Broken Butterfly: My Daughter's Struggle with Brain Injury

Broken Butterfly: My Daughter's Struggle with Brain Injury

by Karin Finell

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Overview

“It all began with the bite of a mosquito. Yes, with a bite of this pesky, but seemingly so innocuous little insect that had been sucking her blood. Not just one, but hundreds had punctured her arms and legs with red marks which later swelled to small welts. Who would ever have thought that our family's life would become derailed, that its tightly woven fabric would eventually fray and break—all from the bite of a mosquito?”

In November of 1970, the Finell family’s lives were changed forever by a family vacation to Acapulco. Seven-year-old Stephanie fell ill soon after their return to the United States, but her mother, Karin, thinking it was an intestinal disorder, kept her home from school for a few days. She was completely unprepared when Stephanie went into violent convulsions on a Friday morning. Following a series of tests at the hospital, doctors concluded she had contracted viral equine encephalitis while in Mexico. After a string of massive seizures—one leading to cardiac arrest—Stephanie fell into a six-week coma. When she awoke, her world had changed from predictable and comforting to one where the ground was shaking. Due to the swelling of her brain from encephalitis, she suffered serious brain damage. Doctors saw little hope of recovery for Stephanie and encouraged her parents to place her in an institution, but they refused. In Broken Butterfly, Karin Finell recounts the struggles faced by both her and her daughter, as well as the small victories won over the ensuing years. Little was known about brain injuries during that time, and Karin was forced to improvise, relying on her instincts, to treat Stephanie. Despite the toll on the family—alcoholism, divorce, and estrangement—Karin never gave up hope for Stephanie’s recovery. By chance, Karin heard of the Marianne Frostig Center of Educational Therapy, where Dr. Frostig herself took over the “reprogramming” of Stephanie’s brain. This, in time, led her to regain her speech and some motor skills. Unfortunately, Stephanie’s intermittent seizures hung like the proverbial “Sword of Damocles” over their lives. And while Stephanie grew into a lovely young woman, her lack of judgment resulting from her injury led her into situations of great danger that required Karin to rescue her. Karin’s love for her daughter guided her to allow Stephanie to fill her life with as many positive experiences as possible. Stephanie learned and matured through travel and exposure to music and plays,acquiring a knowledge she could not learn from books. Stephanie wished above all to teach other brain injured individuals to never look down on themselves but to live their lives to the fullest. Through Stephanie’s story, her mother has found a way to share that optimism and her lessons with the world.

Product Details

ISBN-13: 9780826272928
Publisher: University of Missouri Press
Publication date: 10/01/2012
Sold by: Barnes & Noble
Format: NOOK Book
Pages: 224
File size: 7 MB

About the Author

Karin Finell is the author of Good-Bye to the Mermaids: A Childhood Lost in Hitler’s Berlin and lives in Santa Barbara, California.   

Read an Excerpt

BROKEN Buterfly

Daughter's Struggle with Brain Injury
By Karin Finell

University of Missouri Press

Copyright © 2012 The Curators of the University of Missouri
All right reserved.

ISBN: 978-0-8262-1993-0


Chapter One

The Thunderbolt

Life is a lesson to be learned. —Stephanie Finell

It all began with the bite of a mosquito. Yes, with a bite of this pesky but seemingly so innocuous little insect that sucked her blood. Not just one, but hundreds punctured her arms and legs with red marks that later swelled to small welts. Who would ever have thought that our family's life would become derailed, that its tightly woven fabric would eventually fray and break—all from the bite of a mosquito?

Friday, December 11, 1970

I checked my watch. Eight-fifteen. The school bus was late when it pulled up at the curb. Stephanie's slightly older brother, Steven skipped down the red brick steps and, running toward the bus, saw me at the bathroom window. He waved. I blew him a kiss and waved back. Marvin had already left for the office, scheduled to be in court in downtown Los Angeles by nine. Stephanie, a month past her seventh birthday and still recovering from the turista stomach flu she contracted on our recent visit to Mexico, sat in our bed, watching I Love Lucy.

