I wake up in a bed I don’t know. Yellow lights, soft sighs, and three girls lying nearby on the same stiff mattresses. Everything is institutionally white: the bare walls, the tightly tucked sheets, the low ceilings, and the grizzled carpet. The sheets feel like sandpaper, rough against my skin. Memories float back, hazy and fleeting. I see ambulance lights, pills lined on cold bathroom tiles, your face in front of me as I pushed them to the back of my throat and swallowed.
This wasn’t the first time I had been in an ambulance. Once, as a child, I remember my mother on the phone, the curly beige cord looped through her fingers, twisted around her wrists. She leaned against the doorframe cradling the phone between her neck and chin. It was a sultry, summer day and she batted at me impatiently as I clenched her knees, straining for her attention. I remember crying when she told me to go outside and play. Leaning over, she swiped me, hard, against my left cheek. I was startled by its sting and started shrieking as she eyeballed me, unblinking and hateful. I remember the screen door creaking and her hand on my chest as she pushed me down the steps. I reached out for her, wedging my hands between the door frame to stand up. My mother whipped around, looked into my terrified eyes, and slammed the door as hard as she could.
I know it wasn’t an accident. She could get away with harming me; for a second no one was watching. The blood rushed from my third knuckle; part of my left middle finger was on the ground.
I don’t recall sirens from when I was four or when I was twenty; I remember the ground. Chilly white tiles when I was older, blazing cement when I was younger. “Pick it up,” my father screamed, like it was my fault. As an adult, they told me my finger didn’t detach, that a slice was lopped away, but no more. My mother shrugged when I asked and my father claimed the tendons held on. Years later, before he died, I took a chance and asked my father what happened. I will never forget his expression: he looked me in the eye, the gin translucent in his glass, and said clearly, “Yeah. It was hanging off. I held it in the ambulance so it wouldn’t fall.” Only a handful of times do I remember my father looking deeply ashamed in relation to my mother, and that was one. I never told my sisters. I don’t think they would’ve believed me. Although memory is fickle, even if I imagined the result, the part that mattered was my mother’s indifference.
The real story is this: The doctor reattached my finger from the third knuckle, but they couldn’t save it all. The tip is missing, the soft fleshy pad darker than the rest. Sometimes my knuckle twists and pops, and I envision a bloody stump on the hot cement. I remember feeling nauseous staring at the ambulance’s ceiling, an oxygen mask over my face. At home, I laid on the brown carpet, looking into my father’s brown eyes. My mother wasn’t in the ambulance; she was barely in the living room. She sat to the side, smoke curling towards the ceiling, calm and aloof. Her betrayal is fused into me; I’m reminded of it every day when I play the guitar, comb my hair, slide my fingers into gloves for harsh Michigan winters.
Those who struggle with mental illness live in a constant state of vulnerability. The systems designed to protect us sometimes take advantage of us in the worst ways. My mother enabled my illnesses, but she couldn’t have prevented mine—or hers. So I did what I needed to do to begin healing: I left. Suffocated by untold stories and unanswered questions, I moved to Pittsburgh, a city I’d never been and didn’t know a soul. I don’t regret anything. I want to believe that happiness is not found in the bottom of a wine glass, that joy is not linked to luck. I brought my stories with me to channel heartache into art, to make a positive change in the community and in myself. I still struggle with feeling like happiness is expendable, that a finite amount of it exists in the universe. But as the lump in my chest dissolves, I recognize there is mercy in chaos and opportunity in redemption.
* * * * *
Camille Chidseyis the author of one of the essays from Lee Gutkind's most recent workshop on "Writing Away the Stigma."
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 mentalhealth 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.
 Alasdair MacIntyre, Virtues, Unity of Life and Concept of a Tradition, pp. 197 – 205.
* * * * *
Lisa Ledereris the author of one of the essays from Lee Gutkind's most recent workshop on "Writing Away the Stigma."
I follow the receptionist through the turquoise and white blowout bar past the counter where women perch sipping Bellinis while their hair is dying and their nails are drying. She seats me at a makeshift station set up in a private back room. This is where they serve women whose religion doesn’t allow men to see their hair. My stylist, Kat, does not look alarmed when I remove my wig and shove it into my handbag.
I pull out bobby pins and shake my long hair down my back as Kat says, “We’ll do your color first. What were you thinking?”
“I would like to cover my gray and match my natural dark brown color.”
“I think some red and caramel highlights would look good. Is that all right?”
“You’re the professional. I trust you.”
Kat leaves the room to mix the color, and I breathe in deeply for six counts and out completely for eight counts like I had learned in therapy to calm myself. Kat and I haven’t discussed how she would cut my hair, and I worry it still isn’t long enough do anything fashionable enough to allow me to lose the wig. My last time in a stylist’s chair, 6 months ago, was disastrous.
That summer day I asked a different receptionist in a business across town, “Would you mind if my daughter sat in your waiting room during my appointment? She brought a book and she’s quiet.”
“That would not be a problem,” the woman said. “But you won’t come back out this way. Clients leave through a separate exit. For privacy.”
Resigned to the fact my 10-year-old would have to accompany me, I settled into a chair in a waiting room very much like a doctor’s. There were lifestyle magazines on a coffee table, a fake Ficus tree in the corner and cheap prints of flowers on the walls. Before long an assistant called my name and led us through narrow corridors to the treatment room.
Seated in a hair stylist’s chair by a sink opposite a display of wigs, I felt like I was in a beauty salon. Yet the privacy of the room and the rubber gloves and unfamiliar tools made it feel sterile. I held the clipboard and filled in blanks. I was hoping to get an integration, a semi-permanent hairpiece that is sewn onto existing hair, to cover the bald spots on my crown and blend into my natural hair. It would be cooler than a wig in hot weather and would not slip – meaning I could finally swim and ride rollercoasters.
A few minutes later, the owner of the hair replacement practice entered the room. I looked closely at his hairline to see if he had plugs. I removed my wig and he looked closely at my scalp, moving some strands of hair. I peeked at my daughter; I felt my forehead flush when I realized she was taking in every bit of the exchange, her Harry Potter book forgotten between her thigh and the chair’s armrest. I was embarrassed that I was weak in front of her. Like I was setting a bad example of negative self-image or covering up a problem instead of solving it. I felt almost naked even though she had seen me bareheaded many times. But I never pulled my hair out in front of her.
