The Day

As part of my psychotherapy, I was asked to write about the initial seizure and subsequent diagnosis from the 3rd person’s perspective. I have buried a lot; I haven’t wanted to return to that particular day, but I know it is present. It is there, in my mind, lurking. It appears in dreams; it presents itself when I let my guard down. In my unconscious states, the presentation in these moments is sometimes cloaked in metaphors and surreal imagery, but I wake knowing where it is tethered. This is human nature; this is our survival mode kicking in.

Jeremiah Ray, *untitled*, 2013, oil, acrylic, charcoal, dirt, on canvas

Jeremiah did not feel well upon waking. Perhaps it was stress or another late night of working on his thesis… he could not tell.

After a shower, he felt slightly better, but there was a tiredness that he could not shake and a queasy feeling in his gut.

He exited his basement apartment and stood on the stoop. The dappled sunlight flooded over him. The air was still cool, as it was barely April, but the sun was growing strong. He closed his eyes and stood still, ‘yes,’ he thought, ‘sunlight will nourish me.’

Stepping down, he dodged the uniformed children making their way to an elementary school just west of his apartment. He noticed, almost daily, that their uniforms had a military look to them. Neatly pressed shirts and pants, leather shoes, etc. They didn’t look like the catholic school uniforms he had worn in his youth.

Jeremiah arrived at the corner of Broadway and Thorndale. It was a busy morning, and, like the school children rushing to make their classes, the cars that whizzed past had an urgency to them. Jeremiah didn’t have such an urgency. He stood on the corner and let the unhindered sun fall over him. The traffic and pedestrians danced around him. He seemed to be at a standstill; he was, in fact, and this made him seem out of place within the whirlwind of the morning commotion.

He had no real urgency, he had none in fact. That morning, his only plan was to go to the park and meet Eda. They had arranged to soak in the sun in Millennium Park. It was, he noted again, a perfect day for such an occasion. Also, he wanted to see more of Eda, she was attractive, intelligent and a good conversationalist. They were still in the early stages of getting to know one another. He liked this time, the explorative and exciting time of a potential relationship.

Part of Jeremiah’s attention was preoccupied with the lingering feeling he had had since he awoke. It wasn’t nausea per se, and he knew the sensation of stress; thus, he could also rule that out. The other part simply wanted to enjoy the sun. He remained in a neutral zone, letting neither sensation nor desire pull the entirety of his attention.

Jeremiah had waited through two rounds of red lights & two rounds of green crosswalk signals beckoning him to join the others in their haste. He decided to go across Broadway to the Thorndale Red Line Station and join in the morning rush. He disliked these morning commutes but loathed the afternoon and evening ones. Depending on the day, the northbound trains leaving downtown anytime between 4 and 8pm were like cattle cars. The morning commute was less crowded; Thorndale was only a few stops before the end of the red line, a perk of living so far out of the city.

The schoolchildren ran past him as he stepped out to cross the four lanes that made up the intersection of Broadway and Thorndale. Broadway was one of those streets that ran a great distance, miles and miles of ever-changing facades; CVS pharmacies, mattress stores, seedy restaurants, the flip side being trendy coffee shops, hipster bars, Whole Foods, etc. Jeremiah was used to New England streets, even the city streets like those in Boston, that curved around this way and that, intersections that confused tourists and locals alike, and one-way streets that began randomly. The city had no real planning and just grew with the expansion of the population, which grew due to the Industrial Revolution and the massive changes it brought with it. It was as if the city reached out in all directions, sending runners here and there that shaped the city with some chaotic beauty. On the other hand, Chicago was systematic; streets would run for miles and miles, and the flatness of the Midwest let them stretch to no end.

The sound of the schoolchildren became slightly muffled, as if there was some sort of ringing in his ears or that they had water in them. Sunlight bounced off of a storefront window and blinded him. It was a flash, like an explosion, a bolt of lightning. The schoolchildren ran about, laughing gleefully. Looking down Jeremiah saw the shadows of everyone going to and fro, it was an insane dance upon the sidewalk; bodies blending and merging, figures morphing into multi-limbed creatures that split apart, multiplying and dividing. Again, an explosion as the sunlight bounced off another storefront window. He had kept his gaze down, mesmerized by the multi-limbed shadows. As the blast of light occurred, the shadows dispersed as if running from it, as if scared. Then, when the lightning flash passed in the blink of an eye, the shadows returned and resumed their odd dance.

Overhead, the northbound Red Line slowed at the station. The thunderous wheels rolled to a stop and then began again, generating this metallic cacophony that quickened until it was swallowed up by the southbound train. The two sounds were dissonant and jarring. The northbound train was picking up speed as the southbound train began to slow. The sounds pulled at one another, tearing an ugly hole in the peaceful morning.

Clack clack claclaclaclaclaclclcl the northbound train ran away.

