…literature does its best to maintain that its concern is with the mind; that the body is a sheet of plain glass through which the soul looks straight and clear, and, save for one or two passions such as desire and greed, is null, and negligible and non-existent.
People write always of the doings of the mind; the thoughts that come to it; its noble plans; how the mind has civilized the universe.
—Virginia Woolf, On Being Ill
I must have felt that the body was a sheet of plain glass through which my soul looked straight and clear. I was concerned mostly with filling up my mind. I wanted it to get fattened with facts and stories, with literature, philosophy, history. I wanted to have an indexical knowledge of culture. I filled myself until the sheet of plain glass smashed and I saw my surroundings through cracks.
Then, falling became a central part of my life and I began looking down at the ground more. I was obsessed with ground, with being grounded, with objects that ended up on the ground, with what we considered ground, with natural and artificial grounds, with the feeling of a person becoming ground, with the figure/ground relationship.
Instead of accumulating energy, objects, experiences—I endeavored to rid myself of energy, objects, experiences. I stopped looking to the mind for answers and decided instead to look at the ground.
Some years later, I would take a large piece of plexiglass to the beach and prop it upright in the sand. After looking at Robert Smithson’s mirror displacements, I too wanted to work outside with my hands and point to the environment around me. I watched the waves through the glass. I began to edit, in black sharpie, the movements of the waves, the clouds, the site.
After the long dramatic arm motion, after I looked at my mom blankly and said I didn’t do that, my body stiffened and I fell to the ground.
ILLNESS OFTEN TAKES ON THE DISGUISE OF LOVE
It’s not as if I’m walking around ill. All is well and then it’s not. I’m gone, having floated away. Although, it doesn’t look from the outside like floating. I have been attempting to ground myself for over ten years. Robert Smithson likened the mind to Earth. Both are in constant states of erosion. Words and rocks. It becomes oblivion. During the few tender and violent moments of a grand mal seizure, I am oblivious. I am in oblivion. Virginia Woolf says illness can masquerade as love. A frightening romance. During the first four years of my twenties, I was in a relationship. The duration of this relationship matched almost perfectly the duration of my lapse in seizures. Illness was a distant memory during my infatuation with this man. A grand mal seizure, wrought with shaking and clenching, leaves the body tired and the mind still. And this relationship did the same. And so I am convinced that my brain’s excess energy was channeled and tunneled into this person so wholly that it did not have the fuel reserves necessary to seize. What conditions need be present for the body-mind to be taken hold of?
I was seized by him and a certain emotional oblivion. I was performing an unhealthy relationship, and my scenes included crying in public, throwing myself on the floor, lying in the middle of the road, and begging for forgiveness. In one of many seizure logs, wherein I attempt to make sense of my grand mal timeline, of the losses of consciousness and the whys, I wrote: No seizures March 2007-August 2011. In the log, I noted: I was living in Pennsylvania, in this relationship, practicing regular yoga, eating predominately healthy with the exception of coffee. The entry stops there.
I am not sure if all illnesses can be grouped together. I suspect they cannot. But what Woolf writes is true for epilepsy:
…illness often takes on the disguise of love, and plays the same odd tricks. It invests certain faces with divinity, sets us to wait, hour after hour, with pricked ears for the creaking of a stair, and wreathes the faces of the absent (plain enough in health, Heaven knows) with a new significance, while the mind concocts a thousand legends and romances about them for which it has neither time nor taste in health. (6)
The same odd tricks. In love, the body is taken hold of by forces—seized and rippled through by something foreign and warm. In my performance of the girlfriend, my performance partner, the boyfriend, often said you don’t have epilepsy. I suppose this was a mind-over-matter tactic—and it sometimes comforted me. However, it also stirred pangs of distrust. But I do. I didn’t see how convincing myself otherwise would prove healing. And, giving a name to something can take away some of its power. It can cast a net over all of the symptoms and keep them hovering and contained under one word or phrase. It’s a fantasy. But in his oversized deep purple sweater and disappearing and reappearing beard, he comforted me. During those four years, I was attempting to exorcise something. This dis-ease that now ceased to have a name. You don’t have epilepsy. And so I was attempting to clear myself of whatever this excess energy was. My brain rendering chaos into the form of a shaking woman.
