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Broken Butterfly

My Daughter's Struggle with Brain Injury

Karin Finell

Publication Year: 2012

“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 throughtravel 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.

Published by: University of Missouri Press

Cover, Title Page

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p. 1-1

Copyright

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pp. 2-7

Contents

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pp. vii-viii

“Butterfly”

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pp. ix-11

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Acknowledgments

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pp. xi-xii

I met Anaïs Nin a few months before Stephanie was hospitalized. When she heard of Stephanie’s illness, she advised me to make a habit of writing the day’s events down every night, before memory threw a veil over the activities. She said to record the conversations between the doctors and myself...

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Chapter One: The Thunderbolt

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pp. 1-4

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...

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Chapter Two: In Limbo

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pp. 5-9

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...

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Chapter Three: Chrysalis

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pp. 10-16

Stephanie was conscious now and no longer convulsing. But I had left her “eating butterflies from my hat.” Had her brain been damaged by her seizures? I had little knowledge of the workings of the mind, and terms like aphasia, when a stricken person thinks of a particular word but cannot speak the word and says...

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Chapter Four: Moments of Light

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pp. 17-18

The alarm shrilled in a high pitch. “Seven o’clock already?” Marvin yawned. “Yes.” I was tempted to pull the covers higher over my head, feeling perpetually tired these days. “Why don’t you sleep a while longer? I’ll wake you before I leave,” he said. “I may as well get up too.” A little later, Steven screeched up the stairwell...

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Chapter Five: The Devil’s Choice

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pp. 19-27

Minutes, hours, then days slipped by until I lost all sense of time. Time became an abstraction, it would bend and reel forward then spool back again. I spent my days with Stephanie—from early morning until late at night. I gazed at her, seeming so peacefully asleep, and I would conjure up the dancing Stephanie, in her ballet...

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Chapter Six: The Awakening

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pp. 28-36

Six weeks had gone by, and Stephanie still lay in her coma. It was the twentyfifth day of January when Dr. Robert Podosin rushed into Stephanie’s room, shouting. “The results from Atlanta are back. What a girl! She’s alive and she’s battling the deadliest of them all...

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Chapter Seven: Slowly, Too Slowly

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pp. 37-41

Sunny, sparkling, smog free days followed. Stephanie’s sense of music and rhythm appeared to be unimpaired. Although she still couldn’t speak more than a few words, she was able to sing and harmonize. She would hum the melody, and here and there she remembered words to songs she’d sung before. I found that when...

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Chapter Eight: Fissures

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pp. 42-47

The children lay asleep upstairs; pine logs crackled in the living room fireplace. I had put the guitar next to my chair when I finished playing a Spanish dance. The setting would have been cozy, and Marvin usually felt mellow when I strummed these easy pieces, but this time his expression did not change...

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Chapter Nine: The Teacher

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pp. 48-53

Stephanie needed schooling, and she needed structure in her life. I tried to enroll her in the Fernald School at UCLA but found it would not be an appropriate placement. Many of the children there were more severely handicapped, and in addition, many had serious behavioral problems. I learned there...

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Chapter Ten: Patterns and Repetition

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pp. 54-62

It was the summer of ’72, and Stephanie had made excellent progress. Her speech was almost back to that of a normal eight-year-old. During Steven’s stay in summer camp, Marvin took Stephanie and me on a business trip to Hawaii. We stayed at the Kahala Hilton, in a suite on the top floor, overlooking the...

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Chapter Eleven: The Goldfish Bowl

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pp. 63-75

Stephanie’s progress had been steady, though it was slower than I hoped. Her speech was that of a normal ten-year-old. Again, she was popular with her classmates—now from the Frostig Center—and was invited to many birthday parties, prompting frequent visits to the toy store. I was in a hurry. I’d been in the toy store only...

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Chapter Twelve: Miracles and Roses

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pp. 76-80

Three years went by. They were turbulent years. Great American, the insurance company that Marvin, its CEO, had moved from New York to Los Angeles was sold by Eugene Klein, and the new owner relocated it to Cincinnati. When Marvin wrote his own ten-year contract, he cleverly stipulated that he would serve his term...

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Chapter Thirteen: Pressures, Explosions

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pp. 81-89

Stephanie’s health had steadily improved. She had been seizure free for more than four years, and the doctors took her off her anticonvulsant medicines. It came quite suddenly when, in May 1979, Stephanie, now fifteen and a half, again began to suffer from minor seizures. The doctors put her on the...

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Chapter Fourteen: Sweet Sixteen

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pp. 90-94

The taxi brought us to our house on Ridgedale Drive. Finally, we were home again. Stephanie’s hugs and kisses almost made us forget our worries. Steven had wisely chosen to leave, hours earlier, and had taken refuge with my mother. Stephanie must have sensed the tensions we had with Steven...

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Chapter Fifteen: Shadow Play

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pp. 95-98

Steven and Stephanie were now respectively seventeen and sixteen. There were still tensions between father and son, but they were on speaking terms again. It had been a stormy year for Steven. While staying at my mother’s, he had a run-in with the law, and his probation officer mandated him to live in a...

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Chapter Sixteen: Prisons

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pp. 99-123

I needed to get away from the house, from Marvin. I needed to think. I ran away and took Stephanie with me. We boarded a Lufthansa flight for Berlin. It was late in March and seeing the spread of golden forsythias when we landed at Berlin Tempelhof reminded me of my childhood. Briefly I managed to push thoughts...

