A Stitch of Time

by Lauren Marks

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  To the fixers and the menders.

  To the family who are also my friends.

  And to the friends who are also my family.

  AUTHOR’S NOTE

  On Aphasia and the Unknown Unknowns

  Izena duen guztia omen da

  (That which has a name exists)

  BASQUE PROVERB

  Aphasia is something you never see coming. You are born, and as you grow and develop, you acquire words and language skills that partially make you the person you are. But maybe one day, in the span of a single second, you lose it all. The world of words—from poems to prayers, from stories to songs—can suddenly be rendered strange. Though one out of every 250 people is affected by aphasia, the term is not widely known among the general public. I personally knew very little about this condition until I was twenty-seven years old, when an aneurysm ruptured in my brain.

  Aphasia can be brought on by all sorts of things, from bike accidents to gunshot wounds, but the most common cause is a stroke. This was how this disorder made its unanticipated entrance into my own life. I suffered a hemorrhagic stroke, a flood in the brain. The path of its damage left its traces in my cells and tissues, which dramatically affected my abilities to speak, read, and write.

  Language is wrapped up with our current and remembered sense of identity. We assign certain words to an experience, and some of them become part of our telling and retelling of the event—the script of our lives. But what happens when someone can’t access the most intimate and natural parts of their language anymore? When a linguistic template is taken away, the balance of these interactions is bound to change in unexpected ways. Banter between lovers fails to ignite. Inside jokes among friends are observed purely from the outside. The way family members interest, persuade, and comfort one another can all shift. We use words to describe ourselves to others, but also to describe ourselves to ourselves. This makes language and memory often inextricably intertwined.

  When writing about a neurological injury, one faces the most basic challenges of memory itself. In The Seven Sins of Memory, author Daniel Schacter warns that: “Past events are filtered by current knowledge,” and “people seem almost driven to reconstruct the past to fit what they know in the present.” Memory is a constant act of creation. As our versions of ourselves change, our memories change as well, unconsciously adjusting their dimensions to our newest understanding of the world. It is hindsight that provides the illusion of unity in our lives, and hindsight is capable of the most astonishing cognitive trick we possess: transforming the impossible into the inevitable.

  Your brain is the organ of perception, so when your brain is damaged, there is a chance that your perceptions are damaged too. After my aneurysm ruptured, I lost the ability to use words effectively, though I wasn’t fully aware of that fact at the time. As strange as it may sound, I could understand the spoken language around me, but I often couldn’t hear how much my own speech was affected. And it wasn’t only my external language. My inner voice was almost mute, too, which meant I couldn’t always ask myself questions or sort through my own thoughts. I am aware that this peculiar type of dissonance bleeds into my recollections, especially in one particular way: I often sound better in my memories than I actually was.

  I started keeping a journal in the hospital soon after the brain injury. It began as a way to interact with others as I rebuilt my fundamental language skills. But it also became a record of my recovery. Throughout this book, I include journal entries I wrote in the year following the ruptured aneurysm. There were almost no audio or video recordings made of me in my acute stages, so this is likely the closest thing I have to capture my aphasic “voice.” Over the span of twelve months, what appeared on the page changed substantially—a portrait of a mind in reconstruction.

  In the throes of my recovery, many of my thought patterns felt unfamiliar to me, and since I had been informed early on that I was living with a language disorder, I suspected language was somehow related to this altered cognition. In the years following my injury, and as my ability to read improved, I slowly sought out models about how language and thought intersect, anything that felt especially relevant to my case. I take a multidisciplinary approach in this book. I include a range of resources, from medical to academic, therapeutic to linguistic, and, of course, anything that came from my own personal experience. Questions of how language affects thought have been asked for centuries. Theoretical models and practical research each illuminate the discussion in certain ways, but they also can directly contradict each other. And since these issues remain open-ended in society at large, this book reflects that lack of certainty. Long after my onset of aphasia, I came to know many other people with the condition, and several members of this community reported to me that their experiences with aphasia didn’t much resemble my own. I found this difference initially jarring, but soon realized that I shouldn’t have been surprised. Language is not one-size-fits-all. Language is unique to each person who uses it, and when it breaks down at a neurological level—like in cases of aphasia—it follows that this experience would also be unique to the individual.

  Even though I have regained a lot of my fluency, people with aphasia live with its effects throughout their lifetimes—I certainly do. This does put me in a strange position as the author here. I use language to describe a lack of it, chronicling a journey that troubled my very sense of self, which still makes me wonder what “recovery” can be when considered in such a relative way. After all, what is a memory without a stable identity attached to it? How well could a woman with a language disorder actually recall what people said to her and what she said in response? How could she capture recollections of thought patterns, and how could she come close to relaying how her brain functioned after her brain ceased to function in that way? It is a challenge to say the least, but one propelled by a deep curiosity. Still, with an exploration like this, I think it’s only fair to question what is likely to be included and what is bound to be excluded, too. Who would trust that woman with a quotation mark if she could not trust herself?