Virginia Woolf was right. She was sicker than I was. Or, maybe she just appeared sicker. Or, maybe it is wrong to compare illnesses. I have had fifteen grand mal seizures and countless petite mal seizures. The rest of the time, I am walking around “normally.” I am not bedridden. I do not experience pain or physical ailments save for the aftereffects of falling. Epilepsy is a disease of the brain—but the body and the mind are supremely impacted. It is an edge disease and this is perhaps why I am allured by it—a thing that lives inside and outside of me. I don’t know how to regard the brain. I don’t feel as though I have a physical disease. However, I also know that the mind and the body are an inextricably connected unity. And so, where does this seizure disorder live?
It seems to live nowhere. It vacates me until some threshold is lowered and I unknowingly invite it back in. The neurologist would say it resides in the brain. The seat of the mind. Ancient texts classify it as a disease of the mind, not of the brain. Of the spirit. Of the seat of the soul. Ancient texts hypothesize that it can be released through a cutting of the skin. The disordered person bleeds the spirit out and can then live on in peace, engaging in mild activities and avoiding all excesses of mind and body. Though this is antiquated, I can fathom how that might have been the theory. Though now doctors fancy themselves sophisticated, fastening electrodes to the head and watching the brain waves appear on a monitor in real time, something does have to be released.
I’ve made detailed descriptions of books I want to write, of projects I’d like to finish. This is held energy that might later manifest as a fit, an event, a seizure. I am sometimes very mean, moody, mercurial and I search for opportunities to wear myself out physically and mentally—to get the bitch out. If it could be bled out, I’d certainly let them incise me.
Virginia Woolf was right. After a seizure, I am stricken with the greatest love for everyone in my life. I see them anew and all history is wiped clean. I am in a blissful state for a few hours. And the giant seizure gives my small body the gift of being too worn out to move, while my mind has the luxury of floating—free from worry, sorrow, past-future concerns. I am in the oceanic post-ictal bliss of rebirth. It’s as if I’ve shaved my head or moved to a new country or awoken safe after a natural disaster. A few days later things will go back to normal. I will worry. My body will again feel restlessness. The safety of having just had a seizure will fade, and I will again be imbued with the fear of the possibility of seizing. Virginia was right.
I wait for the stir. The small fluttering breeze behind my eyes.
the moving of something from its place or position / the enforced departure of people from their homes, typically because of war, persecution, or natural disaster / the amount by which a thing is moved from its normal position / the occupation of a submerged body or part of a body of a volume that would otherwise be occupied by a fluid / the amount or weight of fluid that would fill the volume displaced by a floating ship, used as a measure of the ship’s size / the volume swept by a reciprocating system, as in a pump or engine / the unconscious transfer of an intense emotion from its original object to another one / the component of an electric field due to free separated charges, regardless of any polarizing effects / the vector representing electric displacement / the flux density of electric displacement
I wore only black. My face was pale and I had a dyed black pixie cut. I was attending Sarah Lawrence College. I am not sure if I thought things were going well or not and I cannot locate any journals from this time. I considered myself a writer and a scholar. I was studying the history of performance, political philosophy, Romantic literature, and poetry. I thought of myself as a surrealist writer. I cannot now recall why I thought this other than the fact that I wrote fictional whirly poems. At this point, I was “pulling all nighters” lots. I was very concerned with being “well read” and I had read a few books by Virginia Woolf: Orlando and Mrs. Dalloway and maybe one other. I did not yet have reason to read On Being Ill. Even now, as I write this, I think I am not ill. And, maybe I’m not. However, this was the winter of 2006 and I was very ill, though I did not know it yet. I was very ill and had one symptom. My symptom manifested every day, usually in the morning. My symptom had been happening since the previous summer. My symptom was and is very hard to describe. So, first I will tell you how I described it then:
My entire body jolts and it’s as if I am brain dead for an instant. If I am holding something, I drop it. It’s most dramatic in my arms. Both of them stiffen and my fingers splay out wide. If I am speaking, the word I am on elongates or chops. I forget what the rest of the sentence would have been. If I’m in the middle of saying I love you and I have the symptom, it will sound like: I looooo.
