“My Beautiful Broken Brain”: Writing My Way Through a TBI

In the recent documentary, My Beautiful Broken Brain, a thirty-four-year-old woman in London records her recovery from a traumatic brain injury (TBI) following a massive stroke. While watching, I couldn’t help but relive my own experiences surviving a TBI, and the years following that catastrophic event. At first, I thought: I’m so lucky that my injury wasn’t so severe. Yet as the film progressed, and I compared my own experience to hers, I had to acknowledge our stories’ similarities. We both spent a year between the ICU, hospitalization, and out-patient rehabilitation. I feel that anyone who wants to understand what it’s like to recover from a near-death brain injury should watch this film. TBIs are complicated, and when you’re someone who’s obviously as intelligent as Lotje Sodderland—the subject, producer and oftentimes self-documentarian of this astonishing film—an artistic practice during recovery can yield extraordinary results. My own recovery process didn’t culminate in the creation of a notable documentary film—but it did make me into a writer, an MFA student, and an editor at this literary journal. 

My recollection of the morning of April 11, 2007 ends atop a thirty-foot, aluminum extension ladder, looking out from the inside of the Oregon Historical Society onto a busy, sunny weekday morning in downtown Portland; I was at work, cleaning windows. My next memories were three weeks later. I have absolutely no recollection of the fall, nor the following weeks. I found myself in inpatient rehabilitation at Good Samaritan Hospital, and things were weird: At first, I knew that something had to be wrong. I was in a hospital, yet I couldn’t quite gather how I’d gotten there, nor what was particularly wrong with me. I’m so lucky to have such good friends. One couple, whom I’ve known for twenty years, visited several times a week; after long days working and parenting their three kids, they were there for me, at night and on the weekends. They had taken pictures. I can remember sitting in a blue vinyl chair in my hospital room, looking at photos with them, as they explained that one was taken when I was relearning how to walk, and another photo was of my trying to use a fork, sporting two black eyes, the left corner of my mouth sagging from palsy. I will never be able to live up to the kindness that those two friends showed me. I had no idea of the severity of my condition. They were trying to help me understand what I had been through. 

The clinicians call it awareness. It’s difficult for someone with a TBI to know they have an injured brain when that damaged brain is the very equipment required to recognize those impairments. People with TBIs can actually seem “normal,” unless you take the time to notice the accumulation of small mix-ups, cognitive lapses, and forgettings that are ever present under the surface. These little difficulties can create unimaginable anguish and profound frustration–a feeling like something important is missing and there’s no way to know what that missing thing is. You feel completely out of control. 

It was my working memory that was the most damaged. I had also experienced considerable disruptions in my executive functions, but the damage to my memory was the most severe. I had about ten minutes. Then, everything would start all over again. I had no idea what was happening. A friend could leave the room, come back through the door a few minutes later, and I would greet them as if they were arriving for the first time.

I can remember, while in the hospital, a time when I felt as if I were experiencing two selves. There was the brain-damaged self, and then there was an objective, observer self. That observer self didn’t seem to care about my condition, nor question it. It was simply watching. Like an out-of-body experience, the observer self seemed to float above the scene, off to the right side of my body. TBI survivors experience a range of strange perceptual effects like synthesia, dysgraphia, and agnosia. Lights are brighter, sounds louder. We confuse things, transpose letters and numbers—even traffic lights. I can remember realizing that I was confused about the time because I was trying to read the analog clock in my hospital room backwards. It’s these kinds of bizarre effects that co-directors Sophie Robinson and Lotje Sodderland depict so articulately in My Beautiful Broken Brain. Through framing light, camera-shake, and color they attempt to convey this complex, nearly inarticulable experience. 

After a month in the hospital (the first week of which I was in the ICU), and only by proving to the staff that I was able to go to a store and gather ingredients to manage a meal for myself, I was granted a hesitant release. Technically, I was supposed to be under someone’s constant supervision for at least another six weeks, someone with normally functioning cognition, but it didn’t quite work out that way. I found myself out in the world, with a badly healed, crooked clavicle protruding like a knob from under my skin, and four ribs that hurt like hell every time I laughed or worse yet, sneezed. I found bits of dried blood in my ears; I was told that a fracture in my skull, and subsequent bleeding into my ears, had released the pressure from the subdural haematoma, likely saving my life. My moods would roller-coaster: I was elated that I had survived such an ordeal, and had such wonderful friends; then I would find myself confused and frustrated over what I knew to be simple tasks. I would leave the shared rental house, where I lived with three understandably concerned roommates, only to return minutes later having forgotten where I was going. I went through a half dozen debit cards in as many months by leaving them on the counter at a store, or inside the slot of an ATM. I would find myself at the grocery store searching my pockets for an incomprehensibly absent list. I would have the same conversations over and again with friends; I would make the same calls I had already made earlier that day and embarrass myself. 

