**********************A Verbal Collage**********************************
I've spent the last few entires talking about the three characters in “Who Am I, Again?” who are residents at the Crumley House - Larry, Sarah, and Tony. As part of this, I highlight the three actual residents used as models - using the pseudonyms of “Peter”, “Jessica”, and “James” - but its important to remember the journey of each of the above characters is an amalgamation of stories collected from many residents. Stories were picked that I felt highlighted common experiences in recovery and have themes that I heard repeated by multiple residents. The choice to use the specific residents as models came from a sense that - at their stage in recovery, - these residents would be able to present a clear storyline of recovery to an audience that might not be familiar with brain injury.
With that said, I will use the rest of this entry to describe some of the other residents at the Crumley House - the goal being to demonstrate the wide variety of people recovering from brain injury and to emphasize that there can be no “cookie cutter” recovery plan as each situation is dramatically different. Each resident discussed below will be described using a pseudonym in quotation marks - “name”.
The first person that must be presented is “June”. “June” is the reason the Crumley House exists - when she was a young adult, “June” went through an accident that caused TBI and her family had the finances and associations to be able to begin the Crumley House Brain Injury Rehabilitation and Living Center. This center now provides a valuable rehabilitation resource for the region as well as gives a place for “June” to live and develop.
This background presents a beautiful, inspiring, television daytime-drama beginning to “June’s” story, but when getting to know “June”, one can see she is clearly not “Made for TV”. When I began working with the Crumley House, “June” had already been a resident for more than a decade and she had the characteristics that caused her seem like an over-forty-infant - endless excitement or sorrow immediately wiped away by the next distraction. Her communication came in one or two word sentences - spoken in an urgent, strained tone - and expressing only necessary thoughts - “Hungry” - “Uh oh” - “I love you”. She expressed her love to everyone, and while I do think she used this phrase as a tool to get favors from the staff, I also believe she genuinely felt love to every part of the world that showed her kindness. I also believe that the thoughts coursing through her brain were infinitely more complex than she was able to express, but somewhere in her highway of thought process there was a detour caused by her injury, and the neurons containing more complete ideas got lost in the rambling country roads of her mind.
Despite her difficult and extended rehabilitation process, during even my relatively short time working with the Crumley House, “June” continued to make clear gains in her recovery - moving from life in a wheel chair to some assisted walking, to taking a few steps on her own - the beginnings of expressing rational for her actions and understanding a cause-effect relationship between actions and results - the recognition of emotions displayed by other people, and seeking to provide comfort or a shared joy. These are small steps, and I do not know if “June” will ever recover to a point where she can be more fully and independently engaged in the world, but each step is progress. Always ready to face the long journey and take a few more steps, usually without encouragement or insistence by the staff - “June” would recognize the rehabilitative task set before her and put her energies into completing the challenge to the best of her abilities - this determination became a source of inspiration for everyone around her. Unfortunately, due to cognitive limitations, I was not able to interview “June” for my storytelling piece, but the experience of life with her clearly helped to color every moment and every story collected at the Crumley House.
Another resident who had difficulty escaping from his wheelchair is “Steve” - an older veteran who’s body was paralyzed in a hunched position. “Steve” moved through the Crumley House with the authority of aged royalty - he didn’t impose his will on anyone, but all the residents bowed aside so that “Steve” could maintain his routine - everyone knew that when it was time for “Steve” to play Mario Wii Golf - and they could join him in a game, but would never stop him from playing. “Steve” had trouble speaking - with the damage to his throat and the nerves controlling his mouth limiting his utterances to what at first seemed only grunts and moans - but as I came to know him, I learned parts of his nonverbal language and how to understand his patented personal communication techniques - collecting pieces of his story and sharing in his experience.
“John” was a resident usually found beside “Steve” when he was playing his Wii Golf. A former military man, “John” had the body type of an NFL linebacker, though years of recovery had formed a layer of pudge that coated the muscles. Having regained many of his motor skills, “John” could move freely and perform most self-care tasks without assistance, though more complicated procedures might become tangled in his thought process. “John” employed and enjoyed clear, simple logic that recognized a “right” and “wrong” way of behaving, and this clear bifurcation of his world could ignite impassioned responses if his clear morality was called into question. Often “John” wondered about the grounds of the Crumley House with a seemingly childish desire for simple pleasures, but when I interviewed him, his persona dipped into an quiet, introspectively innocent wisdom gained through his experiences.
