Brain Injury Story Project: TBI Voices
The Brain Injury Voice is not the voice we would expect to hear. It is not a voice of confusion, not a voice of dementia. Rather the Brain Injury Voice is a troubled voice. It is a voice that can often articulate that which an ordinary person has rarely thought about – abilities, abilities lost, disability. The brain injury voice is a depressed voice. The brain injury voice is a voice where new hope diminishes quickly. It is a voice seemingly preoccupied by deficits that the non-injured take for granted – a phone call’s distraction, a forgotten intention, getting lost, lost time.
Due process requires a sworn oath from 12 people sitting in a jury box. Jurors are not to make up their mind until they have heard all of the evidence. To make the differential diagnosis of brain injury the doctor must hear not only the individual patient’s story, but have heard the collective chorus of the brain injury story. Medicine is not a courtroom, diagnosis not a debate. Yet TBI Voices is promulgated on the theory that no diagnosis can be made of any disorder, but certainly not of any disorder of the mind, without listening to the voice of the patient. Doctor, William Osler, one of the legendary doctors who developed the concept of Grand Rounds said “every client has a right to tell his story. Once the doctor removes himself from the patient’s story, he is no longer the doctor.”
Telling the Brain Injury Story
This website is here to tell the story of a myriad of brain injury voices, so that the uniqueness of this disorder to each individual can be understood, but also so that certain commonality can be seen in those voices. Like in a choir, each brain injury voice has its own tone, its own resonance, yet together, they create a chorus.
TBI Voices is here to record that symphony. It will be broken out into different compositions, in most cases the words of the brain injury survivor will take the lead, but that voice will be harmonized with the perspective of those who have known the patient, against the score of the objective evidence of the extent and nature of the brain injury suffered.
We will begin that journey with the insightful voice of Angela Jones, whose solo clarity makes her voice heard above the chorus, even though that voice is in a consistent minor key and may carry on, far beyond the theme the composer scripted. The reader will want to know that some of the names of our brain injury survivors have been changed.
Angela Brain Injury Essays
Much of this first installment in TBI Voices is written by Angela – even those portions of which may be written in the third person. Referring to oneself in the third person, in the past tense, is a common approach for brain injury survivors. A consistent debate in discussions of “Who Am I, Again” is whether the dramatic change in personality and ability after a significant brain injury involves the essential death of the survivor, with some new person emerging. As said in our opening line, these are not the words of someone demented, not the words of someone with a diminished IQ, or even with traditional memory problems. Yet that Angela was significantly brain injured in her crash is undeniable. She was unconscious for five minutes at the scene and her level of awareness was decreasing two hours post her injury when the ER staff elected to intubate and sedate her to prevent her from fighting her restraints. The neurosurgery diagnosis from the morning of the wreck, which finds her to have a “subarchnoid hemorrhage.”
Now in Angela’s own words:
I am overwhelmed in my effort to capture all the right words and put them into the perfect essay. I recognize that my life experience is worthy of a book and my attempt to summarize it in small snip-its would only minimize what it is that the collection of opportunities and experiences has added up to, and exists within me. So I will have faith that the light of my experiences will illuminate without words and you will recognize my potential without explanation.
In June of 2007 I was in an automobile accident and sustained a moderate, complicated traumatic brain injury; you might be asking what that means and I wish that I could tell you exactly, but there does not seem to be one answer.
For me what it meant is that in a split second everything I knew about myself was thrown into question and I was forced to journey through my life with the same will and determination to succeed but with fewer skills to lead the way.
Unwilling to quit, it has been three years and I am still working to overcome this obstacle and find a way to accomplish my goals.
To say that recovery from brain injury is difficult would do no justice to the anguish that came from realizing that the strengths and skills responsible for leading me in a life of success were severely impaired or nonexistent. It has been devastating to realize what was left. Moving on meant saying goodbye to my best friend of 32 years – “ME” – the most difficult thing I could ever have be asked to do.
In a matter of seconds, I became a stranger to myself. I miss the old me so much that I question why I would survive the accident only to be forced to live in the shadow of my former self. But I know that the important parts of me were not lost even though it is a constant battle for me to find my way in a world that is moving so fast that I cannot keep up.
In my darkest times when I did not think I could go on even a single step further, I have been guided to people and opportunities that lifted me up enough that I could continue on the path a little further. It is for this reason that I am confidant that surviving the accident had to be a part of a bigger plan. I no longer believe that it is possible that everything I have done and everything I had accomplished in my short life was meant to slip away unnoticed by the world.
So here I am ready to begin again determined to find a different path and another way of defining success. I have been blessed with the realization that although there are many things about me that are different what I want in life is the same.
I want to live, learn, love and grow, I want to take every opportunity to make the world a better place. I want to know when I look back on my life I had as many positive experiences as possible.
Understanding now, better than ever before that it is necessary to find your way through the difficult times in order to appreciate the wonders of the positive ones that follow. I am confident knowing that no matter which card I was holding I made the best of every experience, good or bad and that no matter what, I am a better person for having made the trek.
I am excited to begin a new life.
In the above essay, Angela struggles to find hope.
Next we will hear her voice of despair. Both voices are Angela, both are Brain Injury Voices.