I have trichotillomania, TTM for short, the uncontrollable urge to pull out hair strand by strand, causing baldness in extreme cases. I seldom wore a wig or scarf at home with just her and her father. When an unexpected visitor knocked on our door, she would snatch my wig or scarf or hat off a chair or table and run to me so I could put it on before I answered. To her, covering up my baldness and keeping my secret seemed normal. I resent the reversal of the caretaking roles.
“Your hair will have to be longer before we can attach a system,” the owner said, snapping me back into the present and the treatment room. Hair replacement companies call their products “systems”, which I guess is preferable to the slang “weaves”, “rugs”, and “plugs”.
My chest tightened and my head buzzed so that I could hardly hear him as he showed me new wigs I could wear while my hair grew out.
“You’ll need two,” he said. “You will have a spare to wear while you send one back to us for cleaning and styling. Whatever you decide you have to replace that ratty old thing.” He gestured to the 15-year-old brown bob in my lap and my cheeks burned. He did some calculating; the monthly installment plan was not interest-free. His assistant thrust a catalog of wigs and the price quote for $2,000, not including the regular maintenance, into my hands and showed us out the back way.
In the parking lot I phoned my husband. It was a short conversation.
“I would rather spend that money on therapy,” he said.
My eyes filled with tears; my past attempts at therapy had been a waste of money and time.
* * *
My first therapist was my pediatrician’s wife, and I met with her in his office. She gave my mom a photocopied magazine article to explain my diagnosis. That was in 1988, when I was 11 years old, and information about treating TTM was more limited than it is today. My case isn’t as severe as some I’ve read about; they pull every hair on their bodies including eyebrows and eyelashes. Some eat the hair – a condition called trichophagia – and have intestinal problems, basically a hair ball, and it can be fatal.
On the rare occasions, I have revealed my disorder, the first thing people say is ‘Doesn’t it hurt?’ I tell them that pulling out individual strands of hair by the root does not hurt the way it feels when a clump of hair is pulled out.
But how does it feel? Well, physically there is a release when the follicle lets go of the hair’s root. Psychologically, there may be some small relief of mental or emotional pressure. I believe this is where the idiom “so upset I could tear my hair out” originated. Hair-pulling, sometimes done unconsciously, can be soothing to someone having anxious or upsetting thoughts. Think about a child sucking her thumb.
I probably had signs of the disorder years before my diagnosis. As a young child I liked to rub my eyelashes between my fingertips. TTM is often about sensory experience; the fingertips caress and select a single hair and tug, sometimes rubbing the hair across the lips, then another and another. It is a body-focused repetitive behavior, like its cousin, skin-picking. Sometimes tension builds up in my chest and stomach; I feel really anxious and my fingers fly to my hair.
To keep my hands busy, my first therapist gave me a foam stress ball to squeeze. She encouraged me to snap a rubber band on my wrist when I caught myself pulling. I learned many years later the technique is called a competing response. At her office, she asked me why I pulled. I was 11; I didn’t know. Twenty-eight years later I still can’t explain the relief or release or reward I got when I pulled. I also don’t know why my mom stopped taking me to that therapist. I hadn’t been effectively treated.
* * *
Kat returns to the room and commences painting color onto sections of my natural hair she then wraps in foil. If she is curious about my condition, she doesn’t ask, except to see if I would be comfortable getting my hair rinsed beside other women in the open salon. I am.
Until now, I had dreaded the stylist’s chair and would go years between haircuts. Explaining the bald patches on my scalp to a stylist – or worse, removing a hairpiece or scarf in front of other customers – was too embarrassing to face. While realizing I wasn’t bringing much to the chair for her to work with, I still desired to keep the relationship with the stylist “Don’t ask; don’t tell.” I hated answering questions but my standard response was “Stress makes my hair come out,” which was close to the truth. I hid the bald patches with headbands, hair clips, scarves and hats. At my lowest points, I wore wigs.
My mom bought my first wig at a store in the mall – a hot, scratchy hairpiece in an unfashionable style. It was wavy and looked like it belonged on a middle-aged woman. I wore it in 8th and 9th grades with a wide headband because I was afraid the wig would slip or blow off, which made me look like Annette Funicello in a 1960s beach party movie.
In the best of times, I would stop pulling and my hair would grow back. TTM can relapse and remit. In the worst of times, I covered the problem with scarves, hats, and wigs. The year after I turned 21 should have been the best time of my life. I was newly married to my high school sweetheart. I was a newspaper intern and a journalism student. Life was good, but the pressure was great; I pulled out handfuls of hair. When I could no longer cover the bald spots, my mother ordered from a catalog a new wig in a brown bob.
Over the years I occasionally sought treatment. I tried the antidepressants Prozac and Luvox because I had read that selective serotonin reuptake inhibitors were effective in treating obsessive-compulsive disorder, which is what researchers used to classify TTM as. Now they see it as an impulse-control problem.
At another time I saw a psychiatrist, who took notes while I rambled about my stressors, mainly a toxic boss, for an hour. She left me to figure things out for myself. She never told me how I was progressing and she certainly never mentioned when my treatment might end. I pulled more. I stopped seeing the shrink in 2007 when I quit my job because of the stress. The crown of my head was nearly bald. I covered it with scarves for the next three years, until 2010, when at a dress rehearsal for a concert, I realized the scarves were no longer giving enough coverage.
* * *
Poinsettias ringed the dais beneath a gleaming wooden altar in the 100-year-old church. The Community Chorus was dreaming of a white Christmas. I was praying the singers standing on the risers above and behind me were not looking down at the top of my head and seeing what isn’t there. My face felt as red as the Christmas flowers.
I drove home and went straight to my bedroom. I stood on tiptoes and felt around on the shelf in my closet for a metal pail printed with flowers. My fingers closed around the handle and I pulled it down and pried off the lid. Inside was my old wig, the brown bob of synthetic fibers my mom mail-ordered more than 10 years before. I washed the wig and hung it to dry and accepted the fact that I was sick enough to go back to wearing it. The wig would give my real hair time to grow back on top of my head and, when I had a full head of natural hair, I would stop pulling it, I lied to myself for the umpteenth time.
Almost daily for the next two years, I braided my long hair or spun it into a French twist, bobby-pinned it to the back of my head and pulled the wig over it, tucking wisps of my real hair under the elastic band of the cap to which the fake strands were attached. And I convinced myself I blended in with normal people because my hair didn’t look any different from theirs. I kept pulling; years kept passing, and the wig kept aging.
