men in crisp blue paramedic uniforms grip my elbows and lead me to a gurney outside. Apparently I had another fit in the house, having entered a state of status epilepticus, wherein one seizure follows on the heels of another. A perilous condition that can kill you. The brain becomes exhausted; the heart stops.
Fifty years and you’d think you would be done with a vagrancy such as mine, a dodgy, itinerant ailment that comes and goes as it pleases. My wife once said I don’t accept that I’m an epileptic. Maybe not fully. But you can’t take your meds morning and night every day of your life or experience auras that sneak up on you while you stand at the sink brushing your teeth or—God forbid—while you are climbing a ladder and not realize you’re an epileptic. You can’t slog through post-seizural depressions, the profound grief that Dostoevsky writes about, walking around in gloom for days, and deny you have the ailment. You can’t catch occasional glimpses of your other self in store windows as you walk down the street, trailing you like a menacing shadow independent of sunlight, and not know something is wrong. I never fully see him, just sense his menacing presence. Perhaps mine isn’t so much lack of acceptance as a decision I made long ago not to let my ailment limit me. I wanted the trespasser to know he isn’t welcome in my territory. I wanted to live a full life.
I’ve done most things I’ve wanted to do: drive, hike, canoe, travel, once skied (broke my jaw while skiing an NCAA downhill course in Oregon when I was twenty-two); I repair roofs, use chainsaws (cut firewood at twenty below zero one winter in Upstate New York to stay warm); I used to night swim in the Hudson River in Rhinecliff, New York (dove down into cold dark water and felt sturgeon brush past); smoked grass and dropped acid back in the day; I’ve commuted long distances to work in all kinds of weather (from New Paltz to New York City to work as a writer-in-residence in inner-city schools and from Riverside County to San Diego State to teach writing); I was the first VISTA Volunteer in Alabama as a young man, working in the Civil Rights Movement and the War On Poverty; I lived in the redwood forest in a shelter I built in a huge burned-out redwood stump after graduating from Berkeley; Cin and I flirted with homesteading in Alaska, drove up the ALCan Highway prepared to live in the Matanuska Valley, hunting moose and subsistence farming, but homesteading was closed to settle native land claims just days before we arrived; we motorcycled through Italy and Yugoslavia, lived in Spain, Israel and England. We’ve tried to lead adventurous, nonconventional lives—she as an artist, me as a writer. At no point have I said: “I’m an epileptic, I better be cautious.” Not often, anyway. So, yeah, maybe I haven’t fully accepted my ailment and have gone a bit over the top to defy it. Such defiance is common with epileptics, as is suggested by the many adventurers, generals, and leaders who have battled epilepsy: Julius Caesar, Joan of Arc, Napoleon, likely Muhammad, Joseph Smith, Saint Paul… the list is long. Not to mention writers and artists like Dostoevsky, van Gogh, Moliere, Handel, Jonathan Swift, Lewis Carroll, and—it’s speculated—Emily Dickinson. While defiant, we are often secretive about our ailment, as Dickinson was, fearing ridicule. You don’t blithely declare, “Hey, I’m an epileptic,” as I, perhaps foolishly, am doing here.
Such defiance has been a guiding principle for me, learned from my father who long refused to acknowledge I was epileptic. Nothing courageous about it; I’m cautious by nature. To the extent that I have been bold in the face of my disorder, mine is courage inspired by the fear that it will prevent me from living the way I want to live. For years, just the suggestion that it could be dangerous for me to do a thing incited me to do it. I refused to surrender to victimhood, telling my other self, “You’re not in control here, pal!”
So far I’ve been lucky. Status epilepticus has not become status moribundus. I have not swallowed my tongue or cracked my skull during a tonic clonic (grand mal) seizure. I have had auras and partial seizures standing before classrooms full of students, but never, thankfully, a grand mal fit. I am fortunate to have a loving and courageous wife and supportive family and friends and good medical care. I can’t imagine what life would be like without them. I have good medical insurance; some epileptics have none and can’t afford the expensive meds that could control their seizures. If epilepsy teaches you anything, it teaches you that none of us are fully in control of our lives. Mine is an ailment that knocks you off your feet with little warning. One thing I know for certain: shit happens.
But I wonder if my luck has run out. After years of relative quiet, my epilepsy has become mysteriously active again. Anti-seizure meds don’t just fail to control my fits but actually induce them. I begin to suffer bouts of multiple seizures and status epilepticus. I’ve felt fear’s putrid breath in my face before but never so strongly. For the first time in my life, I’m afraid that epilepsy will get the better of me. He will! My other self, my secret self, toad man, the trespasser… I have many names for the bastard—that small renegade brain inside my larger brain that sometimes takes over, that fascist pig who doesn’t care whether I live or die. Imagine having Donald Trump living in a small room in your temporal lobe, tweeting insane messages to the rest of the brain. I’m good and scared. Will I finally fall victim to a few rebellious neurons in my head?
