Research: Journals
The Journal
Past Issues
28.1
Fleda Brown
Anatomy of a SeizureOntogeny
Probably when my mother carried the blue-knitted bundle of my brother through our door for the first time, he was already brain-damaged. I don't know. It was like my parents not to have bothered to help my sister and me understand what little they did know. My father says now that he worried from the beginning. Even in the womb, he says, Mark seemed to hold very still, then jerk unnaturally, as if he were having seizures. But then, my father has always lived within his own inexplicable womb of worry. It is possible my mother's bad case of German measles when she was three months pregnant caused Mark to be born retarded--no one knew back then what damage German measles could wreak. It's remotely possible, however, that he was bitten by a mosquito when he was about three months old and caught encephalitis, with its high fever, which damaged his brain. "Your mother naturally prefers to believe this," my father would say, with his frightening way of objectifying feelings. No matter. They did what had to be done, changed diapers, cleaned up spills.
Anxiety I
What I remember is as vague and fuzzed with anxiety as the rest of my childhood. I was nine when Mark was born; my sister Melinda was six. Already we had moved from Columbia, Missouri, to Middlebury, Vermont, where my grandfather had pulled strings to get his eldest son his first academic job. Then, when it appeared the college didn't want to keep him, we moved to Akron, Ohio, for the same purpose, and when that failed, back to Columbia, where my father reluctantly finished up course work toward a Ph.D. in economics. We lived in his parents' house while his economist father was off lecturing around the country. My mother's parents lived next door: a study in contrarieties, the academic and the businessman. When my father proved to be difficult, childlike, and socially impossible, my mother's parents stiffened against him, but with as much Christian grace as they could muster.
All of this seeped under my skin, started a lifelong war inside me. Nana would invite my sister and me over in the afternoons and use something called "Baby Touch" on our legs, to get the first signs of dark hair off. "Sandpapering your legs," my father would say, furious. She wanted us to be ladies; my father wanted....well, I don't know that he wanted anything but to go hiking, sailing, and flying kites. And sex with my mother. My mother wanted....well, her wants were pretty simple: a hot fudge sundae, a new vacuum cleaner, a little approval. All she got was a mother who frowned at the life her daughter had let herself in for, and pursed her lips at her daughter's awkwardness, her inability to sew or cook creatively. And she got a husband who mostly reacted, who made as few decisions as possible. Let her ask him to change his shirt, and he flew into a childish rage. Rage was his middle name. But when he wanted sex, he was all over her, purring. She naturally pushed away. More fights.
Description
Into this edginess, Mark was born, the third child, the only boy. I only remember the questions, the budding of a new kind of tension, his diarrhea, the dirty diapers over and over, the beginning of a life of diapers. Mark started out a handsome child, blond and blue-eyed, fine bone structure. His thin body seemed intended to be strong. Until he was two or three, it wasn't immediately obvious to look at him that he was retarded. At least not much. I can't remember. Until the last years, except when he was having seizures, his blue eyes sparked with what seemed like the possibility of intelligence. I think he would have been very smart. As he grew, the anti-seizure drugs made his gums swollen and red. His lips got fat from the pummeling they took when he had seizures. His chin and forehead became as scarred as a prizefighter's, his teeth chipped. His head seemed gradually to grow too large, the way it leaned to one side, bobbling on his weakening, thin neck.
He scooted around in a walker until he was maybe three, then he walked like a toddler, on his toes, his feet unable to lie flat. Gradually, his wrists also drew up, his fingers didn't want to uncurl. He was able to walk until he was fourteen. He got a bad case of the flu, I think it was, and when he recovered, he'd lost so much strength in his legs that he couldn't walk anymore. He spent the rest of his life propped up on the couch, or flat in bed.
