A cluttered mind: a man's lifelong struggle with Epilepsy

Cluttered mind: a man stands outside in the cold looking at the camera. In the background are mountains and storm clouds.

I think of the epileptics who regularly have seizures in public—at work, on the subway, walking down the street—and I am humbled.” | Photo credit: ©soleg / Adobe Stock

A cluttered mind

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 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 twenties or early thirties when I first declared myself a writer and began, as they say, to find myself. It wasn’t until my early 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.” 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,” that SOB trespasser and wreck havoc, whom I call “Toad Man,” 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.

Before my first seizure

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 thunderstorms, 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 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 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.

Epilepsy in my thirties

The “Myself” period began in my early thirties 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.

This period began in Spain while staying at a friend’s house when she was visiting 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; like Saint Paul, I wanted to be knocked to the ground by the hand of God. 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.

The “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, valuing having 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.

Epilepsy has been a constant in our lives

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 the huge lodge-like house we were renting on Navarro Ridge Road 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, frozen in their strange dance in a misty, otherworldly luminescence. 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 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 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. 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 squatting 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.

Nothing is more humiliating than a public epileptic fit

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 you! 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 an 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’ve 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 instance 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 feel Toad Man’s hand grip the back of my neck. I tell myself, No! not here 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. It’s just a matter of will. I seize handfuls of air, trying to ward it off. Nurses 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 thrashing 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, and all the fury with which I had resisted was 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.

"In the tangled corridors of a cluttered mind, epilepsy's lightning strikes."