I thought of how Stephanie's eyes had sparkled the previous afternoon in anticipation of our plans for this day, a "mother and daughter" day of shopping, lunch in the tearoom at Bullocks Wilshire, and if Steffi felt up to it, perhaps a movie in the afternoon. It was Friday, and I wanted her to stay out of school for one more day. She still felt weak from the Mexican intestinal disorder, but I hoped she would feel better than she had last night. Even then she had insisted she dress and participate in the annual Brownie holiday show at El Rodeo, the school she and Steven attended. Last night, on stage, Stephanie's color suddenly drained to deadly pale. Even the waves in her brown-gold hair went limp. She and her group were on stage singing, "My Heart Belongs to Daddy—" but Stephanie did not finish the song. Stephanie, who loved to sing, dance, act and clown, left the stage and fell into my arms, whispering, "Take me home, Mommy, please—"

The rumbling of a truck broke my thoughts. Through the window I saw it come to a halt in front of our house. Ah, the Christmas tree the four of us had selected before the Brownie performance. Steven played a big part in finding the right tree and looked forward to helping decorate it this evening. Celia, our housekeeper, opened the front door to receive the tree and the sound of bells rang through the house. The Austrian chimes on the front door played "Edelweiss, Edelweiss."

The melody made me smile, and the nostalgic warmth still lingered when I crossed the room to the walk-in closet behind our bed. I heard someone on the television chant, "Meeses Ricardo?"

My hand on the half-opened closet door, I asked, "Steffi, do you have your list for Santa Claus ready?"

Turning, I froze.

Stephanie sat flailing.

Her right side twitched, her body shook, her eyes rolled up into her skull.

I took hold of her, "Stephanie, Stephanie!"

I wrapped my arms around her, held her tight.

Her right leg kicked me as it shot upward. Sheet and blanket pulled off, her body jerked, went stiff, limp, stiff, limp.

She stretched, balanced on head and feet, her torso an arc. Her soft brown eyes were replaced by two white orbs.

"Estefani!"

Celia heard my screech, tossed the Christmas tree onto the terrace, and was by our side. "Que pasó? Que pasó mi niña?"

When she saw what was happening, she sank to her knees next to me. Her hand clasped her mouth. Her eyes brimmed with tears. She made the sign of the cross.

To me, the room and Stephanie appeared as if through mosquito netting. While Celia held my child, I grabbed the phone and dialed: the doctor, my husband's office, my mother. Voices blurred. My eyes tried to regain focus, while Stephanie lay twitching, wrenching, quivering, rigid, limp, rigid, limp, in a relentless spin of random movement.

"It's an emergency, yes," I heard my voice, now a rasp, shriek into the phone. "I have to talk to Dr. Rosin, now!" I chewed on my knuckles.

Then a cool, calming voice came over the line. "This is Dr. Rosin."

Why couldn't he be here, now, I thought, instead of wasting time on the phone. I tried to concentrate, to be logical, and to speak coherently. "Wash her down with half alcohol and warm water?" I repeated the doctor's words. Why? I told him she didn't seem to have a temperature. With my voice barely audible I said, "I'm afraid she's dying. I'm not a hysterical mother. You know me." I implored him to come.

His response was No. His reception room was filled with patients. He would ask his partner, Dr. Brown, to stop at our house on his way back from the hospital. It made no sense to me, Dr. Brown was at the Cedars of Lebanon Hospital, on Fountain Avenue in Hollywood, a drive of at least fifty minutes. Dr. Rosin's office on Linden and Wilshire was no more than a seven-minute drive from our house.

I returned to Stephanie's side, stroked her hair, matted and wet, my tears mingling with her sweat. Celia brought a bowl filled with equal parts of water and alcohol. We washed Stephanie, though she didn't feel hot. The task filled the vacuum of time. My mother appeared in the room. She had entered the house through the back door. She saw the convulsing body of her grandchild and came to me softly. She clasped me in her arms. My body twitched, small reflexive movements imitating Stephanie's.

The doorbell rang. I jumped. The doctor? Celia ran down to open the door. And again the chimes played "Edelweiss." The notes sounded off-key, the music jarred. I covered my ears to block out the sound.