Our ailment remains haunted by superstitions and whispers of witchcraft that have passed down through the ages. While it is now considered a neurological disorder, early psychologists, the alienists, thought ours a form of mental illness, even psychopathy. Eugenicists and social Darwinists considered us moral and mental defectives, products of degenerate gene pools that must be eliminated to purify the human race. We were thought criminally insane. During the Middle Ages, we were burned as witches. Ancient cultures believed people with the falling sickness were seized by divine or demonic spirits during their spells. The Bible says we are possessed by evil spirits. Many of us might agree that it feels like an evil force possesses us during our fits, but our demons aren’t sent by gods or devils, witches or jinn, as many religious communities still believe they are, but reside in small corners of our brains, ready to leap out and seize temporary control—tiny lesions that sometimes misfire and wreak neurological havoc. Most of us will battle our demons all our lives without hope of a cure. A malicious ghoul out of the Bible or Grimm’s Fairy Tales is forever out to do us in. Our evil doppelganger.
I would formally introduce mine to you, but I can’t because, although he shares my body and brain, I’ve never met him face-to-face. The sneaky bastard stays hidden in the gray matter of the cerebral cortex plotting ambush. He sneaks up behind and knocks me unconscious before I can get a good look at him. I know him only from the vestiges he leaves behind after a fit, as you might come to know a graffiti artist by the tags he scrawls over walls and culverts (inside the cave of my skull). He is like “Sane Smith” whose tag I often saw in New York in the Nineties—high up on walls of apartment towers along Riverside Drive or pilings of the George Washington Bridge (how did he get up there?). Maybe he looks like me, this intruder, or maybe I wouldn’t recognize him if he worked out beside me at the gym. At times, I have caught a glimpse of him before he dodges around a corner—during simple partial seizures and on the twilight verge of complex partials when I am both out and in at once. How strange to sense him brushing shoulders with me as he passes, looking straight ahead, refusing to acknowledge me. I sense but don’t see him, for I am struggling to maintain control, trying to stop the bastard from wresting body and mind away from me and sending me spinning into the abyss. Such encounters are fraught with fear and loathing. Doubtless, Dostoyevsky wrote The Double because he, too, was followed around by an accursed doppelganger who was always plotting to push him down the cellar stairs (like the poor servant Smerdyakov in The Brothers Karamazov). At times he clubs me over the head with a baseball bat, at others merely needs to give me a little shove. If he wants to take possession, I wonder why he doesn’t take it for good. His greed is voracious but seemingly pointless.
I do get intriguing glimpses of him during partial seizures and auras. He can be a child playing hide and seek, ducking behind a door post just as I turn to look, retreating to a corner of the mirror as I stand in the bathroom starting to feel a bit off, or whooshing down a memory hole like the white rabbit—taunting, teasing, enjoying himself. He once played me strains of celestial music before fits. But generally I see him as a bloated toad, hanging out in a marshy backwater of my temporal lobe ready to pounce on consciousness. Toad man. Or as a pathetic version of myself or a wan Lutheran preacher, gaunt-cheeked and grieving over the human condition, flesh eaten away by worms, a minister of death and postictal grief. Ambassador of sadness.
I don’t much like my other self and, given what he’s does to me, he doesn’t like me either.
It’s by his doings that I have come to know him: the vague promises he makes me in strange, haunting auras, his brushings past, odd whisperings, memory lapses, gaps he leaves in consciousness—hours, entire days gone. Odd to come to know someone not by what you see of him but only by what you can infer. I know him by the aching muscles he leaves me after a fit, chewed up cheeks, a dull, heavy feeling in my head, a sense of grief for all the world. But Cin has seen him face-to-face. From what she’s told me, he is exactly what I would expect him to be.
Convenient, isn’t it, to have an antagonist built into you? Not to have to seek one in the outside world. It saves time and energy. Relieves you of the need to find enemies since you are at war with yourself—your other self. You know that your enemy can’t hold possession for long. He’s a taker not a builder. No doubt he expends a lot of energy during fits. Seemingly, he wears out quickly. You just need to outlast him. Moreover, it’s a matter of survival for him. He knows that to keep me in a prolonged state of status epilepticus will lead to our mutual death. In that way he’s like a virus that dies with its host. Of course, viruses can leap from person to person to stay alive. My trespasser is confined within me. I can’t pass him on to anyone else.
We temporal lobe epileptics are famously diligent and committed, even obsessive. We chew a bone down to the marrow. Maybe that’s because our other self is such a flighty bastard. We need to stay steady on. While some love to take a vacation from consciousness, we value nothing more than being alert, wide awake, clinging to consciousness with all our might.
Image: Face off by Karoly Czifra, licensed under CC 2.0.