“Just Keep Reading”

A story of reading epilepsy

How would you write if you could not read? Image Crew: OpenSourceBooks

A memoir by Faith Potts

One

The air is crisp, new. Cool metal pressed against my right arm – I no longer feel sand coating my calves, flying from my sister’s hefty shovel to meet my sunburnt legs – I am dreaming , I speculate, delightedly. Dreaming!

My jaw tightens when I hear the rampant voices around me, ferocious commands to do this or that, Push up! or Careful there! One of them violently clicks his tongue.

Dreaming! The booming whispers of men linger above me. Dry, stiff air. A sweaty finger traces my bare shoulder. I hear wheels rolling, a door slamming. The sobs of my mother are unmistakable. ( Nightmare! )

“She’s awake,” he mutters. He is a rigid man, eyes scathing and lips tight. He clutches the edge of the stretcher.

My mother approaches me with a fretful stare and rosy, tear-stained cheeks. Men are asking, asking this and that, but I cannot hear them over the aching sobs. The white light above me pierces my eyes with its clarity.

Calm down, they are muttering. I cannot tell them apart. In through the nose, out through the mouth. He grabs my leg but my body won’t stop thrashing, almost mechanically – and I am wailing with each agonized jolt, each spiteful breath.

I beg of them to tell me – What happened, please! – and all he does is stare. A few words escape my mother’s mouth: shaking, collapse

Amid my loss of control, I try to answer the man’s questions. Have you been drinking enough water? (Yes!) Tried any drugs? (No!) Taking medications? (Only my antidepressants!)

And is this the first time you had a seizure?

Everything goes numb. I find myself saying yes. Yes! I had a seizure. My mouth, it would not stop shaking. I clenched my jaw and read my book, and it was no longer enough.

Confidence overwhelms me. In class, reading! I know the answer! With the rise of a self-assured hand and the echoing shock of my own assertive words, I tell him.

I am trying to read but I am frustrated. I am reading each word but they are mere letters strung together. I trail back, again and again, to seek meaning. It is like a bee that keeps buzzing in your ear – he leaves for a moment, and you think you are safe now, and then he is back in full force, he vanishes again, then a final return, humming and demanding and this time he just might sting you. My mouth loses control and along with the loss comes the loss of meaning, loss of words, loss of mind.

Reading, I tell him. I was reading for around an hour and then it happened. Again: Don’t stop, just keep reading.

***

Two

“What are you reading?” he asked brusquely, peering past my reclusive pose. Hunched over, I lay so my forehead grazed two shaky knees, unmoved, sinking into the mattress with a book tangled between my limbs. He stepped past the doorway and I saw him hovering over me. With an outstretched arm and vast eyes, he smiled.

“It’s The Republic, ”I muttered, and feared that my eye had twitched, or that perhaps he had noticed the awful way my top lip curls up as I speak, because, for a moment, he was silent and I was still.

I had decided to take a day to myself, and my psychiatrist supported the idea. It was difficult being surrounded by countless people – people whom I had expected to be at least a bit more like me – at all times, with very little means of escape. I craved the sound of silence and the smell of a book. Please, I begged the universe, don’t let my overly excitable roommate return until lights-out. Or at least not until dinner.

The Republic,” he said quietly. “I know I’ve heard of that.”

I bit my lip and glanced down at the next page, its letters dancing about my brain. For a moment I felt as if I were reading the words aloud because my jaw seemed to move along with their meaning. I quickly shut my eyes.

“Well, aren’t you gonna tell me who it’s by?” the boy asked, and right as he did I noticed how tall and confident he seemed – yet still I sensed that he was sort of confused, sheepish, maybe.

“Plato,” I found myself saying, a bit louder than I had expected.

“Plato!” he says. “Wow. I could never read that. I mean, I could, but it wouldn’t really sink in, if you know what I mean.” He pauses. “I wish it would, though.”

I pulled myself up in bed and sat. I wondered why he was there if he was depressed too, if he allowed his body to harm itself the way I did, if he too held a handful of pills in one hand and contemplated whether or not he should take one, the dose he was prescribed, or all of them.

“I can read you some, if you’d like,” I said quickly. I turned to the best page I had read thus far and read: “Behold! human beings living in a underground cave, which has a mouth open towards the light and reaching all along the cave; here they have been from their childhood, and have their legs and necks chained so that they cannot move, and can only see before them, being prevented by the chains from turning round their heads. Above and behind them a fire is blazing at a distance, and between the fire and the prisoners there is a raised way; and you will see, if you look, a low wall built along the way, like the screen which marionette players have in front of them, over which they sh-a- ouai –” My lip trembled as I wondered what sort of word had just escaped me, but it was no word – it was out of my control.