* * *
It was the wig’s threadbare condition that spurred me to the hair replacement office. My disappointment there and my husband’s reluctance to spend money for another wig propelled me to a new doctor’s office. On July 16, 2013, I was wearing my ratty wig and sitting on the edge of a sofa in the new therapist’s office. I might have appeared poised to act on the fight or flight impulse I was feeling, but truthfully, if I scooted back, my feet would barely touch the floor. I was conscious of my posture; I bet this woman never slouched. She dressed stylishly with coordinated jewelry. Her blond hair coiled in tight spirals. The sofa’s embroidered pillows reminded me of the last shrink’s, and I took that as a sign this one was going to fail me too. But at the end of the hour-long intake session, the therapist, Dawn, said something no other provider ever had. She suggested a definitive treatment plan: We would start cognitive behavioral therapy at the next session. I drove home and Googled it. Anxious to get started, I tried focusing on nothing but slowly inhaling deeply and exhaling completely for 5 minutes. Grounding techniques such as breathing is an early step in CBT.
After a week of diaphragmatic breathing, I moved on to recording when I pulled and recognizing what triggered each episode.
“Tell me about a situation this week where you realized you had cognitive errors,” Dawn said one morning. She was teaching me to recognize and dispute the kinds of, often irrational, thoughts that made me want to pull my hair.
I told her about chaperoning my daughter’s field trip and the little boy who wanted me to hold him. How it made me uncomfortable, not wanting to reject him but also not wanting to school personnel to think I was being inappropriate.
“What was your anxiety level related to these automatic thoughts?,” Dawn asked. “From zero to ten.”
“About a three. I was anxious and cautious.”
“What were the unhelpful thinking styles?”
“Mind-reading; that someone would think I was trying to hurt him.”
She also pointed out that I was engaging in “all-or-nothing thinking,” by assuming the boy would feel rejected.
“You saw that as black and white with no middle ground. If things aren’t wonderful, they’re awful, and if what you do isn’t perfect or the right response, then you’re a total failure.”
“I hadn’t thought of it like that before.”
“Now, challenge your irrational ideas.”
“Well, I was in a room full of people, including workers. No one would think I would try to hurt him in front of that many witnesses.”
One day about four months into our sessions, my never-a-hair-out-of-place therapist asked, “Is your hair growing back?”
I hadn’t pulled a strand in weeks. I reached up to remove my wig, something I had never done in front of her. “Would you like to see?”
“You don’t have to if you don’t want to,” she blurted.
“I don’t mind.”
“Cynthia!” Dawn’s discomfort turned to delight. “I think your hair is long enough to ditch the wig. I’m sure you could get a cute, short cut.”
There were no obvious bald spots, but my hair was shorter in some places than others.
I know it seems unbelievable that I could fix the most obvious symptom of my disorder so quickly. I hadn’t tried cognitive behavioral therapy sooner because I had never heard of it. I don’t pull my hair now and haven’t for almost three years.
Still, I didn’t run right out of Dawn’s office that day and make a salon appointment. When I thought about calling a salon, my throat tightened, my mouth went dry and my hands numb. I didn’t want a roomful of strangers watching me remove the wig and listening to me explain why my hair was short on top and so long it could be braided in the back. But as I kept recording my irrational beliefs in my thought diary and invalidating each like I learned in therapy, I realized I was healing.
A few weeks after Dawn’s declaration, I was ready.
* * *
Sitting in Kat’s styling chair, I have even fewer ideas for a haircut than I do for the color; fortunately, she does. She trims 10 inches off the back, creating a fashionable, short style that blends new growth into the layers she made. The top, parted on the right, flips over the sides and feathers around my ears while the back juts out in spikes.
“I love it! You look so different!” gushes the salon owner when I pay. “Do you love it?”
I do, and I book my next appointment – for a seat at the blowout bar.
* * * *
Cynthia Trich is the author of one of the essays from Lee Gutkind's most recent workshop on "Writing Away the Stigma."
~ Morning Zen Guest Blog Post - Rachel Kallem Whitman ~
“What exactly happened that brought you here today?” Dr. Vaswani asked from his large leather recliner, peering down at my mother and me swaying on our fraying wicker seats. Behind him was a wall-sized photograph of the Taj Mahal; plastered on the right-hand corner next to a poorly pixelated column was a picture of a yellow rubber ducky. I would’ve sworn I was hallucinating. It was the strangest backdrop for a psychiatrist’s office, but my mother saw it too and was equally confused. Dr. Vaswani was the answer to our prayers; the primary prayer being an answer to the question, “why is Rachel crazy?” and the secondary prayer was that he could give us the cure. And even though I was hating every minute of this visit, sitting there riddled with self-loathing, embarrassment, and shame, I was glad the doctor had asked that question because I wanted to know too. I had done a lot of crazy things, especially since turning 17. Which was the one that tipped my parents concern? Was it the secret long walks I felt compelled to take in the middle of the night? The crooked cuts that appeared on my legs, so many now that they were difficult to hide? The fact I smoked weed once in awhile, sipped vodka occasionally, or took someone else’s prescription pill? Maybe it was my clandestine and bizarre attraction to Princess Diana, which had developed for unknown reasons? I crossed my fingers hoping I would not have to explain that last one.
“She thought she was on a TV show,” sighed my mom.
I will never forget that face. That look of worry and love all jumbled together too complexly that I could never distill one from the other ever again. The day I realized my mom would forever love me with worry in her eyes was the day I realized my TV show was officially going off the air.
Okay, so I launched my own TV show. No big deal. I grew up in a household that adored female talk show hosts. From Rosie O’Donnell, to Oprah Winfrey, to Ellen DeGeneres in later years. These strong, smart women had overcome adversity—they were pioneers of feminism on television, they were engaging and entertaining, they made people laugh, and they were role models to all of us. It didn’t take a genius to realize that this was a path worth pursuing. Luckily, I was a genius, so I decided to make it happen. I would start small but eventually change lives on prime time television.
“Dad, what kinds of peas are these?” I asked my father one night at dinner during a live taping.
“I don’t know. Green! I thought you liked peas?”
“I do, but I need to know the brand.”
“Why do you need to know the brand?”
