I had been in this neurologist’s office far too much the past year. Every few months, whenever I would have an episode, I would find myself right back in this spot. Wooden chair with a puffy seat cushion and a stiff back cushion. Leaning my right elbow on the mahogany arm, where my limp hand supported my quivering chin. Right next to my terrified and teary-eyed mother, often not sure whether she was crying for my sake or for her own.
My sunken in eyes darted between corners of the room, to the various degrees that lined the back wall, wondering what any of them meant and how much money he had paid for them, to the glass cabinet where he kept some sculptures of the skull and nervous system, probably for decoration more than for reference, to the trio of engraved rocks on his desk, telling me to love, hope, and dream respectively. I could do none of those things in that office.
The issues with my broken brain began a little over a year before, just as I was finishing my degree at community college. I had been working out, like I did every day for about three hours. I was in the prime of my self-destructive athleticism. I had just finished a set of back exercises when I got up to grab a drink of water. All of a sudden my right arm started lurching and shaking and writhing, and I couldn’t control it. It stuck out from my body like a switch on a wall that would never go back down. No one noticed at first, but after about 15 seconds the rest of my body started to tremor, and I collapsed onto the floor. I tried to yell for help, but the contractions of my body restricted my throat. It was the exact feeling in a nightmare when you’re trying to scream but you can’t make a sound. I learned later on that this wasn’t normal. Most people who experience a seizure have a feeling of unease or what doctors call “an aura” and then simply black out. I was lucky enough to be well aware of the torment my body was experiencing.
The last thing I saw before I blacked out was someone call for help as they walked over to my body on the floor. The last thing I thought before I blacked out was, “I’m going to die.” I woke up about 15 minutes later in the back of an ambulance. I slowly opened my eyes and looked out the back of the ambulance doors into the orange sunset light. I groaned as I tried to sit up in the stretcher, but I couldn’t move. As I stirred, the paramedics looked at me and asked me the basic questions.
“What’s your name?”
“Joe.”
“What year is it?”
“2014”
“Ok good.”
After I groggily answered his questions he went back to fiddling with the IV that I just realized had been placed in both of my arms. The one in my left arm was thick, and I constantly felt its presence under my skin. Through the back doors of the ambulance I saw my mother run up to the doors.
“Hey,” I said to her, as if nothing had happened.
“Are you ok?” She asked.
I responded by weakly shrugging my shoulders and closing my eyes again. She turned to the paramedics.
“Where are you bringing him?”
“We’re gonna take him to Stony Brook.”
“Ok, I’ll follow you there. I’ll meet you at the hospital, Joe.”
I nodded my head slowly as she walked back to her car. Halfway to the hospital my awareness began to return. I looked at the paramedic sitting next to me and asked what happened. He said I had a seizure.
A seizure? Doesn’t that only happen with strobe lights and some sort of stimuli? How could I have had a seizure. I thought to myself, “Well shit at least it wasn’t a heart attack.”
A year later, several neurologists later, several medications later, two more seizures later I was here at the office again, attempting to find out what was wrong with me, for what seemed like the millionth time.
“So we’re still not really sure what’s causing the seizures,” my neurologist said, flooding me with deja-vu. “But because of your recent issues we think you should go into the hospital for some testing.”
I looked up at him with a furrowed brow, feeling a mixture of desperation and frustration at the idea of being locked up in a hospital overnight again. I muttered a quick “fuck” under my breath.
“What would the testing be?” I asked.
“Well essentially, it would be like some of the brain scan tests you’ve had before but over a longer period of time. You’ll be strapped to electrodes for about seven days and they’ll monitor you during that period. Just so we definitely catch something, what we’ll do is pull you off of your medication while you’re in there and incite a seizure.”
My stomach dropped at not only the thought of having a seizure again, but purposely having one with the intent of being observed. I felt like I was going to be forced to be a lab rat in a clear cage, doctors hovering over me and scribbling down their findings while I writhed and suffered.
“How am I going to go to the hospital for that long? I have school, and I can’t just give up the semester,” I asked, fighting back against my doctor’s proposal.
“Well don’t you have a break coming up?” My mother asked.
“Yea I do, the week after next. I guess I could go in for the break.”
“Then that’s what we’ll have to do,” my doctor interjected.
I sighed heavily and said, “Well fuck, I don’t really have a choice do I?”
My doctor looked at me with pitying eyes and said, “No, I’m afraid not”
Two weeks later, after my mid term exams and right on time for Thanksgiving break, I was admitted to St. Charles hospital. I had never been to this hospital before except to visit family members. It was a Christian hospital, as expected from the name, and in almost every room there hung a deeply unsettling crucifix.
After my initial paperwork had been filled out, they wheeled me to my room — they rarely let patients walk themselves around the hospital, an immense annoyance that made me feel even more broken than I was —an off-white box on the fourth floor with a wonderful view of the parking lot.