Yet not all the residents were pleasant to interact with. “Stella” was a resident who wore a spiked shell at all times - aggressively contradicting anything that didn’t follow her demands. She was a large woman - by which I mean big and strong, not fat, and every sound and movement she made was forceful - as if she was trying to tear down any wall that might limit what she intended to do. “Stella” could move moderately fluidly and spoke with clear diction, but she carried a bundle of aggression that seemed to be endlessly boiling over. At first glance, one might think “Stella” ready for interaction with the outside world, but within a short time of being around her, one would realize her slower cognitive processes as well as regular emotional setting of anger. Interviewing “Stella”, however, was remarkably easy, and when we spoke she shared surprisingly coherent stories that displayed a range of emotional experiences - it almost seemed as if her public persona of anger was a defense that she clung to, though I leave that as merely a speculation, as I am not qualified to make such a claim.
These descriptions could continue for chapters - dozens of residents lived at the Crumley House during the time I was involved with the facility - some for the full time while others for only a few weeks - and each resident had his or her own unique set of difficulties that came as a result of TBI and methods for adapting to new ability levels while finding inspiration.
There was “Billy” who cherished all things “coun’ry” and loved horses and the idea of ranch life so much that, despite needing a wheelchair, he found a way to ride and care for horses at least once a month.
And “Cynthia”, an aging hippie who - if approached while having her cigarette - would recall seeing Janis Joplin or Jefferson Airplane in a smoky rasp that would fade away as words escaped her, but the story played across her eyes.
And “Ben”, the high school senior star athlete left in a full body cast after a skiing accident - who couldn’t talk in more than grunts, as he couldn’t move his mouth, but learned to communicate his insistent joy bringing a smile to even the darkest cynic.
And more..
Each resident comes from a his or her set of circumstances and has his or her unique set of difficulties - yet every person is engaged in the process of recovery. Earlier in this blog (Scene 01-Introduction), I suggest that where the story of recovery begins isn’t important, and I hold by those words - the residents at the Crumley House, a relatively small rehabilitation facility in rural Tennessee, display just a part of the spectrum of attitudes and life situations that can begin a journey of recovery.
When I perform “Who Am I, Again?” people often ask me, “What actually happened in your accident?” - I understand this curiosity and will share my details in the next posting, but I don’t start with that story, nor do I address it in “Who Am I, Again?”, because I want the reader (you) to recognize that the specifics of an accident are not important - an event will cause TBI and that will likely result in an infinite variety of complications and questions that a survivor must come to understand so he or she can appropriately adapt to his or her situation. When TBI occurs, everything changes - it’s not the story of where you come from but the story of how you get through it that matters.
Those are my thoughts. Thanks for reading.
Please subscribe, share, and leave comments below.
Chat soon.
Please note, the scenes appear in reverse order and may cause confusion. To get a clearer understanding of the story, please start with the early entries in the blog. Thanks - enjoy.
Tuesday, February 21, 2017
Monday, February 13, 2017
Scene 04-Tony's Introduction
***************************Tony’s Introduction**************************************
Tony doesn’t actually remember the day of his accident with his fiancé.
Well, not the day of, or the week leading up to it,
But I remember ten days previous to the accident,
I’m sitting there with my fiancé and my soon to be mother-in-law,
We was making plans for the wedding,
she and I, we’re arguing about - wineglasses or something,
My fiancé’s sitting over there -
and the hardest thing I had to, kinda keep re-teaching myself as I “came back to life” after this accident with my fiancé,
I was the only survivor.
*********************************************************************************
The events surrounding the incident that causes TBI are almost always a blur - everything is happening in a relatively normal manner - in Tony’s case, he was driving home from a party with his fiancé - and suddenly you’re waking up in a hospital with hours, days, or sometimes years removed from the event. You don’t understand where you are or why you can’t do the things you are supposed to be doing - it doesn’t make sense and you want to get back to the life you know and understand.