“Because if I don’t know, how will everyone else!?”
Uh oh. In that moment the “Rach, you can be so quirky” look I had grown accustomed to seeing on my parents’ faces was replaced with furrowed brows and pensive stares. I had only wanted to rave about the peas for my dedicated audience so they could buy the exact same kind and reap all the same nutritional benefits that I was consuming at the Kallem family dinner. But when I said it all out loud I realized that it sounded crazy. I sounded crazy. It had made so much sense before, and I believed it with all my heart. Having a studio audience made me feel real and purposeful in a way I had never felt before. It finally felt like I fit. After being haunted for months by the unsettling feeling that people might be watching me, the enraptured fans tuning in now were my welcomed guests. But with a thunderous roar reverberating in my head, so loud it drowned out the audience’s applause, my completely-real-to-me architectured world came crashing down with the realization that I must be crazy. I was crazy, stupid, and shatteringly devastated. I hoped no one would take serious notice of this cognitive transgression and in utter disgrace, I put the writers on hiatus and dug my slightly rusted scissors out of my dresser drawer, fully aware that I was back to collecting cuts and raiding medicine cabinets. Unfortunately my parents noticed and since I was nowhere near as mesmeric as Oprah I never met a casting agent or an interested executive; instead, I met with Dr. Vaswani, the man who would be my psychiatrist. At our visit, he told me I had bipolar 1 disorder and needed to take medication for the foreseeable future.
You’ve got to be rubber ducking kidding me. Not only was I an insecure, overweight teenager and a failed aspiring talk show personality, but now I was also certifiably insane. A long ongoing list of my erratic behaviors was filed in my psychiatrist’s office and all I wanted was to be normal like everyone else. The worst part of it all though was that I’ve always hated peas with a passion.
If you want to grossly simplify it, bipolar disorder is all about alternating moods. Except these moods, or emotional states, are extremely heightened versions of the feelings most of us experience every day. My cycling emotional states were classified as Hypomania (the fun Rachel who I think everyone adores), Mania (the high-energy, do-it-all Rachel who doesn’t notice the quizzical looks), Psychosis (the Rachel who is torn apart by terror that no one else can see or understand), and Depression (the Rachel who can’t bear it any longer). Dr. Vaswani prescribed me a long list of pills that promised to take away the ache and help me manage my symptoms, but the combination of capsules and tablets left my brain feeling damp and foggy. My thoughts became too thick to think and worst of all my Hypomania and Mania, who had made me feel so light, sparkly, and TV-worthy, all but disappeared under the weight of these mood stabilizers and antipsychotics. Losing Hypomania and Mania felt like losing the best parts of myself. I figured I was miserable either way, so why should I forfeit the one thing that made me happy? Holding firm with this rationale, I flushed my medications down the toilet and resolved to make things better on my own. I had willpower and discipline; I could do it. [I extend my sincerest apologies to the highly mellowed out fish I inadvertently sedated in the Chesapeake Bay.]
* * *
Despite my parents’ concerns, after graduating from high school, I attended college about two hours away from home, which is where I first tasted how sweet life could be with minimal adult supervision. In my newfound collegiate freedom, Mania truly shined. She became the beacon of light in the Sisyphean cycling of my illness. Mania blessed me with electric emotions, erotic ideas, and brilliant behaviors, which while they may have been clinically considered symptoms of my sickness, were divinely exalting for me. She gave me the confidence, and carelessness to channel the diva I always hoped I was and emboldened me to do whatever I wanted. Why not? I was marvelous, sublime, and lust-worthy. The Psychosis and Depression always loomed, so I enjoyed the Mania while I could. Thankfully, college made that pretty doable seeing as I could easily schedule my daily agenda around my Mania. Her never-ending energy and outright refusal to recognize that the real world has consequences enabled me to stay up all night, eat next to nothing, bask in the glittering glow of my own perfection, and for as long as I could I harnessed my Mania to keep myself in motion. Something definitely felt off, but my parents cautiously accepted that I must be “okay.” My grades were good, I saw my therapist and psychiatrist regularly, and I called home every week. But were things “okay”? No. Leading this double life, a crazy party girl masquerading as a sane model citizen, placed so much pressure on my brain that, unbeknownst to me, I began to splinter.
* * *
My drug of choice was particularly potent and highly volatile. It comes highly individualized, tailored to meet the exact needs of each addict. It speaks to you so personally and reads you so accurately that it is nearly impossible to turn down. I liken the special effects of my personal batch to exuberant fireworks whizzing and popping in my skull. When I’m submerged in its aura, everything is electric, and I am a beautiful, unpredictable livewire. How can I possibly say no to this feeling? Especially considering I get it for free. I cook up this magnetic high in my own cranial chemistry set and thus it is beyond easy to slip into this shameless, hazardous addiction. I willingly take the euphoria, the invincibility, and the immortality that leaves me feeling completely divine. At 17 when I was diagnosed with bipolar disorder my Hypomania was alluring and intoxicating. However, in the whirlwind that was college, my Hypomania rocketed from a somewhat manageable blissful state to full-blown Mania. Mania brought miraculous feelings, sensations, realizations, and abilities that I never knew I had. Mania and I truly made for a stunning pair. I think somewhere in the back of my mind I always knew she would eventually kill me, but oh what a majestic, spectacular death it would be.
I once spent 72 hours, the weekend before midterms my junior year of college, researching the most notorious serial killers in the history of the United States. Taken at face value someone reading about the gruesome crimes of John Wayne Gacy, Ted Bundy, Jeffrey Dahmer, and Aileen Wuornos, is morbid and macabre but many people share a psychological fascination of infamous mass murderers. And most college students succumb to the sweet siren song of procrastination. However, after hours of intensive nonstop research, Googling related horror stories, surfing sinister Wikipedia pages, and watching chilling YouTube videos, I became incredibly paranoid, fearing for my life, and I didn’t sleep much for almost two weeks. I was so stricken with anxiety and tormented by the seemingly very real fear that someone was trying to poison me that I only ate packaged food for two months. But a college student living on cheap, packaged food seems kinda normal, right? I could feel the rusted corners of my brain turn to clotted dust but I thought from the outside looking in I was a convincing college student. I could keep this up.