The most disturbing part of that room was the bed. It was the same standard issue hospital bed of which there was a pair in every room. It had light beige guard rails embedded with dark blue buttons for adjusting the back and height, and a remote tethered to the right rail with a bright red button to call the nurse. Tidily-made and sanitized thoroughly, it perfectly matched the one next to it. It seemed that I didn’t have a roommate for the time being, so the window bed was mine for the taking.
About ten minutes after I got myself settled there a technician came to hook me up to the EEG machine. They rolled in what looked like a mobile supercomputer, with tendrils and wires that overflowed from the chassis of the machine like roots from a tree. The technician came in, a stocky man of about 30 with a thick black beard, and started to place a gel to eighteen different spots on my head equidistant from each other.
He placed a pad attached to a wire on each dab of adhesive, until I was fully covered. I was like a robotic Medusa with electric snakes growing out of my brain. He wrapped it up with a cloth shower cap and medical tape, and told me that all I had to do was sit here and let the machine do its thing for the next seven days.
Seven days attached to this monstrosity. Seven days in the hospital. Seven days in the room. Seven days of no showering. Seven days of beeping heart monitors down the hall. Seven days stuck.
My parents had left a little before dark the day I was admitted. I spent the rest of the night lamenting my situation and slowly beginning to parse through the books my parents had brought for me from home. They included a book of selected Emily Dickinson Poems, Cosmos by Carl Sagan, and a teen book that I had asked for only because it was new. I had no real intentions of reading it. I went to sleep that night after barely touching the inedible dinner the hospital had given me.
I woke up at about 3:00 in the morning disturbed by the sounds of groaning. I slowly opened my eyes to see nurses wheeling in a wheezing and moaning elderly man. They delicately shimmied him from the stretcher onto the bed next to mine. I hadn’t moved from where I had fallen asleep but one of the nurses made eye contact with me and closed the curtain that separated the two beds. Listening to the nurses adjust and then readjust the man’s position I sat in a fetal position on that bed, staring at the faded pink and blue curtain that now hung between us. Eventually the nurses got him settled in bed, and the sounds of the poor man’s groaning and wheezing had brought me back to sleep.
The next morning I woke up early, having had a restless night of mediocre sleep. I was sitting in the bed at about 9:30, flipping through the few channels that came with the hospital’s free program. A middle aged woman glided into the room, glanced at my unconscious neighbor, and walked over to the foot of my bed.
“Hello child,” she said. “Would you like me to pray for you?”
I stared at her with a certain amount of incredulity and confusion. Was this a thing that happened at hospitals? Then I glanced at the huge crucifix that hung on the wall and realized where I was. Catholic hospitals are unique in that they like to pepper in their own versions of spiritual healing while administering the biological and physical healing. Despite my renouncement of the Catholic Church at the age of 12, I felt bad for this woman. She had a sincerity in her eyes and truly believed that by repeating her words next to my bed while I sat there in a state of near psychosis, she would enhance my “healing” process.
“Knock yourself out,” I responded.
She walked over to the left side of my bed and knelt down on the floor so that her praying hands met the edge of the mattress. She recited the lord’s prayer slowly and with emotion as I stared at the painfully blank wall across from me. When she finished she got up and said “God bless you, dear.”
I nodded at her as she walked out of the room, glancing once more at the unconscious man on the other side of the curtain. This would happen every morning at precisely 9:30 while I was there.
The next three days blended into each other, confined to my bed, only having enough slack on my wired dreadlocks to reach the bathroom, I had exhausted the paltry selection of terrible movies available on the hospital TV. I read the book of poetry and the teen book I had with me. The teen book turned out to be terrible, and that was the last time I read that author.
It was during this period that the doctors had begun cutting down on my medication, hoping to incite a seizure while I was attached to the EEG machine. My anxiety had kept me from getting regular sleep for over a year now, but it was truly at a new extreme now. It’s scary enough going to sleep worrying that you may wake up only to have a seizure, but when it becomes an expectation, a completely different kind of anxiety takes over.
It was Thursday and I had been in the hospital for about five days. It was Thanksgiving. The nurse’s station had been decorated with paper orange leaves and turkeys, but other than the scattered decorations, nothing much had changed in the hospital —not that I was able to leave my room anyway.
My parents had called earlier that morning to let me know that they would not be able to come and visit me that day. They apparently had begun renovating the living room of the house while I was in the hospital and were far too busy to make it there. It was for the best, because I felt in my sorry state it was best to keep me isolated. I reassured my mother that it was ok, and that Thanksgiving doesn’t mean much to me anyway. It never had meant much to me. I didn’t have much extended family, and the last six or seven Thanksgivings have been spent alone with only my parents, occasionally inviting over one of our neighbors whom we knew had no family of his own.
