Images of broken light which dance before me like a million eyes,
they call me on and on across the universe.
Thoughts meander like a restless wind inside a letterbox,
they tumble blindly as they make their way across the universe.
– John Lennon

You feel the whole thing, quite tiny at first, right from the start.
It’s like glimpsing a point, a familiar point, on the horizon, and
gradually getting nearer, seeing it get larger and larger;
or glimpsing your destination from far off, in a plane,
having it get clearer and clearer as you descend through the clouds.
― Oliver Sacks

It started with an eyelash, the feeling of a twinkling presence. I wondered if it was the earliest formation of a wish. I thought about the wish the eyelash could grant.

I saw flashes and zig-zags of glimmering light, just outside my peripheral vision. I felt a tingling. I caught a glimpse of what my mind could hold.

A flickering veil of light veered into darkness.

On my way to work, I thought there were flecks of silver eye-shadow stuck on my eyelashes. I tried to brush them away to see better.

By noon, a pain had gathered in my skull. As a teacher, I had lunch duty so I did my best to settle the children at their tables with their cardboard trays of food. The smell made me sick to my stomach. I took slow breaths to manage the queasiness.

The scene became strange and blurry. The children’s mouths were moving but there was no clear sound, just a muffled, cacophonous haze. Time slowed down.

I must be hungry, I thought, so I went to stand in line to get something to eat, perhaps a muffin or a bagel. The lady behind the counter frowned at me. For some reason, I could only focus on her rising irritation. I could tell she was speaking to me but I could not fully hear or understand. The words were stretched out and distorted. Tears started to stream down my face. I felt like crumpling to the floor. A stretcher was brought. I was taken away.

I spent the afternoon in a small dark room. Another teacher was kind enough to put a cool cloth on my head. I was thirty-four.

I talked to my doctor the following day.

“Sounds like you’ve just had your first migraine.”

She made it sound like a rite of passage, as if I had crossed a threshold. It was not unlike the feeling of getting my first period.

“There may be just one, an isolated occurrence, or this could be the start of a pattern. We’ll have to wait and see.”

***

My mother mastered the art of the fugue when we were young.

She suffered from chronic migraines which caused her to remain in her bedroom with the curtains closed to keep out the light. My sister and I were at school so she could while away the hours in the darkness, hoping for the pain to go away. Time slipped by. We had to walk on tiptoes when we got home.

“Your mother is resting,” my father would say, without emotion, burnt out from my mother disappearing to her room. I didn’t understand why she needed so much time to rest. I felt worried about her but also wondered whether she was pretending or just hiding away from life in the bedroom.

***

When I found the book Migraine by Oliver Sacks, I read it with fascination. I recognized my mother in the lonely world of the migraineur, one of spectral visions and gross distortions of time and space. I learned that the term “migraine” is derived from the Greek word hemikrania (ημικρανία) which means “half the skull.” The first known use of the word in English was used to describe a type of severe headache, related to the dilation and constriction of blood vessels in the head.

I felt lucky to have never had another migraine like my first one. But I still got bad headaches.

Sharp, piercing, and out of the blue – always on the right side of the skull, in the right hemisphere, home to spatial reasoning, navigation, and everyday tasks. The pain would stop me in my tracks.

I opened my eyes wide then closed them tightly shut; I clenched my jaw. I tucked in my chin like a bird, under an imaginary wing. I cradled my head for comfort, hoping the pressure would provide relief.

I used to call them, jokingly, the ice-pick headaches, back when they were funny and didn’t happen very often. I attributed them to the stress of teaching in a middle school.

***

About ten years ago, the headaches began to intensify and occur more frequently, along with other symptoms that were hard to fathom.

I kept finding myself in my own fugue – a sort of drifting, cognitive fog. Driving around, I was suddenly unable to remember where I actually was, as if I was in a dream or had been drugged. I struggled to navigate my way to familiar and ordinary places.

It had to be more than a headache. Was it more than a migraine?