The summer before my senior year of college I intellectualized my ingenious investment strategy of funneling my parent provided allowance into the George Foreman Grill market. No one in their right mind needs eight George Foreman Grills, but I was just pretending to be “ right,” so it seemed like a brilliant way to “spend money, to make money.” The logic was certifiably sound, at least to me. Will George Foreman Grills ever be recognized as legitimate currency? Hell, no. Do George Foreman Grills depreciate in value over time? Hell, yes. They’re just novelty infomercial gadgets. But when I purchased all eight, I honestly felt like I was planning wisely for my future. It took almost six years to pawn off all of those grills but I was 20, had my dad’s credit, and while it was ill-advised and kooky, no one was hurt. Not even my credit score. It seemed sane-ish.
But it is terrifying to lose yourself to an illness that courts you one minute and buries you the next. The times I’ve been admitted to the hospital my psychosis was controlling me like a rattled puppet, and I saw scrapes and scars on everyone and in every mirror, and my eyes felt devilishly unfamiliar. I was frantic and terrified because nothing was real. And then suddenly in the very next moment, everything was too real, and it was really bad. People were trying to poison me and trick me into killing myself. I couldn’t see them and no one else could either but I just KNEW they were tucked behind every corner, dodging behind every shadow when I whipped my head around. I thought about God and Jesus and Princess Diana and how my teeth had betrayed me with their hidden microphones carved into yellowing enamel and their speakers glued to the under belly of my tongue. And it was just hard to think straight and steady a thought long enough to make sense of it before it whizzed away and sparked, lighting a tiny fire in the corner of my mind that eventually raged and roared and left my head engulfed in wildfire. My brain was a bonfire. I was psychotic and all alone, abandoned in an inpatient unit. Where was my intoxicating Mania now?
This is my bipolar disorder.
* * *
“I love you.” The first time he said it we had only been dating three months. Visiting my parents’ home, canoodling in my childhood bed, propped on his elbow, his eyes cast on my face he said, “maybe it’s too soon to say this but, I love you.” My old bedroom built into the second floor of a typical suburban house has periwinkle wallpaper and glow-in-the-dark neon stars plastered erratically across four walls and the ceiling. That night the room was radiating soft neon light like always, but I was tucked in bed with a warm body that was keeping my cold self, safe and cozy. I beamed and told him I loved him too as I traced my fingers across the faint scar decorating his lower lip. He slipped playing Power Ranger tag when he was 10. It took me some time to share the stories behind my scars, but when I did, he listened patiently, held me close, and loved me wholeheartedly. We fell in love madly and deeply, as 20-year-olds do, and drunk on trust I told him everything about myself, my disease, and the dark feelings that festered in my stomach. The honesty and openness was liberating, and the fact he accepted me made me rethink how I felt about myself. Spencer helped me transform shame and silence into love and understanding. We went to different universities in different states, but we spoke on the phone every night. I was a fourth year in college, and I hadn’t taken my medication in years. Orange prescription bottles lined the circumference of my bedroom floor, still stuffed with pills and topped off with cotton. I had to keep refilling my medications because if I didn’t my parents would know I was going off the sanity grid.
Three months after our camp out in my childhood bedroom he said, “I can help you, Rach but you have to want this. You need to make this decision.” Spencer’s voice was eager yet supportive over the phone. I clutched my old Nokia that was crammed into a slightly-too-small white plastic case dotted with cherries, and my confidence faltered for a second. My left hand was filled with the magic number of pills that promised to bring me back into myself, but I wasn’t sure who that Rachel would be. Part of me was convinced I wouldn’t love her and no one else would either. Back to a body marred with immeasurable flaws and inexcusable fatness. Reunited with a tattered heart destined for loneliness and a malfunctioning brain that would make anyone embarrassed. All of this stuffed inside the sullen frame of an insecure teenager who was desperate to be normal. At that moment I wasn’t sure who the real me would be, but I knew Bipolar and my dear friend Mania were no replacement for a real relationship. They are not human. I knew for certain I loved him more than I loved Mania. But I didn’t think I loved myself enough.
Mania, with her effervescent sparkles, her complete lack of doubt, her polished charm and tantalizing charisma, helped me discover a body so beautiful that it deserved to love and be loved without apologizing or second guessing. Mania gifted me with treasured feelings of unparalleled excellence, cosmic importance, and incomparable brilliance. With her I wasn’t normal, I was extraordinary. But I was a danger to myself. The sobering truth I had successfully denied since I was 17 soon became harder and harder to ignore, especially after stints in the psych unit. While my Mania felt magical, opulent, and worthwhile, it had a deadly expiration date. Mania was deliciously otherworldly up until I was catapulted into the terrifying atmosphere of Psychosis only to be viciously plunged into the murky depths of Depression. Mania made me feel electrically alive but at the risk of hospitalization or even death. Was it worth it? Was I worth it?
I fingered the chalky pills in my palm that the FDA pledged would patch me up, but I had never given a chance before. These pills would end my love affair with Mania, snuffing out her hypnotic open-all-night neon light. I wanted to fall in love with the boy on the other end of the phone who wasn’t my savior but who could quite possibly be my soul mate. I whispered to myself a soft and scared “you can do this.” For the first time in my life I decided I had to try and love myself without Mania’s candlelight vigil. And before I could change my mind, with one swift movement, I popped six pills in my mouth and drowned them with a glass of water. They left an unpleasant aftertaste on my tongue. I pressed my cell phone against my cheek and stated, “I can do this.” I was really going to try this time.
* * *
I haven’t seen the inside of a psychiatric ward since I was 22 because I refuse to let mental illness become my life. Yes, my life is much more “boring” now, but that’s because when it comes to managing a mental illness, the everyday details are far from exciting or sensational. My self-care may look like trivial routines, monotonous habits, and meticulous patterns woven into every day life, but this gritty hard work is the lifeblood of taking your life back.
I don’t want to be sick.
Hypomania, Mania, Psychosis, and Depression are all parts of the same serious illness that tells you; you are worthless. Parts that antagonize your anxiety, prey on the darkest fears tucked in your heart, and escalate your deterioration until Princess Diana is the only guardian angel you understand. I can’t have Mania in isolation; it is a package deal, which is why bipolar disorder is not a divine gift, it is an illness.
And I am not a diagnosis.