Where is Marvin? Didn't he get my message? Has he already left for court? I became more frantic. The shadows around me grew darker.

A smiling face appeared in the doorway, Dr. Harold Brown. I had no sense of time, but reasoned an hour must have passed. He looked at Stephanie. The smile dropped from his cheeks. His kind brown eyes grew large behind his tortoiseshell glasses. His legs seemed to be made of rubber, spanning the space as if with one giant step when he reached for her pulse. His left hand fumbled within his medical bag as he fished out a tongue depressor and pushed it into Stephanie's mouth. Then he brought out a syringe and ampoules. "We have to calm her," he said as if to himself. He extracted the liquid, filled the syringe, and checked the clear serum against the light of the window.

I squirmed at the slowness of it all as he checked the syringe again. My entire body felt prickly, itching. Inject her! Calm her! Please!

He went on with his procedure, pulled the tourniquet tightly around Stephanie's arm, then he injected the needle into her vein. A minute passed. He looked at me. The Phenobarbital hadn't stopped the convulsions.

I listened to the sound I thought to be my husband's car turning into our driveway. Then I heard footsteps leaping up the stairs taking two risers at a time. "Marv. Thank God you're home." I ran to him when he appeared in the doorway. Looking at his face I could read his thoughts: disbelief, shock, then horror when the scene registered. Stephanie's arms flailing like windmills. Her long wavy hair stuck to her head in a tangled, sweaty mass. And her eyes, her lovely dark eyes, were showing only white.

I wondered, How can her eyes turn up into the skull like this? This only happens in horror movies, not here, not in our bed, not with our child.

Dr. Brown sat by Stephanie's side, the syringe poised to inject her with a second dose. Her mouth foamed. Her nostrils bubbled greenish mucous.

"We have to calm her. The first dose wasn't strong enough," Dr. Brown turned to address Marvin.

"What ... What is it ... She?"

"I don't know, yet. But she's in danger of cardiac arrest if the seizures are too violent."

I hid my head in Marvin's shoulders. He clasped me tight, so tight I could hardly breathe.

"Sorry it took so long. They gave me your message when I arrived at court," he whispered.

I was not aware of how long it had been. Time seemed to run backward and forward simultaneously.

The boundaries between Stephanie's body and mine had evaporated. I was not sure where hers left off and my own began. I felt the flailing, the convulsions as though they were mine.

Marvin and I stood in silence. We watched the doctor's every move—observed his hand, the syringe, the needle lifting and moving toward Stephanie's arm, the needle entering her arm, the liquid slowly emptying into her bloodstream.

This second dose finally calmed her limbs. Small spasms shuddered through her body. Then she grew rigid. Stiff. Very stiff. My hand flew to my mouth. What?

Chapter Two

In Limbo

Stephanie was alive.

Dr. Brown and we took separate cars and were to meet at the hospital. To call an ambulance would have taken too long.

Marvin drove. I sat in the passenger's seat holding Stephanie on my lap. Her small child's body seemed, in some bizarre way, like a leaden weight on this surreal ride to the hospital—on the mad rush through amber lights turning red, the eternity we waited for a pedestrian to take his slow ponderous right of way, while I, with every nerve in my body pushed the car to go onward, fast, faster.

The car screeched east on Sunset Boulevard. I noticed the garish billboards flashing topless and bottomless dancers on Sunset Strip. Strange. I wanted not to look, yet I stared at images of naked breasts and grossly exaggerated bare bottoms, growing larger and larger. They mocked my sick child and me. The images whizzed by and disappeared behind us when we turned onto Fountain Avenue.

We reached the hospital in what seemed like hours. Or was it minutes? Time expanded. Time contracted.

Dr. Brown stood waiting at the entrance. Marvin carried Stephanie into the emergency room. A young intern directed us into a small office and fired questions at us.

"Did she have access to drugs? Perhaps in school? LSD? Family history: any brain tumors? Epilepsy? Brain hemorrhage?"

