Read an Excerpt
Being with Rachel
A Story of Memory and Survival
By Karen Brennan
W. W. Norton & Company
Copyright © 2002 Karen Brennan.
All rights reserved.
ISBN: 0393019616
Chapter One
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.
(Continues...)
Excerpted from Being with Rachel by Karen Brennan. Copyright © 2002 by Karen Brennan. Excerpted by permission. All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
