Writing Away the Stigma: 'It's like the words are falling out of my mouth'
Nine people shared stories of their mental illness in Pittsburgh in May as part of a Creative Nonfiction Magazine project to fight the shame and embarrassment that often accompany the illness, which is estimated to affect one in five Americans each year. The Tribune-Review printed excerpts from some of the essays May 31 and has published full versions of six of them online.
I was so startled by the noise in my head that I stopped in the middle of my sentence, in the middle of my presentation on cognitive reorganization.
Of course, as I recognized, there was no actual sound. But zam! was the exact noise that seemed to shoot from the Teaching Fellow's intense, blue eyes. The meaning they communicated was unmistakable to me: You are smart, and you are special. In the year and ten months since my accident, I had forgotten what almost everyone else knew implicitly, that a person's eyes could hold a statement so resoundingly clear.
I had been back at college for over a year. That meant over eighteen months had passed since my injury: the eighteen months my neurologist had given me to achieve “recovery.” The eighteen months during which my injured brain, he had solemnly reported, could be expected, according to magnetic resonance images, to change. With stoic objectivity, I had inferred from his statement that eighteen months was the period during which I could be expected to change. Thus on December 12th of the previous year, which marked the end of that period, I had resigned myself to being the person I currently was: clumsy, quickly tired, emotionally flat. I had fixated my own eyes in the mirror, and thought, You will never fill with tears again.
Now, as I stood frozen at the front of the classroom, came a dramatic change in the way I perceived the world: statements had started shooting from people's eyeballs. Since the accident, I had felt like the wires connecting me to other people were split and frayed. Now, a spark had jumped the gap to create a complete, if fragile, circuit.
Though the location of the Teaching Fellow's message, his eyes, had struck me momentarily speechless, the content of the message itself — that I was special, unique — was something I had come to expect, at least since reading the chapter he assigned in the neuroscience book a few weeks before. After reading that chapter, I had begun to see myself as “LG:” a unique creature to be identified, like all brain-damaged subjects in the neuroscience literature, by my initials.
I was entranced by the chapter about Elliott. In my cozy dorm room, I leaned on the armrest of a desk chair held together by duct tape. Hypnotically, I stared at the photocopied pages in my seminar binder. Elliot had been “found” by a famous neuroscientist, Antonio Damasio. His brain had been damaged during an otherwise successful operation to remove a tumor, ablated in a region that may or may not have been lesioned in my own accident. Before the operation, Elliott had been a successful businessman, a faithful husband, a loving father. Afterward, Damasio writes, his life fell apart. Unable to stay on-task, he was repeatedly fired from jobs. He divorced his wife and had, as Damasio puts it, “a brief marriage to a woman of whom neither family nor friends approved.”
Like any good scientist seeking to explain a present observation, Damasio searched through past impressions. What struck him about Elliot and about many patients with lesions to that brain region was the flatness of their facial expressions, their lack of gesture, their monotone voices. They seemed intelligent, even highly so; but if one spent some time with them, it became clear: something was missing.
Damasio devised a clever card game that, unlike standard tests of I.Q., memory, or even moral reasoning, could expose such patients' deficits. When “normals” played the game, their performance of risky moves was always accompanied by imperceptible sweating or cringing, cringing so subtle that only a specialized apparatus could detect it. When patients like Elliott made the same risky moves, though, they would neither cringe nor sweat. Unlike “normals,” furthermore, they would repeat the risky move again and again, performing more poorly in the game as a result. Damasio concluded that it must be the series of physiological signals that characterize emotions, like cringes and little beads of sweat, that point normal people away from unwise choices, in card games, in jobs, in life.
When I read this chapter, swiveling in my lopsided chair, I watched the formation of a flat combination of fear and hope in the back of my mind -- “flat” because my demeanor, like Elliot's, had been characterized by muted emotion since my injury.
Like Elliot and his ilk, I wondered, was I unmoored?
At the same time, this similarity to Elliot made me interesting, fascinating, in the intense blue eyes of a certain Teaching Fellow with an engaging smile.
Struggling to make sense of this strange combination of fear and hope, I wished it would make my heart pound and my palms sweat. Instead, it swirled ceaselessly in my mind like wet laundry.
After I came out of the coma, my parents would sit at the edge of my hospital bed. When I was awake, and not in cognitive or physical therapy, we would hold conversations.