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Chapter Seventeen: No More Songs

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pp. 124-135

After Stephanie and I returned from Europe, Marvin was loving and attentive and seemed to make an effort to repair our marriage. He did not tell me that he had broken up with Judith, but he was home most evenings, and we spent many a weekend in a condo on Lido Isle, an enclave of Newport Beach, about seventy miles south of Los...

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Chapter Eighteen: Of Lion Trees and Elephants

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pp. 136-142

Two years earlier I had visited Kenya with Marvin. Africa had entered my bones, and now they ached to return. On impulse, I decided to run off to this faraway land while I still had a viable credit card—and take Stephanie with me. Run away from the big house with its memories, our house that had become a...

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Chapter Nineteen: The Heartbeat of the Earth

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pp. 143-152

The plane winged us over the Indian Ocean back to Africa, to Kenya. We arrived at the Ark, one of the game lodges high in the mountains, on July 30, Marvin’s birthday. “May I call Dad? Wish him a Happy Birthday...

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Chapter Twenty: Back in the Land of Fear

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pp. 153-160

The return from Africa threw us into a dark reality. In some bizarre way, I seemed to be experiencing things in reverse. Africa, the dark continent, had given me hope, and I had felt light and harmony. Back here, in our “white” world, I felt fear and an unlit void. Stephanie picked up on my moods, and they mirrored in hers. My days were...

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Chapter Twenty-One: The Black Knight

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pp. 161-172

Clad in black leather, he appeared out of nowhere on his black Harley Davidson steed, and he caused Stephanie’s reason to fly off, on the draft of wind, the wind created by riding at top speed through our nearby canyons. How she loved the feeling of freedom on the motorcycle—and fell for the allure of the forbidden...

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Chapter Twenty-Two: New Beginnings

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pp. 173-176

Our house was on the market again and I kept busy making it presentable for the many “Open Houses” we had. I can’t count the many gladioli I bought for the downstairs rooms, and the many cinnamon muffins we wound up eating after the potential buyers left. I fell for the real estate agent’s advice to brew fresh coffee and bake muffins...

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Chapter Twenty-Three: The Golden City

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pp. 177-184

The sun appeared behind billowing clouds as we neared Santa Barbara on Highway 101. The Pacific to our left glittered metallic, dotted by otherworldly invaders, squatting on spidery legs in the shimmering sea; utilitarian ugliness —oil platforms. And beyond in the distance floated the Channel Islands...

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Chapter Twenty-Four: Special Olympics

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pp. 185-189

Santa Barbara had a few distinctive neighborhoods, most of them close to the Pacific. Through WTP we had both become acquainted with the Mesa, a safe middle-class area where we rented an apartment on Rose Avenue for Stephanie, not far from where she had lived with the three other girls from WTP. It was a nice two-bedroom apartment...

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Chapter Twenty-Five: Two Weddings, Three Funerals

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pp. 190-198

“Mom, I met the cutest guy today!” Stephanie announced, bouncing past me into the house. “A blond surfer-boy!” Later I met the young man with the sun-streaked hair, bronzed skin, and luminous brown-green eyes. Loren had spent the last few months in Hawaii visiting his stepbrother and...

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Chapter Twenty-Six: Changes

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pp. 199-209

The residents of Santa Barbara are fortunate to have excellent adult education classes associated with the local city college. Stephanie expressed an interest in some of the authors’ lecture programs. I took her along to several and later found two short essays she had written in February 1993...

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Chapter Twenty-Seven: Navajo Land

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pp. 210-215

Stephanie heard me talk to Aida about longing to visit the American Southwest, my beloved landscape. She chimed right in and said, “Mom, why don’t you take me with you. I’d love to see all that too and meet the Navajos; meet the friends you made.” “Steff, I go there to interview people and take...

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Chapter Twenty-Eight: Falling in Love Again

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pp. 216-225

It was one of those golden days in October, when air and water still carry within the warmth of summer. Martin, Stephanie, and I, and Capri also were swimming at East Beach. The sun hung low. We were floating on our backs in smooth seas, and the water reflected the light with a bronze sheen...

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Chapter Twenty-Nine: Spirit Visit

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pp. 226-230

Saturday arrived too quickly. This was our last day at the Oaks’ mother and daughter week. The day dawned gray when Stephanie crept into my bed, snuggling close. She nudged me, “Mom, Grandma was here again this morning...

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Chapter Thirty: Rainbows and Moonbows

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pp. 231-234

The end came without warning. Without signs. She stepped into the steaming tub, soaked, and sang as was her habit, then suddenly her voice was still. No sound, but for the water, drip by drip pulling through the drain. The stillness alerted him. He opened the door to see if she was all right. The water had run out. She lay with her head touching her shoulder...

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Chapter Thirty-One: Things a Mother Should Never Know

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pp. 235-238

I read the coroner’s report. A mother should not read the weight, in ounces, of her child’s heart. Or learn the size of it. But I had to know what the report said about the medication in Stephanie’s system. Had she forgotten to take her medicine? The report stated that no medication was found in her blood and sixty-eight Mebaral pills...

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Postscriptum

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pp. 239-255

Marvin Finell died in October 1998. He had suffered from progressive supranuclear palsy (PSP). It is a brain disease that takes years to develop, while in the interim it destroys part of the brain. In its early stages it mimics Parkinson’s disease. It changes the person’s personality and...


E-ISBN-13: 9780826272928
Print-ISBN-13: 9780826219930

Page Count: 224
Publication Year: 2012