The questions spun in my head. My stomach churned. I wanted to run to the emergency room to be with Stephanie. My repetitive answers sounded as if I were speaking through wads of cotton. "No, no, no—"

The room was small. Stephanie lay in a crib-like bed on a blanket resembling sheep's fleece. An IV attached to her arm dripped a clear liquid into her veins, slowly: drip, drip, drip. A black box behind the bed monitored her heart. Green spikes, a line, another spike showed the rhythm of her seven-year-old heart, connecting her to life. She was alive.

A large window separated Stephanie's room from the nurse's station. I saw the comforting full-moon face of a nurse peering through the glass, watching.

The day's light grew dim. The low sun painted apricot patterns on the white of the woolly fleece and sparked a play of gold in Stephanie's hair, no longer wet from perspiration.

I became aware of the passage of time. How long have I been here? Where's Marvin?

There had been endless rounds of tests. I followed the gurney from one examining room to another, down long gray-green corridors. I walked as if I were pushing my way through ever-thickening liquid, viscous like mud. Later I sat on Naugahyde chairs, waiting, waiting.

Marvin paced, sucking on his big Dunhill cigar. At one point he stuck the lighted end into his mouth, grimaced, and spat out the ashes.

I glanced at my watch when he and Dr. Brown asked me to step outside, where we were joined by Dr. Rosin.

I felt like Christopher Isherwood who had compared himself to a camera when he described what he witnessed in Berlin. I was now the camera that took snapshots of the two doctors. They stood as if framed by my Nikon in my viewfinder, and my mind recorded their images. Dr. Rosin appeared as a figure in steel-blue—from his eyes, his metal framed glasses, to the color of his gabardine suit. He cracked his knuckles, increasing my nervousness. The expression on his face reflected a studied solemnity. Dr. Brown's name was echoed in his appearance—in his hair—from his tweed jacket to a well-chewed briar pipe, unlit, which he relentlessly moved from one corner of his mouth to the other. Marvin's thinning hair stood up as if he had seen a ghost. His Acapulco tan had faded within days into gray-beige. His suit looked crumpled, slept in, as if his emotional state manifested itself in his clothes, and his off-center tie hung around his neck like a noose.

"Stephanie is heavily sedated," said Dr. Brown. "We were finally able to calm her."

"You must realize," Dr. Rosin added, "Stephanie is gravely ill. She has quieted down only because of massive doses of Phenobarbital." He turned to Marvin and continued, "Dr. Andler is arranging for an EEG tomorrow." He noticed our puzzled expressions and explained. "Your partner arranged for Dr. Andler to be consulted."

"The Dr. Andler?" asked Marvin.

Yes, it was the Dr. Maxwell Andler. The neurosurgeon who had operated on Robert Kennedy, racing unsuccessfully against time after the senator was shot in the Ambassador Hotel. Gene Wyman, Marvin's law partner, had asked this eminent physician to join Drs. Rosin and Brown. Stephanie would have the best doctors available.

"The laboratory facilities are normally closed on Saturdays—but in a situation like this, they'll make an exception," said Dr. Brown. "By tomorrow afternoon we'll know a bit more. At least, what to rule out."

"I believe Stephanie has aseptic meningitis," Dr. Rosin said. "Blood and fluid samples were sent to Atlanta—the Centers for Disease Control—today. We'll know more when they grow the cultures. But it takes six weeks for results, if viruses are involved."

"Six weeks? Surely she'll be home long before then."

"You must be patient," said Dr. Brown, patting my arm.

Saturday, December 12, 1970

Again I followed the gurney and the IV on wheels down long never-ending corridors. The doctors allowed me to sit by Stephanie's side in the semi-dark room when they administered the EEG. Small electrodes were attached to her scalp with a gypsum-like, fast-hardening, white material. The wires led to a machine, connected in turn to stylus markers that mapped the activity of both her right and her left brain on a long scroll of paper. Stephanie rested quietly during this procedure.

Later, Dr. Andler approached me. "There is a lot of swelling in your daughter's brain. We have to relieve the pressure by way of a spinal tap. I have to warn you, no matter how many times we have performed this procedure, certain risks are involved."