My brain had been injured in an accident, they explained to me slowly, their eyes wide to check for understanding. I stared back with a frank innocence more befitting a toddler than a college student. A tractor-trailer hit my minivan, they said, as I was turning onto Battleground Ave. It was called a Traumatic Brain Injury, or TBI.
Brain injury. Brain. Neuron. I knew I knew those words. I knew them from Behavioral Neuroscience. A course. A course I had taken last spring. Over the next days and weeks, words and their associations floated through my mind, recalling snippets of facts, bits that I had drilled laughingly, over microwave popcorn with friends, while studying for exams a month ago. The facts would piece themselves together until, finally, I happened on a memory complete enough to express.
“I remember,” I announced to my parents, the contents of my mind tripping over my tongue, “we learned about brain injuries in Behavioral Neuroscience last year. There was an experiment with brain injured people, and they flipped cards from different decks . . . and the way they played was different from normal people,” I tried. “And . . . something about emotion, I don't remember, exactly.” I furrowed my brow, confounded, grasping for a concept that was still too deep to reach.
My parents, unable to share in my enthusiasm, nodded slowly. It was a nod I saw frequently that year, a nod I came to recognize as a sign that I had uttered something quite inappropriate in the normal, feeling world.
A week before the presentation on cognitive reorganization, but after reading about Elliot, I had e-mailed the Teaching Fellow to ask if he wanted to hear about my brain injury. If he wanted to hear about -- though I didn't say this – my newfound interestingness as “L.G.” He was the one who suggested meeting at a bar-restaurant near my dorm for lunch.
Unused to the formality of any place besides a college cafeteria, surrounded by trendy music and dark wood paneling, I was dazzled by the intermittent flashes coming from his eyebrow piercing and gleaming teeth. I remember that I annoyed myself by twirling my forefinger around the rim of my water glass automatically and incessantly, around and around. Sincerely curious, he delved deeper into my experience than anyone ever had.
What the first thing I remembered was, when I woke up from my coma.
“Well,” I stammered. “Well . . . so, it's not like you just ‘wake up.' Not like in the movies. There was a period of time, I don't remember it, when I would try to throw myself onto the floor from my hospital bed because I thought I was in a nightmare and wanted to wake up. My parents would try to stop me, of course, and I would, literally, punch and kick them as hard as I could.”
Whether my physical deficits, like the inability to feel temperature on my left side, annoyed me.
“Well . . .” I was embarrassed even to discuss it. “It's hard to talk so slowly in front of other people. Knowing my voice sounds, basically, babyish.”
His earnest eyes were undergirded, as always, by a warm smile. “I don't think your voice is especially slow. Was it different before your accident?”
Taken aback, I thought that he was just being nice. “I mean . . . of course. I talk really slowly now, but . . . I figure, that's that.”
“I really don't think you talk slowly.”
There was a silence as I looked at him searchingly. “Really?”
“No. Really. Maybe it just seems that way to you, since it takes more thought to form words.”
I stared at him in incredulity, letting this sink in. I talked normally: my world had just expanded.
“Sometimes,” I blurted excitedly, “Sometimes, lately, I don't have to talk so slowly. It's really weird.” I fumbled for words to describe the glorious sensation — or lack of sensation — of letting the meaning of words “ping” off my tongue, the way normal people do all the time, instead of forcing my recalcitrant tongue to sculpt meaning from strung-together syllables. I settled on an analogy: “It's like the words are falling out of my mouth.”
Surprised at my own outburst, I settled back in silence. Of course, I didn't mention to the Teaching Fellow just when words had started, subjectively, “falling out of my mouth,” with every statement I made. I knew precisely: it was when he had first invited me out for lunch.
A week later, as I gave my presentation on cognitive reorganization in the bland white classroom, buoyed by that meaningful blue-eyed gaze, my voice increased in volume as I let the words tumble forth.
“In conclusion,” I stated, my own gaze riding a wave of confidence over the desks, “during the past two decades, it has been shown that training following acquired brain injury can bring about improvements in motor and sensory abilities, like playing music or feeling Braille letters, that have a huge impact on everyday life. So it is surprising that in clinical rehabilitation settings, much precious time is wasted on the training of vaguely defined cognitive abilities, like memory and attention, that, research has suggested, cannot be improved directly through external efforts.”
I breathed out, leaving the tiny room to be filled by the hum of the overhead projector. Giddy, I ignored for the time being the implications of my final pronouncement. Deep down, though, I knew: the restitution of my emotional abilities, being just as “vaguely defined” as cognitive ones, depended on the recovery of crushed but uncaring neurons. According to my own conclusions, all I could do at the present time, to help along this restitution, was: wait.
