Being with Rachel

Karen Brennan, W.W. Norton & Company, Inc.
Being with Rachel

A Story of Memory and Survival

Chapter 1

I want to begin with a dream I had in the summer of 1995. Because it was a dream with two parts, I entitled it “Dead Girl in Two Parts.” What follows is a direct transcription from my journal. Part 1: a girl in a school uniform falls from a ledge, from between the arches of a wrought-iron railing, to her death. I am sitting on the ledge and my daughter Rachel may have been there as well. The girl falls, I realize, because she is so small and (I think at the time) the wind blows her off. She is simply swept through the railing. When I look down I see her little pile of school clothes — it seems to be all that’s left of her. I feel regretful but not horrified.

In the second part of the dream we — me, Rachel, and the little girl — are at the seashore, sitting on a beach, close to where the waves lap up. Suddenly a large wave washes over the little girl and kills her. Rachel and I look at her face staring up at us from beneath the water. It is a distinctive image, the face of the girl, eyes closed, under the shallow water which moves softly over her. I feel more than regret now; I feel guilt. I feel that one of us (Rachel) should have been more attentive. There is a sense that Rachel had been in charge of this girl. I am therefore a little annoyed with Rachel’s irresponsibility, but this isn’t a major annoyance. It’s more like the resigned feeling I get in real life when someone’s done something wrong (as if, for example, Rachel wrecks the car I plan to give her for her birthday) and I realize it’s futile to make a big deal over it.

Approximately a month after I wrote this dream in my journal, I received a phone call in my Mexico flat — I had been spending the summer in San Miguel de Allende — informing me that my twenty-four-year-old daughter Rachel had been in a motorcycle accident and that she was presently in a deep coma in Denver General Hospital’s intensive care unit. Her friend, the driver, was fine, but Rachel’s CAT scan, the informant, a neurosurgeon, told me, was very, very ugly.

By eleven that morning I was on a first-class flight from León to Denver, sitting next to a woman who owned a travel agency in Guanajuato. She was pretty, I remember, dark-haired, dressed in cream-colored slacks and a white blouse. She wore a tiny silver watch on her wrist which, because I had lost my own, I had recourse to consult now and again. She was on her way to Denver for a romantic weekend with her husband. We had, what seems to me in retrospect, a pleasant conversation. I told her about Rachel’s accident; she consoled me. I did not cry. I spoke reasonably, I thought at the time, having all the while the bizarre sensation that I was speaking someone else’s words about someone else’s daughter. I suppose I must have been in shock.

I remember that as we conversed my mind raced along another track, somewhat at odds with our conversation. I imagined Rachel, even at that moment, woozily coming to, rubbing her eyes, her sore head. I pictured her fully awake, out of the intensive care unit by the time I arrived, and I planned her homecoming, her few weeks of rest. I even went so far as to imagine my sudden memory of this time — on the first-class flight to Denver, next to the woman in the cream-colored slacks, when I was terrified out of my mind.

My older daughter, Margot, met that Delta flight. My beautiful, usually unflappable daughter looked, I saw immediately, dismayed. We fell into each other’s arms and, for less than thirty seconds, we wept. I would discover that one could cultivate these fitful griefs, like catnaps — so much more economical than the longer, luxurious spells. Which is to say, right away we knew we would not be able to give ourselves over to the abyss of our worst fears, but had to pull ourselves together. I hadn’t, until those days, conceived of our family as the pulling-itself-together variety, but here were Margot and I having made a decision to dry our tears and walk briskly to the baggage claim, as she reported the events of the past day as efficiently as a wartime journalist. The coma, persistent, deep, 2 on the Glasgow coma scale; the CAT scan, showing bleeding in the brain itself and widespread injury to the cortex; the prognosis, unknown, gloomy.