The way I would describe my symptom now is not very different. Even though I had been “studying language” for a few months, my symptom confirmed what I had long suspected: Language wasn’t real. It was a thin covering under which stirred primal choppy elongated uninterpretable sounds. This was my first year at college. I had a sense of impending doom, but didn’t know how bad things were going to get. For instance, each time the symptom happened, which was daily, I was sure that my brain was gearing up to do something larger.
THE BOOK I WANT TO WRITE
I want to write a book in which the plot is not building. I am thinking of writing a book in the form of a scatter plot. There are many points and there is a line connecting the points. The plot is jagged, some points higher than others. However, there is no one highest, most important point. I’d like to write this sort of book for many reasons. One reason is that there has not been one most important seizure or event. When I look at the seizure logs that I’ve kept or that my mother has kept and when I map the events out in my mind, the activities look like a scatter plot of shakes. There are building-up moments and coming-down moments and there are ups and downs but there is not one up and one down. Additionally, I like the idea of setting out to write a book that mirrors brain waves.
When I watched the DVD of my brain wave recordings I requested at the hospital, I did not understand what I saw. In some ways, it didn’t matter. What mattered was that there were certain bursts of heightened activity; seizure activity; spikes. These appeared and disappeared throughout the recording. My brain looked like a normal brain and then it didn’t. You’re just a beautiful girl whose wires get crossed sometimes.
In my book, the reader will be able to move from part to part, point to point, and see where the activity is heightened and where it dips, where the brain waves are steady and where the waves spike into seizures. The reader will not need to navigate the book chronologically. The reader will be able to pick up the book and start at any point. The reader will be able to move backwards and forwards according to desires of the moment. The book will be a log. The book will be a poem, a novel, a memoir, and an index. The book will put no pressure on the reader.
Virginia Woolf was right: Indeed it is to the poets that we turn. Illness makes us disinclined for the long campaigns that prose exacts. We cannot command all our faculties and keep our reason and our judgement and our memory at attention while chapter swings on top of chapter, and, as one settles into place, we must be on the watch for the coming of the next, until the whole structure—arches, towers, and battlements—stands firm on its foundations. (19)
Because my brain no longer feels like a tower building on itself with a firm foundation at its base, I distrust novels and anything not fragmented. Because the line between consciousness and unconsciousness feels like a glistening hair, I do not want to participate in the act of writing a novel. I have been writing poetry. Or, fragments. For years. I have written several essays (fragmented) and art reviews (not as fragmented). One of my essays was rejected because it “didn’t go anywhere.” Where do I go when I seize? I don't want to pretend to know or to build a narrative around it. For a long time, I largely gave up reading and writing unless it was in fragments.
In March 2006 I returned to Pennsylvania from a spring break road trip. My friend and I had driven from Georgia along the Blue Ridge Highway. I remember being anxious for him to leave. I wanted to be alone. I wanted to be alone a lot then. And I still do. But, in March of 2006, I wanted to be alone so I could release something that had been building in my brain for close to a year. Or, as I would later come to figure out, for nineteen years. But no, that makes it sound like a slow climb towards a peak.
