/ Nonfiction /
We all harbor multiple selves. Freud recognized this in his Id, ego, superego paradigm: unbridled hunger, adult in the room, pesky conscience. Most telling for epileptics is the conscious versus the unconscious mind, since the second can take over from the first at any time with little warning. For my own epileptiform selves, it is useful to indulge childhood’s “me,” “myself,” and “I” conceit. Add to these “us” and “him”—that malignant authoritarian (whom I call Toad Man) who occasionally usurps my other selves. Five entities crowded into a single psyche is a heavy load.
“Me” encompasses my youth and young adulthood when my ailment bullied and frightened me, as it does all who are assaulted by epilepsy young and lack the tools to resist or understand it. “Myself” navigates the long haul of adulthood, beginning in my tempestuous late twenties/early thirties when I first declared myself a writer and began, as they say, to find myself. It wasn’t until my sixties that the solid “I” self took over after I had suffered my last grand mal seizures and put them behind me for good (hopefully) and boldly declared, “I am an epileptic,” and started to write about it. It’s the point of view from which I write this account.
“Us” has been with me from the start. It is the glue that binds all my disjunct selves together, both the grandmother whose support is unconditional and the obnoxious Uncle who invariably starts a political argument at Thanksgiving dinner. Since he is family, you have to tolerate him. This brings me to “him,” Toad Man, that SOB trespasser and wreck havoc who seizes control of my brain and slams me to the floor without warning. He creeps up on me unexpectedly while I’m making coffee or driving or at the desk, like he did when I rode the school bus as a boy. He hangs out somewhere in my temporal lobe: a renegade cluster of neurons forming a small brain tucked inside the larger brain that sometimes takes control of the whole. He is Dostoyevsky’s doppelganger, Saint Paul’s lightning flash, Poe’s raven, Joan of Arc’s voices. All knew the usurper well. I have tried all my life to hold him at bay with meds and mostly succeeded. You need powerful weapons against a bully like Putin. Curiously, he seems diminished now that I’ve reached my “I” years. Sometimes I hear him laughing and goading me in the background, but he no longer throws me to the floor. Maybe I’ve outlasted him or he has aged and lost some of his vigor.
* * *
Childhood before my first seizure at age twelve is nearly a blank slate. From my early years on Friendly Street in Eugene, Oregon I remember only the huge amphaloola tree (we called it) in the backyard in whose branches I spent half the summer, and my mother rushing us kids to the basement during thunder storms, frantically removing our belts, believing metal buckles attract lightning, and feeding chickens and taunting pigs at my grandmother’s farm in Tigard, plus the night I walked across the ceiling into my parents’ bedroom, where I clung to a light fixture, looking down at my sleeping parents, afraid I would fall. When I did, I landed back in bed. For years I couldn’t convince myself it was a dream. After we moved to the suburbs north of Eugene, I recall roaming through new housing developments that were devouring local farmlands with my friend Butch, blowing up toy soldiers with firecrackers, and feeling dizzy at times riding the school bus. Little more.
It seems that in my case retrograde amnesia—which erases memory of events preceding a seizure including the terror we feel—went to extravagant lengths and erased large chunks of my childhood and obfuscated much of my adolescence during the onset of epilepsy and the start of serious tensions at home. Looking back at my troubled junior high school years, I see only vague shapes through dense fog. In high school yearbook pictures I look immature relative to other kids, who look like sixteen year olds while I look like a child. My ears stick out too far, my hair is tousled atop my head like Alfred E. Neuman’s. I haven’t yet begun to grow into myself. I don’t know how many fits I had during my pubescent years, since amnesia erased them and no one mentioned them. Tense and unhappy, my mother began drinking heavily. Thick silences at dinner often gave over to her angry moods as the evening wore on, while my father pleaded with her in a helpless voice that made her all the angrier. Ours was a family trapped in a dystopian fairy tale: upper-middle class whites in America’s golden age of abundance, but emotionally impoverished. Memories from that troubled time are like elusive visions from a pre-seizural aura. I can’t say whether they are true or apocryphal.
