The Tale of an Epileptic

By Jonah Smith-Bartlett

On the third day of the flu, we are desperate to remember what it was once like to feel healthy. We wonder what it will take—what medications, sleep patterns, regimen of tea drinking, baritone voodoo chants—to return to that former place of normalcy.

Despite not being listed on any overdramatically self-diagnostic website, the first effect of epilepsy is a permanent farewell to normalcy.

In the grand scheme of things, how and why it started is hardly relevant. The only reason to mention it—that I lost full control of the left side of my body, that I felt my fingers breaking, that I slipped into hopelessness and quickly, prayerlessly prepared for death that turned out to be mere, ordinary unconsciousness—is to acknowledge the oft-hidden nobility of my friends. The one who held me in the parking lot despite his own fear. The one who called the ambulance with little understanding of what was happening with all the shouts around him. The one who sat by my bedside and helped me kneel in gratitude at the crossroads of mortality. These and others, parents and nurses alike, assured me that all would be all right. Of course all assurances, kind and honest, fell short. It would never be all right. It just got a bit better.

On the one hand was the girl who sat with me at the university’s Christmas service. Lacking control of my body, but feeling less pain, she denied me the comfort of my self-consciousness for the uncomfortable notion of her love. Screw them, she said from our front pew. Let them stare at the twitches. Screw them. Hardly the usual words shared at Christmas. On the other hand were the poor bastards in the neurologist’s waiting room. Half-paralytics and men in wheelchairs—their loyal wives wiping the drool from their numb, useless chins. A better person would have cared about them, perhaps even whispered words of encouragement through clenched teeth. I hated all of them as they mocked my present state of deep doubt and clumsily framed the window through which I saw my likely future.

Heavy medication and last-ditch efforts before the scalpel touched the brain eventually made the twitching stop. Friends noticed over a bottle of Scotch that with clumsy alchemy had become champagne. Oh, the celebration! Let the side effects come. The loss of memory. The loss of balance. The loss of energy. I was a sloth in man’s clothing. The loss of control over anger. There were bar fights and I lost even when it didn’t come to blows. Gay? Are you gay? Left field misplaced bigotry. The popped-collar University of Virginia alumnus boy at the bar. Forget it, said the same friend who called the ambulance. Little understanding of my transformation then and now. Of course he was right. Dear boy at the bar, the one with the popped collar—I’m not gay. I’m epileptic.

We, you the reader and I the confessor, wouldn’t have shared a real conversation for the last twelve years. That is, if we can agree, that a real conversation means that when you speak—about something trivial, a short joke, a stumble down memory lane, the deepest pains of your soul—that I have fully listened. Not if it means that I would have stood at complete and obedient attention. I request that I am exempt from blame. My thoughts must always focus on the tics of my body, even a languished watchfulness. All stories, especially the most joyous, are always tinged with my fear.

This doesn’t come close to the anxiety that rattles me each night in bed. That is where the seizures most often take control, the ones that defy the medication and the self-care. Dreams are laden with exaggerations of regression to the infancy of the disease. Quiet moments become loud in the cacophony of neurons firing back and forth inside my head. And every once in a while I twist up again, the muscles tearing themselves in two, the monster really returning. And I curse. And my wife is there to comfort. Gay? Are you gay? No. I am married to this beautiful woman. And I’m epileptic.

The next bottle of Scotch, now enjoyed ten years ago, comes with an invitation from the professor, an old and loving friend, across the table. Come study theologians. Names like Rauschenbusch, Niebuhr, and King. Not the shallow intellectuals, but the ones immersed in the suffering of the world. Tectonic suffering of economics and hatred. All their treatises are plainly free of my micro life. None of their faithful thoughts are twisted by a shaking pen.

And each delved into the historical, moral life of Christ and the sacrificial death and the impossible, yet invariably claimed real, corporeal resurrection. Each delved into the ways in which the man-god welcomed the strife composed by the disciples of the temple corporations and the puppets of the empire. None mentioned the truth to which I seemed to be the key holder. Christ’s brain, too, held the mystery of torment within it. The same neurons that allowed for the miracles—water into wine, walking on the stormy sea, the healing, again and again, of the other sick—jolted the wrong way too. The muscles tensed and tore as his left arm stretched out and his fingers cracked. Then the right. Jesus, who made the lame walk, lost control over his legs. Jesus, who granted dignity to the outcast, wept as his neck hung low. Fear seized him and then death. His own brain crucified him. Of course, this was all part of God’s plan. My condition is deified, or so my story goes.

We who have neurologists naturally become neurotic. We have lost trust in ourselves. We have lost so much power—power that even a child unknowingly and likely uncaringly wields—that we have to aggressively force ourselves into absurd places of forward-thinking agency. And so we arrive at the airport hours before the earliest flight. And so we buy rental car insurance. And so we keep the doctor’s personal number in our cell phone. And so we always sleep on the same side of the bed, so as to know which way to carefully roll our numbing bodies. And so we hedge our bets. And so we play it safe. Safety, of course, is a fickle friend. So, with the addicted, the abused, and the destroyed, so say we all.

It seems slightly melodramatic. With the addicted, the abused, and the destroyed. And I have always had a tendency to romanticize the oppressed. The gutter was attractive. Despite the sounds of the drills, knocks, hums, buzzes, beeps, rattles, and bells of the MRI machine, I play the songs of the revolutionaries from Les Miserables in my head, again and again. Do you hear the people sing? Not easily. It is noisy here in my little cocoon. Through a mirror installed above the bridge of my nose, I can see the doctors analyze their machines as they watch my toes tap to the tune. The old fat one and the young one. As young as I am. The student of the antagonist. They speak it kindly over the microphone—Jonah, we need you to remain as still as possible in order for this to work. And I understand. They have other pressing appointments. Other patients in the hall and other people in the world. First dates, old friends, the family. None of us want to be here.