I was in the attic talking to my mother. The attic had a sloped ceiling and hardwood floors. We were seated at stools looking out the large window. The Pennsylvania house was situated in a little valley, and so the attic view revealed the grass of the hill above the house and the quiet street. The driveway was steep and winding and I could see that, too. I had been outside, walking around the backyard the night prior, elated to be home. I decided I didn’t want to return to the south. I was wearing a red vintage t-shirt that said, in digital typeface: PROTECT YOUR FLOPPIES. I assumed this was a reference to floppy discs and an ironic nod backwards. But this was the morning. And I was in the attic telling my mother about the trip. My speech slowed and I forgot what I was talking about. Next, my right arm moved up in one graceful maneuver. Then, it moved down with the same ballerina grace. It was as if someone had a remote control and was moving one small part of me. It was in slow motion — pale arm and wrist moving in a long sweeping curve up and back down to rest on my lap. I looked at my mother and said I didn’t do that.
This was the most dramatic miniature seizure yet, the most visible symptom. In the past, even if someone had seen the symptom, it didn’t appear large or problematic. It only felt terrifying in my head. And so, my friends and family would say too much caffeine, too little caffeine, stress, oversensitivity, etc. But this one was a gross involuntary gesture.
A gross involuntary gesture. The line between voluntary and involuntary movement is thin. I’ve learned to pay close attention to what my body is doing, and to know that it does what my mind tells it to do. If my wires get crossed for even a millisecond.
You’re just a beautiful girl whose wires get crossed sometimes. You’re just a beautiful girl whose wires get crossed sometimes.
What was I wearing? What was I wearing? It was possibly the same red vintage shirt from the night prior. Now, in 2016 as I stare out my studio window onto Lower Manhattan, I cannot bring myself to write about this next part. As I stare out onto the edge of the island of Manhattan where it runs into the East River, the Brooklyn Bridge connecting it to another large land mass, I realize why I can’t write about this next part. I have reached the end of my conscious memory of the experience and the end of my experience of not knowing what it’s like to experience a grand mal seizure. This is the end of my pre-seizure self, the self that did not walk around frightened of slipping into seized unconsciousness, of a violent fall to the ground. And so, I can only approach these experiences from their edges. I can approach them based on my pre-seizure auras and my post-ictal injuries, memories, and body-mind warnings. For details about the events themselves, I’ve interviewed family and friends. I have one eight second video of myself seizing in 2013.
I’m at the edge.
I don’t remember waking up. I don’t remember the ambulance ride or the first moments in the hospital. Or the transition from the ambulance to the hospital. I don’t remember any of the tests that were done. I don’t remember conversations or looks. Images come in and out. The language for the remembered experiences gets elongated or chopped the way the miniature seizures chopped my brain and shook up the surroundings. So this is what was going to happen. My impending doom had surrounded a dreaded feeling that everything was about to go black. The lights were going to go out and I would be gone. In a way, this is accurate. However, a seizure is more akin to the lights in the house flickering on and off, on and off, until they are so worn out and confused that they go out. The neurons fire all at once, setting off a symphony of symptoms that the brain ordinarily prevents via excellent neuron communication. I could be messing all of this up.
The thing happened. The big event happened. I would soon find out via a young neurologist at Lehigh Valley Hospital Center that this had been a seizure. They wanted to know if I had taken any drugs. No. They wanted to know if I had gotten enough sleep. Yes. They wanted to know if I had been drinking. I had had a beer the night before. At this point, I was drinking regularly. And smoking half a pack to a pack of Parliament lights per day. I payed little attention to my body. Like the literature that Virginia Woolf talks about in On Being Ill, I thought that the mind civilized the universe, that my mind was in the process of civilizing my universe via extensive readings of the canon. How was it that in the middle of my own little universe, during my attempts at civilizing myself and my surroundings via Hegel and Rousseau and Ann Carson and going to art museums and trying to understand the transition from modernism to postmodernism, that I could have a seizure? I had been busy chain smoking outside of the art building and wearing my black hoodie everywhere. I had been busy doing experiments: What if I contrasted some aspect of Wuthering Heights with Yeats’ poetry? The moors! The moors. What if I pour red wine in a water bottle and drink it slowly throughout my day of heady courses? How will I feel? What if I stay up all night writing a thirty page paper on Schiller’s aesthetics?