A hiss of sorts sounded out; there, above him on the trestle that stretched over Thorndale, was the southbound train. It stretched many cars and seemed to loom almost imposingly above him. The doors opened and then closed, and it moved south like its northbound counterpart as if tugged by some unknown force. The sunlight broke through the train cars; at first, it was slow, shadow-light-shadow-light. Then, as the train increased speed, the timing generated a hypnotic sensation even behind closed eyes, shadow-light-shadow-li-sha—l-sh-l-s.

Jeremiah’s stomach turned, the queasiness rose up inside him, and there was almost this desire to wretch. He was unsure at that moment if he was standing still. Was he moving? Others around him took no notice; they flowed about him like a river moving around a large rock. Unlike the rock holding its own in the torrents of raging water, he began to give way, to slip. A sneaking sensation of paranoia crept up within him. It crawled up his spine and filled his mind with questions: Are you ok? Are these people aware of you? Are you having a panic attack? His awareness of self made his eyes move about pinpointing someone or something that might be an anchor he could hold. There was no one. There was nothing.

The feeling of queasiness moved from his gut to his head, and there became a pressure. As it ventured from his gut to his head, it curled its fingers about his throat, then wrenched his jaw open with such force. It felt dislocated, swinging there, disjointed, resting on its hinges. Then, the fingers crawled into his brain. His eyes fluttered. They fluttered again. The two trains arrived simultaneously, northbound and southbound, directly across from one another on the narrow, wooden platform that separated the two trains. The doors opened at the same time, and both departed at the same time. The metallic clanging was almost symphonic and then again became dissonant as the two ran off in separate directions, each moving at different speeds.

His unhinged jaw swung open and locked in that position, ajar and painful. His stomach burned, his legs unsteady. Jeremiah’s right hand began curling inward, fingers to palms. He had no control of this movement, none whatsoever. The southbound train arrived, and the shadows flickered until they slowed to a stop. His eyes fluttered in a syncopated rhythm; eye open, shadow, eye closed, light, etc.

His ears filled with every sound, every car, every child running off to school, every footstep, every flash of light… Then, there was not a single sound at all. Like the shadows upon the ground that moments before had transfixed his attention, so too did the motion of everything and everyone, just a blur of beings and objects in various colors and shapes, coming in and out of lights and shadows. Then there was stillness and just a whooshing sound in his ears.

His curling hand turned inward and was drawn upward towards his open jaw, then further to his head. He cupped it as best he could with his rigid hand. It wasn’t pain that he felt; he didn’t know the words. There was simply a lack of control. He could not say no to stop this, to return his hand to his side and close his jaw. The whooshing sound disappeared, but the world still remained motionless. A sound came from him, from within him. It wasn’t a word or a plea for help. It was a word to him yet outside his vocabulary. A moan escaped him as a sigh, as a yawn might. A long, extended moan. Then his body fell, his legs gave way, and his being slipped downward into some hole, into some sort of abyss that opened underneath him, a trapdoor in the earth.

Where was he? Who was he? Just blackness that engulfed him; rich, thick darkness in which no light was present, no words were uttered, nothing. His sigh had left, the morning commotion had gone, and the trains no longer sounded out. Nothing. No one.

Epilepsy monitoring

After weeks, perhaps months, of trying to decide whether or not to undergo the epilepsy monitoring, I elected to take the needed steps and proceed. Even after registering and meeting the doctor and team of techs I was still ready. Then, however, something shifted and I didn’t feel prepared (emotionally/psychologically) anymore — I even started to wonder if I ever was. Perhaps it was the hospital setting and the rising anxiety that these institutions produce. Or the clinical smell that permeates my unconscious mind, leaving me with a sick feeling in my gut. Or the veggie burger I ate that tasted exactly like the one I would consume at Mass General. Maybe it was the person in the next room who was moaning and crying while amid a seizure and/or experiencing post-seizure horror that caused a terrifying delirium, which is inexplicable. Maybe it was a combination of all these elements, but I decided to postpone the study… in fact, I was almost desperate to leave the hospital as fast as possible.

The process post-study didn’t sound as easy as I hoped. Afterward, Post data collection, I would undergo several neurological tests, i.e., language, cognitive function, etc., to ensure the safety of potential surgical resection. Then, a team of neurologists and neurosurgeons would get together and review ALL the information and decide if I was even a candidate for surgical intervention. This testing/deliberation could take 4-6 months. Though I knew it wouldn’t be so cut-and-dry (no pun intended), I certainly didn’t think it would take that long.

For the time being, I decided to take baby steps. I left the hospital with what’s called an ambulatory EEG. This allowed me to return home to continue resting and healing — both of which are desperately needed after years of treatment and the emotional, psychological, and physical stress this entire ordeal caused. Before leaving the hospital, a dozen diodes were glued to my scalp. These are then connected to a small box that gathers information 24/7. I was also given a camcorder meant to be left on while I’m sleeping, sitting reading, writing, playing guitar, cooking in the kitchen, etc. — basically any place I might be for several minutes. The intention is to capture any possible seizure-like activity via brain waves and on film.
Perhaps this monitoring will shed some light on certain elements and reveal potential seizure activity.