“Thank God you’re here,” she said. “The men are so mopey.” The men were my two sons, Chris and Geoff, who had flown in from San Francisco; and two ex-husbands — Tom, the father of all four of my children, and John, their stepfather. There was Tim, a young man I’d not yet met, the boyfriend, the driver of the motorcycle which crashed for no known reason into a hillside off a long strip of country road in Steamboat Springs, Colorado.

“You should hear them, gloom and doom,” Margot said. I could imagine this. The men in our family tended to be fatalists — if only to offset my own, occasionally foolhardy optimism. “They’re just waiting for the plug to be pulled.” It was a horrible sentence and it shocked me.

In the airplane I’d not allowed myself to think the worst and here it was: We could actually lose Rachel. Margot went on to explain how Chris had been the first contacted by the Denver General staff member. Chris was always changing his residence, and Rachel happened to have his latest phone number in the pocket of her jeans. “Your sister has been in a motorcycle accident and is severely brain injured,” the hospital worker had told Chris. “Are you willing to sign a release on her organs?” And Chris had been indignant. “She will need all her organs,” he told them. Soon after, he notified Margot in Tucson, then hopped a plane to Denver with Geoff.

But now, overwhelmed by hard evidence — Rachel’s failure to respond, the doctors’ frank and almost brutal assessments — even the boys, as I still called my grown-up sons, had given up hope. They were mopey and particularly hapless as they flipped too quickly through dog-eared copies of Time and Newsweek in the ICU visitor’s lounge. They stood uneasily when I arrived, as if ashamed to tell me what had happened — as if, in their manliness, it had been their duty to prevent it.

We were an oddball clutch of characters. There was ex-husband Tom in his camouflage pants, what was left of his hair pulled into a thin ponytail. For the past five years, Tom had been living in a school bus in the middle of the Sonora desert, somewhere near Sahuarita, Arizona — none of us quite knew where. Now he was manning the pay phone in the visitor lounge. He seemed to have acquainted himself with the array of distraught persons who waited, along with the rest of us, hour after hour, for news of recovery or decline. The pay phone rang constantly and there was Tom, our self-proclaimed receptionist. “Right here,” he’d say, and Mrs. Ortiz, whose husband had suffered a stroke, would make her way to the phone, a toddler in her arms. Or Matt, whose brother had been shot in a drive-by. Or Ella, whose son was recuperating from neurosurgery.

Then John, ex-husband number 2 and still dear friend, an attorney, who after the divorce grew his hair down his back and had an ear pierced. Now a silver map of Texas dangled merrily from his ear, in sharp contrast to the worried expression on his face.

Chris and Geoff, tall, handsome, looked like rock stars in their black leather jackets, a few bright chains looped in Chris’s belt, San Francisco style. They put their arms around me, and I was grateful for the leather wall of them to put my head against — none of us knew quite what to say. “It’s unbelievable,” we finally said. “Rachel of all people,” we finally said. Because of all of us, Rachel had been the healthiest, the sturdiest, the most intrepid, and, dare I say it? the luckiest. With her sunny disposition, her considerable talent as a competitive distance runner, she was, as a friend of mine once remarked, “biochemically blessed.” I thought of this as I tried to muster some faith in her recovery. I reminded myself how the odds had been stacked against her as a two-month premature cesarean baby who’d needed three exchange transfusions, whose first year in this world was so fraught with peril that she’d been hospitalized three times — for pneumonia, for whooping cough, for croup.

Tom’s position was that we should face facts. “I’ve been through this before,” he said, which was true. Our friend Barbara had lost both of her teenage sons in a single motorcycle accident fifteen years before. She’d had to disconnect their life supports on the second day, on the advice of her physician, who pronounced them “brain-dead.” During those first moments in the visitor’s lounge, I was haunted by the memory of Barbara and her decision to let her sons die, the most excruciating decision of her life. Could I let Rachel die? Would I have the strength and wisdom to know what to do? And that awful word, “brain-dead,” would someone pronounce her so?