I finally understand that I have a mental illness, and I will always have it. And while that isn't "ok" it is my reality and I accept it. But that doesn’t mean I only exist as a bipolar person. On the contrary, this is my life, and I don’t let bipolar disorder make my decisions anymore. I love the strong woman who lives at the center of each episode, who never leaves because she knows it gets better. I love the empowered woman who responsibly owns her mental illness, so it begins to disrupt her life less and less.
I love myself.
I’m better when I’m not sick.
I am carving out a future that is defined on my own terms based on the decisions I make every day. My future is bumpy yet bright.
Even without my George Foreman Grill fortune.
* * * *
Rachel Kallem Whitman is the author of one of the essays from Lee Gutkind's most recent workshop on "Writing Away the Stigma."
The psychiatrist started, “Your mom has told me you’ve been crying a lot,” and continued to relay what my mother had reported to him.
“Yeah…” I trailed off into the corners of the room, while trying not to make eye contact. I felt as though I might start crying and then break down, and then they would know how sad I was. I felt guilty for not being able to tell him what was wrong, ashamed because something was wrong with me that I couldn’t fix, and now I was at fault for upsetting the people around me by being abnormally sad.
At this point in my life, I had only heard about the world’s crazies, lunatics, and psychos from the adults on basic cable. My books didn’t really talk about insanity too much, unless the story was describing a “mad” character whose personality was more rebellious than a product of illness. Plus, any writers worth their salt shared one thing in each of their biographies: a baptism by fire in the same font of madness. Like they say, if you can’t stand the heat, get out of the kitchen.
When I was younger, the morning TV news said that last night, an escaped mental patient hid behind one of the trees near the road at the edge of the state hospital grounds, a mile and a half from our house. The escapee waited out of view until a single car came barreling down Hillside Drive. Then, he leapt out into the oncoming high-beams. On other occasions, when a mentally-ill patient escaped from the state hospital, the emergency notifications from the local news would interrupt our regularly scheduled program to inform us of the ongoing search. We children were taught to treat this information in the same fashion as if we had heard that an armed and homicidal serial killer was on the lam. We were taught to incite the same panic within ourselves if we were left in the car.
Lay on the horn if anyone comes up to the car. Keep the doors locked. Don’t talk to anyone. And, never let anybody in.
The strangers, the psychiatric staff—the ones in the white coats and ID badges clipped to their front pockets: I knew they could lock me up and never let me out and no one would come to get me. I knew enough to keep my mouth shut. I saw leathery and chalky straight-jackets with the sleeves crisscrossed in front and buckled-down in the back. I saw padded cells and isolation rooms from TV shows and movies: powerless, screaming faces being treated like criminals for being unable to control their emotions.
That was mental health care.
The psychobabble man shifted, with his choreographed cock-of-the-head listening gesture, and then he started asking the questions you can readily find on any mood chart.
Finally he asked me, “And do you think about hurting yourself? Do you have a plan to kill yourself?”
I panicked. I lied.
How could he know? No one was home when I tried. I mean, how could he possibly know how bad it had gotten? When he was satisfied with my answers, he called my mother into the office with us; he explained that I had reported that: she’s not suicidal, just depressed, keep an eye on her.
When I was home alone one night in the late winter, shortly after I had turned 13, my depression started talking back to me. I found myself crying and having an anxiety attack, crumpled on the cloudy blue shag rug in my bedroom. The next thing I knew was that I was sitting on the floor of my closet, clutching the glass rosary from the top of my dresser. I had started hearing voices. Now, mind you, they weren’t distinct voices telling me to do anything—it was more like a muted din of several whispery, gossipy voices talking about me and it didn’t sound good. It was my first auditory hallucination.
When the voices finally evaporated, I pulled myself up from the small planks of cedar, put down the rosary, took a seat at my desk, and then started writing a suicide note in blue gel pen on a lined, loose-leaf page of notebook paper. In the letter I apologized to the people that I loved: mostly friends and their siblings. I didn’t know how to get rid of the pain. And I was sorry. I loved them. I couldn’t stop crying and I was sorry. I continued the letter and apologized to them each by name.
And then, I just stopped.
I actually said, “Fuck it,” and stomped over to the bathroom directly across from my bedroom, tore up the note, and flushed it down the toilet. I watched each shred of a robin’s egg blue inked, college-ruled paper swirl down the bowl. I waited until the toilet re-siphoned the tank and was quiet again. I gave it a second flush to be sure the letter was gone for good.
We arrive to the hospital in January 2006. My husband Alan is scheduled for a neurosurgical procedure. The moment is finally here. I’m hopeful but tired from caring for my husband. The first step will be to attach a metal skeletal frame which encloses his head and mounts to his skull with screws; this prevents movement during the daylong operation. Then, an MRI determines the target in the brain for the radiation therapy called “gamma knife capsulotomy.” This novel treatment has only fifty published cases at Brown University, and intends to interrupt my husband’s obsessive compulsive disorder (OCD) symptoms.
The procedure’s non-invasive. Instead of opening the skull, focused beams of radiation are delivered to a target on each side of the brain, creating a speed bump disrupting the intrusive OCD thoughts. Alan’s OCD is skin picking. He forgoes eating and sleeping to tend wounds he has picked or seeking to smooth rough places on his body. I refuse to accept that I’ve lost my intimate life partner to OCD.
I wait in the waiting room with his psychiatrist. The wait seems very long. The surgeon comes out and assures us that although the first target took longer than expected, the second one wouldn’t. I’m allowed to visit him in between treatments.
Alan reports, “Chuck was here borrowing money and I have to pay him for the snake.” I wonder what they’ve done to his brain; nothing makes any sense. The neurosurgeon says it’s from the sedative.
He’s kept overnight for observation. When we’re reunited, he’s hungry and asking for sandwiches, inquiring, “When will I have the procedure?”I’m amazed and optimistic. He’s discharged the next morning. Now we wait to see if the therapy will work, which may take eight months for the brain to begin to re-wire itself.
Capsulotomies are novel therapies, and it was difficult to find a surgeon willing to perform one due to psychosurgery’s history. Until the 1970s, lobotomies were commonplace if you lived in an institution; now, ethics communities almost invariably won’t allow it in any circumstance. Back then they were performed without anesthesia by psychiatrists. This entailed crudely swishing an ice pick-like instrument inserted through the eye socket back and forth through the brain’s lobes, usually destroying the very person they sought to cure.
Today there are no asylums to speak of; seriously ill persons are usually left to their own defenses, or in our situation, with a wife to try to figure out what’s going on.