It was during the first few days after my release from the hospital when it occurred to me that I would need notebooks. I purchased two pocket-sized notebooks from the neighborhood Walgreens and marked their covers in black Sharpie; they said, What To Do, and People To Call. They contained each day’s lists of errands, tasks, and conversations necessary for me to continue to function and recover. I had appointments, and calls to make nearly every day. Inside the front cover of the What To Do notebook was an explanation: You’ve suffered a brain injury. Your memory is damaged. You are in recovery. This was usually enough for me to begin to piece together the prior weeks. But, for those first few moments, each morning, I would lay in my bed knowing who I was and where I was; yet not understanding anything else. I would wonder why my alarm was ringing. Did I have a job to go to? Was I supposed to be somewhere? I had to relearn it every morning, each and every day, after day, after day. . . .

For the first six months of my recovery I woke up tired no matter how long I had slept—My eyes sat sore inside of their sockets for the entirety of the day. All-day exhaustion is normal for someone recovering from TBI; the brain needs energy to heal. Human brain functioning already requires more of our body’s energy than any other physiological system. When this particular organ is damaged the healing is exhausting. In rehabilitation, they would train me to track my energy. I learned to make notes of my energy level, ranking how I felt on a scale of one to ten. I would sit with a binder-sized calendar, multiple times a day, and note my energy and my mood so that I could ascertain if I had the resources to manage without having a total melt-down. Yes, there was some public crying, and some moments of completely confused panic. The binder was massive, allotting an entire page to each day of the month. Everything had to be recorded or it was lost. The energy assessments helped me to predict if I would have the cognitive wherewithal to attend a meeting with doctors, or lawyers, or the insurance company, or file any kind of paperwork on that particular day without making difficult-to-resolve mistakes. I had good days. I had not so good days. 

It seems to me that our perceptions of time, and how it functions, are completely tied to our memory and our mental processing speed. I’ve never done the research on this particular phenomenon. I can only speak about it anecdotally: in the early days of my recovery, the minute hand was whipping around the face of the clock, one day would bleed into the next, and I would find myself days later as if waking from a dream. Inside of those moments of lucidity, I would retain a memory, or recognize the gravity of my circumstance. A kind of moment of clarity. My memory was like a sheet of paper with large holes in it. If one were to lay this page over the terrain of my experiences (say a single day) I would only recall the experiences beneath the paper remaining between those holes. Only those experiences under the plane of retention were mine to keep. Everything else would be as if it had never happened. I was a time detective, piecing together my days through what evidence was available. I was a mess. I was broken. 

I started attending full-time outpatient, cognitive rehabilitation in July of 2007. Each morning, exhausted and bewildered, I would ride the Max from Northeast Portland, over the river, through the city-center to the suburbs just west of town. There, I would spend a full work-day, from eight in the morning, until four in the afternoon, practicing being; meeting with my psychotherapist, my physical therapists, occupational therapists, and speech pathologists. The dozen or so other patients and I would gather for a half hour lunch break each day. We ate boxed lunches in a small break-room, and smoked cigarettes in the sun at the picnic tables behind the building. We were shell shocked. It was like we all worked together at a brain damage factory. It was during this time that it sunk in how bad my fall had really been. Occasionally I would meet with visiting neurologists, colleagues of my attending physician. I came to realize that they were there because I was something of an anomaly. I remember one interview in particular, and the astonished look on the woman’s face as she looked over my chart while we talked. She seemed insistent that I understand just how lucky I was, what a miracle it was that we were talking at all.

From what little evidence there is (I was working above the gaze of security cameras), it seems that on the way down I had been flung head first. My feet must have snagged on the ladder as I fell. There was a wooden bench, and dark, stone flooring below. From how they found me, they say that I likely hit both. While the left hemisphere of my brain was bruised from the initial impact, the force of the fall was also enough to shake my brain in its case; to set it violently adrift in its shallow bath of cerebrospinal fluid, causing my frontal lobe to abrade on the craigy bones behind the sinus cavity. The damage was extensive. Severe. 

I was often sad about my situation. I spent every day working my ass off just to function as an adult human. Yet, I also experienced moments of enthusiastic euphoria. This type of experience is so well conveyed in Robinson and Sodderland’s film. In those times I was able to conjure a kind of preternatural optimism. I would unexpectedly find myself in tears over the exquisite beauty that qualifies our fragile human condition and the realization that I could have very easily lost my life that morning. Similar feelings seem to have been part of Lotje’s experience. I remember in my earliest sessions with a psychotherapist, explaining to her that while my neural pathways were indeed significantly disrupted, that this was actually an extraordinary opportunity: I’d decided that if there was ever a chance to tweak my fundamental programming in an effort at becoming a better person, this was it. I’ll never really know if I achieved that end. It could be that my personality changed a bit, some of my friends seem to think so. This is a commonly recognized effect of severe brain traumas. A good friend, who had spent some years working with the Peace Corps in Haiti, told me that many Haitians believe that a hard blow to the head can actually shake one’s soul from the body, leaving room for it to be inhabited by a completely new consciousness. There were times when I had to wonder if this wasn’t what had happened to me. Some of the people I know will attest to a change for the better. I have little choice now but to live out this post TBI incarnation. I’ll never really know who I was before.