At times, I felt I was trapped inside a Victorian garden maze, helplessly lost within a series of interconnected paths and dead ends. The winding twists and turns of the maze began to blur together, making it impossible to remember which paths I had already taken.

I lost track of time. I traveled in circles.

I saw myself from above, trying to find my way through the dark green walls.

One night, I found myself hopelessly lost in a downtown parking structure. The looming concrete walls sent me into a panic. I stumbled out of my car, heart racing, leaving it running, and cried out for help. I was terrified, as if I was having an out-of-body experience, completely cut off from myself.

Yet other parts of my brain functioned at lightning speed. Effortlessly lucid, complex, and abstract. Everything seemed mercurial, mystically interconnected with a silvery invisible thread.

Was I bipolar? Hypomanic? What was happening to me?

One day, I took over thirty minutes to explain the Latin Phrase, in loco parentis, to a room of bewildered sixth grade students. Afterwards, I stared at my handwriting, scrawled across an entire whiteboard. The words and pictures formed a map of my mind’s intricate connectivity: beautiful and magical to me, unclear and alarming to everyone around me.

***

It’s hard to fully explain, but I also started to lose my sense of self. Looking in the mirror produced a distinctly strange and precarious feeling, as if I wasn’t fully convinced that the person reflected was actually me. The woman in the mirror had a deathly pale face, hollowed cheeks, and wide, far-set green eyes. The dark shadows under her eyes alarmed me.

Perhaps I was breaking apart, or splitting, or splintering. I couldn’t settle on the right phrase. Would I have to invent a new language to describe my new world?

In the mirror, I saw a shattered pane of glass, with an intricate network of cracks and fractures. I saw myself on the brink of a nervous breakdown. But, like the shattered glass, I remained intact, held together by an unbroken frame. The cracks in the glass were like veins, each one winding its way through the transparent surface in a seemingly random pattern. Some of the cracks were thin and delicate, others were jagged like lightning strikes. Each of the cracks reflected light in their own way.

The objects in my house produced the same feeling as looking in the mirror. I felt estranged from them. Pictures on the wall, photographs, knick-knacks, bits and pieces. Who did these objects belong to?

One Sunday, I decided to take them all down, one by one. I struggled to organize the objects on the floor so I left them there, in piles that resembled city blocks, a world in miniature. I found the bare walls strangely comforting, as if I was staying in a hotel room.

I enjoyed dismantling the traces of my existence.

I also emptied the cupboards and the contents of the fridge. The kitchen counters became unusable as tins and packages of food remained in piles on their surfaces. This didn’t really matter as I had completely lost my appetite and had no need for spaces to prepare food.

Each day, I managed to live off one boiled egg, a piece of toast, a handful of blueberries, several cups of coffee, alcohol (mostly gin and tonic), and cigarettes. I smoked far too many cigarettes.
I painted the shelves of the house’s original pantry a bright glossy white, to create the illusion of living in a French villa.

I paced around the house, observing the wreckage of my life. It was a house in ruins. I watched myself as in a film.

My mind reached a dead end.

***

I finally made an appointment to see a doctor.

I explained my symptoms as well as my family history: my mother’s headaches, neurofibromatosis (a genetic disorder affecting nerve tissues), and brain tumors.

“My mother’s brother had a terrible headache and died within a few days.”

The doctor scribbled rapidly on a pad of paper. I felt jittery and frightened, convinced something was very wrong.

The doctor ordered an urgent MRI scan of my brain.

The following day, at the Imaging Center, I opted to skip the sedative, out of a fear of disappearing altogether and never waking up. I watched the other patients arrive and receive a white pill from a pale blue dixie cup to calm their nerves. For a fleeting moment, I saw the white pill on the tips of their tongues.

I questioned my decision to face the experience in its full dimension.

I lay flat on my back on a padded, narrow table. Inside the insistent whirring and turning of the machine, I measured increments of time, trying to remain motionless. A strong magnetic field surrounded my body. Rapid switches, loud and jarring, tried to find a sequence.