This desire is common among survivors and seemed to exist in the Crumley House Resident who became the model for Tony’s characteristics - I will call him “James”.
A former construction worker from central Tennessee, “James” came from a hands-on, working background focused on the completion of physical projects as a mark of the day’s success. He was also cautious about whom he trusted, and it was hard to form a friendly relationship - though I did see him naturally reach out to new male residents at the Crumley House, seeming to enjoy behaving in a “big-brother” manner as residents became situated in their accommodations. Despite his willingness to assist others, “James” did not appreciate having to ask for assistance and resented when the rules of the establishment - as opposed to his personal limitations - restricted what he was able to do. Despite jerky movements, it seemed that by his physical abilities, “James” could have operated outside, though he would likely have limited employment options and certainly wouldn’t be able to return to construction work - he could also at times display a vengeful, violent temper, and I suspect that this may have provided ample reason to remain at the Crumley House.
It’s from these characteristics that I created the character of Tony.
In the piece, Tony represents the struggle discussed at the start of this essay - wanting to return to how things were before his accident - and anger at the limitations imposed by the recovery restricting his ability to make that return.
As human’s we have a desire for consistency - we want to know that what is true today was true yesterday and will continue to be true tomorrow - the bagel shop on the corner opens before 7am and has fresh coffee. Even relatively small discrepancies in that consistency can cause frustration - what, why the hell is the bagel shop closed today - but when brain injury occurs the hope of any consistency is gone. Everything changes. Yet there tends to be a (false) belief that the goal of recovery is to return to the pre injury consistency. Due to difficulties with memory after the accident, this disruption of consistency can be further accentuated because, even if the changes are consistent - the bagel shop has actually been closed for two years now - the surviving person may have difficulties remembering that the changes occurred, and this creates uncertainty about the new “normal”.
With somewhat trivial changes - the bagel shop - this can be frustrating but is manageable - but when a life situation is irrevocably altered due to a survivors situation, this can be damning. In the character Tony’s situation, his fiancé died next to him in the car, but he had to be reminded of her death each day of his early recovery.
I am a fellow survivor, but I cannot fully comprehend the enormity of this tragedy.
His anger makes sense to me. When the world that you spent a lifetime building is torn asunder and you must be reminded of it each day, an understandable anger can arise. These circumstances, however, while accounting for a source of the anger, do not excuse it - to state this in an crassly, unsympathetic, pragmatic manner: Shit happened, now deal with it.
I have had anger issues that have come up in my recovery process - both in the intensive recovery immediately after the accident and the years that have followed - and I understand that, in reality, the bluntness of this advice is absurd - emotions are not switches that can be tuned to the correct setting - but the truth of the statement remains. The fact that brain injury, and the particularities of the tragedy surrounding it, occurred cannot be changed - the primary goal of recovery must be to adapt to these new circumstances. This does not mean one should deny the pain or anger caused by the events, but learn how to accept the situation and continue personal growth.
In Who Am I, Again?, Tony is in the process of making this adjustment - he still longs for the past and in some cases dwells in it, but is still conscious of the necessity of moving forward. What I have come to realize as I reexamine the characters and stories in this piece, of the three residents, Tony is the natural storyteller - his stories, while true, tend to be presented in a slightly grandiose manner and with a storyteller's flair (this will be demonstrated and discussed more in future posts). Similarly, “James” - while viewing the idea of storytelling as a profession with slight distain - loved to share his own stories and seemed to be conscious of presenting the facts in a manner that would elicit a reaction.
Sensing the storytelling flair of “James” is only an observation and I cannot support it with quantifiable data - I am relying on my abstract “storyteller’s instinct” to reach this hypothesis - but I posit that, if my instinct is true, it seems possible - perhaps even likely - that by embracing his storytelling tendency, “James” is finding a way to better understand and come to grips with his current experience (please leave your thoughts in the COMMENTS below).