I was introduced to Tim, the boyfriend of the moment, who’d taken Rachel on his motorcycle a short twenty-four hours ago. A slight young man with a kinky mane of dyed blond hair, a la the snowboard culture of the day, he shook my hand frantically and in his eyes I saw real terror. I put my arms around him, having made up my mind to not muddle my focus with blame or anger. Then John, looking especially weary, hugged me. “Let’s not give up,” I whispered to him, because I could not imagine our strong, healthy Rachel not managing to overcome anything.

* * *

When I arrived in Denver that first evening, I knew nothing of brain injuries, of axons, of intercranial pressures, of ventilation or tracheostomies, of motor strips, frontal lobes, aphasic disorders, or unilateral neglects. I knew nothing of comas. What I knew was what I witnessed in the ICU that night, like a particularly grisly episode from ER: bodies being whirled by on stretchers, or corpselike in beds, hooked up to monitors, a nurse with a clipboard positioned at the end of each.

Rachel was one of these bodies. She had a tube running down one nostril (nagogastric) for feeding, another in her mouth (endotracheal) for breathing. A little semicircle of her hair had been shaved above the forehead on the left side, from which protruded a three-inch metal bolt. This was to measure her intercranial pressure. The monitors flashed above her head on a large green screen: heart, respiration, blood oxygen, blood pressure, and intercranial pressure.

Rachel’s eyes were closed. She had a small scrape on her cheek. The toes of her right foot were badly burned and grotesquely blistered. Occasionally she moved, but these movements were not reassuring; rather, they were the unnatural movements of one who has severe brain damage, called, in med-speak, posturing. At this stage, Rachel’s postures were the most severe variety — decerebrate — indicating damage at a deep level of the cortex. They consisted of Rachel flexing her body and limbs rigidly into an extended position, her hands and feet flipped inward in a grotesque way. Every time she postured, her intercranial pressures rose, meaning that the fluid in her brain was increasing to a dangerous level. Eventually, another half-moon of hair would be shaved on the other side of her brow and a drainage tube inserted to draw off the excess fluid and blood.

Margot had prepared me for the shock of seeing Rachel — the tubes, the monitors, the horrible bolt screwed into her cranium, the tubes running into her nose and mouth, taped to her face, almost obliterating it. Sometime after her flight to Italy from Salt Lake City in June, where we’d said good-bye, Rachel had dyed her hair a dark, burnished red. It was a nice color for her, and I found myself absently approving, imagining how well it must show off her bright blue eyes. I gingerly lifted the white hospital sheet and even more gingerly lifted her thin blue gown, and there was her fit runner’s body, completely and astoundingly undamaged, not even a bruise.

At around this time, the resident checked in with us. An amiable, soft-faced woman, not much older than Rachel, she took one of Rachel’s hands and pressed the tip of her pen into the nail bed of her thumb. Hard. Rachel responded immediately — flexing her arms and legs in a “posture” — though her face (what I could see of it) was impassive, as if the pain had found a pathway around her very being. “Why do you have to do that?” I asked. The resident — I think her name was Maureen — explained that this was one of a number of neurological tests administered to Rachel throughout the day. Her reaction — posturing — she told me, was hopeful. Somewhere, the pain registered. Not brain-dead. Then she pried up each eyelid and shined in a tiny bright light. There, too, a small reaction. I could see for myself the contraction of the pupils, though they were sluggish contractions, said Maureen, not quite normal.

I began to nourish my little seed of hopefulness then, the notion that a few minute signs might add up to a miracle. Moreover, Maureen advised that we try to wake her up. “Talk to her,” she said. “Sing, make noise.” She told us the story of the comatose Haitian man whose family surrounded his bed in the ICU and chanted and prayed, performing noisy rituals until he opened his eyes. It seemed a bizarre undertaking in a room of critically ill people, each bed separated by a flimsy curtain. But then someone found Rachel’s Walkman in its blue fannypack, and I fitted the headphones on her and turned up the volume. Who knows what the music was? Some rap singer she used to work out to, the lyrics faintly obscene. For a few days, she listened to that tape, and, for the record, it did nothing. No more than my endless conversation; Margot quipped that I was tormenting her awake, and we cheered ourselves briefly by envisioning a scene in which she’d come to shouting “MOM, SHUT THE FUCK UP.”