“Are you alright?” he asked me, taking a few steps closer.

I didn’t need to worry about answering him because, right then, Sravya, one of the counselors, told him to step out: it was against the rules to step inside others’ rooms.

He smiled a bit and began to walk out, but not before asking, “Are you sure you’re alright?”

I mustered up the strength to say I’m fine. “It’s nothing, just my anxiety.”

***

Three

An incomplete list of mentally ill writers with whom I would love to have a conversation:

Fyodor Dostoevsky

“The really great men must, I think, have great sadness on Earth.”

Leo Tolstoy

“These joys were so trifling as to be as imperceptible as grains of gold among the sand, and in moments of depression she saw nothing but the sand; yet there were brighter moments when she felt nothing but joy, saw nothing but the gold.”

Sylvia Plath

“If I didn’t think, I’d be much happier.”

Franz Kafka

“I cannot make you understand. I cannot make anyone understand what is happening inside me. I cannot even explain it to myself.”

Ernest Hemingway

“There is nothing to writing. All you have to do is sit down at a typewriter and bleed.”

Rainer Maria Rilke

“Behind my face stretches a world / no more lived in, perhaps, than the moon. / But the others leave no feeling alone / and all their words are inhabited. / The things I brought back with me / seem strange here and out of place. / In their own land they moved like animals, / but here they hold their breath in shame.”

Virginia Woolf

How shall I break up this numbness which discredits my sympathetic heart?”

***

Four

Last week I read Virginia Woolf in my World Literature class. An impassioned writer and feminist, she claimed that, in the sixteenth century, any woman with the gift of writing “ would certainly have gone crazed, shot herself, or ended her days in some lonely cottage outside the village.”

In 2017 I attended a Young Writers Workshop. Looking back at my essay, I wrote, “ I like to pretend that, if I cease to write, I will cease to exist.”

Perhaps this is exactly what Woolf was getting at. Perhaps a creative woman not only cannot bear the confinement of her own expression but also theoretically loses her existence, her presence, when restricted in such a way.

Because the very thing that makes her her, her passion and authenticity, is perpetually unseen.

It is only a matter of time before her mind will be snatched away by the hands of time, and then her will, and lastly her life. She will die a woman no different from the rest, no more memorable, and after however long, she will sink into oblivion.

But, in a way, she really never came into existence at all, because her soul was limited, malnourished and incapacitated.

I am lucky that I have the freedom to express. Even if epilepsy gets in the way, I know that I have countless teachers, parents, and friends who encourage me to write and offer a platform for me to share my thoughts. I am lucky that I do not have any external forces stopping me – but I wonder if it is worse to have the outside world overlooking and berating your creativity, or to have some strange force, deep inside of you yet completely foreign, completely uninvited, constantly clashing with your very instinct to do what you love. Some days I wake up with a firm conviction that I must write or perhaps read, and once I do I grow frustrated from the electricity in my brain that is impossible to subdue, can’t be merciful or lenient for a few hours, because it is a part of me. I have reading epilepsy.

What is that? The Epilepsy Foundation describes reading epilipsy as:

Brief myoclonic jerks mainly restricted to the masticatory, oral, and perioral muscles, described as clicking sensations. They occur a few min to hours after reading. If the patient performs continuous reading despite jaw jerks, these may become violent and spread to trunk and limb muscles before generalized tonic-clonic seizures (GTCS) develop.

While reading, my jaw begins to jerk back and forth. It quickly gets worse and worse, and if I keep going, I will have a tonic-clonic seizure – just as I did on the beach. In most cases writing and sustained speaking will cause similar effects. The average age of onset is fifteen and it is supposedly caused by “a diffusely hyperexcitable network subserving reading.”

Correct me if I’m wrong but I see this as saying that, because reading excites my brain so much, it causes seizures. The process of absorbing each word with an unusual – nonetheless, impassioned – intensity guides my indulgent brain into a state of chaos. Because it is so stimulating, and so invariably captivating, I can no longer allow such stimulation unless I want to risk having a seizure, which might leave me feeling drained for weeks. I can’t help but wonder how this makes sense if a woman who loves to dance can so gracefully move her feet, and an eager young artist can easily hold his paintbrush with a steady hand, but I, with an unwavering propensity to read and write, cannot. These just seem like basics to us. We underestimate them. We take them for granted.