  What I am certain of is this: even though throughout this book I’ve included journal entries and a few other devices, hoping to accurately represent the way I was thinking during the time of the injury, I also know that some part of this project is impossible because my mind—and my ability to use it—has changed irrevocably since then. And if the person who wrote those journals in 2007–2008 had been able to finish this book at the time, that story wouldn’t look or sound anything like this one. I paid attention to the world differently then, and drew different conclusions from what I took in. That’s just the kind of paradox I have to know and accept—with no small amount of humor—at every step along the way. “Myself” is a moving target.

  AUGUST 23, 2007

  The walls of Priscilla’s Bar were the color of dark velvet, the wooden floors were sticky, and the air smelled of recently applied cleaning products. The place was far from packed. When my friends and I walked through the front door, we joined a clientele that was middle-aged, disproportionately male and gay. A one-legged man was parked in his wheelchair by the cigarette machine, his large German shepherd panting by his side. He didn’t appear to be blind, but the management didn’t seem to care about the
dog, which I felt added to the genuine come-as-you-are atmosphere of the place. I picked up my drink and headed to a table with my friend Laura. Our other pal, BJ, stayed on at the bar, chatting up the clean-shaven man mixing the drinks. Why pull him away? It was one of our rare nights off from our grueling international tour, and we all needed to unwind in our own way.

  We had found the pub during our first week in Scotland, riding buses around town as we prepared our play for its debut at the International Fringe Festival in Edinburgh. Priscilla’s was on our bus route, halfway between the theater where we were touring our show and the family home where we were staying. The steep landscapes of Edinburgh were impressive, its parks and graveyards were a verdant patchwork, and the nearby hills were so green they were almost purple. But we soon discovered how much rain was needed to maintain that lushness. Even the sunniest of days would often erupt into spontaneous storms, which swelled the gutters and flooded the routes we would have walked, making our bus commute a necessity. As we sat in our favorite seats at the top level of the red double decker, we would look over at the bar and its patrons, who always started their drinking early. Even the grimmest weather did not dissuade them from squeezing onto the sidewalk in their violet café chairs, cackling over their fluorescent-colored cocktails.

  Without a care in the world, Laura would say, leaving her wet finger-tips on the fogged-up window as we hurtled by. I understood what she meant. I also had twinges of envy as I looked over that scene. These men were doing exactly what they wanted to do in the exact way they wanted to do it. They seemed so damn satisfied. If only we all could be that lucky.

  Laura had written a surreal one-woman play, a tragicomic story of a new-age peace activist with a public access TV show who goes on an ill-conceived hunger strike. The play premiered in a downtown theater in Manhattan with a small but encouraging reception. When it was accepted into the festival in Edinburgh, Laura asked BJ and me to be her touring company. Although we had trained as actors side by side at New York University a decade earlier, we had gathered plenty of experience in the technical and design aspects of theater as well. And we knew we could travel together because we had shared an apartment for a few years. BJ and I accepted Laura’s offer without any hesitation, in part because we were happy to help, but mostly because we were looking forward to reliving our days as bunkmates and drinking buddies. But our excitement for our international adventure died down soon after our arrival. The Royal Mile, the main artery of town, was supersaturated with more than three thousand productions, and the city was teeming with bodies, creating a scene that was part Brazilian carnival, part high school pep rally, part mosh pit. As we tried to navigate it all on our first day, I worried about what I had gotten myself into. Though BJ and I knew people who had successfully brought their productions to the Fringe, we hadn’t thought to consult with them or get their advice. Between the two of us, we were responsible for everything from costumes and lighting, to sets and promotion. Our lack of organization showed. The second day of the festival didn’t improve the situation: after we registered with the Fringe coordinators, we were directed to a back alley, under a bridge, past a Dumpster and a Porta Potty, to a space that looked half abandoned. That was our venue. There had been too many people and too much action on the Mile, but there was definitely not enough of either here. Our new theater wasn’t even a theater, but a temporarily repurposed church basement referred to as “The Vault.” We were exhausted not only by the demands of our touring schedule but by the mayhem of the festival in this city we barely knew.

  •  •  •

  When we finally got around to visiting Priscilla’s in person, it was a Thursday night, near the end of our tour. It hadn’t been the easiest couple of weeks. The number of plays in the festival outstripped the demand from the local audience, so the turnout for most shows was poor. We were finding it impossible to fill our seats, and one night, Laura had to cancel a show entirely because not a single person showed up. All we wanted to do was escape the bleakness of our trip, to disappear for a while, and Priscilla’s served this purpose well. On the outskirts of the city, the bar was half empty, and the ubiquitous Fringe guides that were scattered around most of the cafés and pubs around town were noticeably absent on these unwiped tables.

  Two tipsy young men were using a column for some amateur pole dancing, though the larger group wasn’t paying much attention. A disco ball rotated clunkily overhead, its reflective mosaic lighting up the cracked plaster on the dark walls. Music was emanating from a stage at the back.

  As we found seats at a table, a greying man, sturdy as a dockworker, crooned a surprisingly tender karaoke rendition of “Sweet Caroline” into the microphone.