But soon enough we knew better.

Hospitals, if they do anything for the families of the brain injured, cannot be accused of not providing them with information. We had more information than we could bear on traumatic brain injury (TBI). Pamphlets which began with diagrams of the brain, arrows pointing to its lumpy hemispheres and, rather simplistic, I would learn, descriptions of their functions; photocopied instructions to the “loved ones” (why did that phrase sound like “the bereaved” to me?) — be patient, expect personality change, memory loss, cognitive deficit ranging from mild to severe; descriptions of rehabilitative procedures, testimonials of recovering head-injured persons; copies of brain injury newsletters from national and state organizations; a chart outlining the stages of coma, called the Glasgow coma scale; another chart referring to stages of recovery, called the Rancho de los Amigos scale. And more — lists of insurance lawyers, nursing homes, home health care organizations, and family support groups, regional as well as national. It was all too much to take in and, frankly, struck me as irrelevant at the time. What impressed us most in those first days was the information that Rachel would not “come to,” as they do in the movies. A patient goes into a coma, and when she returns she is changed forever. The wake-up itself had stages that ranged through levels of agitation and confusion. The wake-up would not comfort us; it would upset us.

The attending physician, Dr. Cleary, looked about eighteen: long, ringleted hair, an angelic, slightly bug-eyed face, she could have been a good Mormon wife with her floral dresses and unvarnished nails. I am ashamed to say that she did not especially inspire my confidence and that this, I’m sure, had to do with her age. Nonetheless, she spoke with authority, saying things I wished were not true. She explained, the first time we met, that Rachel had suffered a diffuse axonal injury and offered an alarming analogy: “Picture,” she said, “the color-coded wires in a phone line. Now picture them sheared off and striving to reconnect. Only in a brain injury the right colors do not necessarily connect up again. Blue may find yellow, red may find green, and some may never reconnect.” These colored wires represented the axons that run from the outer layer of the brain to the cortex beneath, linking both layers of the brain and making possible the connection between brain and world, brain and body, brain and self. “We never know what will happen,” Dr. Cleary told us. “Except that since her injury was diffuse, her wake-up will be diffuse.” It seemed almost too simple to say.

That first night I checked into a room at the Holiday Inn which I shared with Margot, who’d be returning to her children, Nick and Maddy, the next day. I lay in bed, awake most of the night reading the packets of information. It was hard to believe that just the night before I’d been dancing at a Mexican cafe with a boorish real estate man who lectured me on the investment potential of the countryside surrounding San Miguel. At midnight, I’d raced home in a torrential downpour, the large key to the Spanish colonial mansion in which I rented rooms jangling in my pocket. At six a.m. the phone rang; I heard it dimly, as if in a dream, and didn’t bother to answer. (The phone was always ringing in my flat, and it was invariably the wrong number.) At eight it rang again and I picked it up. That was the phone call which changed my life, I thought, though Rachel’s life had changed hours before, when that motorcycle careened over the hill. I imagined her lying there, “pinned,” as someone reported, beneath the bike, unhelmeted, her red Adidas flung fifty feet away, a crescent shape burned into its rubber sole. I tried to imagine her last moments before the accident — had she been laughing or frightened? Did she see what was coming? Did her life flash before her eyes?

* * *

Like the bipolar melodrama of a soap opera, those weeks in Denver swung fantastically through crises and denouements, tears and even hilarity. One of the nurses commented to a friend that we were an unusually irreverent family — “it’s as if they don’t realize the seriousness of what’s going on,” she worried. “Oh, they realize the seriousness,” said the friend, Uma, a doctor herself. “That’s just the way the family copes.”

