“The External Me”: Creative Nonfiction by Sue Gale Pace

Raven Chronicles Literary Press nominated 6 poems & prose works for the 2019 Pushcart Prize, XLIV Edition. This is one of the nominated pieces:

I am not a hero nor am I someone who has the energy and drive to overcome any obstacle. I am neither beautiful nor athletic. I’m a decent cook and a terrible pianist. I don’t cheat on my husband or my taxes. I love my children. 

I write fiction and non-fiction and poetry. I’ve been published in Newsweek. My novel can still be found on certain library shelves. I was writer-in-residence for Seattle University’s Creative Writing program. I have taught workshops at national conventions and Young Author conferences.

That is the external me.

Then there is the internal me. She is a woman who sits at the computer trying to remember if she wrote the poem on the screen or if she found it in a literary journal and copied it because she liked it and wanted to study the internal rhythms and external alliteration; a metaphor, perhaps, of her own life. 

I say the words of the poem aloud then analyze the choice of nouns and verbs. It seems like the kind of thing I would write. It seems to fit the world I inhabit. It seems this poem could be one I’ve written and even if it isn’t, I’m usually scrupulous about giving credit to others where credit is due and there is no indication that this is someone else’s poem.

I listen to the whir of the printer then take the single sheet from the tray and walk into the kitchen where my husband is buttering toast. I hand the paper to him. 

“I’m putting together a file of old poems and I can’t remember if I wrote this,” I say. “Have I ever shown it to you?”

He brushes crumbs from his hands, reaches out a pale arm and scans the page. He frowns thoughtfully and hands it back.

“So,” I ask, “did I write it?”

“I don’t know who else could have.”

He is careful of my feelings. He tries to be gentle and humorous and neutral. Neutral is important because I don’t want to feel foolish or stupid. I reread the poem. I mentally delete a word that pops up twice in the second stanza. I move a phrase to a line further down. There is no feeling of familiarity but I can logically deduce these are the images I would choose. These are the rhythms I favor.

I return to my computer and tap the changes into the file that contains the poem and when I press “save” I close my eyes and give myself a pep talk. I am okay. My loss of memory is slight in the total context of life. I have made adjustments and I have compensated. So has my husband. So have my children. But tears sting my eyes. I liked the person I once was—before I lost my inner self to the haze of seizure medications—and I am sad to not have her with me.

A few years ago I sat in my parents’ family room while my father told my mother about his golf game. My father tells a good tale and the story moved smoothly from golf with friends to golf with coworkers to one man in particular. 

“We were on the way to the clubhouse and he had a seizure right there in the parking lot. It was because of his heart medicine and there he was, jerking around like a goddam puppet with all those people staring at him.” Dad shifted uncomfortably in his recliner. “When he finally stopped you could tell from the smell that he’d not only pissed himself but he’d shit himself, too. I felt so sorry for the guy. I don’t think any of us can know just what that moment meant to him.”

“I can,” I said.

“No, Susan. I don’t think any of us can understand what he went through.”

I tried to keep the edge out of my voice. “I’m epileptic, Dad.”

My mother was on the couch, crocheting an afghan. Her voice was almost a whisper. “I read that calling someone epileptic is offensive, like calling them a homo or a retard.”  

I refused to be sidetracked and my own voice instantly filled the room with decades of anger. “I’ve told you both this before. I wasn’t just a dreamy kid who didn’t pay attention. I have temporal lobe epilepsy. The neurologist says I’ve probably had it my whole life. A few years ago it morphed into something worse. I’ve been on medication for grand mal seizures for ten years. I can understand.”

There was confusion on my father’s face, a long pause, then an abrupt nod. I was forty-three years old and my father finally got it. I, too, have lost control of my bowels and jerked around like a goddam puppet. I, too, have been the object of someone’s pity.

I tuck that incident deep into my center. It joins the lost poem. It joins the images and sounds and confusion that, try as I might, I cannot seem to translate into coherent sentences. When I am being whimsical, I picture those lost bits and pieces holding hands and waiting, like frightened and dutiful servants, for the real me to come home.

As a child, I had many, many falls down stairwells, off cliffs and bicycles, and tree branches and beds. Twice, I fell into rushing rivers. Once into a deep, green pond. Often, I crashed my bike. I fell on roller skates. It was attributed to day-dreaming and clumsiness and inattention and naughtiness. As an adult, I was considered funny by my friends, eccentric by my enemies, and imaginative by my husband. Forty years of marriage have proved to me that being seen as imaginative is a gift. 

This “imaginative behavior” became even more pronounced during my third pregnancy. The twitching and hallucinations intensified though the gestation, labor, delivery, and increased again through two years’ worth of nursing my daughter. 