I was not allowed to even flutter an eyelid. I sensed the shimmering light on both sides of my eyes. I had to keep reminding myself to stay still, as the slightest twitch or movement could blur the images, diminishing the accuracy of the scan.

I thought about my mother lying motionless in her bedroom.

***

As a child, my mother lived through a series of aerial bombing raids, carried out by the German Lutwaffe over Birmingham, one of England’s largest industrial cities. From August 1940 to April 1943, many buildings were destroyed – factories, hospitals, schools, hotels, shops, houses. In the sky, there were droning silhouettes of aircraft, obscured by clouds of smoke. On the ground, fires ignited and explosions shook the area, casting a glow that was reflected by shattered glass and metallic surfaces. Inside dark and damp shelters, people huddled in terror and uncertainty.

On the night of November 19, 1940, a bomb hit The Hall of Memory, a war memorial constructed to honor the memory of soldiers who had fought and died in World War I. The roof was damaged, many windows blown out, but a bronze soldier remained eerily intact, holding his rifle across his heart, standing alone in the dark rubble. Because of the blackout, no one would have been able to make out the shimmer of the statue’s metal alloy, melted down from copper and scraps of tin, elements of zinc and nickel.

My mother was seven when the raids started. She learned how to navigate her way through a minefield, walking through the ruins of nearby houses the next day, looking for shiny glints of shrapnel, silky pieces of parachute silk, broken parts of a teacup. Now and again, a doll.

When the war ended, she was changed forever. She was ten. Even though she would not fully remember, her mind at times an empty slate, the traumatic memories were stored inside her body, tucked inside her like a child in a bed.

She suffered from intrusive thoughts, flashbacks, and nightmares. She always tucked the blankets around me too tightly, folding her trauma into me, against the edges and corners of the bed.

Later in life, she blunted her suffering into non-existence, with the blue pills and alcohol, eventually wearing it away to nothing, like small polished stones worn down in a river.

***

On the phone, my doctor explained the results of the MRI.

“The findings on the scan are abnormal.” The word took up a large and dark space in the conversation. I felt a heavy thud inside me.

“The findings are suggestive of Multiple Sclerosis.”

She stressed I needed to see a neurologist right away

After a few more words I would not remember, I hung up the phone and stared at the wall.

The image of a sand sculpture came to my mind. I pictured a large piece of sparkling sand breaking off, triggering a tiny landslide behind the glass. I felt something slipping away from me, a crumbling inside my mind.

I remembered my son’s sand sculpture that I had thrown to the ground and broken when he was a child of eight or nine. It was a fleeting moment of rage, a reenactment of my own childhood, a replay of my mother throwing plates and bottles against the walls. It was not an excuse to smash a child’s treasured object to pieces. I remember the way he cried out, seeing the sand and glitter on the floor. I swept away the broken glass in silence.

I had hurt the one person I most wanted to protect.

I was turning into my mother.

***

Before she died when I was thirteen, my mother’s agoraphobia worsened, although we never called it that. I found the word long after she died from cancer to describe her condition: anxiety or panic attacks in public spaces.

Whenever we walked through town at night, past the open market, she would grab my arm tightly in a state of panic, as if she were facing an inescapable truth about her existence. I remember the trembling, the frail frame of my mother’s small body, as she leaned into me. I was eight, nine, ten, eleven. I was very worried about her. Because she was so disoriented, we often had to stand still for a while, until the spinning stopped, two silhouetted figures in the shadowy emptiness of the night, surrounded by the dark shapes of the town’s buildings.

I believe that my mother had an encompassing fear of being in wide-open spaces because she perceived them as desolate and overwhelming. Strangely expansive and yet at the same time empty. The wide open spaces evoked a deeply ingrained fear in her psyche, tethered to the traumas of her past.

Over time, my mother grew more and more afraid of the outside world, and began to intentionally avoid certain situations and places. The number of situations and places to avoid increased exponentially. It became safer to remain at home, safer yet to remain in her bedroom.