Which was true: Our default was the ironic — the grisly fact of the body harvesters across the aisle from Rachel’s bed, the pulmonary technician with his choked, breathless voice, the young doctors who soared off on motorcycles with their body-pierced boyfriends — all were occasions of irony and all made us laugh, if somewhat halfheartedly. Otherwise we dealt with each observable second of Rachel’s condition, watching the monitors too closely (as one nurse admonished), watching for something to register on her placid, sleeping face.

Strangely, the adrenaline seemed to agree with my body — I was revved up, focused, even calm. And though I was certainly terrified in the depth of my being, on the surface I was in high gear, mobilized and much more efficient than usual. I ran on little sleep, and I finally brought myself to read every word of the information packets, though here my mind went fuzzy; I couldn’t take it in, what lay ahead. What I gleaned from all those pages was the following: There were three types of brain injury — mild, moderate, and severe. Rachel’s was severe. Yet I persisted in believing that if I did everything right, Rachel would recover. I’d been raised a Catholic, and deeply ingrained in me was the notion that if I only behaved, evil would be averted, good would triumph.

As I write these words, I’m struck by the superman-ish flavor of them, as if some caped individual could come swooping in to restore serenity to our lives. I must have been thinking of the cape of the Virgin of Guadalupe, blue with gold stars, and the Guadalupe herself, renowned for miracles of healing. For the past few years, she’d been a beloved kitsch figure for Rachel and me, Mexico-philes that we were, and we collected her image in figurines and on postcards, refrigerator magnets, and even (for one Mother’s Day) a T-shirt.

According to the legend, the Virgin appeared to a young Indian boy, Juan Diego, in 1531. He’d been making his way home in the hills that surround what is now Mexico City, when he was arrested by beautiful music emanating from nowhere and then saw an apparition: Resplendent in her blue-and-gold cape, poised on the crescent of a moon, roses everywhere, the Virgin listened to Juan Diego’s request to heal his uncle. She gave him a cloth on which was a likeness of herself so realistic that even an ophthalmologist centuries later believed he was gazing into human eyes. Guadalupe, therefore, is especially linked to the power of her own image; and so suddenly to be surrounded by pictures and reminders and dreams was, in a sense, to be visited by an apparition.

Someone fastened a small Guadalupe holy card to the rails of Rachel’s bed, and then my sister in Tucson, out of the blue, began to dream of the Mexican Virgin. It seemed, for a while, that we were deluged by Guadalupes, Guadalupes everywhere in the cards and gifts sent to Rachel and spotted randomly throughout the day: a nurse with a Guadalupe bracelet, a taxi driver with a Guadalupe postcard tucked beneath his visor. Weirdest of all, a prayer to the Virgin of Guadalupe written in Spanish appeared on the windshield of my car where it was parked at the Holiday Inn. And since any sign, from blood pressure to the tiniest tremor around Rachel’s closed eyes, meant something, I began to pray to Our Lady of Guadalupe. Let her make it through, I’d pray. Just let her wake up. Just let her live. Just let her have her life.

* * *

I was ready for a miracle of any sort; I was waiting for one. Whatever skepticism I’d had in my previous life, as an academic, an intellectual, a writer, vanished in the face of my desperation. I was open to anything.

We were visited by chaplains who doused Rachel with holy water and by new age devotees who gave us totems of healing to put near her bed — sacred stones, feathers, tarot cards — and embarrassing rituals to perform over her sleeping body. A Ph.D. nurse from the University of Colorado instructed me in the art of therapeutic healing, and, with her, I passed my hands over Rachel’s “energy fields,” seeking to perceive the slightest negative vibration. How I would proceed with this knowledge, I had no idea.

One afternoon, a large man in an electric green suit arrived in the visitor’s lounge. Bidding us rise and join hands in a circle, this minister from the Church of the Nazarene began to Praise the Lord in a voice resonant with vibrato. I raised an eyebrow at John, who was the last person I’d expect to join in that circle. “It can’t hurt,” he shrugged.