Anxiety II
No one knew when Marks spells would come, only that they would. They were likely to come on two or three times a week. It could happen at breakfast when he was sitting at his high chair, his long legs dangling below the leg rest. It could happen on a long, hot car trip to Michigan. For the few years he was potty-trained, it could happen when he was sitting on the toilet, so he had to be held, in case he slammed suddenly forward. His seizures stood for my own private anxieties, my family's anxieties. Something was always about to happen, and it wasn't good. Something was going to break down, money would be gone, someone was going to get strep throat, my parents were going to fight, my mother was going to lie on the bed and cry, my father was going to rant.
To Seize
To take possession of, to arrest, to confiscate, to grasp. Beginning with blankness in the eye, a stillness, a kind of aura you could sense, a slight whitening of the skin. This was all so quick, but still, my parents would say, "Markie's having a spell," before it happened. Actually, it was already in process, inevitable, the electrical storm begun. All his muscles would suddenly be strung tight; he would lurch forward from the waist, throw his head down, throw his arms out in front of him. He would be rigid enough to break. He would barely seem to breathe, his eyes rolled up in his head, his mouth open and drooling. If there happened to be anything in front of him, he would slam down on it as hard as possible. He would bleed. We would hold his head; we would put a cold towel on his forehead. We would wipe the saliva from his mouth and chin. He would hold his position, quivering with rigidity for minute after minute. "My God, I don't see how he can keep that up," my father would say, chewing on his tongue. There would be a hopeless desperation, and a kind of ironic distance, a survival distance. My mother would be the one to stroke with the towel, speaking softly to him over and over. She would almost be crying, but not--the terrible not, the not that wanders in pain's wilderness and has no one to tell. Mark appeared to hear nothing.
Where was I when he seized? Anywhere, nowhere, wetting the towel, holding his head, or in my room trying to get through my algebra with the leftover parts of my brain.
Did the seizures hurt? Possibly. Sometimes he moaned as if in pain. Sometimes he whimpered. Gradually, he would begin to soften, gradually to collapse. Color would return to his lips. He would be exhausted, but calm, his circuits blown, like a person after electroshock, I imagine. He would sit quietly for a while, and it would be an hour or so before he was himself again.
Voice
There's a quality of voice that carries the weight of awareness within it. It's rich, steady, resonant. Actors can mimic it, but it takes a full and conscious life to have it. There's the thin head voice of the afraid-and-afraid-to-reveal-it; there's the breathiness of the utterly held back; there's the loud frontal voice, skilled at argument, that uses the body like a weapon at the service of the mind. The most unnerving voice, though, shoots upward from the animal center, the body crying out in its own language while the mind remains asleep. Mark would cry out now and then, a sudden bleat--the tone of which was pain, delight, frustration, or simply assertion of being--but unalloyed, bypassing the cerebral cortex, as if it emanated from the ragged ingredients of the soul before they figured out how to merge. The precious few times we ate in restaurants, my father would carry him in, a gangly, half-grown boy. He would be fastened into a booster seat, his bib tied. Suddenly he would call out to the universe as if he and it alone understood each other, a raven's cry, a beacon. How easily I disappeared, then, moving through the vacuum that would have been shame, had I not sucked all the life out of it. At night, too: a wail, a screech, a reminder of how dearly silence is bought, how quickly it can be taken away. As his voice deepened, it came up from a cave I imagined as dark, dank, full of all his slow, sodden years.
Treatment
First there was only phenobarbital, before it began to lose its effectiveness. Then dialantin, which never worked as well. And celontin, which made him seriously depressed, crying, tense, so that was stopped quickly. Others I can't remember, all ground up with mortar and pestle and mixed in his oatmeal or mashed vegetables. Sometimes, when a medicine was working less well, or when doctors were experimenting with a new one, he would have grand mal seizure after seizure. He would fling himself over and over into his own abyss, gasping for breath.
Now there's surgery, a bisection of the brain that disconnects the cerebral hemispheres, which can be performed on people whose seizures can't be controlled by drugs. Exactly the right metaphor, it seems to me: sever connections; compartmentalize the suffering; break it down into its component parts; don't let the excitatory neurotransmitters broadcast all over the place and overpower the inhibitory ones; don't let the dendrites react to what the axons are shouting. This, then that--each aspect completed and coming to rest within itself, not whipping on the others to a frenzy. It's a kind of enlightenment.