"What kind of risks?"

"I don't want to alarm you, but if anything should go wrong, if she should move and the needle slip, there might be damage to the spinal cord. The result would be paralysis from the waist down."

I pressed my eyes shut.

Paralysis.

There was no choice. The pressure on the brain had to be relieved. I forced a smile. "I'm glad she's in your hands, Dr. Andler. I know she'll be all right."

He put his hand on my shoulder, gave it a light squeeze, then closed the door gently behind himself when he left.

Later in the afternoon I sang lullabies to Stephanie as she lay on her fleece-covered bed, apparently asleep.

Marvin entered. "How is my Pumpkin-Face?"

Slowly she opened her eyes, looking first at her father, then searching for me.

I gathered her into my arms. "Hey, Shnooky-Pooh, you're awake—how do you feel?"

Stephanie swiveled her head from Marvin to me, but her stare was blank. She made no sound. The nurse had observed us through the window and entered the room with a 7-Up and a straw. I took the glass from her and propped Stephanie's head up to enable her to drink. She tried to suck on the straw, but the liquid ran down her chin and neck. She was unable to swallow. The nurse brought water. "Try to get some of this down her throat. She needs the liquid."

Then we were called out of the room. Dr. Robert Podosin, a pediatric neurologist had joined the team of doctors. Six of us—four doctors and we, the parents—gathered in the hallway.

Dr. Andler spoke first. "We have ruled out a tumor, an aneurysm, epilepsy or any disease that might have been dormant and that would now begin to affect Stephanie's nervous system. What we have not ruled out, however, is meningitis or encephalitis. It is my opinion that she suffers from the latter." He turned to me, "I believe you told Dr. Brown that her nasal passages were filled with mucous the morning of her convulsions. I believe, as do my colleagues here," he nodded to Drs. Rosin and Brown, "that she suffered an attack during the night." Dr. Andler again addressed me. "Didn't you tell me she complained about vomiting when she woke up?"

"Yes. She said something like, 'Mommy, I threw up.' But I saw no ... no evidence ... She did have a lot of mucous, greenish. I wondered about that. It didn't look like from a cold."

"You said she slept in her own room, by herself?"

"Yes, Doctor. Alone."

"Then if she did convulse, no one would have known. The only indication would have been the mucous, later."

I dug in my pocket for a tissue and felt a deep sorrow, imagining Stephanie had been convulsing with no one near to help her.

(Continues...)



Excerpted from BROKEN Buterfly by Karin Finell Copyright © 2012 by The Curators of the University of Missouri. Excerpted by permission of University of Missouri Press. All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
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Table of Contents

Contents “Butterfly”: by Stephanie Finell Acknowledgments Chapter One: The Thunderbolt Chapter Two: In Limbo Chapter Three: Chrysalis Chapter Four: Moments of Light Chapter Five: The Devil’s Choice Chapter Six: The Awakening Chapter Seven: Slowly, Too Slowly Chapter Eight: Fissures Chapter Nine: The Teacher Chapter Ten: Patterns and Repetition Chapter Eleven: The Goldfish Bowl Chapter Twelve: Miracles and Roses Chapter Thirteen: Pressures, Explosions Chapter Fourteen: Sweet Sixteen Chapter Fifteen: Shadow Play Chapter Sixteen: Prisons Chapter Seventeen: No More Songs Chapter Eighteen: Of Lion Trees and Elephants Chapter Nineteen: The Heartbeat of the Earth Chapter Twenty: Back in the Land of Fear Chapter Twenty-One: The Black Knight Chapter Twenty-Two: New Beginnings Chapter Twenty-Three: The Golden City Chapter Twenty-Four: Special Olympics Chapter Twenty-Five: Two Weddings, Three Funerals Chapter Twenty-Six: Changes Chapter Twenty-Seven: Navajo Land Chapter Twenty-Eight: Falling in Love Again Chapter Twenty-Nine: Spirit Visit Chapter Thirty: Rainbows and Moonbows Chapter Thirty-One: Things a Mother Should Never Know Postscriptum

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