Before the medication took effect, of course, it wasn’t just my toes tapping. They could see how sick I was. The twitching muscles on my chest raced against the beat of the heart beneath them. And that voice. Jonah, we need you to remain as still as possible in order for this to work. Where was their compassion? Where was their civility? I couldn’t obey their commands. I was trying to be a good soldier, wounded as I was. But they saw cases like mine every day. They saw cases worse than mine every day. Their ambivalence set in and then gave way to frustration. Let’s get on with it. Can we get on with it? There’s a dinner getting cold somewhere. There’s a wife who is tired of these long hours. I don’t want to fight anymore. I don’t want to fight. At some point the mechanical noises stop, and they pull me by my ankles out from the machine. Their good-byes are frosty and so are my words of gratitude for their time.

Cat. Chair. Yellow. What I need you to do… Jonah, are you listening? What I need you to do is remember those three words. I’m going to ask you to say them in just a few minutes. It’s a test. Like when I made you walk across the floor toe-to-heel, toe-to-heel. Like when I shined those lights in your eyes. Like when I ran that sharp instrument across your palm. The pain means an absence of numbness. It’s a good thing. Cat. Chair. Yellow.

The small silver lining of my epilepsy is that it’s generally the most interesting thing about me. The inquiries about the ten-year high school reunion came. It’s been forever. What have you been up to? Are you coming to the reunion? We’re holding it at the same place where we had our prom. Isn’t that funny? I offered kind declinations. Certainly, I couldn’t have been unique in that response. The upwardly mobile had no desire to return to this Connecticut working-class town. The school itself, after all, was torn down a few years ago and rebuilt two miles away from the lot where it stood in our good old days. And that was the real temptation, wasn’t it? To see if they had all outgrown those desks, those halls, that whole prison of their adolescence. The building was gone and the people who remained were not their fellow upwardly mobiles. They settled in the native land of their fathers. Their bright lights burned out years ago, if their lights had ever burned at all. What stories would they tell? The stores in the strip mall have changed. The marinara sauce at the Italian place on the square tasted the same now as it did a decade past. Those days—high school—where we sat together in a history class and whispered about the conquests of teenage love all around us… Those days really were the best days of our lives. No one wants to admit that. No, it takes a right amount of mediocrity to attend a high school reunion. I likely had it. But I was epileptic. That was the most interesting thing about me. And I was tired of sharing that story.

I endured a painful seizure one night after Christmas years ago. The aftereffects of my seizures are almost as bad as the horrible experience itself. Headaches. Nausea. Vomiting for hours. I climbed the stairs of my parents’ home. It was a home in which I never lived before the disease came. The institutional memory of this small, welcoming place just outside Atlanta claims that I have always been epileptic. I shared the bad news with my mother and father and nervously accepted their concern. Then I stumbled down the stairs and let my knees touch the cold of the bathroom tile. And I puked.

There were hearty celebrations in the few hours past. My family, their coworkers, a few student vagrants from my father’s school who decided, for one reason or another, to protest spending the holiday around their own kin. Drinks were shared. Stories were shared. All our memories of Christmases long gone. The unwrapped gifts were stacked under the tree. The stockings were empty and laid out across the fireplace. The lights flashed in many colors. Red, blue, pink, green, and

Cat… chair…

Do you remember the third?

No, I don’t.

Cat. Chair. Yellow.

*   *   *

It is who I am. The disease has trumped the natural composition, the one of my earliest memories, and replaced it with a backward and broken evolution. It is from this point that I see that the life behind me is freer than the years ahead. It is from this point where I say in my darker hours, fearing the darkest—I have become used to being useless. It is from this point that I see that the people who love me have become stronger and more vigilant than ever in their compassion, as I dance along the edge of a selfishly self-serving sadness. They always call me back, and eventually I listen.

My first kiss was in seventh grade. We were in a dark movie theater, half watching a panned Nick Nolte movie, and half wondering if we shouldn’t have just gone walking to the candy store at the town’s center instead. I initiated it, and I’m not certain if she liked it, and I am certain that the first kiss did not inspire a second. In the back of her parents’ car, I reached across the seat and placed my hand on top of hers. She shifted her waist a bit at the coldness of the touch that contrasted the heat blowing from the dashboard. But she didn’t move her hand away from mine. I was a curious boy pushing the envelope under the veil of friendship. At some point I would learn that the contents of that envelope were not how right it felt, but how wrong it was—that the victory wasn’t to be in conquest, but in mutuality. Still that body, my body in that moment was mine, and even now, the great world spins on the smallest moments like these.

___

Jonah Smith-Bartlett is an ordained American Baptist minister, living with his wife just outside New York City as a transplant from Oakland, California and Richmond, Virginia.  He loves to write about small-city America and examine how deceptively simple moments in the nation’s history can shatter lives, embolden relationships, and transform the face of a community forever. His favorite authors are John Updike, Graham Greene, and Philip Roth.  In his spare time, he plays the tin whistle and sings in an Irish band. My work was recently published in Gemini Magazine, Sliver of Stone, and 10,000 Tons of Black Ink.  He has upcoming work to be published in Whistling Shade.


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