Not What I Expected: My Life with a Brain Injury (I didn’t know I had!)

Not What I Expected: My Life with a Brain Injury (I didn’t know I had!)

Sara E. Lewis

Recovery from her physical wounds was all that seemed to matter back in 1977 when Sara’s legs were badly broken in car crash that upended her college graduation and shiny new career plans.

Imagine living your life with an undiagnosed brain injury. No one told Sara Lewis about the “severe concussion” noted by a doctor at the hospital. So she lived for nearly 3 decades with a brain injury she didn’t know she had. During those years, frustration over thinking problems grew. Wrong turns, misunderstandings, and defeats at work and at home led to emotional and behavioral meltdowns that are the hallmark of so many brain injuries. Public awareness was growing, but not fast enough to save Sara from ruining her career, losing friends, and becoming more and more isolated.

Even after her traumatic brain injury was diagnosed, it took another decade and another trip to graduate school to become a speech-language pathologist for her to understand its impact on her life. Acknowledging and adapting to her brain injury has finally freed her to live her life fully as a survivor of a brain injury.

Not What I Expected is also available as an eBook click here.

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Full Description

When the fog lifted, Sara saw her mother sitting beside the hospital bed and asked what was going on. “Sara do you know you wrecked your little Volkswagen?” As the story unfolded the 22-year-old was mad and madder still that she had missed her graduation from the College of William and Mary and would have to go back home again. She had expected to go to graduate school and move on with her life.

That was 1977 and it would take 27 maddening years to find out why life never went the way she expected. Few people truly live the life they expect, but when this many emotional meltdowns and this much impulsive behavior happens, missteps are more than chance occurrences. Jumping from one career to the next, Sara thought that all she had to do was change something in the details. Whatever it was would go away. But it didn’t. Then, depression and a close encounter with suicide sent her to a neuropsychologist who finally confirmed that her puzzling life was typical for a person who had sustained a brain injury.

This fascinating personal account by Sara Lewis yields terrific insights into the complex and confusing maze of undiagnosed brain trauma. It is a testimony to her will – and that of so many other invisible undiagnosed survivors – in their struggle to understand and successfully navigate their world.

Details
Item NWIE
ISBN# 978-1931117838
Pages 194 pages, soft cover 7 x 8.5
Year 2015

Authors

Sara Lewis was brain injured in a motor vehicle crash in 1977. She worked as a museum curator, product manager, marketing copywriter, marketing manager, and director of communications until the residuals of the injury caught up with her in 2004. Afterward she found a part-time job at a county park and worked as a freelance writer until her father’s stroke in 2009 introduced her to the field of speech-language pathology. She went back to school and earned an MS in Communication Sciences and Disorders in 2013.

Currently, she facilitates brain injury support groups in Newport News and Williamsburg, Virginia, and owns a private practice, Communication Therapy LLC. She blogs about brain injury and speech-language pathology on her web site, www.thebraininjuredslp.com. Sara and husband Ken have four adult children and four grandchildren.

Contents

  • Chapter 1 – My brain was born
  • Chapter 2 – Was I really her?
  • Chapter 3 – The Nexus
  • Chapter 4 – Does it matter how bad it is?
  • Chapter 5 – My graduation story
  • Chapter 6 – Somebody’s going to pay
  • Chapter 7 – Home again, home again . . .
  • Chapter 8 – I should not have been there, but anyway . . .
  • Chapter 9 - Interlude
  • Chapter 10 – Graduate school therapy
  • Chapter 11 – I wish I was in the land of cotton, old times there are not forgotten . . .
  • Chapter 12 - What the hell was I thinking?
  • Chapter 13 – It’s a blur
  • Chapter 14 – Not a public relations success, but progress!
  • Chapter 15 – Love in the ruins
  • Chapter 16 – Prozac changed (what was left of) my life
  • Chapter 17 - Crescendo
  • Chapter 18 – I’m not crazy!
  • Chapter 19 – Tell me I’m not a failure now, Mama
  • Chapter 20 – My decade of the brain
  • Chapter 21 – (Barely) managing a brain injury I didn’t know I had to manage
  • Chapter 22 – My stroke of insight
  • Chapter 23 – Four long, learning years in my fifties
  • Chapter 24 – I am speechless
  • Chapter 25 – Onward, to the rest of my life
  • Chapter 26 – Acceptance
  • Epilogue