Iron Curtain
The seizure trembled at the center of our existence. It was the meaning of family: our concerted alertness to the helplessless in our midst, the vulnerable core of each of us, exposed--the bedraggled unloveliness we suspected lay at the heart of each of us--our anger, our selfish desire for this all to go away. We lurched from day to day inside the borders of necessity. My parents never looked up long enough to see what help there might have been for his care, for his expenses, until several years after I left home.
When he turned twenty-one a social worker came to the house and explained to them the possibilities. As a child, I hardly knew there was a world out there. When Mark was born, it was 1953. Ike was President, the Beats were beginning their underground surge against the man in the gray flannel suit. Nuclear bombs were being tested. Guatemala was invaded to "liberate" the people and to fend off communism.
Communism loomed as the great world seizure, ready to make its move at any moment. America's tension may have infiltrated our own, but how could I know?
Priests
If the seizure was the center of our existence, doctors were its priests, Dr. Patrick in particular--young, handsome, and sympathetic. My mother needed someone to notice her, a surrogate parent, ten or fifteen minutes of undivided attention in a small room. My father needed science, a cool eye, a dispassionate physician's assessment, to distance himself. Dr. Patrick was not inclined, however, to offer his prediction of the worst, and perhaps we were all grateful. We needed and needed, but what we needed wasn't exactly clear. We needed--if I can see from this distance what it was--a few medical words embedded in ongoing Godlike concern. We didn't want him to forget about us, to let us slip from his everlasting presence. We were taken to see Dr. Patrick at the slightest provocation, and we were sick a lot: earaches, colds, flu, sinus infections. The delivery car from Collier's Drug Store pulled up in front of our house several times a week. When I wasn't sick, I invented an ailment or exaggerated its severity. Oddly, perhaps, I wanted to stay home from school. The tightly self-absorbed system of our household was more familiar, more comfortable than the outside world. Dr. Patrick represented the blessing of that outside world on our complexities, an omniscient understanding.
Potty Training
For the infant-fold diaper, one doubles the entire length of cloth, ending up with a tight little triangle. Then, as the child grows, one begins the initial fold not at the halfway mark, but only one-third down the rectangle, and the corners are not brought so closely together, leaving more room for the legs. Soiled diapers are rinsed in the toilet, flushing and swishing. They're wrung out and stored in a plastic bucket. Each time the lid is opened, the ammonia smell jolts into the room, stronger as the child grows older. Then, just when the whole process begins to seem tedious and awful, there's potty training. Even for Mark, after a long while. For several years, before he became weaker and couldn't get out of bed, he wore training pants. But when he couldn't get up any longer, he wore several diapers at once, not folded at all, but flattened out and tucked down in the front. Safety pins would get rusty and dull from urine and would have to be stroked across a bar of soap to get them through the layers of diaper. He would need glycerine suppositories every day to have a bowel movement: the house would fill with the odor. By this time, he was fully developed and had to be washed carefully each time, his pubic hair kept clean and powdered.
Normal
I was beginning to understand something about normality. Normality wasn't normal. It couldn't be. If normality were normal, everybody would leave it alone. They could sit back and let normality manifest itself.
So says the main character, a hermaphrodite, in Jeffrey Eugenides' novel Middlesex that won the Pulitzer Prize this year. Ah, those of us who grow up in "abnormal" homes are the ones to consult when it comes to worrying normality to death! We know exactly what it is, where it is to be found--at Little League games, Dad grilling on the patio, Mom headed off to bridge club--images always receding on our horizon. We believe with our whole hearts in Saturday Evening Post covers, in Ozzie and Harriet, in the rest of the world--the not-us--living their lives within a halo of society's approval.