The “Myself” period began in early adulthood when I first declared myself a writer, after my college years at Berkeley and my stint as a VISTA Volunteer in Alabama. I remained in denial about my fits while I knocked around in the Sixties counterculture, lived in the redwoods on California’s Mendocino coast, hooked up with Cin to begin our life-long journey together, flirted with homesteading in Alaska, made hash pipes in the Sierra foothills, saving up to go abroad. “Tell no one” was my oath.
At one point, staying at a friend’s house in Spain while she was away in England, I had stopped taking my anti-seizure meds, inspired in part by Dostoyevsky’s The Idiot. I had just begun my first novel and was thinking in some wigged out way that seizures would enliven my muse as they seemingly did his. Moreover, I was convinced that there was a link between spirituality and epilepsy, since many religious visionaries like Teresa of Avila, Ann Lee, Joan of Arc, Ezekiel, possibly even Mohammed were epileptics. Like Ezekiel, I wanted to see the wheel spinning in the middle of the air; I wanted to be knocked to the ground by the hand of God as Saint Paul putatively was. My altered states of consciousness convinced me that Temporal Lobe Epilepsy, with its otherworldly auras, was a portal to another dimension. In preventing them, I was forfeiting a gift I’d been given.
After several days without meds, I had a violent tonic-clonic seizure that sent me under the dining room table and scared the wits out of Cin, who thought I was dying. She knew I had epilepsy but had never seen me have a seizure. Given the trauma it caused her, there could no longer be any denying my ailment. I needed to face it.
This “myself” period of my adult life spans forty odd years: from Europe back to the Redwood Coast, across country to a two-century old farmhouse in New York’s Adirondacks, where the winds hit heavy on the borderline, then Brooklyn, and England for a time, up the Hudson River to Ulster County, back across country to San Diego, finally to an old farmhouse in Hemet, California under the eave of the San Jacinto Mountains. From soaking rain to sub-zero snow country in the North Country Fair to the California desert. From carpentry, to freelance journalism, to working as writer-in-residence in New York State schools, to teaching writing at San Diego State University. During this time, I wrote nine books and countless short stories and articles. Add the friends, small pleasures, challenges, and vicissitudes we expect of life—with my curse always waiting in the wings. Some might see it as a restless life: I couldn’t decide where I wanted to be or what I wanted to do. I prefer to see it as a journey with no known destination. I believe a fiction writer is best served by a wide breadth of experience and all of us by a good helping of serendipity in our lives. I did whatever came along, embracing my writer friend Frank Dunlap’s credo: “Writing should always come first.” Add to this what artist Alice Neel once told me in an interview, “You take what freedom you can from the scene.”
Along the way, I have championed Cin’s painting and filmmaking, and she has been my most ardent supporter. As much as man and wife, we are help mates. Fellow travelers who have taken our small portable arts colony with us wherever we’ve gone and lived mostly on the cheap, wanting time to create more than money, seeking the “peace and space,” as Solzhenitsyn has it, where creativity thrives. In terms of lifestyle, we are mostly on the same page. The pronoun “we” presides in our collective life more than “I.” Love and friendship are constants. We share a conviction that for artists there are no greater virtues than persistence and resiliency. No greater certainty than disappointment. Every success is a small miracle. I suppose we believe in miracles. Our union first among them.
Sadly, epilepsy has also been a constant in our lives. Over my adult years, grand mal seizures haven’t come often, but they’ve come. Among the most traumatic was one I had on headands overlooking the Pacific below a huge lodge-like house we were renting on Navarro Ridge Road on the Mendocino Coast that we dubbed the Dunwich Horror house, since the movie of that name was filmed there some years earlier. A cold, cavernous, down-at-heels place with many rooms, reminiscent of the hotel in “The Shining.” I’d gone for a walk at dusk along a trail wending through mustard grass, bracken fern and ancient cedars that were giant wind-sculpted bonsai trees in the fog. Surf crashed against rocks below; the air was spiced with mossy decay in that damp place oppressed by the eternal twilight of winter. Pressure mounted behind my eyes, a familiar storm built inside my head along with the one building outside it; voices chattered cricket-like around me. I knew what they portended: a familiar cotton candy dizziness and tingling in my limbs. Alarmed by my howl, crows cawed raucously in the cedars. Then nothing.