While the experience and motivation for “James’s” storytelling is not available to me, I have come to recognize this motivation does exist in the character of Tony, though I did not consciously imbue him with this quality when composing the piece. This returns to some of the ideas presented in the second entry of this blog (Scene 01-Introduction) - and after nearly a decade of working with the character, I have come to recognize that Tony uses his ability to create a gripping narrative as a way to better understand his personal situation in recovery. Please note, I recognize that using “the recognition of the tendencies in a character” that I created to support my own argument concerning the healing process of storytelling becomes almost absurdly “meta” - and I do not mean to imply that this constitutes any sort of solid “proof”, but it is an idea that I will continue to explore as I relate and comment Tony’s stories in future postings.
But until then, please leave your thoughts, however pragmatic or meta they may be. As I write, my fingers are spitting out a lot of ideas and I would love to hear your arguments for or against - my hope is that these essays help to start a conversation so together we can discover what recovery means and how to make this journey in the best way possible.
Those are my thoughts for this entry, thanks for reading. Quick note - I'm going on a short vacation, so there will be no more posts this week, but I will be posting next Monday, so keep an eye out. Thanks for reading.
Tony doesn’t actually remember the day of his accident with his fiancé.
Well, not the day of, or the week leading up to it,
But I remember ten days previous to the accident,
I’m sitting there with my fiancé and my soon to be mother-in-law,
We was making plans for the wedding,
she and I, we’re arguing about - wineglasses or something,
My fiancé’s sitting over there -
and the hardest thing I had to, kinda keep re-teaching myself as I “came back to life” after this accident with my fiancé,
I was the only survivor.
*********************************************************************************
The events surrounding the incident that causes TBI are almost always a blur - everything is happening in a relatively normal manner - in Tony’s case, he was driving home from a party with his fiancé - and suddenly you’re waking up in a hospital with hours, days, or sometimes years removed from the event. You don’t understand where you are or why you can’t do the things you are supposed to be doing - it doesn’t make sense and you want to get back to the life you know and understand.
This desire is common among survivors and seemed to exist in the Crumley House Resident who became the model for Tony’s characteristics - I will call him “James”.
A former construction worker from central Tennessee, “James” came from a hands-on, working background focused on the completion of physical projects as a mark of the day’s success. He was also cautious about whom he trusted, and it was hard to form a friendly relationship - though I did see him naturally reach out to new male residents at the Crumley House, seeming to enjoy behaving in a “big-brother” manner as residents became situated in their accommodations. Despite his willingness to assist others, “James” did not appreciate having to ask for assistance and resented when the rules of the establishment - as opposed to his personal limitations - restricted what he was able to do. Despite jerky movements, it seemed that by his physical abilities, “James” could have operated outside, though he would likely have limited employment options and certainly wouldn’t be able to return to construction work - he could also at times display a vengeful, violent temper, and I suspect that this may have provided ample reason to remain at the Crumley House.
It’s from these characteristics that I created the character of Tony.
In the piece, Tony represents the struggle discussed at the start of this essay - wanting to return to how things were before his accident - and anger at the limitations imposed by the recovery restricting his ability to make that return.
As human’s we have a desire for consistency - we want to know that what is true today was true yesterday and will continue to be true tomorrow - the bagel shop on the corner opens before 7am and has fresh coffee. Even relatively small discrepancies in that consistency can cause frustration - what, why the hell is the bagel shop closed today - but when brain injury occurs the hope of any consistency is gone. Everything changes. Yet there tends to be a (false) belief that the goal of recovery is to return to the pre injury consistency. Due to difficulties with memory after the accident, this disruption of consistency can be further accentuated because, even if the changes are consistent - the bagel shop has actually been closed for two years now - the surviving person may have difficulties remembering that the changes occurred, and this creates uncertainty about the new “normal”.
With somewhat trivial changes - the bagel shop - this can be frustrating but is manageable - but when a life situation is irrevocably altered due to a survivors situation, this can be damning. In the character Tony’s situation, his fiancé died next to him in the car, but he had to be reminded of her death each day of his early recovery.
I am a fellow survivor, but I cannot fully comprehend the enormity of this tragedy.