After the hospital came outpatient rehabilitation: physical, speech, cognitive. I clasped a pencil awkwardly in my left hand, my right being too uncoordinated, and drew a line from triangle to triangle on a worksheet spattered with shapes. I sat at the edge of an exercise mat on a wooden platform, offering a beach ball to the left and right, left and right. I remember, while performing this latter task, a therapist staring at me unblinkingly, as if I were an object. I wanted to scream, to remind her, and remind myself, that I was a person.
After two months, just before my insurance ran out and outpatient rehab ended, my mom approached the rehabilitation doctor, a short, skittish man, with a worried question. “We've noticed that her emotions are still . . .” she paused, as if embarrassed to say it. “Muted.”
The doctor blinked nervously, grappling for a response. “Well,” he stammered. “Well, she was going to Harvard . . . it doesn't seem like she was a very emotional person to begin with.”
It is true that I have always been deeply engrossed in my studies, particularly of neuroscience. I do not remember the morning of the accident. But my memories from the summer weeks before it include carting around a copy of Seeing Voices by Oliver Sacks.
The rehab doctor seemed to think that such a bookish, placid demeanor always translates to a lack of emotion. It seems impossible truly to remember an emotion, separately from its external signs, so I can only wonder whether this is accurate: whether I experienced deeper passions before my accident than I do today.
I know that the spring before my accident, tasked with composing a personal essay, I chose to write about a brief romantic relationship. I remember grasping for a way to explain my silly, starry-eyed behavior, and concluding that some common human experiences, like falling in love, are only comprehensible to us via stories. Stories, I decided, are no more and no less than what bind us together. Although my conclusion, stories bind us together, was no less cliché than my silly romance, this was only because it stemmed from an experience that so many of us share. How one comes to the realization that stories are what bind us together is, itself, a story.
I ended my essay with a quote from philosopher Alisdair McIntyre:
We all live out narratives in our lives and . . . understand our own lives in terms of the narratives that we live out . . . the story of my life is always embedded in the story of those communities from which I derive my identity.
A vision of the Teaching Fellow's intense blue eyes propelled me through my summer that year, to an internship far away, with the Head Injury Society of New Zealand. When I first signed up for the internship, that past winter, I had simply hoped to facilitate the transfer of useful information between families including TBI survivors. The kind of information — like TBI survivors often have muted emotions — that would have benefitted me enormously. Now, I also secretly hoped that my observations would form the basis of neuroscientific hypotheses that would, with the Teaching Fellow's caring guidance, launch my illustrious research career.
Once I arrived in New Zealand, after getting the lay of the land, I decided that the best way to achieve these ambitious aims was to interview as many members of the Head Injury Society, who were people with head (or brain) injuries and their families, as possible. The Society's “Field Officer,” a plump, grandmotherly woman with hair dyed an unnatural shade of burgundy, who had rented me her basement apartment for the summer, was to be my transportation.
The Field Officer turned into the dusty driveway of Helen Davies' parents' farmhouse, modest but perched on acres of rolling emerald hills. Helen, my first interviewee, was thirty-one years old; since a car accident six years ago, she had been blind and, most importantly to her, unable to speak. Inside, sitting at the kitchen table, I flipped through her scrapbook while her caregiver sat beside her wheelchair, patiently inserting spoonfuls of strawberry yogurt between her lips. As Helen's mother bustled about the kitchen and responded to my polite questions about the family's dairy business with one-word answers, I felt more and more like a stranger, encroaching on the family's private territory. As minutes ticked by, the hard chair pressed painfully against the backs of my thighs.
When Helen finished her breakfast, I mechanically began asking my prepared questions. How did you get your brain injury? When and where?
Since Helen could not speak, she did not respond to me directly. Instead, she delivered answers through her caregiver in the special language they had devised together, spelling out her responses as necessary, often letter by letter. For the letter “I,” she blinked her eyes; for “U,” she gazed Upwards. Some words, like “phone” and “horseback riding,” had their own sign: a hand to the ear, clicking noises to imitate the sound of hooves.
If her mother had been reticent, Helen nodded and gestured emphatically, seeming to burst with the desire to share her story — as eager as I had been, at what now seemed like a long time ago, across from a flashing smile in a dark bar-restaurant.