I woke to a dark figure with a Van Dyke beard squatting over me. His black eyes were unkindly, his breath stank of meat and garlic. He shook me roughly. “That’s a weird fuckin’ place to sleep.” When he stood up, long-legged, foreshortened, wearing a trench coat, I thought him a demon. Toad Man. Disoriented, shivering and soaked to the skin by a light rain, I’d chewed up my cheeks in the violence of the seizure and blood trickled from my lips. The stranger prodded me roughly with the toe of his logger’s boot, his sneer a curse. “Get up, man. Fucking clean yourself off.” He continued on down the trail and disappeared into the fog like a ghost.
I soar up away from my helpless body like a kestrel toward a line of liminal light hovering out beyond the fog bank that squats over the ocean. A presentiment of something dreadful lingers at the fringe of consciousness and shivers me to the core. Then I’m sucked back into that body collapsed beside the trail again.
The malevolent stranger reappears one full moon night some weeks later. I am walking Navarro Ridge Road in the moonlight when a great horned owl swoops down like a silent demon with a six foot wing span just over my head. Its outstretched talons glisten in the moonlight. It circles close, then makes a second pass. I doff my jacket and spin it around my head, shouting, “Damn it! I’m not a rabbit.” But to this strange specter perhaps I am.
Nothing is more humiliating than a public fit. Your naked secret self exposed to strangers and the very real danger that they will intervene inappropriately and try to impede your movements or shove a foreign object in your mouth, since many people think that’s what they should do. What is odd about my public seizures is that, unlike other fits, they are preceded by déjà vu auras—an overwhelming sense that I have visited the moment before. Once, at a friend’s apartment in San Francisco, I glance at an antique side table with elaborate rococo inlays and find myself looking at a similar table in a neighbor’s house twenty years before. The aura is immediately followed by a seizure. No telling why. Another incident occurs at a down home diner in Poultney, Vermont, just over the New York state line shortly after we have moved east from California. It is an anxious time: no work, no prospects, no connections. Anxiety can be perilous for me, but is sometimes unavoidable. Cin and I are discussing a cottage we may rent when I notice an antique butter churn on a display shelf like one my grandmother had in her kitchen. I’m instantly overcome by the impression that I have sat on this hard wooden bench before, and I feel Toad Man’s hand seize the back of my neck. I tell myself, No! not in this restaurant surrounded by strangers. Cin asking, “Bill! Are you all right?” Of course I am. I learned as a boy not to shame myself in public. I seize handfuls of air, trying to ward it off. Nurses in white uniforms seated at a table behind us are laughing, actually laughing at me.
Next I know I’m stretched out on a wooden bench that I take for a church pew, an arm twisted under me; wingless angels in white uniforms crowd overhead, chattering instructions, fanning me and caressing my neck, their faces long as tire irons. I assume I am dead, and these angels have come for my body. My arms and legs are sore from slamming against the bench. Later, Cin tells me it was one of the angriest seizures I’ve ever had. I fought it off, not wanting to seize in public; all the fury with which I had resisted seemingly invested in the fit. Then I realize these angels are the laughing nurses. They apologize profusely. “We should have known,” one says. “We thought he was joking around, wiggling his arms like that.” I am aware of kitchen help peeping out from back, horrified diners at other tables. Mind your own business. I’m no freak. But I am not yet able to talk. I think of the epileptics who regularly have seizures in public—at work, on the subway, walking down the street—and I am humbled.