After Alan’s diagnosis in 2001, we found out there were no treatments. Skin-picking was not in the DSM—the Diagnostic Statistical Manual—which defines all mental disorders. If it’s not in the DSM, it cannot be treated and hasn’t been studied.
For 12 years, Alan searched for flaws in his skin that may have needed correcting, using tools such as scissors or tweezers. I was overwhelmed watching his destructive behaviors, so I began reading medical journals and attending conferences. In 2004 I discovered the procedure being done at Brown.
Alan wasn’t leaving the house at that time and refused to travel for the surgery consult. He desperately told me, “You don’t understand—I will die if I leave the house.”
“Don’t worry, if you die I’ll be with you,” I responded.
We arrived at Butler, Brown University’s psychiatric hospital. It looked like an old asylum. No—it was an old asylum. We passed through a large gate, drove up to one of the Gothic Revival buildings and found our way to Dr. Rasmussen’s office; Dr. Grant was also present. They said that this procedure was for extremely ill persons. The doctors asked, “What would you do if we handcuffed you?”Alan became frantic. They were just testing him, but he thought they would do it. They explained possible prerequisite medications trials, and suggested habit reversal therapy. Alan’s treaters back home had already exhausted these suggestions. We left thinking we’d soon receive their decision.
Starting the drive back to Pittsburgh, I went to McDonalds for coffee. The girl at the drive-thru window whispered, alarmed, “There’s a man behind your car!”
I responded, “Not to worry, that’s my husband.” He had gotten out to smoke, and was walking behind the car. At this stage of his illness he was indistinguishable from a street person—emaciated, no haircuts due to open wounds, his gait shuffling due to the psychiatric medications.
But I was still elated from our appointment; I had found help for us, hope for him.
Trauma during development or, childhood trauma, changes the architecture of the physical brain and the ability to learn and social behavior. It impacts 2 out of 3 children at some level, but I didn’t even know what it was…
Childhood Trauma, or adverse childhood experiences(ACEs)can be defined as a response of overwhelming, helpless fear to a painful or shocking event.
ACEs include physical, emotional and sexual abuse, physical and emotional neglect, a missing parent (due to separation, divorce, incarceration, death), witnessing household substance abuse, violence, or mental illness and more.
The children are not sick or “bad”. Childhood trauma is an injury. It happens TO the child. In turn, when they become adults, many re-enact their unaddressed trauma, injuring the next generation in a merciless cycle of pain and fear. When the injuries fester unaddressed, they set off a chain of events leading ultimately to early death, according to the CDC.
Developmental trauma changes the physical architecture of a developing child’s brain. flickr Public Domain
Part 2: The changes to the neurobiology predispose hypervigilance, leading trauma-impacted children to often misread social cues. Their fears and distorted perceptions generate surprising aggressive, defensive behaviors. The ‘hair trigger’ defenses are often set off by deep memories outside of explicit consciousness.
Adults’ view, from the ‘outside’, of the seemingly illogical, or worse, oppositional behavior, is one of shock, confusion, frustration and maybe anger.
If we act on our uninformed views, we risk retriggering more of the child’s trauma, and even more aggression. I confess, as a less experienced classroom teacher, I often did exactly that.
Outward behaviors are easy to recount.
The inner pain and fear are often intentionally camouflaged and nearly impossible to perceive from the outside.
The trauma history which is connecting the inside fear to the outside behavior is often buried so deeply that even the injured can be unconscious of the connection.
ACE-impacted kids are more common than seasonal allergy sufferers Childhood trauma is not a “color” issue. It’s not a geography issue. It’s not an income issue. Experts including Surgeon Generals and the Attorney General have used the specific terms ‘national crisis’, and ‘epidemic’. The CDC says trauma impacts are critical to understand.
CDC scientists found that even in beautiful, suburban San Diego about one-fourth of middle class, mostly white, college educated, working folks with medical insurance had THREE or more ACEs!
Three or more ACEs is significant because three+ ACEs correlate, over a lifetime, with doubled risk of depression, adolescent pregnancy, lung disease, and liver disease. It triples the risk of alcoholism and STDs. There is a 5X increase in attempted suicide.
Children can not address their trauma alone. They need our help.
Other adults normalize the pain and fear of the injured child, thinking “they’ll get over it.” It’s actually the opposite. Young children have fewer coping mechanisms and their immature brains are still developing. The impacts of trauma are actually greater on the still-developing brain.
Schools are not trauma-informed organizations I am embarrassed to admit my own ignorance.
I did know about the inner pain and fear of my students more intimately than most. I began, and still begin, every school year by visiting my families, sitting in their living rooms to discuss school, life and their concerns about their child. In the classroom, I quickly experience the child’s outward behaviors which could seem random, nonsensical, and often angry.
Yet, I still did not easily connect the outward behavior in class to the fear or pain.
As an adult, the classroom seems “safe.” There isn’t an obvious or logical connection to continuing fears, in our safe context. It seems contradictory.
What I forget is that the pain and fear are not in the environment.
The pain and fear are hidden inside the child: they bring intense fear memories with them like they bring their backpack (wherever they go).
Making the connection, intellectually, was made even more difficult ‘in the moment’, in the midst of emotional, intentionally distracting, sometimes screamed, personal insults or abusive attacks from the triggered child.
Even when I was able to stay calm myself, and then connect the (seeming) anger to the (hidden) fear, that was only the beginning. I still did not understand.
The group context, or the social complexity may be the most difficult aspect of all.
If I did maintain composure, then I realized quickly that the other 30 children in the room did not all wait calmly or politely for me so I could focus solely on de-escalating one of their peers.
I also learned the hard way that when I maintained composure in the midst of the barrage, it seemed like “unfair” leniency to other children. Those peers see only the aggressive outward behavior and they expect “punishment”.
Even more learning: the aggression of one student and the related commotion will likely trigger a second student’s fear, maybe others too.
Keeping the academic context in mind: all above is about one instance only. Meanwhile, each minute ‘lost’ to de-escalating that single student is a minute lost to academic endeavors for all thirty.
Now, imagine NOT being trauma-informed and facing 20 to 30 students, and NOT knowing that 25% to 50% are trauma-impacted…
“Success” would require becoming expert at detecting multiple, virtually undetectable triggers, within multiple students. It is not quick or simple or instinctive.