But I had been ill during my experimenting and I was now being told by a stranger that I had a disease. And that I would have this disease for the rest of my life. And that I needed to take this medication (a red and white pill called Zonegran) for the rest of my life. And that if I stopped drinking alcohol and got ample sleep every night and I remembered to take this pill every day, that I wouldn’t have to worry about having any more of these events. That I could live a normal life, filled with sleep and sobriety and no seizures. This was good news. Epilepsy, this strange word, was good news. Now there was a name for what was making me go momentarily brain dead. And, another piece of good news: I had indeed been having miniature seizures (petite mal seizures) for the past year. I loved being right. Great news, right? It was great. The best news yet was that I didn’t have some kind of specific problem, i.e. a brain tumor or brain damage. My scan, though I don’t remember having it, had come back normal. My brain looked like everyone else’s. No lesions or growths. Great, great, great.
I would later learn that I had idiopathic epilepsy. A disease caused by unknown variables. Probably some of it is genetic. However, since then, I’ve come to realize that the seeming relief of having no concrete problem to remove, is actually somewhat maddening.
Q: Why did you have a seizure?
A: Because I have epilepsy.
Q: Why do you have epilepsy?
A: I don’t know.
Staying up late
Most cooked foods
I scoot down the stairs, confused, with my mother. We are both sitting down, sliding step by step to the bottom.
I wake up screaming for my parents. I am covered in what I first think is blood, but later realize is red acrylic paint. I am certain that everyone in my family has died. I fall down the stairs and call my mom. I tell her I think I am about to have a seizure. Then I realize that what feels like impending doom is actually some kind of afterglow, afterdarkness. No, I say, I just had one.
I see headlights in the review mirror of Valerie’s car. I attempt to get out of the car and walk onto the highway.
I wake on the ground in prospect park, a hole in the knee of my black and white yoga pants.
I wake in the lawn of strangers, certain I’ve been kidnapped. A police officer almost tazers me. After, the neighbor whose lawn I’d seized in acts as if I owe him something. He tells me he thought I was on crystal meth.
I wake in an auditorium filled with people. The most important poetry reading of the semester. The poet asks if he should keep reading. For weeks, I cannot look at campus security.
I look at a photograph of Spiral Jetty, Smithson’s most famous work, and realize it will someday disintegrate. This is what feels so honest about his work to me. I guess one could argue that all art will disintegrate. Books, oil paintings, Jeff Koons’ shining sculptures. But, Spiral Jetty will erode back into the Earth. Nothing has been given or taken. A line in the sand. What makes me seize isn’t that I’ve contracted something. Nothing has been added to my body except, I think, energy. This is what I like about Smithson—what is most visible is the energy. The land around the work is seen afresh. The scenes around the seizure are seen afresh. I am reborn. I am walking towards the water in awe. The sediment has been shaken off. I’m remade. I have been looking for Robert Smithson’s Collected Writings all morning. I am sweating. I am on the verge of tears from looking for this book. I’ve decided to read another book. But, I’m not paying attention because I’m thinking of Smithson’s Writings—the cover of the book, places I may have left it, how much of it I’ve read already, how I might feel when I finally uncover the book.
I am with him. We are at a national park in northern California after driving through the night up the coast from Los Angeles. We are hiking. I’m afraid to go down a steep hill through the woods. I am afraid and taking too long. He is unafraid and glides down the hill. Waits for me at the bottom. We are planning to have sex in an open field in the national park. I think this is illegal. We are excited to do it. I am also stressed out and terrified of this hill which feels like a mountain. The hill feels like a mountain. We get in a fight at the bottom of the hill which is instigated by my fear of going down the hill. We come to an open field with tall grass. We climb up another less steep hill. Some words are said. Hurtful things back and forth. He throws my car keys into the open field. We spend what feels like the next three hours scanning the field for the car keys. We are silent the whole time. The fight is still happening in silence. The weather is perfect in northern California. I have never been here before. The grass is tall and soft. Finally, he is the one who finds the keys. He holds them up and they shake. We climb back up the less steep hill and find a larger field with greener, shorter grass. We make love. It’s been two years since my last seizure.