His anger makes sense to me. When the world that you spent a lifetime building is torn asunder and you must be reminded of it each day, an understandable anger can arise. These circumstances, however, while accounting for a source of the anger, do not excuse it - to state this in an crassly, unsympathetic, pragmatic manner: Shit happened, now deal with it.
I have had anger issues that have come up in my recovery process - both in the intensive recovery immediately after the accident and the years that have followed - and I understand that, in reality, the bluntness of this advice is absurd - emotions are not switches that can be tuned to the correct setting - but the truth of the statement remains. The fact that brain injury, and the particularities of the tragedy surrounding it, occurred cannot be changed - the primary goal of recovery must be to adapt to these new circumstances. This does not mean one should deny the pain or anger caused by the events, but learn how to accept the situation and continue personal growth.
In Who Am I, Again?, Tony is in the process of making this adjustment - he still longs for the past and in some cases dwells in it, but is still conscious of the necessity of moving forward. What I have come to realize as I reexamine the characters and stories in this piece, of the three residents, Tony is the natural storyteller - his stories, while true, tend to be presented in a slightly grandiose manner and with a storyteller's flair (this will be demonstrated and discussed more in future posts). Similarly, “James” - while viewing the idea of storytelling as a profession with slight distain - loved to share his own stories and seemed to be conscious of presenting the facts in a manner that would elicit a reaction.
Sensing the storytelling flair of “James” is only an observation and I cannot support it with quantifiable data - I am relying on my abstract “storyteller’s instinct” to reach this hypothesis - but I posit that, if my instinct is true, it seems possible - perhaps even likely - that by embracing his storytelling tendency, “James” is finding a way to better understand and come to grips with his current experience (please leave your thoughts in the COMMENTS below).
While the experience and motivation for “James’s” storytelling is not available to me, I have come to recognize this motivation does exist in the character of Tony, though I did not consciously imbue him with this quality when composing the piece. This returns to some of the ideas presented in the second entry of this blog (Scene 01-Introduction) - and after nearly a decade of working with the character, I have come to recognize that Tony uses his ability to create a gripping narrative as a way to better understand his personal situation in recovery. Please note, I recognize that using “the recognition of the tendencies in a character” that I created to support my own argument concerning the healing process of storytelling becomes almost absurdly “meta” - and I do not mean to imply that this constitutes any sort of solid “proof”, but it is an idea that I will continue to explore as I relate and comment Tony’s stories in future postings.
But until then, please leave your thoughts, however pragmatic or meta they may be. As I write, my fingers are spitting out a lot of ideas and I would love to hear your arguments for or against - my hope is that these essays help to start a conversation so together we can discover what recovery means and how to make this journey in the best way possible.
Those are my thoughts for this entry, thanks for reading. Quick note - I'm going on a short vacation, so there will be no more posts this week, but I will be posting next Monday, so keep an eye out. Thanks for reading.
Thursday, February 9, 2017
Scene 03 - Sarah's Introduction
***************************Sarah’s Introduction**************************************
For Sarah there was no warning.
Not really,
I had just dropped my daughters at Little Angles Daycare,
I was going through a green light - it had just turned green -
and Boom.
There was no warning.
****************************************************************************************************
The first sentence of this story segment contains a common experience concerning TBI - there was no warning. I’ve already written about this in a previous post, so I won’t elaborate on it again here except as a reminder of the consistency of an unexpected event begining a journey of recovery from brain injury.
Instead, I will use this entry to speak about the character of Sarah and the woman I used as a model for her - I will use the name “Jessica” for this woman.
To quickly describe “Jessica”, she was a bubble pumped full infectious joy to the paint that her skin was stretched thin by it, and sometimes an unintended criticism or sharp word would cause her to burst into painful self-hate and depression. When my relationship with the Crumley House began, “Jessica’s” condition was such that she had lost her short term memory and would forget what she had been told only hours or minutes earlier - though with regular, repeated exposure people, activities, and schedules would be recognized. Her memory did seem to be improving by the time I ended my work with the Crumley House, but she still tended to rely on her difficulties with memory as an excuse if she got in trouble with any staff at the center (I will write more on this in a future entry).