Nothing quite measured up to the Guadalupe for me, though, and in the months and years that followed Rachel’s injury, it is the Guadalupe that continues to appear to us, in one way or another, and it is she we credit with our miracles.

In this I was (and am) supported by my mother, an ardent Catholic, and, more important, one who prays continually. Retired in Florida, my parents were too old to travel, but I talked to them daily. My mother was, I knew, praying day and night for Rachel’s recovery. But I longed for my mother’s real presence, for her calmness and faith, for the smell of her hair and skin. I envisioned her with me, by Rachel’s side. “I’ve sent my guardian angel to Rachel,” she told me, quite seriously. “I’ve loaned him to her for a while.” And, it’s true, I felt a presence (motherly? saintly?) keeping vigil with me, now and then, a light-filled spirit hovering over Rachel’s bed, saying don’t give up.

My father, a retired take-charge business executive, had more practical ideas. At the time, these ideas struck me as impossibly oddball and out of character for my dad, who, for the most part, was skeptical of anything that wavered off the course of middle-class conventions. Chief among these was the suggestion that I contact a doctor who had devised some electrical device which was supposed to jar people out of comas. He had met someone on the golf course who’d known a doctor who’d known someone with a stroke, and so on. But I couldn’t bring myself to call this innovative physician with her special machine. Beneath their words of encouragement, my parents’ voices on the telephone sounded thin and frightened, the way I must have felt inside.

Meanwhile, Rachel’s team of nurses and doctors and medical personnel labored to ensure her survival from one harrowing moment to the next. Rachel’s “team,” as it was euphemistically called, consisted of her nurses, doctors — neurosurgeons, attending and resident — and a social worker who tirelessly negotiated with insurance companies and that bulwark of terror, the hospital billing office.

The only bright light in those days was the discovery that Rachel did have insurance. For the past two years, she’d been living in Colorado, a ski bum, she used to say proudly, who did a variety of menial jobs in exchange for ski passes. Her only real job had come last year, when she was a teaching assistant in a bilingual junior high. She’d quit her job at Basalt Middle School in May, and I was sure her insurance had expired along with it.

But, miracle of miracles, the insurance expired on September 1, which meant we had about a week to file for COBRA and all her expenses would be covered. The caseworker from the insurance company was especially helpful and compassionate and, except for the four-thousand-dollar air-med flight which wiped out my savings, worked hard to get approval for everything Rachel needed.

But the most valuable team members in those days were her regular nurses, those patient, sleep-deprived men and women who sat at the foot of her bed around the clock, monitoring the monitors.

The first days after a brain injury are the most critical — the intercranial pressures can build dangerously and cause even more damage—swelling, bleeding — to the already traumatized brain. Blood pressure can rise, causing a stroke; the heart rate can slow down or speed up, indicating acute distress to the lungs or heart. As it was, Rachel was on a ventilator in those first days — an archaic-looking dun-colored box which, attached to her oxygen, actually forced air into and out of her lungs at a preset rate. It made a sound like a monster in a monster movie, exhaling and inhaling, coming closer and closer. In a week she would “over-breathe” the ventilator, signifying her ability to breathe on her own, and she would be “weaned.”

Around the same time, we signed the release for a tracheostomy, and soon her trachea would be punctured through her neck and outfitted for her breathing apparatus, freeing — if only cosmetically — her mouth and nose. It would make her more comfortable, they told us. The surgeon also made an incision on her belly for the feeding catheter, through which flowed the greenish “nutrients” they gave her in those days. Sans tape and the skinny plastic tubes running into her nose and mouth, we could see her face, the quick flitting beneath her eyelids, her lovely, serious mouth. She was who she always was: Rachel. Of this we were sure.

Excerpted from BEING WITH RACHEL: A Personal Story of Memory and Survival by Karen Brennan. Copyright (c) 2002 by Karen Brennan. Used with permission of the publisher, W.W. Norton & Company, Inc.

Posted on BrainLine March 23, 2010.