Missy was born in 1958. I was fourteen, Melinda eleven, Mark five. Missy never knew Mark as a smiling little blonde boy, babbling his words. She doesn't remember him walking. To her, he was a large, thin, almost-man lying in a hospital bed in her parents' room, emitting random eerie cries, terrible smells. Our parents--isolated people, afraid of the outside world themselves--couldn't help her find ways to explain to her friends. Her isolation fed the dream of normality, as it did for all of us, and the horror of being stranded outside that dream. She told no one about her brother. She avoided bringing friends home. On the rare occasion when she did, Mark would suddenly cry out from the bedroom, and all would be lost. Once, on a camping trip to Kentucky Lake long after Melinda and I had left home, Missy was put in charge of watching Mark, who lay helplessly in the tent, while our parents went for a sail. Some of her new campground friends came by and asked her out on their boat. She went. She was only twelve. Having to admit to the existence of her monstrous brother in the tent was more awful than the consequences of leaving him alone.
Baby Talk
While we were living in Arkansas and Mark was seven or eight, his teacher Mrs. Laverty reported that she'd catalogued three hundred words he could say. A vast number. He was potty-trained and could say that many words. He could run with the neighborhood children, his own head bobbling far above them, lurching and laughing. "Tee-dah," he called me. There was a kind of hope, a belief in progress in the face of certain collapse. The doctors knew what they knew--for the duration of each seizure, oxygen to the brain is cut off, gradually destroying more brain cells. What was our hope made of? Of one good day, of word after word, for the record. I am coming home from school. Mark is on the couch. He has had a seizure but is now calm and beginning to perk up. His face brightens when I walk in. "Tee-dah," he calls out, and lurches toward me. I love him with the same old miserable love that's followed me since. Things can't be fixed. Nothing can be nice, or clean. I don't know exactly who I am, yet I am asked to be this person, this "Tee-dah," and so I am, the roiling of my mind quieted for a moment as I hold him and kiss the top of his head.
I can see my mother in his latter years, before he went to the nursing home, sitting beside his hospital bed in their bedroom. She keeps a tall stool with a back on it next to the bed, to save her own back. She's talking baby talk to him. She's worn out with trying to shift his weight enough to change his diaper, to clean him up. She's using the voice, the baby talk he knows. She's stuck there; he's stuck there; we're all stuck, seized, gripped. Those of us who can, pull loose and get out. Those who can't, stay with the sweet language of the past, the language that once had meant beginnings.
Nourishment
It doesn't matter how old he is, here. He's fastened in his scratched, wooden high chair, tied with a rag to hold him more securely. He is being watched carefully for signs of seizure. The high chair, actually, is a good place for it, if there's enough advance warning to get a pad on the tray, because he's protected against falling. My mother's on one side of him, my father's on the other, to quickly grab his head if he jerks forward. On his high chair tray are bits of pork chop and green beans, cut small as beads to prevent choking. He picks up a handful and shoves them in. Some miss. He throws some of them. He's fed some of them. He likes it when we're all at the table. He babbles. We are not unhappy. Even my father, who has ducked his head and repeated the prayer my mother begs him to say before meals, even though he believes in science instead. "Bless this food to our use and us to thy love and service amen ," he's intoned for her, with his flat, ironic edge. My mother asks for the apple sauce, content enough. What is happiness but the nest we make for ourselves out of the tangle of troubles?
Thelma
Thelma Smith is hired to help my mother when Mark gets too heavy to handle. Thelma, barely literate, lives in a miserable hovel on Olive Street with her drunken, abusive husband and her children, including one retarded son who roams the streets, dirty, whooping and mumbling. Sometimes, she reports, one of her children is bitten by a rat while sleeping. Thelma's husband won't let her take birth control pills, so she hides them at my parents' house and takes one there each day. She and my mother drink Pepsi and watch soap operas in the afternoons when Thelma is supposed to be folding diapers or washing clothes. "Why don't you make her do what you pay her for?" we ask over and over, but they just keep sitting, two women in silent rebellion.