That year, I began to think about it somewhat differently. I thought back to my early childhood, when my extended family had still been on speaking terms, or in the cases of some of them, still alive. I remembered my grandfather always sitting at the head of the table, myself in the seat next to him. I remembered cutting his turkey for him and serving him spoonfuls of applesauce. I remembered sitting on the couch after dinner and seeing his eyelids grow heavy as he sat in the puffy recliner he spent much of his time in.
Sitting alone in that hospital bed, accompanied only by the noises of passersby —my sickly roommate had been taken out the day before— I had an increased fondness for those past days.
As it grew dark, the nurse brought in my beautiful Thanksgiving dinner of dry and slightly crusty slivers of turkey, a scoop of mashed potatoes, and a small package of apple sauce. She placed the tray down on the bedside table and looked at me the way you look at a dog with a missing leg.
“Happy Thanksgiving,” she said, with a forced smile and heavily bagged eyes.
I took off the lid of the tray and looked at the depressing meal that was likely being served to hundreds of patients in the hospital at this very moment. They seemed to have forgotten my request for a vegetarian dinner, but I felt guilty bothering the nurses who were inevitably busy at the moment. I ate the chalky potatoes and the package of applesauce and covered the tray back up, before I lied back in bed and continued staring outside the window, watching cars pull in and out of the parking lot, wondering how many of the tiny people were here to visit mothers, fathers, grandparents, aunts or uncles. I wondered how many of them wouldn’t make it to see Christmas.
At 10 pm that night a nurse came around to administer my nightly medication. I had been taking my medication at home in the window of 8:30 and 9:30, so I always had the worry that my nurse had forgotten about me in my sterile prison cell. But, as she always did, she came around with a little paper cup with my medication and a little plastic cup filled with water. Following the nurse into the room was a heavyset, middle aged woman with light brown hair. She carried several fashion magazines and a Danielle Steel book under her arm.
I said hello to the two women as they walked into the room, and the heavyset woman responded with a warm smile and hello. The nurse handed me the cups and I saw that my seizure medication had been missing from my pills. I shot the nurse a confused glance.
“We’re cutting off your medication entirely tonight so we can try and instigate a seizure,” she responded to the look on my face. “She’s going to watch you tonight so that if you have a seizure and can’t hit the call button she can do it for you.”
I looked to my right, and the heavyset woman smiled at me as she settled down in the chair across the room. The thought of being in this hospital had been unsettling enough, but they have graduated from keeping me tethered to machines to being watched in my sleep.
I nodded in agreement, my mounting anxiety keeping me from responding with words. The nurse left the room as the woman who would be watching me settled in. I never bothered to learn her name. I don’t even think I spoke to her at all while she was there. I was too terrified of my own sleep to utter a word.
That night, I awoke abruptly at some unknown hour, writhing and contorting just as I had in the gym over a year before. I tried to reach for the call button but I had no control over my limbs. I stared at the woman sitting across from me who had nearly drifted off into sleep as she rose up from the chair to get the nurse. The last thing I saw was her walking out of the room. I faded out in that hospital bed alone, just after my Thanksgiving dinner.
A colleague of my neurologist who was in charge of my tests had come to see me the next day. My parents had come that morning to speak with him and find out the status of this dragged out and excruciating process. The doctor looked no older than 25, and had the facial structure of an infant. He had curly orange hair and green eyes, and was stick-thin and tall.
“Well, I looked at your results,” he began. My mother and I both looked at him with desperation.
“Unfortunately, they showed nothing unusual.”
I was stunned. I had been in this godforsaken room for over six days and they had forced me into a seizure and they had no new information for me. How was that possible? I let out an agonized and angry “FUCK.”
“How can that be?” my mother asked him with frustration.
“Well, I’ll admit it is a bit rare, but it does happen. Usually, the issue in these scenarios is that it’s a frontal lobe seizure, and the electrodes we attach can’t detect the activity through the thicker parts of the skull.”
My parents and I sighed heavily, utterly disappointed.
“Well now what?” I asked.
“Well we can keep you in for more testing and try again, or…”
“No fucking way. I’m not staying here another night. No offense to you doctor, but we tried, and it didn’t work. I’ve been attached to this machine for a week now. If it’s all the same to you, I’d like to be rid of it.”
He looked at me with shock at first, not expecting my outburst of frustration, then with pity and sadness.
“Ok then, that’s what we’ll do,” he said. “It’s still clear though that your old medication didn’t work properly, so I’m prescribing you something new. Hopefully, this one works for you.”
“Thank you, doctor,” I responded.
The doctor left with an uncomfortable nod to my family and a “feel better.” About 20 minutes later the same bearded technician that had attached me to the machine detached me from it. It felt as if I was a molting snake, replacing a tarnished and unfitting skin for a new one.
My parents drove me home on that particularly cold November day, and I stared out the window in silence the whole way home. As I watched dead leaves skitter along the pavement, I began to cry silent tears, because this whole week had been for nothing.
Joe Goncalves 