An oversized house in Pennsylvania in which, upon entering for the first time, a friend remarked: Very nouveau riche. The house has four floors. The top floor is used as an office for my mother but will later be used as a bedroom for my brother. There are hardwood floors throughout. There were yearly Christmas parties in the house, which is set down in a valley. The Christmas parties were extravagant. There was a harp player on the third floor and a piano player on the first floor. There was a room for sushi. There were horses that took the guests down the sloped winter driveway to the light of the house. There was the smell of Christmas candles. There were over 200 guests and it was called an open house because the guests could come at anytime throughout the day. From, I believe, two o’clock in the afternoon onwards into the night.
I seized twice in the house. Once alone and once with my mother. The stairs were always an obstacle. When I was alone, I fell down them, hitting my head on the way, getting a concussion, and vomiting. After vomiting, I felt better. More energy released. Then, I watched Almost Famous and fell asleep on the couch. The house felt bigger than ever. I would have fallen down the stairs the first time, but my mom convinced me to slide down on my butt like when you were little. However, there was still another flight of slick stairs. My friend, awoken by my mother’s screams help she’s having a seizure carried me down the stairs. He remarked later that this hurt his back. He was disoriented and had just woken up. He thought someone was playing a trick on him. I was compliant. I slid down the stairs, although now I have no memory of this. And, I allowed him to carry me down the stairs. I have a vague memory of this. I was wearing pajamas. I do not remember the color. All three of us got to the bottom of the stairs safely and waited in the living room, in which no one usually went, for the paramedics.
The room was bright white and on this day in March it felt particularly oppressive. I had been taken into the room to be calmed down. I had been taken into the room because it was at the bottom of the stairs. I had been taken here to be held here while everyone watched me and wouldn’t let me out of their sight. Why were they looking at me? Why did I not have the physical strength to walk? Why were we in the living room? The living room, previously only used for show. Something special was going on. It was an early spring morning. It was March 24th. I was nineteen and a half. Why were we here I wanted to know. What was going on. I thought something was going on and people were trying to protect me from the truth. Maybe something terrible had happened to someone I loved.
Woolf: Incomprehensibility has an enormous power over us in illness, more legitimately perhaps than the upright will allow. (21)
I prefer incomprehensibility. I began to prefer incomprehensibility to clarity around the time I began to seize. I read The Poetics of Indeterminacy and John Cage. I read Gertrude Stein. I abandoned Frank O’Hara, Sylvia Plath, Joan Didion, Ann Sexton. I read Glass, Irony, and God. I started to distrust the confessional, the rant, the autobiographical, the chronological. I disliked literature about the body. I disliked humorous literature. I disliked the novel. I disliked chapters building upon chapters. I wanted to find a perfectly fragmented literature. A literature I could understand in its incomprehensibility. A literature that would feel like my autobiography—one that would hold together and then fall apart, stay upright and then fall over. And, again. A literature of repetition and unreliability. I distrusted the upright. By now, I was twenty. I was about to drop out of Sarah Lawrence for the second time.
I dropped my writing class and enrolled in a sculpture class. I told the sculpture teacher that I wanted to take the class because I had become frustrated with the intangibility of language. This was true. How could language describe or evoke the incomprehensibility of the aura and the aftermath, the edges, of a neurological event, a seizure, of my condition, which I only understood marginally. The teacher was impressed. She let me take the class. On the first day, we had to choose an object and sculpt it out of paper. I sculpted a carrot out of paper. I am not sure what this exercise was meant to teach us, other than to look. It was like in writing classes when you had to accurately describe something. Now I was attempting to accurately sculpt a carrot out of paper. I wasn’t satisfied but it was less frustrating than language because I was able to use my hands.