Being relatively new in her recovery process, “Jessica” was in the process of adjusting to her new world. As I worked with the Crumley House, I witnessed what I felt were several transformations of “Jessica’s” personality - from a new survivor excited by the privilege of living again after her accident, to an angry victim of the world, to a woman settling into her new reality of recovery. This is clearly an oversimplification of “Jessica’s” process, but I present this journey in these three stages because I recognize my own healing journey mirroring that path - and I would hypothesize that this are common stages for survivors of TBI (if you know of any good resources to support or contest this hypothesis, PLEASE LEAVE A NOTE in the comments below - thank you).
With these observations in mind, I created the character of Sarah.
In the timeline of Who Am I, Again?, Sarah is still at the stage of being excited to have survived (as discussed above), but is coming to the difficult realization of her new, different abilities - moving into the second stage of the healing journey outlined above. Sarah embodies the urge to “put on a happy face” and quote inspirational slogans while trying to ignore the pain caused by the new circumstances of recovery.
Looking back on my experience, I feel that in my experience this hope was a chosen naiveté supported and encouraged by healing professionals - especially in early recovery - because of the positive effects on my mood and with the belief that a positive outlook has positive effects on the healing process (again, I believe there is research support this, but would like suggestions of where to find citations - COMMENTS BELOW). I remember reciting words and inspirational stories with such a consistent rhythmic and verbal structure that it was as if I was reading a script - having a background in theatre and an inclination for storytelling most certainly influenced my recitation, but I have observed similar tendencies in other TBI survivors, including but not limited to “Jessica”. I term it a “chosen naiveté” because although an awareness of my situation was beginning to dawn on me, I used these scripted outlooks as an escape from the frightening and uncertain reality of recovery. Furthermore, I feel the healthcare professionals that encouraged this outlook didn’t intend to create a “false hope”, but to acknowledge that there was hope - as previously discussed (earlier posting), the speed of recovery differs greatly for any individual, so hope should never be fully abandoned. Granted, there is a danger in becoming lost in the ideals of what might be and not acknowledging what is - if a recovering person focuses only on what they will do, it is possible to forget to complete the necessary steps to attain that future - but there can be a balance between present reality and future potential.
Sarah has this hope - this focus on the future. Simultaneously, however, she displays the dangers of attempting to ignore the pain that exists behind a hopeful facade. More will be written on both aspects of Sarah in future postings, but these opposing drives - the hope of recovery and the hidden depression - create a dark conundrum that exists in many people recovering from TBI. Keeping the hopeful ideal of recovery at the forefront of a survivor’s public persona seems to provide relief to those close to the survivor - personal relationships as well as healthcare providers - and it is comforting for a survivor to provide comfort to those close, but the dark rumblings of inner depression are hard to hide. This creates a quandary for caregivers - how to support a positive outlook while not ignoring what could become a dangerous depression if negative feelings are allowed to fester.
How does a caring, supporting person find this balance? There is no easy answer, but having raised this question I feel compelled to state my opinion: the best way to support a survivor through this conundrum is by simply being there and listening - not as a professional or someone ready to intervene, but as a friend and companion. That is not to suggest that work with a psychiatrist and/or rehabilitation clinician shouldn’t be employed to help - these are trained and studied professionals who understand the process of recovery and how to assist and protect a recovering person - but as a non-professional trying to help a recovering friend, simply listening allows the survivor to work things out for him or herself. This empowers the survivor - so much of recovery is about doing what the doctors tell you to do that by having someone simply listen, a survivor is better able to recognize the ability and responsibility of self-direction.
Now, I recognize that listening is not always an easy process - especially in early recovery - as narratives may lack a clear temporal plot line or consistent logic, but I encourage allowing the story told by the survivor to take its own path - a listener should not try to insert coherency into the survivors narrative. If a listener feels a need for clarification, questions may be asked, but don’t use questions lead the speaker - let the survivor reach conclusions following his or her own path. Furthermore, and this may be the most difficult and counter-intuitive part, if the speaker reveals that he or she is considering potentially self-destructive behavior, the listener should not attempt to step in and remedy the situation - instead listen and let the survivor complete his or her narrative and, when the situation allows, quietly inform a professional of any fears.