In the middle of all that, I was referred to a neurologist. He was small and quick and inherently skeptical. He read the referral and frowned over gold rimmed glasses. “Why are you here?”

“I keep having these visions, sort of dreamlike, only during the day, and people no one else can see are talking to me.”

“Talking to you? 

“Yes. They yell at me or, sometimes, they ask me questions.”

“And no one else can see these, um, people?”

“No. Just me.”

“And do you answer these questions?”

“Of course not! They aren’t real!”

At which point he scheduled an EEG and a series of head x-rays. A week later he called me. “Well, you don’t have a brain tumor but you do have some hinky EEG patterns in the temporal lobe area pointing to a partial complex seizure disorder.” He sounded excited. “You have no idea how many patients with Schizoaffective Disorder come in with the same presenting symptoms. I’ll send my report to your personal physician but I think it’s best if you don’t take any heavy-duty medications until your pregnancy is resolved.”

By that I assumed he meant everything was to be put on hold until after the delivery. Then put on hold again, for two years, since I had decided to nurse this daughter like I had the other two. It was years before my body was wholly my own again. I walked wherever I needed to go. I lost or misplaced a great deal of time, information and (sadly) money. I twitched and jittered. But I had healthy babies who became, eventually, healthy adults.

I worried about misplacing my children so I began a series of medication trials. It took a while since I was allergic to one and others made me sleep twenty hours a day. Finally, the right one came around. I tolerated it until, like many who suffer seizures, I grew lax and had the mother of all grand mals. It scared me into beginning yet another round of medication tryouts, with a variety of truly dangerous side effects, but I gritted my teeth and kept at it and, bottom line, I have been completely seizure free for over fifteen years. 

I am not the person I was before that first grand mal but, in spite of the side effects of my medication, I have become a reasonable facsimile of my former self. I miss her, though. The brighter me. The quirky me who didn’t have occasional short term memory problems or, at the very least, the one who remembered writing a poem about kites and the tug of dreams against a steady wind of the bland and familiar.

After my father’s golf story, he rose from the recliner, kissed me on the forehead, patted my back in that one-armed fashion of those who are uncomfortable with the expression of emotions, and headed to the den. Driving home that night, I pulled into a Safeway parking lot and tried to sort out the evening. I thought my father was aware of what was happening to me. My mother had stayed with my children as I went through one after another allergic reactions to medications. During family gatherings (Thanksgiving, Easter, summer picnics) I had even shared a couple of poignant and, I hoped, lightly humorous stories about seizures at inconvenient times and places. My father was there, in his recliner, when those stories were told. 

Given all that, how could he have insisted that I wouldn’t be able to understand his coworker’s experience?

I ask that even as I rush to my father’s defense. He isn’t stupid or uneducated. He did what many people do when faced with a painful reality. He denied its existence and, to be honest, my mother joined him there.

In fact, we all rode that horse for a while.

After that conversation with my father—a night I privately refer to as “the unveiling”—my parents reacted to the diagnosis of epilepsy as if it was a temporary condition like the measles or chicken pox—something unpleasant but quickly gotten over. Then they graduated to the idea that it was simply an inconvenient flaw—like left-handedness or color blindness. Something that was an occasional annoyance but certainly, with a little effort, a flaw that could be gotten around.

There are many reasons why it took so long, decades, to diagnose my temporal lobe seizures. I even went to counseling and talked about the rare but confusing hallucinations as if they were dreams. I should have been honest with my counselor but I am someone who always asks, “is this my fault?” first. 

And, honestly, I was quite willing to live with confusion. It was comfortable and, sometimes, entertaining. In fact, my conceit was that these early flights of imagination proved how special I was. I had a family. I was published. People envied me.

And then things changed.

My middle daughter came home to find me on the floor with bruised legs and arms and a cut and bleeding mouth. I was in my office, tapping away at my typewriter (in the days before word processing or computing), and I remember feeling my internal world slip sideways. Apparently, I fell backwards and proceeded to whack myself again and again against both chair and desk until, finally, the seizure subsided. 

No other full-length books have been published. I also quit writing plays. I kept with short stories, though. And poems, personal essays, and shorter non-fiction pieces. I do not tell people why I am concentrating on the shorter stuff. I don’t want flip statements about being in good company because a lot of very talented people had seizures. I don’t want lectures on Dostoyevsky, Tolstoy or even Susan Boyle. I want to concentrate on the over one hundred pieces published in both literary and commercial venues. I want to feel good about my craft, not bad about it.