That same teacher must become expert at de-fusing all those students’ fear triggers, and all in advance of any “fight or flight” response.
All day today.
All week this week.
All month this month.
More context: A teacher is not permitted to consider adjusting the scope or pace of the “Common Core”, or academic, “national standards” which are linked lesson-by-lesson and which lead to “standardized” testing. These regular, test stresses are controversial for many reasons. Trauma adds more controversy. First, the stress can re-trigger traumas. Second, the higher concentration of violence and stress in urban settings, with higher concentrations of students of color, and higher concentrations of trauma impairing cognition keeps the achievement gap alive and well.
Let’s pile on top: budget cuts for public schools each year translate to fewer adults with fewer resources to accomplish trauma-informed education, year after year.
“Teaching” in this context becomes nearly impossible at many points.
We are trying to scoop water out of a boat with gaping trauma-holes in the bottom.
Trauma-impacted children are losing their right to equally access their education, while adults stand by, while school districts stand by, while states stand by.
That leads, of course, back to the central aspect of the context:
Schools are not trauma-informed organizations Just as children can not address their own trauma alone, teachers can not create trauma-informed school organizations all alone.
“Success” with trauma-impacted students comes slowly, over time. It is crucial to maintain a predictable, calm, “safe” environment, and “safe” relationships, school-wide, with all adults responding calmly, hour by hour, day by day, month after month. And that’s only the beginning.
Training school-wide staff and implementing trauma-informed practice is essential. At the school level, we should also be identifying, or in some way screening for, students’ trauma histories. It’s too easy to miss those who are quietly dissociating. We should also be re-evaluating zero-tolerance discipline stances. We should also be adjusting efforts against the “achievement gap” to areas with greater violence, stress and trauma. We should also be “understanding” the impotence of “standardized” test-and-punish model for academics in a much clearer light.
Help build awareness of childhood trauma “Nowhere to Hide” blogposts are designed to help grow awareness of childhood trauma. They each focus on a single component of the workings of developmental trauma, via a real life example in short, “30 second” or “60 second” soundbite Links, akin to “Public Service Announcements” (PSAs).
They are true stories in two series about the lives of specific children impacted by trauma. Pseudonyms are used in each of these true narratives. Adult roles and gender have been disguised.
Let me emphasize that most of the children in the stories were in a single neighborhood. Each one passed through my classroom. More than half were in the same classroom, the very same year”.
Please, share the “PSAs” widely The “Nowhere to Hide” PSA Links are meant to be easily, widely shared, one or two at a time, in social media.
Developmental trauma, still “the elephant in the [class]room” for many adults.
Trigger warning: the children’s experiences in the vignettes are painfully real. The children have been changed forever by the impact of their trauma.
Readers can read the entire collection of vignettes on the Lucid Witness website. We hope you find the series helpful, both personally and professionally.
Daun Kauffman – For 16 years now, Kauffman has lived, walked, taught, hurt, grieved, cried and even occasionally laughed with trauma-impacted children, personally. They have shared days in the classroom and evenings and nights in the neighborhood, where the children have “Nowhere to Hide” when they leave school for the day.
Daun’s journey into their worlds began after a life-changing rebirth as a public school teacher, from out of executive suites. It began with reassessing his own life and then going back to school to earn a Master’s degree in Education at Temple University. Kauffman’s MBA from Harvard University Graduate School of Business had been an asset in the prior 17 years in business, leading a variety of consumer packaged goods brands. Now, in public school classrooms, it would not be much help. You can learn more about Daun's work by visiting his website, LucidWitness.com.
~ Morning Zen Guest Blog Post - Melissa Radcliff ~
When Ann Adalist-Estrin, Director of the National Resource Center on Children and Families of the Incarcerated, e-mailed us this spring and asked if we’d like to invite a young person to participate in two listening sessions hosted by the US Department of Health and Human Services and the Department of Justice in late June in DC, we jumped at the opportunity. Of course we’d like to invite someone . . . and we had just the person in mind.
Our post-DC breakfast with this recent high school graduate (“Gina”) and her mother who participated as a chaperone reinforced for us that we had made the right choice. Her description of the sessions, what she learned and offered, the folks she met, what she thought would be next steps, the questions asked, and her interest in continuing the conversation as she moves onto college was thoughtful and heartfelt and such a powerful reminder that she and the others in the group are indeed the experts.
Our Children’s Place of Coastal Horizons Center works to create a community where children of incarcerated parents are recognized, supported rather than shamed and stigmatized, and encouraged to share their stories. Some days it feels as though our efforts lean so much towards data (exactly how many children are we talking about?) and impacts (ACEs, school performance, mental health concerns, etc.) that we overlook and/or forget about the part where they share their stories.
Gina and her mother had a number of suggestions about what could happen here in North Carolina (and likely in other states as well). What additional information can we provide to guidance counselors who are helping students with incarcerated parents complete college applications? How can we ask the right questions to ensure that the counselors and therapists we send our children to have experience working with those with incarcerated parents? What can be done so that children and families have a better understanding of the criminal justice system, how events there will unfold, and what the potential impacts could be on their family?
They also emphasized that while a common denominator for the youth was having an incarcerated (or formerly incarcerated) parent, the stories showed many of the different ways parental incarceration impacts youth. As Gina’s mother pointed out, not all youth want to develop a relationship with their incarcerated parent. She stressed that we must listen to the youth and to hear they need. And to understand that the need may change over time.
Fortunately for all of us, these listening sessions were simply the start. The group is creating a tip sheet for providers – a wonderful and much-needed tool. But we also expect to see youth panels develop in individual states, discussions about accessing health care (a concern raised during the sessions which lead to “should there be a question about parental incarceration on health care intake forms?”), and conversations about balancing security concerns of jails and prisons with the needs of families to have consistent facility policies and procedures that recognize the importance of child-parent relationships.
Thanks to these youth panels, we’re hopeful that folks in DC sat up and took notice. Now we must work as allies with these youth as they continue their work, at both the state and federal level, creating a network of youth with incarcerated parents. Count us in!
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Melissa Radcliff is the executive director of Our Children's Place of Coastal Horizons Center, a North Carolina non-profit dedicated to identifying and supporting children with parents in prison. Radcliff comes to this work with more than a decade of experience working with victims of violence and trauma in a variety of settings, ranging from their homes to hospitals and courtrooms.