That first interview was followed by another, and another, until my Ziploc baggie of mini-cassette tapes, labeled by name of interviewee, started gaining heft. To my surprise and delight, most people with brain injuries I met were eager to tell me the story of their injury, just as soon as they learned I had had a brain injury myself. It seemed as if their stories had been blocked like water in a pipe, gaining pressure until someone capable of understanding could release them.
I found, however, that their responses to my canned questions were more than just replies. I had expected these responses to fit into the boxes created in my mind by my scientific training – one for the physical effects of the injury, one for its cognitive effects, one for its emotional effects. I had planned to mold these responses into engaging stories, making a repository of information palatable for the general public. Instead of crystallizing into boxed facts, though, I found that the interviewees' answers congealed into narratives that were already, without my editorial meddling, their own.
After conducting the first few interviews, I faced the glow of my laptop, remembering how Helen Davies had proudly described her recent completion of a 5k race without the aid of her wheelchair, using only her walker to support her. Then my fingers moved by themselves, as if floating over a Ouija board, to type the first line:
After three hours and forty-five minutes, Helen Davies crossed the finish line.
TBI is not usually categorized, either by the medical establishment or by the general public, as a mental health problem; it is a neurological problem. The relationship between the mental and the neurological, or between the mind and brain, is far from settled; but one does not have to endorse a one-to-one correspondence to realize that mutilating neurons eats holes in the person who owns them, including in all the interlocking stories that place her in the world.
Neuroscience and neurology have benefitted from centuries of scientific analysis: the separation of facts into their constituent elements. An important part of what is injured in TBI, though, cannot be picked apart in this way. Where neurology focuses on the wires frayed in TBI, the study of mental health allows itself to address current-bearing circuits that are constantly rebuilt. After my injury, studying neuroscience led me to the conclusion that I should wait for the spontaneous recovery of my deflated neurons, blankly observing the world through a window until better evidence emerged. My mental health demanded, though, that I continue to live.
I sat close behind his broad back, the two-seater bicycle stretching below me like a stallion at rest. I had not attempted to ride a bike since my accident over two years ago, and the thought of surrendering my uncertain balance to two narrow wheels would have terrified me, had not Brett been there to guide me.
“I'll start with my right foot,” he instructed, “So you start on that side too, and then put your left foot in the pedal when I tell you. Ready?”
Much of my time in New Zealand would have been spent alone, in the dark den of my basement apartment, if Brett Rossitter and his family had not befriended me. Brett, former president of the Head Injury Society, had sustained a brain injury in a bicycling accident. He, his wife and two young daughters had me over for “tea” (as Kiwis, or New Zealanders, call dinner) on many occasions, when they would serve me local specialties like New Zealand lamb. On weekends, I would squeeze in their little car and make pilgrimages to the country's gorgeous vistas.
Brett and I would often go running together, me clumsily following his lanky runner's stride. One afternoon, though, he changed his plans. “I'm too full of food, after those scones! I think we should ride the tandem bike instead!”
Most of Brett's sentences ended in exclamation points; whereas my brain injury had resulted in a blunting of emotion, his had led to an intensification of feeling that left me exhausted after we spoke.
Brett and his wife had a two-seater bicycle on which they toured the countryside. Back at his house, I watched him pump the tires. “Have you ridden a bike before?”
He stopped pumping and looked at me, pushing his tiny, rectangular glasses back on his nose. “Since your accident?”
I was worried he would ask that. “I don't think so.” he seemed to sense my hesitancy.
As we walked to the high school parking lot leading to a narrow asphalt road through campus, I shut my eyes and held my hands out in front of me, picturing handlebars. The position seemed natural -- or so I told myself.
Now, there was no turning back.
Brett bellowed, “Push . . . now put your left foot in! Put your left foot in!”
Magically, we glided toward the low, brick school building. There was a long, brilliantly pink cloud in front of us, with the daytime moon above, florescent white in the late afternoon. My legs pedaled in an easy rhythm, and I smiled.
During those months in New Zealand, my visceral feelings blossomed, beginning finally to gain control of my body. I would curl into a ball on my bed, letting my head ring with the clanging coming from the basement on the other side of my closet wall, where the Field Officer's husband kept his metalworking shop that sounded like the pit of hell.
The visceral emotions may have blossomed, consonant with my neurologist's prediction long ago, simply because the neural machinery supporting them had recovered spontaneously, possibly even months before my journey. I had only had to place myself in an environment that triggered feeling, like the one I had found myself in that summer, for emotion to flow.