I was one of the upright people. No one in the class knew that I had seized a few months prior or that I would seize again. I was upright, just like them. I would sculpt objects with them all semester long. I would become a sculptor and work with objects and reliably physical things. I would stop reading and writing and be a physical person. My energy was too-much-in-my-head and I needed to bring it down. I thought that reading and writing added energy to my head and using my body took it away. My plan was to use my body as much as possible and exert exert exert. This meant no reading or writing. This meant walking, running, doing yoga, and sculpting. I would become more embodied. This sculpture class was my first step. I had met him six months prior. It was September. I never returned to the sculpture class or to Sarah Lawrence.
I am looking at a photograph of Robert Smithton’s “Sixth Mirror Displacement, from Yucatan Mirror Displacement (1-9)”. 1969. Mirrors are stuck in the sand. There are twelve of them. A range of blue-white hues are reflected in the mirrors. The sky. I desire to be like the mirror displacements. A mirror is a breakable fragile object usually hung on a wall. A mirror provides the illusion of more space. A mirror does work. It reflects you back to you. A mirror receives energy. Smithson frees up the mirror and grounds it. There are several mirror displacements but the ones that I love most are when the mirrors are upright in sand or dirt. I can feel the lower half of the mirror grounding down. There is no adhesive or bolt. The mirror can be uprooted at any time. There is also something funny about this displacement—awkward rectangular mirrors arranged in a group.
THE BOOK I WANT TO WRITE
A seizure has a beginning, a middle, and an end. Not all parts of a seizure may be easily distinguishable. Woolf was right. We need to shift the hierarchy of passions. Our relationship had a beginning, a middle, and an end. I was aware that we were at the beginning when we were at the beginning. I didn’t think we are in the middle of our relationship when we were at the middle. Now, years after the end of the relationship, I can say this.
The book I want to write will talk about the differences and similarities between seizures and romantic relationships. No. Books should be specific. The book I want to write will discuss my relationship with him and my experience of my neurological disorder. I will hypothesize as to why I did not seize for the duration of our relationship, which was four years. This was my longest seizure-free period. This was also the most dramatic period in my life. And so, the book will describe each seizure fully. I will conduct interviews with those who have seen the beginning, middle, and end of my seizures. And, for those seizures where I was alone or with strangers, I will write as specifically as possible from the edges. I will begin with the beginning (aura) and then go to the end (post-ictal) and fill in the middle based on guesses. I will want the reader to trust me, so I will be sure to indicate that I am simply guessing — that I do not know what happened — because I was unconscious.
The book I want to write will have a beginning, a middle, and an end. It will take me exactly one month to write it. I will be disciplined in my daily writing schedule. The book will include detailed accounts of the major events of my relationship with him. I will write with clarity. The reader will be able to follow my logic. The relationship and the seizures were fragmented, messy, and did not have a beginnings, middles, and ends during my experience of them. The book will make a shape out of something shapeless and give form to something as elusive as a shift in electrical activity. It is 2016. It is ten years since my first seizure. I am making a list of all of the books I want to write.
I woke up in my room in Bushwick, Brooklyn. I walked to the bathroom. I noticed that there was a slight trail of bright blood. I called my mother. By this time, I was sitting on a chair in my room. My foot hurts.
Transcription of a voice from a talk on Robert Smithson: He was taking materials from certain areas in New Jersey and putting them in metal containers, taking them into what you might call the nonsite or the artificial site of a gallery or art museum. but he actually hoped that you would go back to the original place in New Jersey.
A dialogue between the original site and the nonsite. I love to look at the photographs of Smithson loading his station wagon with giant rocks from New Jersey. He collected specimens. He brought things from the margins to the center. He brought Spiral Jetty to New York via video. I have never seized in New Jersey. In the summer, I go to my parents’ house in New Jersey several times a month. I take photographs of rocks and other objects I find on the beach. Pillows, boulders, driftwood. I feel averse to taking things from their place.