Rescue
(1) Mark is on the sailboat, happily dangling his hand in the water. He falls overboard.
My father dives in after him, grabs his leg. My father's leg catches on a rope. They dangle there for a moment, both of them underwater. The rest of us are watching from the dock. My father makes a superhuman lunge upward. They're both saved.
(2) Mark is lying in a tent at Kentucky Lake. He is overheated, burning up with fever.
My father carries him to the water and swabs him over and over with a wet diaper. He is okay.
(3) He is in the nursing home. They call to say he's very ill, that he may not live. My father suggests that they give him intravenous fluids, which revive him so that he lives a while longer. My father writes me, "It is unfortunate that we prolonged his misery as long as we did." He says, "I recall, at the nursing home, there was one young boy who was almost totally a vegetable, and could do nothing but lie on the floor and salivate. Why we insist on keeping such people alive is more than I am able to understand. If 'God' intends them to die, how can we interfere with his divine plan? But if 'God' intends someone to live, and we help him to die, then we are guilty of the gravest sin and probably will have to spend an eternity in a lake of fire, according to some idiots like Saint John, the author of 'Revelation'."
Consolations
We're coming for Christmas. We've driven eight hours. We turn onto South Garth, three houses from Nana's, but Mark's about to have a seizure. My mother says we should drive around for a while so as not to upset her parents. And so we do, and finally he has the seizure, and my mother pats his face with a wet cloth until he eases. We drive up the driveway. My mother makes my father honk, as if we had just arrived, as if we're all excited.
"They have a poor afflicted boy," Granddaddy often says to their friends, borrowing that evangelist word, taking our lives out of our own hands, as if Mark is a visitation upon us.
Nana sits in her chair, watching the Lennon sisters on the Lawrence Welk Show. She says she would like my sister and me to be like them. They're singing about love, but their harmonies sound to me like humming about nothing, the kind you do when your mind's on something else, or if you were being forced to hum at gunpoint. My Uncle Bob's perfect family is here for Christmas, too, with their perfect, fiercely Christian children. They tell us secretly that our father is going to hell because he's not a Christian. Mark is sitting on the ottoman in front of Nana. She takes his head between her hands. She concentrates hard, closing her eyes. She squeezes and says, "Be Healed," twice. We hear her say it. I want to kill the Lennon sisters, smash their TV faces with my foot. I want to raise the ugly, bitter, and dark world in front of her and make her eat it, bite by bite. I want her to get diarrhea smeared on her hands, to wipe up blood, to open her eyes, to know who we are, who I am, with my hard knot of love and rage. Anger forms a glorious seawall against my misery.
Indications
Mark is lying in his casket, in his pajamas, a full-grown man, still soft-skinned and no whiter now in death than in the last years of his life. He's more carefully shaved than usual. There are no more than a dozen people here: a former teacher, a nursing home staff person, a few friends of my parents, and my sisters and me. Mark's been completely lost so many years that the minister can muster no anecdotes for his sermon, no personal comments, only clichés. So I am left with my own feelings, whatever it is I feel, mine alone, and with Mark alone, inscrutable for all his twenty-four years, mirror of my best feelings and my worst: Dear child I have held and comforted, needing comfort myself; dear child I have hated, hating myself; dear child I have cheered on with every new word, pushing myself to achieve, achieve, not to waste a minute of my life.
Now almost thirty years later, my sorrow still feels private, my personal relationship with it as silent and respectful as that moment in which I sat in front of the plain coffin, closed at last. Sorrow remains within me like a closed box, the contents I know so well there's no need to keep checking. Still, sometimes one wants--one deliberately opens the past and lifts out, one by one, its small, radiant objects. One suddenly thinks of sorrow with fondness, the way it keeps on being itself, no matter how it's been anatomized, analyzed. Sorrow is easy to love, actually, the way it asserts its own clear presence that one can't dispute, can't wish away, for the way it insists on being included, along with everything else.