Over the years, I have not been particularly secretive with my diagnosis but neither have I taken out an ad in the newspaper announcing why there were years when I walked everywhere. I never put down the diagnosis on a job application.

Sometimes I don’t recognize people and I perfected the sentence, “Please tell me your name again, I must confess I am Proper Noun challenged.” The reason I am not terribly forthcoming with my history of seizures is threefold. First, I do not want the looks of pity, however brief. Secondly, I do not want the assurances of friends and family that I am exaggerating. Everyone has lapses, they assure me. I’m making something out of nothing. I should listen to their own stories of forgetfulness and silly mistakes. Why just the other day they forgot to pick up their daughter at soccer, where they parked their car, even the name of their sister-in-law. 

Thirdly, there are the competitive types who want to assure me how truly awful-horrible-terrifying their own life, seizures, marriage, arthritis, parents, kids, exes, job, cancer, neighbors are. In the world, heaven knows, there will always be someone worse off. At the very least, the message goes, I’m a lucky duck and I should be counting my blessings. 

I do count my blessings. My children. My husband. My friends. My family. The fact that I live in this beautiful little corner of the world. I have food and clean clothes and I live in a small but quite serviceable condo. I have health insurance. 

I know I am a lucky duck. I count the good years. I count the good doctors. I count the effective medications. I appreciate having the ability to drive and swim and dance with abandon. I count the laughter and not the tears. 

Over the years, I have read books, blogs, and magazine articles that are profoundly anti-medication. Be your true, artistic self, they urge. Don’t let your mind and creativity become befuddled with the toxins used to control your seizures. 

The thing these anti-medication folks don’t understand is that after that first grand mal seizure I felt that some essential part of me was forever lost and I could not find my way to it or to home, either. I felt like a hollow woman, like a partially built house without furniture or electricity or plumbing. No laughter in that house. No love. No light. Just a roof and an ice cold floor. Just walls and echoes. The hollowness lasted for weeks.

My current medication gives me the illusion of belonging in my body. It gives the woman I used to call myself a place to enter, to sup on bread and good soup and to sleep without the panic that comes of perpetually falling down an elevator shaft.

A few weeks ago, I handed my now-grown daughter the poem that I hoped was mine, and told her I was thinking of writing a personal essay about being someone with epilepsy. “It would be a small essay,” I said, “because I know, objectively speaking, I have it easy.” 

She tilted her head. “What do you mean by that?” 

I told her about my best friend in high school whose son went to college, got a good job doing something with computers, and died during a grand mal episode. He was inconsistent in keeping up his medication regime. A lot of people couldn’t understand why it was so hard for him to simply take the prescribed number of pills.

I could understand, I told my daughter. I tried to let her know how I feared the “hollow woman” but also how I hated not being who I used to be.

My daughter said she remembered clearly that grand mal. She confessed how frightening it was to come home to a mother who was bloodied and disoriented. She was fourteen and it was the first time she had thought about having a parent die. Her voice quavered a bit and she swallowed, hard, before finally saying, “You only talk about what you have lost and not what you have gained.” 

“What have I gained?” I asked.

She talked about growing up with parents who showed up for sports and plays and dance recitals. She talked about having a normal life. She talked about feeling safe, as a child, and not worrying whether one or the other parent would go away, perhaps permanently. She talked about having children of her own and wanting to feel okay when we took them to the playground or the store or hiking. She talked about not always waiting for the other shoe to drop.

“Back then, I didn’t want to think about you having one of those seizures when you crossed the street or at my graduation or while you were in the bathtub. I didn’t want to come home, ever again, to you all bloody and in a mess.”

I nodded.

“Now,” she continued, “I don’t want my own children to see you that way, ever.”

“Same here,” I said. 

What I didn’t tell her was how hard it is to give up the wish of turning back the clock to the time when the external me and the internal me presented a united front. Logically, I accept that a united me is only a figment of my imagination. Emotionally, I am conflicted. I want to feel complete and confident but there are the missing words and the missing names and the missing months and money.

“The medication is here to stay,” I tell my daughter. “Did I show you the new poem I am working on?”

“Yes,” she smiles and hands me back the sheet of paper. “I read it twenty years ago. It’s lovely.” 

Published in Raven Chronicles Last Call, Vol. 26, 2018.

Sue Gale Pace has work in over 120 publications in Australia, the UK, Canada, and the U.S. Sue writes poetry, short fiction, flash fiction, and creative personal essays. Her collection of related short stories, Driving Sharon Crazy, is available through Amazon and will also be available though Audible in 2018. In 2017, she was in Manchester, England, giving a workshop on the use of words to portray emotions.