I attended rehabilitation for nearly a year, running cognitive drills with speech therapists, practicing note taking and conversations with occupational therapists. I was trained in compensatory strategies; the techniques that I still use every day. I had my calendar in a three ring binder, and was told to get a digital watch that not only displayed the calendar date, but also showed the days of the week. I was learning to write everything down. To repeat what I’d written back for confirmation before hanging up the phone. Nothing in the past was certain. They were also helping me to say what I needed to say in a way that others could understand, rather than to wind along some meandering tangent, inevitably dead ended inside of my working memory deficit. They call this goal of linguistic accuity, verbal expressive clearity

It was during this time that I began to write in a journal. In the evenings I would sit on the porch of that run-down rental house and write. I wrote whatever came to mind. I wrote imagined dialogues between people I had never met. I wrote my aspirations, and my regrets. I wrote to remember; to remember what I had thought, and had felt. I wrote on the crowded Max train on my way across town in the morning. I wrote at the neighborhood cafe. Later in my recovery, I would go out to bars and drink soda water, or cranberry juice, and write, in spite of my exhaustion. I felt as if I might retain something of my fleeting life if I could only capture as much as I could onto the page. 

The relationship between time and memory is strong. We do not get to keep those moments that we cannot remember, this changes our perception of time, temporally collapses our narrative. I needed to know that I was living. I needed proof. From then on, I carried a hard-bound notebook with me everywhere I went. I had learned a secret: in the act of recollecting events or ideas in order to commit them to the page, I was performing a ceremony of repetition. What are memories really, but the reverberations of ideas and experiences, historical / biographical performances? They are repetitions of repetitions. This is how memory works. It’s a meta-narrative.

I’d always been a reader, but I had never kept a journal, much less a calendar. Before my accident I had possessed what I now understand to have been an exceptional memory. I didn’t, usually, need to write things down. If I had an appointment, or someone had said something important to me, I could commit it to memory and keep it there. I know that this is true because of what I’ve retained from before the fall. My memories are more vivid and more frequent from that earlier part of my life, prior to my accident. While writing was a remedy, it was far from a cure. I, of course, ran into some sneaky cognitive problems: I would leave words out, and transpose others. At first, it was madness on the page, chicken-scratch. Yet it was cathartic, and it was helping me to heal. I’ve looked through those early, post injury journals and they’re nearly illegible; even to me, the handwriting is virtually unintelligible. If I spend time with those pages, I can usually decipher the surreal symbology and unlock some of those memories. But it was by the act of intentionally revisiting my memories, pen to paper, several times a day, that I was to retain some of them. The page had become a part of my memory. I’m certain that the repeated exercise of writing each day helped me recover much of what might have been lost without the practice. The external apparatus of language, and repetition through language, was augmenting what was broken inside of my mind. A kind of mental prosthetic.  

Writing was also an act of resistance against the miserable consequences of a doggedly stubborn injury. When I had checked out of the hospital the neuropsychologist assigned to my case leveled with me. He said it would take ten years before I would reach the apex of my recovery. He hadn’t exaggerated. Today, I’m fourteen years out from that fall, and I’m still practicing those strategies that I learned in rehabilitation. I’m able to write this today because of my dedicated labor; and the support of some of the best people I’ve ever known. As the year progressed my handwriting settled into something less wildly illegible, my energy improved, and my perception of time seemed to normalize. 

I will likely always have to contend with the long-term repercussions; they will always be a part of me. My memory deficit is still a considerable learning disability, regardless of how diligent I am. This world isn’t really structured for someone like me, for someone who is neurodivergent. Because I’m slower than most people to process new information, to retain it, to write, I can find myself feeling inadequate as if my talents are meaningless because they are slow to materialize. That the merit of my work is primarily judged by the speed with which it is accomplished. Our contemporary world is structured as a competitive, post-industrial, capitalist-meritocracy: The more efficient the processes of production, the more profitable the product will be for the producer. Slowness is a synonym for daftness, or laziness. Slow people are ineffective wage earners. Losers. Speed is king. It’s almost a natural law. 

It was during the winter of 2015, eight years after my fall, when I finally had the chance to finish an undergraduate degree. Over the next three and a half years I completed a BFA in creative writing. I’ve been an artist my whole life. Regardless of the medium, I was going to pursue the mastery of a craft. During my recovery I also completed a series of large paintings, one of which was exhibited in a national juried exhibition, as well as other drawings and sculptures. Yet, it was through the medium of text that I was able to access the immediacy and intimacy that I’d desperately needed in order to adequately augment my perception, and begin to build something new in place of those things that were missing. One thing that I’ve learned from my decade-long recovery is that anything worth doing in life comes about from trying hard. While watching My Beautiful Broken Brain, I couldn’t help but feel an affinity for Lotje Sodderland: I felt a familiarity, a kinship, in the extraordinary effort that defined her rigorous recovery. Part of that work was through integrating an artistic practice, documenting her days and weeks; working every day to fill in those spaces that might otherwise remain empty, to manufacture a life through practice and craft. For Lotje it was through the medium of film, and for me it’s through text. All of the pages that I’ve generated over the years, all the notebooks are a testament to my effort; they are an intentional part of my cognitive conception. Writing isn’t just something that I do, it has become an inseparable part of who I am.


Image: August Amoroso