Baby steps. Slow and steady…

I’m trying to race through all these tests, not just those related to the seizures, but every single test (blood labs, CT scans, MRIs, etc.), desperately hoping to return… but to where I know not. There is some kernel of normalcy out there — there must be, right? Although I am trying to find it in the past, I know, beyond a shadow of a doubt, that this normalcy I seek, this peace of mind and, dare I say, acceptance, is found right here and now.

I just haven’t gotten there; I haven’t arrived. Acceptance of what is, that ability to live (more) presently, is just beyond my grasp. I know I could easily take hold it, maybe lean just a little farther out, bravely extending, trusting myself in doing so, but I’m held back. The bitterness and anger pull me the other way, back into the known. I am seeking normalcy in this place, in the past, but all that remains some visions and daydreams lead to the bitterness and anger felt presently. I often wonder, when in a moment of clarity, how much I polish those memories to better serve my current state of anger, sadness, etc. This is where the emotional and psychological exhaustion, or at least the majority, stems from; the continuous construction of a palatial past to which a return is impossible.

Measuring time

I measure time in interesting ways now. A row of trees (“green giants”) were planted in my backyard roughly two years ago. As they grow, like most trees, they send these vertical shoots (for lack of a better word) straight up, and then those, in turn, begin to fill out with horizon branches. They have not only sent up their shoots, but they have also begun to fill out. This is the intention of such trees; they are used as a natural wall. They are close to becoming impenetrable.

I think about when my dear friend visited. They put cream on my hands; it was a lovely gesture and made me feel safe and secure. When they came to visit, we went to get gelato. My hair fell out. They noticed it on my pillow but didn’t want to say anything, but I knew. When I left Chicago, I took their suitcase. It had a little Travelocity gnome on the handle. When I returned home to Maine, I left the suitcase in my room and lived out of it. Not that I couldn’t settle into my room in my mother’s house; I just didn’t think I’d be here long enough to have to. It wasn’t naivety, just wishful thinking and the assumption this would be over and done with by mid-summer. The suitcase was there, just resting in my doorway. I would wash my clothing and put them back in the suitcase, folding the pants and shirts neatly so they would fit. The little gnome smiled up at me, bidding me to take off, to go boldly out there, wherever there was. Slowly I unpacked, however. I washed my clothing, folded it, and began to fill my drawers. Then the suitcase was put in our basement, the little gnome still there, hanging off the top. That was over two years ago.

I want a 9-5 job. I want to go out on the weekends. I want to point the finger at someone or something. I ate organic food for the majority of my life. I was a vegetarian, didn’t touch GMOs, and tried to eat locally when possible. I drank green tea and coffee — but only organic, of course. I was raised on a farm in Vermont — I was an earth-loving flower child before earth-loving flower children became trendy and commercialized. I meditate regularly and exercise 4+ days a week. So why am I still fighting this this fucking disease?

Yes, that’s right, fuck. Fuck this, fuck that… fuck!

There’s shame in all this, too. As with my diet and lifestyle, how on earth did I get cancer, considering how I tried to be diligent (almost militant!) about the choices I was making? Or is that guilt? I am not sure I fully understand the two: shame and guilt. Do I feel ashamed when I let out the pain and anger from this ongoing battle? Or is that guilt? Do I feel guilty that I feel as though I am burdening someone with it all this? Or is that a shame?

We have a tendency to glorify these people who go through cancer with some sort of sage or guru or saintly-like bravery and stoicism. The talks and books, the inspirational speeches, and blah blah blah. But that person who marches through it all doesn’t exist. Yes, they do, but I can guarantee they cracked, broke down, and screamed. Yes, the inspirational speeches are full of beautiful sentiments about this or that, about how cancer was “the little friend I needed.” The majority, though, I’m assuming, are like me in the sense that they can’t right themselves long enough to step away from the looming shadow that is cancer.

My oncologist said I should get a job. I’m not sure if that was a joke or not.
My other oncologist said, when I had ongoing back pain recently and asked for an MRI (it turned out to be an inflamed disk), “that’s the trouble with doing scans, it seems you always find something wrong.” Excuse me? Fuck you.

Those green giants have indeed filled in. They have made a lovely wall. Inside that wall, on my side, there are plants, flowers, and endless beauty for the eyes to behold. I will admit my gardens are beautiful. Our gardens are beautiful. I spent endless summers crafting them when I was at home from school or had free time from work, etc. When I lacked stamina due to treatment and willpower, my mother took over and put her unique touch on them. But I’m not there, not fully present on our side. I am standing with my friend’s suitcase, with the little gnome on the handle, ready to travel, trying desperately to get beyond the wall of green giants. I am certain that on the other side is a 9-5 job, weekend drinks, and conversations that don’t feel like a burden to others. On the other side, hand massages are simply hand massages and not about squelching intense fear that transcends words.