* * *
It was easy to leave after a brief visit since Bill’s father didn’t know he was there—in
the Alzheimer’s unit at Brighton Gardens senior home in Rancho Mirage, California, ironically called “the memory unit.” The plaque on his door read: “John Luther Luvaas” and noted that he was a judge. A stern one, Bill thought, of his sons, anyway. He didn’t know that this would be the last time he saw his father alive. Although something deep in him—a cavern of the mind that harbors whispers—intuited it. His father was feeble, ashen, unshaven, confined to a wheel chair, but no trace yet of the pneumonia that would carry him away some days later. His expressionless eyes stared into space. Who knew what they saw? He kissed his father’s forehead and quietly left with his wife.
The grand mal seizure he had on the way home (thankfully as passenger rather than driver) was announced by a sensation that he was stuttering in time, landing here and there at different moments in his life without rhyme or reason. Not in the California desert near Palm Springs but riding through dark, melancholic Oregon mountains in his father’s Pontiac as a boy, the radio murmuring fugue-like, his mother asking repeatedly if he was all right. Or perhaps his wife.
When her husband started thrashing about in the passenger seat, knees bucking against the underside of the dash, she pulled hurriedly off Highway 10 into the Cabazon Casino parking lot. His fist pummeled the passenger-side window; she feared he would break both glass and knuckles. His breath stuttered, an anguished gurgling in his throat, a pink froth of blood trickled from his lips. When he stopped breathing, she pushed hands repeatedly against his chest, doing artificial respiration. No way to turn him onto his side to relieve pressure on the diaphragm as she would have done outside. His face was ashen. Death was trying to get in the car, and she feared he wouldn’t start breathing again. Some epileptics don’t. A switch turns off in their brains, and they forget how to breathe. After what seemed an eternity, his body jerked with one final paroxysm; he went still, eyes rolled up in his head, pulse flinched at a vein in his neck. “Come back,” she cried. “You can do it, honey.” In response, he shook head to toe, released a plosive exhalation, and started breathing again. It was as if he had experienced a small death and come back to life. What lasted only a few minutes seemed an hour. She watched her husband, her best friend, crawl back into himself like a timid child entering a room.
Next morning as they sat outside with coffee, she watched a pet blue jay chase down a dog treat she had thrown, pluck it up in its beak and fly into the bramble of a pomegranate tree. Their big akita Mo lay at Bill’s feet as if on guard duty, both of them subdued as always the day after a seizure. “I think you feel threatened,” she said. “You are worried about your dad.”
Thoughts trickled through his brain post-seizurally like water seeping into the ground after a rain. “Why would I feel threatened?” he asked at last. “We were never very close.”
“No? You just had a seizure over it. Something in you feels threatened.”
“I hated seeing him like that: hunched in his wheelchair, thin as a camp victim, dead eyes and bony hands. It was spooky. Maybe it was a sympathy seizure.”
She nodded. “Emotional stress is a danger zone for you. You can be super tense about other things without a problem, but not family.”
Although Dr. Shack insisted epilepsy was a neurological not a psychological disorder, Bill did wonder whether upset about his father was triggering recent seizures, as he was certain family tensions had when he was a kid. There was faulting deep underground in the geology of his subconscious. Childhood fears were buried in deep memory, likely near the seizure focus in his temporal lobe. Nonsense! There was no explaining it. Wreck havoc neurons danced to their own jittery rhythm. No rhyme or reason to their hell raising.
For months following his father’s death he suffered multiple seizures, the worst of his life, some lasting minutes, or one following on the heels of another in quick succession: a state of status epilepticus that took him to the hospital. He had stopped teaching after he’d begun having brief lapses in class, and hoped that lowering the tension would help bring his ailment under control. Instead the seizures became worse. Dr. Shack determined that after fifty years of dependence on Dilantin he had developed a tolerance for the drug, and switched him to other medications. For a time they didn’t work. Shack said it was just a matter of finding the right cocktail of meds to control his disorder. Once they did, the tincture of time would restore him to normalcy.