  Look sharp, ladies, BJ said as he joined us. He had a drink in one hand and a three-ring binder in the other. That’s your competition up there.

  What do you mean? I asked. My exhaustion turned to suspicion when I saw the sly grin on BJ’s face. What did you do?

  Nothing, he said. Nothing bad, anyway. I just signed you and Laura up for the big karaoke contest tonight! He slid the folder of songs across the table and beamed at us.

  Come on, Beej, I groaned. I don’t want to be stuck in here all night.

  Lauren, I know this festival has been more like a stress-tival until now, but need I remind you of the extensive performance training shared among the three of us? Are you honestly saying you don’t think that you and Laura can take the title of the best karaoke duet of the night? Or is there another bee in your bonnet? He shimmied up next to me. Because you know what I think? I think you’re just upset you can’t get your flirt on here. . . .

  I swatted at BJ playfully. A Scottish romance had definitely not been in my plan for this trip; I had someone back home. Sort of. My boyfriend, Jonah, and I had been on and off for five years, and though our relationship was complicated, it was far from over. But a harmless tête-à-tête with a handsome stranger would have been a welcome distraction, and there was absolutely no way that was going to happen here.

  Come on, Lauren, BJ said. Pleeeease.

  BJ was being a little pushy, but I knew he simply wanted to make the most of this trip. He had left NY for a while, and after spending some time in the Peace Corps, the Fringe was his return to theater life. And he had recently been admitted into a post-baccalaureate program at Columbia University, now on the path to becoming a medical doctor. Nights out like this would be a rare occurrence once we got home. And I had to consider Laura, too. The show’s lack of traction, reviews, and audience had been hard for me and BJ to face, but Laura was the writer and sole performer, and she was bearing the brunt of the failure. Now, as she flipped through the song listings, I noticed that she was smiling for the first time in weeks.

  There’s got to be some prize money for the winner, Laura said. Or at least free drinks.

  BJ nudged me affectionately. Go tread the boards a bit. I bet it will make you feel better, he said.

  I didn’t give BJ the satisfaction of agreeing with him aloud, but he was probably right—in spite of my protestations otherwise, getting onstage almost always improved my mood. Raised by two former actors in Los Angeles, I had been performing before I had gotten out of diapers. Even if I was tired, even if it was a silly duet in a sparsely populated dive bar, this kind of self-expression both enlivened and relaxed me.

  Laura had been hoping to come to Priscilla’s since she first laid eyes on it, and I was already talking about leaving. That was just bad form. Of course I could stay a little longer. If I still wanted to explore the town later, I could sneak away afterward. I would set out on my own.

  Well? BJ asked me.

  I stuck my tongue out at him, but then I let him choose our song.

  When the bartender-emcee called out our names, BJ quickly set the video function on his camera to record, and Laura and I climbed onstage. The synthesized track cued up to “Total Eclipse of the Heart.” We put our arms around each other’s shoulders as the white lyrics on the screen tur
ned to yellow, and we started the song.

  I don’t remember when I stopped singing. I don’t remember the fall.

  •  •  •

  It was a slap that roused me. I wasn’t awake yet, not really, because even then my eyelids refused to open. Was that a slap across my face? Even in that drowsy haze, I knew that the world of bodies had changed. Fingertips, skin, groin; all had a new viscous life. Everything was in the wrong place. I was certain it was a dream; it could only be a dream, and I wished my mother would wake me up.

  Then, another slap.

  As my eyes began to focus, it wasn’t my mother I saw hovering above me, but a man identifying himself as a medic. He became broader and blurrier as I was lifted from the bar floor. He was talking to me but I couldn’t understand him exactly. My ears weren’t on right. It felt important to let him know that I wasn’t drunk. But my mouth wasn’t on right either. My gaze narrowed for a moment, down toward my legs. One foot was still strapped into my high, black heels, but the other foot was wriggling and naked, and then, everything in my field of vision started to wobble toward darkness. Voices I didn’t know and hands I didn’t recognize slid me onto a stretcher. An ambulance door slammed shut, I vomited into a canister someone handed to me, and the warping howl of a Scottish siren began to echo between my ears. I was out of breath and my eyes were tearing. I felt something like panic, and then not. I felt something like pain, and then not. I started to drown.

  PART ONE

  THE QUIET

  Aphasia, the loss of language following brain injury, is devastating, and in severe cases family members may feel that the whole person is lost forever.

  STEVEN PINKER, The Language Instinct

  1

  In my memories of the Scottish hospital, the sky is always blue, though I know that can’t be completely accurate. Summer was waning, and as my friends and I had already experienced, Edinburgh was prone to unpredictable storms. Yet, I can’t think of a single moment of rain in the two weeks I lay in bed. My morphine-soaked haze only allowed glimpses and fragments: the bracing air coming in from an open window, the rough comfort of my mother’s fingers wiping my fever-moist brow, my father’s tears. All of that must have been confusing to me, but when I think of this time, I remember more clarity than confusion. I remember the Quiet.