Excerpts

The guy who was driving the other car held my bloody head in his hands until the rescue squad arrived. Thirty-eight years after the car crash that reshaped my dreams and resized my life, I read about the details of the night as I sat at a small table in the chockablock file room at the court clerk’s office. Events were recalled by the defendant in his answers to my attorney’s interrogatories. His matter-of-fact description of proceedings rolled through my body like a tremor felt during a deep, short earthquake. My stomach dipped and everything inside shook a little and then it was quiet. My face burned and tears oozed up to blur and magnify the serifs and fuzzy edges of Courier type that floated on top of the aging paper.

On Thursday night, April 28, 1977, my baby blue Volkswagen Beetle slammed head first into the side of a 1969 Oldsmobile sedan at a quiet intersection in Williamsburg, Virginia. Just after sunset on a damp and moonless night, Mr. Squires got out of his car and walked over to where mine had come to rest. He saw me through the window, slumped on the floor, apparently unconscious.

I can just imagine, seconds earlier, the skid followed by a hard bang that stilled the chirping crickets and jolted a nearby family from their half sleep in front of the television. Two young boys sprang up and ran outside to see what had happened, screen door slamming with a metallic clatter behind them. Squires couldn’t open the car door, so the kids ran home again to get a crowbar. By the time they got back with the tool the deputy sheriff had arrived, and he pried the door open. The little boys probably stood back, gawking at blood and bone, as the adults planned how to pull me out. My legs were mangled and my head was bleeding.

In 1977, when I was a senior at the College of William and Mary, brain injury wasn’t well understood. The hospital records I retrieved decades later include the scribbled notes of concern about my neurological state by the orthopedic surgeon and two other doctors who were called in for consults. But nothing was done after a CT scan, new technology to that place and time, appeared normal. No one talked to my family about what the doctor noted as my “severe concussion,” a brain injury that would probably be considered “moderate” by today’s mild-moderate-severe measurement paradigm. I was in the hospital for five weeks and released. When I told the doctor at a follow-up appointment that I had this bothersome prickly feeling in the left side of my body and that I couldn’t feel hot or cold or pressure or pain on that side and that sounds in my left ear were garbled and buzzing, he told me that it would probably go away in 10 years or so.

In the beginning, I tried to get on with my life as I had expected it to unfold, because I was unaware of the “severe concussion” too. I was not coached to be on guard for the stealthy ways brain injury would affect every aspect of my life. After 27 years enduring mysterious pains, cognitive challenges, emotional highs and lows, fractured relationships, and career missteps, I saw a neurosurgeon for a pain in my neck. He sent me to a neuropsychologist who sent me to a neurologist.

Then, in fits and starts, I began to learn more about brain injury. In 2009, after my father sustained a brain injury of another sort, a cerebral vascular accident or stroke, I saw a reflection in him of my cognitive weaknesses. I was curious about his aphasia, so I took classes in speech-language pathology. Then I finally began to understand what had happened to my brain.

But that’s not all. Learning about brain injury didn’t make it go away. Rather, it brought about a new and larger awareness: Now I knew that, not only had I lived with a brain injury, but I would continue to live with a muddle of brain injury-related disorders for the rest of my life. I went to a conference recently where I heard that brain injury professionals are trying to reframe how we think about brain injury. It should not be considered as an event to be treated and cured. Brain injury is a chronic, or life-long, disease that must be managed. I couldn’t agree more.