How much coastline along the state of New Jersey. The varied and underestimated landscape of New Jersey. All roads seem to lead to and from New Jersey.
I ride my favorite public transportation to the ocean—the NJ transit. I walk several miles along the ocean daily. I decide this in-transit-always-mode will help my brain release toxins, energy, all too positive thoughts, all too negative thoughts. To get neutral.
The Great Salt Lake is dense with minerals. It is a terminal basin. Almost nothing can live there. There is a particular kind of algae that turns the water red. The water was red when Smithson created the spiral. He created opportunities for land and water to meet. Again and again, the water fills spaces in the spiral. Things break down though. This intervention is consistently changing. It is eroding. During a drought in the west, there is no water. When will I go to the spiral?
The New Jersey coast is largely flat. I can ride my bike miles and miles along the coast. I have never attempted to ride my bike in the American West. The American West is such a romantic term — one that excites me immediately. Earth Day was created in 1970, the same year Smithson finished Spiral Jetty. By putting art outside in the world. What happens when we make art outside?
I seize outside of the world? It’s ephemeral.
Vast, empty space. It’s ephemeral. Is there a beginning, middle, and end? The Dia Art Foundation owns (?) Spiral Jetty. They regularly document it. The entropy. The tendency of all things to move from order to disorder, to chaos. Spiral Jetty will slowly come apart over millions of years. Is a seizure simply the easiest thing for the brain to do? What does entropy have to do with it? If a neurological disorder is a kind of chaos, then why not let it be?
I take a video of the waves moving in and out. I am in New Jersey. I send the cell phone video to my aunt and she thanks me. Summer is almost over. It’s 2015.
SPIRAL JETTY 1970 EXTRACTION MOVIE
Mud, salt crystals, rocks, water.
Mud, salt crystals, rocks water.
Mud salt crystals, rocks, water.
Mud, salt crystals, rocks, water.
The sound of propellers and the hot red of an algae bloom in the lake. And orbs of light.
Gazing intently. Smithson talks about the sun. I am still thinking about New Jersey. He must have been thinking about his home state when he made the spiral. Now the helicopter is circling around the jetty.
Circles circling out of the sun. Sunstroke. This term is usually restricted to the condition resulting from intense sunlight. In mild cases, it may only consist of headache and lassitude persisting for a few hours….in more intense cases….recovery may be slow…and for a long period subsequently, there may be loss of memory and inability to concentrate.
After sitting on the New Jersey beach for hours without sunscreen—going in and out of the ocean—and feeling fine because of the cooling effect of the water—I get sunstroke. My skin turns bright red, my head pounds into the night, I get nauseous. I almost vomit. I’ve never seized in the summer. The sun is healing up to a point. Reflective surfaces— including water—intensify the sun. In Smithson’s video, the sun is nearly blinding. The sun is cleansing up to a point. After that point, the sunbather might get ill. You can sometimes walk on Spiral Jetty. Other times, it’s submerged. I swim to the sandbar. A few years ago, I stopped painting and started to sculpt. I like to call my work process art because it is ephemeral. I like to destabilize objects. I am not sure you could call what I do sculpting. I guess you could call it arranging. Smithson is interested in harkening back to ancient art. It was communal. There wasn’t a single genius. Then, the public interacted with it. I’m thinking of Rome and its ruins. When I was fourteen, five years before I started seizing, I went to Rome with my family. I walked around the ruins. I was not concerned about falling or hitting my head. Now, if I visit Spiral Jetty, the thought will flash—will I fall and hit my head on the rocks?
No gallery or museum could possibly do what the open land does. The sound of helicopter. He choppered it into the city. The giant boulders being pushed into place— blooming out out out. Is this a way of moving away, of turning your back? Are you more interested in nature or humans? I have not been to New Jersey in a few weeks. I have not seized in five months.