Despair, Bill had always believed, is the mother of hope. You reach bottom, there’s no place to go but up. Perhaps he hadn’t bottomed out yet. Intuitively, he knew when he would have a seizure but couldn’t say why they came when they did even after a lifetime of living with them. He could find no conscious reason for their onset. He must enter Toad Man’s mind to fathom his logic, but how enter a brain secretly hidden inside your own? Likely, that small, perverse clump of neurons followed its own disordered rationale beyond any conscious logic-making. There was no coherence to Toad Man’s thought process. He was like a kid with ADD, leaping pointlessly from one thing to another. The ultimate rebel against all forms of authority (especially his host). Aggressive and confident, his handful of neurons regularly seized control of the billion surrounding them. He suffered van Gogh-like rages and longings that rushed through him, causing his tiny reptile brain to seethe. He was a mad teenager cruising the neighborhood shooting cats just for the hell of it. Bill came to think it was not emotional stress, or loss, or tension that brought on seizures, but uncertainty. In that way he was like the stock market; he couldn’t tolerate instability. It lowered his seizure threshold and caused volatility in the brain. A hopeless dilemma since nothing is more certain than uncertainty, especially for an epileptic.
One Sunday night while taking out the garbage, he met Toad Man face to face on the county road in front of the house. Bill was wheeling out garbage cans under a full moon that bathed flanks of the San Jacinto Mountains to the east, glistening on their snow-capped peaks. A night hawk screeched high overhead. He was startled by a figure standing on the verge of an empty field across the road, a silhouette cut from shadows, lacking discernible features. It stood stock still as if hoping not to be seen. A phantom, surely, figment of an imagination that was always jittery taking out the garbage after dark in what could be a dicey neighborhood. Then it moved. Moonlight glinted in its eyes under the bill of a cap. “Is that you, Toad Man?” he asked. But experienced no tingling in his fingertips or cotton candy fuzziness coddling his brain or sense of stepping out of himself that always announced a seizure. Instead, he sensed the man’s nervousness in the dark. “What are you doing here?” he demanded. “You trying to move in on me again, asshole?”
“Whazzat?” a high-pitched voice asked. “Man, I just walkin’ past.”
“I want you out of my life, you freak.”
“I just passin’ by, brother, minding my own. Ain’t no need to cuss me out.”
Alarmed, his big akitas barked inside the fence. Mo leapt against the gate, snarling. “Wachout!” Toad Man cried. “Better watchout now!” Bill heard his feet slap the pavement as he ran away. He pinched flesh on his arm. This can’t be. Auras are never so palpable. They don’t speak. Perhaps this was some new manifestation of his ailment, wherein reality and epileptic auras melded together and he could no longer distinguish between them. Having entered a state of total epilepsy, he would see Toad Man wherever he went. His brain and the small rebel brain it harbored within it would in some nefarious way become knitted together.
* * *
Now in the “I stage” of my tripartite life I have put grand mal seizures behind me. What I face mostly now is what I call “dark fogs,” the neurological equivalent of clouds hugging the ground. When a dark fog overtakes me, I feel existentially drowsy, like after a sleepless night, my eyelids heavy as sand bags. Figures flit jerkily past at the periphery of vision. I sense Toad Man standing behind me with his mocking grin while I brush my teeth, just to remind me he’s still here. Along with such fogs come simple-partial seizures, a few frames clipped from the film of my experience before I move on as if nothing has happened. These occur while I am at the desk or with friends or working out at the gym, even while driving. Like low pressure weather systems, they can linger all day or for days on end, making me feel gloomy, disoriented, and “dead in the head,” as van Gogh put it. I feel like I am dragging a truck tire uphill in training for some pointless marathon. Cin knows when I’m experiencing such fogs; no one else does. “Your eyes look blank,” she tells me. My dogs know.
Dostoyevsky describes such fogs (which he likely experienced himself) in The Brothers Karamazov: “Smerdyakov would come to a halt, reflect and continue to stand thus for up to ten minutes at a stretch.…There was at work no thought, no process of the intelligence, but rather some form of contemplation….Were you to jog his elbow, he would start and look at you as though he had just awoken, but would take nothing in.”