It is also possible, though, that the restitution of my physical emotional responses would not have occurred on its own. That is, it is possible that -- as I had mused in my essay, even longer ago, about falling in love – stories really are what bind us together. As I listened to the stories Head Injury Society members, and shared one of my own stories with them, their stories became a part of mine, and mine became part of theirs. Story-swapping pointed me to my place in their community, allowing me to become a character, part of a plot shuttling through ups and downs, and who thus had a reason to feel.
Sometimes, curled into a ball on my bed in that basement apartment, I would purposely conjure an image that, as I had discovered the previous spring, was likely to make me cry: a gravestone carved with my name. 1980-2000.
Sometimes, I imagined myself as my parents must have seen me in the hospital, clawing desperately at them with skinny arms accustomed to ballet poses. At those times, shortly after I had “emerged” from my coma, only my neat ponytail distinguished me from a wild animal. It would still have been matted with sweat and blood, had my mom not spent hours, while I was still comatose, smoothing it with a brush.
I held in mind one of my first memories after my coma: the sound of my dad's voice, suddenly recognized as the voice that had once read me detective stories, pleading in the background as my flailing limbs continued uncontrollably to claw at his shirt. Occasionally, when I accompanied these images with sob-like shudders, my efforts would pay off: my eyes would moisten, and I would continue “sobbing” until fatigue swept over me. I would then stare at my reflection in the bathroom mirror, fascinated at how my eyelashes had clumped into pretty little triangles.
I became so good at calling to mind sad thoughts that eventually, they would not stop. On afternoons when I sat in my lonely box of an apartment, when the Rossiters were having tea on their own, the foreboding anecdotes that had peppered all of my interviewees' stories began to haunt me. Some interviewees had told me about devastating attempts to re-establish pre-injury jobs. Stinging rebuffs by former friends. The words of one interviewee, in particular, echoed in my mind:
I kept trying and failing, trying and failing.
I began to see where prejudice and acknowledgment, where the attribution of stupidity and the recognition of cognitive impairment, blended into each other. Curled up like a centipede, face down on my bed, separated from Dante's inferno by a mere closet, I longed for sleep as memories smoldered.
There was the time when I had suggested to the Field Officer that I interview a particular man who was a regular at the Society's outings. I had noted him because I wondered what lay behind his thoughtful green eyes.
The Field Officer – who, as she made quite clear, was not herself head-injured -- had patted her shellacked-in-place curls primly. “Oh,” she made a dismissive gesture. “That's Derek. You don't want to talk to him. He talks so slowly.” In other words, I thought, he is not worth listening to.
Always, a figure ran back and forth through my mind, the figure of a man engulfed in flames. This was the brain-injured man I had heard about my first day in New Zealand, who had doused himself in gasoline and then lit a match. Like so many of my interviewees, I guessed, he could not find the right type of help.
During my summer in New Zealand, I missed the intense blue eyes that had first accompanied me there. Yet when I returned to Boston in the fall, I found myself impossibly separated from them. A part of me still wanted to be guided by those eyes – but I could no longer see myself as L.G.: a creature with a damaged brain and thus, as many inferred, with a damaged soul.
Love calls us to the things of this world.
-- St. Augustine
The semester after my internship, I spent most evenings sealed in my dorm room. I do not know why I accompanied some friends to a swing club in Inman Square on that particular night. But something had awakened a sudden hope in me, and my fingers were tingling when I met them at the bus stop.
After the lesson, he asked me to dance. Sticking to steps we had just been taught, surrounded by enough of a crowd that mistakes could be blamed on other couples' missteps, we eyed each other with a similar mixture of shyness and playfulness. As the night wore on, that similarity became a connection, and I was swept away by the warm roar of voices all around me. Though I had only drunk water, when my friends and I stumbled home, the impropriety of having scrawled my phone number on a napkin made it difficult to walk. By summer, I had moved into his apartment; and two years after my summer in New Zealand, this man, who is now my husband, watched me graduate with honors for a thesis on non-verbal communication.
The messages that come shooting out of people's eyes are one type of non-verbal communication. Non-verbal messages can also lie in the shy, playful glances of a dancing partner — inspiring, for example, trips a mental health counselor's office, where a tangle of experience can begin to become a story.
Lisa Guttentag Lederer, 35, lives in Pittsburgh. She's been diagnosed with a traumatic brain injury.