In the solitude, the lights went down; in the gloom, she waited for the melancholia, tinged with a pretty deep blue.

***

Telephoning to make the appointment to see the neurologist was hard.

“M.S,” I said, when the receptionist asked why I needed to see the doctor.

“What?”

As I repeated the letters, I burst into tears. But my emotions quickly shifted and welled up into anger. I told the woman at the end of the line that she clearly lacked enough emotional intelligence and compassion to be making appointments for people who needed to see a neurologist. She didn’t take that very well and took on a tone. She finally gave me a date and time for an appointment in two weeks.

“Do you know where we are located?” she asked. Ha! The irony.

“Um, no,” I said. She continued with a series of rapidly delivered directions involving one way roads, multi-leveled parking structures, elevators coded by different colors, and connected hospital corridors. I closed my eyes, swallowing back more tears. How on earth would I find it?

***

The two weeks before my appointment with the neurologist passed slowly. I worried about the closer reading of the MRI and the realities it would reveal. I researched a lot about Multiple Sclerosis, delving into the intricacies of autoimmune diseases and how they affect the central nervous system. I learned about how the immune system attacks the protective covering of nerve fibers, leading to a breakdown in communication between the brain and the rest of the body.

On the day of my appointment, I gave myself an hour to travel a distance of seven minutes. After all, I did not trust myself, let alone time and space. This was not the time to challenge myself to do so.
I found the office and managed to check in without incident. I sank into one of the dark blue chairs and stared across the waiting room, noticing patterns of broken light on the floor, dappled and dancing patches of sunlight.

Then I watched myself, from my mind’s eye, sitting in the chair, thoughts meandering inside my head.

My name was called. A person with a clipboard walked me through a set of white doors.

When the neurologist walked into the office, I sensed the calm and measured expression on his face. I felt relief, an absence of doom, as if he was not going to deliver devastating news that would completely alter my life. Everything will be fine, I told myself. Over and over.

But he spoke with urgency.

“To begin with, you do not have Multiple Sclerosis.”

I held my breath, then slowly swallowed.

He continued to speak with emphasis and insistence.

“Would you like to see the results of the MRI? The pictures of your brain?”

I nodded. He seemed strangely excited, as if we were going to watch an old film reel together. He explained how the MRI would show detailed cross-sectional images of my brain’s soft tissue, including the cortex, white matter, and basal ganglia. He turned off the overhead light and flicked on a smaller one to show the results.

“You have something rare.” I immediately compared the weight of the word rare with the word abnormal. I had difficulty breathing.

“What we see here are Unidentified Bright Objects or UBOs as we call them. They present themselves, as you can see here, as myelinated patches between greyish white and whitish grey.” With the tip of a pen, he pointed to an area of the scan, with swirling hypnotic circular motions. I interrupted him. After all, he was beginning to speak in riddles, in neurologist tongues of incomprehension.

“Hang on,” I said, in an effort to slow him down.

“UBO? What does that stand for?” I felt as if I was in a dream, or a science fiction film. I was definitely inside the Twilight Zone.

“Unidentified Bright Objects!” he replied.

“Areas of distinct fading – brightening of the brain’s grey matter.”

I felt very troubled by his explanation, settling on the phrase distinct fading as distinctly terrifying. I knew it had to be the gin and tonics, far too much gin. And too many cigarettes. It was certainly the heartbreak I’d lived though, the edges and shadows of my mother’s life cast over mine. My thoughts spiraled.

At the same time, I felt intrigued, developing an instant attachment to the mysterious and magical bright objects. I liked the idea of my brain’s plain grey matter being replaced by brighter, sparkling matter. Perhaps my head was a cathedral, with a chandelier to hold the bright objects, glittering like orbs in a faraway galaxy.

“There is something else.” My heart almost stopped.

“The UBOs are not really very well understood. Research is underway. But I’m curious. Have you ever experienced any trauma?”

“Where should I begin?”