Now, at last, I get it. I live with brain injury. It is a relief to know I can manage the future of this chronic condition, even if I can’t undo the past. Sometimes I ruminate on that time gone by. I have to work hard to get past feeling sorry for myself for all of the time, money, and happiness I have lost and for the material comforts I will never know. At first, the condition I didn’t know I had made me do regrettable things, and then, once I knew, I still made mistakes until, finally, I am learning to manage it rather than having it manage me. This takes a lot of hard work to accept and execute….

In a mash-up of philosophy and neuroscience, I am beginning to see the angst and pain of my 38-year brain-injury journey in a more spiritual light, which lit a path to this book. Socrates is credited with saying that the unexamined life is not worth living, so I examine my brain-injured life here, for the sake of getting it all out, getting past the pity party, and embracing myself. I was too agitated earlier to slow down and contemplate my true nature and the implications of brain injury on my ability to live meaningfully. Unfortunately, symptoms conspired to hijack the life I had expected. I made mistakes and burned bridges, again and again. I can’t blame everything on brain injury, but some things I clearly can. Writing them down helps me examine and process which are which. It helps me get past the regrets and embarrassments related to brain injury and those related to the unexpected conclusions typical of any life. Now that my expectations for a realistic future have being right-sized, I can begin to live the rest of my brain-injured life more gracefully and intentionally.

My very kind husband gently told me not to whine. “Just tell the story,” he said. I have tried to do so, in a quest for inner peace. And, importantly, to complete a worthy memoir that brings insight to others, especially those who were brain injured before the 1980s – the dark ages in terms of understanding brain injuries. We were brain injured before brain injury was diagnosed and thus missed the boat to early intervention and rehabilitation. Just a few years later, in the late twentieth century, technology and brain science made bold moves forward. And then, the perfect storm of the twenty-first century happened. The signature wound of our longest war and revelations of injuries in the National Football League brought public attention and buckets of money to the task. Now, things are moving right along and many who suffer injuries, though sadly not all, are guided past the potholes created by stretched and broken axons to earlier acceptance of a new normal. We are developing new technologies and funding research that will, at last, decode and inform rehabilitation of the amazing brain. We are all born with one that becomes, with care and hard work – and even after enduring injury – a singular work of art.

Reviews

A book review by Rosemary Rawlins...

Not What I Expected: My Life With a Brain Injury (I Didn't Know I Had)

By Sara E. Lewis

"In 1977, when I was a senior at the College of William and Mary, brain injury wasn't well understood. The hospital records I retrieved decades later include the scribbled notes of concern about my neurological state by the orthopedic surgeon and two other doctors who were called in for consults. But nothing was done after a CT scan, new technology to that place and time, appeared normal. No one talked to my family about what the doctor noted as my 'severe concussion,' a brain injury that would probably be considered 'moderate' by today's mild-moderate-severe measurement paradigm. I was in the hospital for five weeks and released. When I told the doctor at a follow-up appointment that I had this bothersome prickly feeling in the left side of my body and that I couldn't feel hot or cold or pressure or pain on that side and that sounds in my left ear were garbled and buzzing, he told me that it would probably go away in 10 years or so.

In the beginning, I tried to get on with my life as I had expected it to unfold, because I was unaware of the 'severe concussion' too. I was not coached to be on guard for the stealthy ways brain injury would affect every aspect of my life. After 27 years enduring mysterious pains, cognitive challenges, emotional highs and lows, fractured relationships, and career missteps, I saw a neurosurgeon for a pain in my neck. He sent me to a neuropsychologist who sent me to a neurologist.

"Then, in fits and starts, I began to learn more about brain injury. In 2009, after my father sustained a brain injury of another sort, a cerebral vascular accident or stroke, I saw a reflection in him of my cognitive weaknesses. I was curious about his aphasia, so I took classes in speech-language pathology. Then I finally began to understand what had happened to my brain."

Click here to see the original post by Rosemary Rawlins on brainline.org

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