Grand mals never follow fogs, but brain fogs feel like grand mals in slow motion. Like I have entered an Edgar Allan Poe story wherein everything is gloomy and fraught with ominous meaning. However, there is a silver lining to dark fogs. They are often followed by periods of great creative energy, as if this mental storm system, with its turmoil of electrical discharges, has cut new pathways of creative thought through my mind.
It is not easy to describe dark fogs—even to myself. Just yesterday I was sitting at the desk at work on this memoir, writing a segment about my parents’ troubled marriage, which may well have contributed to the event. Although we are advised not to psychologize our ailment, at times it’s inevitable. I am aware of nothing preceding the incident: no thought or aura or premonition. As Dostoyevsky had it: “No process of the intelligence.” Suddenly, I am lost in time, suspended in an albumen of nothingness. Time has expanded to encompass past, present, and future at once, self and nonself. I am in the land of Salvador Dali’s melting clocks, a zone of existential disorientation. Perhaps this is what you feel just before death: time dies first and shrivels around you. I am not sure whether it is morning, afternoon, or night. At first, I think that it’s early morning: I have just awakened and been thrown headlong into the waking world, suspended between consciousness and unconsciousness. So what am I doing at the desk, my fingers on the computer keypad? I must have gotten up and come straight to the study before washing up or taking my meds as I always do. Next I’m thinking it must be night. How then explain light pouring in the windows? I make my way to the kitchen. The small vial containing my nighttime dose of anti-seizure meds isn’t sitting empty on the counter as it should be when I wake up. It sits on the dining table just where it would be if I’d taken my morning dose. How odd. By default, I realize it must be midday, though doesn’t feel like it, more like I am afloat in a timeless dream. Agitated, I make my way back to the study and see that the clock on my computer reads 3:43 PM. Yes, of course. It couldn’t be AM unless the sun is rising very early. But what day is it? Knowing that will give me a clue to where and when I am. The computer says Sunday 1/22/2023. That’s right! This evening we have a dinner date with friends. Confusion shrivels around me like a deflated balloon; I feel relieved. Stable on my mental feet again, I take deep breaths and realize I’ve had a complex partial seizure. It’s demoralizing. For the past few months, since I have been taking a dose of Lamictal mid-day, I haven’t had such events and hoped I was through with them. Seemingly not.
To say I feel disoriented for a time doesn’t do the thing justice. Disoriented is not knowing what street you are on for a moment. This is a fugue state such as you might experience on your deathbed. It feels like a temporary death. Years ago, I had such dislocation spells a few times while driving (I hesitate to admit this). Remarkably, I kept going on auto pilot, managed to stay in my lane and stop at lights, managed to turn at the right streets, although confused and disoriented. When I finally came out of it and realized where I was—about to pull in my driveway perhaps—it was a relief, although it felt like I hadn’t driven but had been teleported there.
If you have ever wondered why time should matter in our lives, why we keep such close track of it, you would find such spells instructive. Our diminutive hour-glass computation of time is a life raft in a vast, empty universe wherein time is measured in light years and our lifespan is not even the blink of an eye. It is as perilous to our well being to be out there mentally as to be out there physically. We need our diminutive clock to stay sane and centered. Without it we would drift off into the ether.
Such disorientation spells have become the most common manifestation of my ailment in this portion of my life. I feel I have put a little distance on Toad Man. At times I hear him panting in the background, trying to catch up, feel his foul breath on my neck, but I am hopeful I can stay ahead of the crazy SOB. Not so cocky as to believe I can ever be totally free of him. He is a canny adversary that I’ve come to respect and know I will never fully leave behind.
Perhaps many of life’s vicissitudes serve us both for good and ill. My mother’s battle with esophageal cancer, for instance, revealed a tenacity in her that none of us, including herself I believe, knew she had, holding up bravely under fire. I hope I can face death with her courage and dignity. We don’t always know what we are capable of confronting until we confront it. Epilepsy has been an ironic gift to me this way: terrible at times, yes, but it has also shown me what I am made of.