***

“Childhood was frightening. Empty.”

In the half darkness of the neurologist’s office, I spoke in short, staccato sentences.

I stepped lightly into the minefield.

“My mother didn’t want to have me. She told a story. I was the product of a rape.”

I recounted, to the best of my ability, with a respect for a thing called time, my own experience of trauma, from the beginning, from before I was born.

I explained the dark neglect in childhood; growing up in addiction and chaos. I told him about my pitch-black hiding place, the cupboard under the stairs, when the fights between my mother and father started.

I narrated the sudden deaths in order: my mother, brother, father, and sister.

I touched on the bad personal relationships with men.

The neurologist nodded with a kind and quiet understanding.

“What we are seeing here,” he concluded, “is something called Adrenergic System Overload.”

A part of me actually wanted to burst out laughing. I had reached the fifth dimension, beyond what is known, between light and shadow, an area called System Overload.

I refocused my attention.

He patiently explained that the adrenergic system, also known as the sympathetic nervous system, is responsible for the body’s “fight or flight” response. It releases hormones such as adrenaline and noradrenaline that increase heart rate, blood pressure, and respiratory rate. The overload occurs when there are prolonged or excessive activations of the adrenergic system and a sustained stress response.

“But for you. All of this is happening in your brain.This explains the bright objects!”

I found myself nodding along in agreement, his analysis clear and insightful.

I walked out of the neurologist’s office with a different diagnosis than the one I had entered with. I felt a lightness but also the weight of the mystery that I now carried: curtains of life and blue shadows, gold shafts and starlight.

I tried to concentrate in order to find my car.

I felt the weight of all the things that I had been carrying for my mother. I felt the slow, then rapid, beats of imaginary wings.

***

On bad days, when I cannot think well, my brain feels as if it is disintegrating.

I picture intricate networks of neural pathways. I wonder whether my symptoms are in my mind or an aspect of my brain’s physiology.

Then I remember my bright objects.

I live in fear of a single phrase: They are progressing.

I imagine the bright objects like searchlights, shining into every nook and cranny of my mind. I imagine the light blinding my ability to see straight and function properly. I live with constant fear, with shimmery words and phrases urgent, magical, flashing like blue neon signs inside my head.

I don’t do well in loud, crowded rooms. I hear only static interference, bits and pieces of what people are saying. I nod along to conversations without really knowing what is being said.

My mind is like the radio in the kitchen of the childhood house, never fully tuned to the right frequency.

Now and then, the fear abates and a dull hum of distraction takes its place. It’s a flat, monotone sound, like a heart rate monitor indicating that there is no longer a heartbeat. For a view, there’s a dense enveloping fog. I stare into it, trying to remember what happened just moments before.

Sometimes the fuses blow, short-circuiting themselves. The smallest tasks become difficult. That’s when I practically need a decision-making flow-chart to toast and butter a piece of bread. “Add jam last.”

***

I continue to explore healing pathways: yoga, meditation, long walks, dancing. Therapy: acupuncture, psychotherapy, massage, EMDR. I try to live off forest foods, berries and bright green leaves. I go camping alone in the forest, communing with the mycelium, fungal networks of thread-like structures known for their restorative properties. I fast intermittently and try to follow a vegan diet. I stick my head in a freezer and take ice baths. I work on the yogic art of breath control, breathing full and deep like the moon, observing the waves of my breath like the tides.

I try to do all the healing things. But there’s no magic solution, no silver bullet.

I remember to glimpse what my mind can hold, where wishes meander through my mind and make their way across the universe.

A flickering veil of darkness veers into light.

Sarah Harley is originally from the UK. She works at Milwaukee High School of the Arts where she supports her refugee students in telling their own stories. Sarah holds a BA in Comparative Literature and French, as well as an MA in Foreign Language and Literature. Her essays have appeared in Halfway Down the Stairs, Idle Ink, Glassworks Magazine, West Trade Review, and elsewhere. You can find her online here:https://www.sarahharley888.com.