I think that I will continue to read and write every day. Actually, I am fairly certain. My greatest reassurance is what my high school English teacher wrote in my letter of

recommendation: “ Faith is a true writer. If stranded on a desert island, she would continue to write. She will always write.”

***

Five

On a rainy Saturday evening I hid under the covers with a flashlight and a notebook. In my mother’s words it was late, but to me it was now, no less of a moment than any other time of day – and now was always the time to write. I had begun to search for a place. It was loud downstairs. The lights upstairs were out, but it was quiet – other than the stark diversion of my sisters’ breathing, which was rather quiet up until the faint yet ringing whisper of the exhale, and even this was enough to somewhat obstruct the flow of my words from soul to paper – and so that was where I stayed.

My phone’s blinding flashlight luckily faced away from me and towards the green notebook, my mother had just bought me for my freshman year of high school, illuminating the black ink that had just begin to dry. I sat back to reread my half-conscious scribbles with a harsh cloud of self-criticism looming over me.

First sentence: good. Second sentence: damn, I ruined it already. Third: too many words. So on, and so on, until I felt a click. Click click click, like a T.V. remote – except I was not pressing these buttons, and they were not what I wanted. I clenched my jaw and winced. I had already visited the doctor: it is just my anxiety! Nervous tics! I heaved deep breaths that mercilessly escaped me with each click of my jaw. The words were like snakes hissing at me. Moments later my notebook was closed as I lay back in my dark room. I longed for my youth, for words like water, naturally spilling into my heart with ease, for friends’ emails read lightheartedly to myself, and for rainy evenings with a book to put me to rest.

***

Six

To: Faith Potts
From: Eduardo Garcia, MD
Received: 9/11/2018  1:16 PM EDT

Dear Faith, this is to inform you that your EEG showed abnormalities consistent with a generalized seizure disorder. As such, I would recommend starting a seizure medication. Levetiracetam (Keppra) is one of the most widely used broad spectrum antiepileptic drugs. It has a tolerable side effect profile. Common side effects include drowsiness, dizziness, and irritability. All seizure medications carry a black box warning about potential suicidal ideation, which is exceedingly rare (15:07 and 15:24 associated with push button activations).

Sincerely,
Dr. Garcia

***

Seven

The owner of the cloak was a young man, also twenty-six or twenty-seven years old, above the average in height with very fair, thick hair, with sunken cheeks, and a thin, pointed, almost white beard. His eyes were large, blue and dreamy; there was something gentle though heavy-looking in their expression, something of that strange look from which some people can recognize at the first glance a victim of epilepsy.

-The Idiot by Fyodor Dostoevsky

Dostoevsky had a very rare form of epilepsy called ecstatic epilepsy. Before he had a seizure, he was overcome with a feeling of euphoria accompanied by pleasurable physical sensations (e.g. “like bubbles rising in the head,” “feeling of warmth in the whole body”). The experience is surreal, and depends on “power of introspection, intelligence and vocabulary.”

Some days I wonder if I suffer from something similar. I wonder if reading epilepsy may be related to ecstatic epilepsy – interestingly, both are located in the temporal lobe – because, on the day I had a seizure, I experienced an unprecedented drive, an unshakable persistence, and I would not stop reading. The story was called “Tooth and Claw” by T.C. Boyle. It was a sort of unearthly story that followed a man who is rewarded a strange creature after winning a game at the bar. He then has to bring the creature home to his small apartment and somehow find a way to take care of it – even when it tears apart his home.

As I read, something came over me. If I were to explain it I would say I felt as if I could accomplish anything if I just finished that one story, as if its ending would somehow liberate me from whatever it was that was confining me.

I lost consciousness while reading the last paragraph of the story. I never finished reading it, but I like to think that it ended with the man finally learning to truly care for the animal – despite its disturbance – and, along the way, building a new life around it, straight from the ground.

1 Comment

  1. Faith, this is Mrs. Patt popple. I just finished reading your amazingly intimate piece. Your struggles are what make you more than simply a young woman with an affliction. The’ve shaped you into a package with a giant bow on top, gifting all of us with insight and the Joy’s of self awareness. Thank you.

Leave a Reply

Your email address will not be published.


*