That is my opinion on how a loved one can best help the conflict that arises between appearing hopeful and feeling depressed. Please note, while I have done a fair bit of research and I draw from personal experience for this opinion, I am not a trained professional and I welcome any thoughts concerning this matter (COMMENTS BELOW).
As explained above, Sarah is the personification of this conflict in Who Am I, Again?. In the performance Sarah’s body is always in her chair - unable to escape this conflict - but, despite her motivational responses being somewhat contrived, in her deepest self she recognizes there is hope. It is finding hope amid this amalgamation of emotions that keeps a survivor driven to heal.
I expect that this topic of internal conflict will be explored more in future writings, but until that time, please leave your thoughts and suggested readings in the comments below. Thank you for reading. Chat soon.
For Sarah there was no warning.
Not really,
I had just dropped my daughters at Little Angles Daycare,
I was going through a green light - it had just turned green -
and Boom.
There was no warning.
****************************************************************************************************
The first sentence of this story segment contains a common experience concerning TBI - there was no warning. I’ve already written about this in a previous post, so I won’t elaborate on it again here except as a reminder of the consistency of an unexpected event begining a journey of recovery from brain injury.
Instead, I will use this entry to speak about the character of Sarah and the woman I used as a model for her - I will use the name “Jessica” for this woman.
To quickly describe “Jessica”, she was a bubble pumped full infectious joy to the paint that her skin was stretched thin by it, and sometimes an unintended criticism or sharp word would cause her to burst into painful self-hate and depression. When my relationship with the Crumley House began, “Jessica’s” condition was such that she had lost her short term memory and would forget what she had been told only hours or minutes earlier - though with regular, repeated exposure people, activities, and schedules would be recognized. Her memory did seem to be improving by the time I ended my work with the Crumley House, but she still tended to rely on her difficulties with memory as an excuse if she got in trouble with any staff at the center (I will write more on this in a future entry).
Being relatively new in her recovery process, “Jessica” was in the process of adjusting to her new world. As I worked with the Crumley House, I witnessed what I felt were several transformations of “Jessica’s” personality - from a new survivor excited by the privilege of living again after her accident, to an angry victim of the world, to a woman settling into her new reality of recovery. This is clearly an oversimplification of “Jessica’s” process, but I present this journey in these three stages because I recognize my own healing journey mirroring that path - and I would hypothesize that this are common stages for survivors of TBI (if you know of any good resources to support or contest this hypothesis, PLEASE LEAVE A NOTE in the comments below - thank you).
With these observations in mind, I created the character of Sarah.
In the timeline of Who Am I, Again?, Sarah is still at the stage of being excited to have survived (as discussed above), but is coming to the difficult realization of her new, different abilities - moving into the second stage of the healing journey outlined above. Sarah embodies the urge to “put on a happy face” and quote inspirational slogans while trying to ignore the pain caused by the new circumstances of recovery.
Looking back on my experience, I feel that in my experience this hope was a chosen naiveté supported and encouraged by healing professionals - especially in early recovery - because of the positive effects on my mood and with the belief that a positive outlook has positive effects on the healing process (again, I believe there is research support this, but would like suggestions of where to find citations - COMMENTS BELOW). I remember reciting words and inspirational stories with such a consistent rhythmic and verbal structure that it was as if I was reading a script - having a background in theatre and an inclination for storytelling most certainly influenced my recitation, but I have observed similar tendencies in other TBI survivors, including but not limited to “Jessica”. I term it a “chosen naiveté” because although an awareness of my situation was beginning to dawn on me, I used these scripted outlooks as an escape from the frightening and uncertain reality of recovery. Furthermore, I feel the healthcare professionals that encouraged this outlook didn’t intend to create a “false hope”, but to acknowledge that there was hope - as previously discussed (earlier posting), the speed of recovery differs greatly for any individual, so hope should never be fully abandoned. Granted, there is a danger in becoming lost in the ideals of what might be and not acknowledging what is - if a recovering person focuses only on what they will do, it is possible to forget to complete the necessary steps to attain that future - but there can be a balance between present reality and future potential.
Sarah has this hope - this focus on the future. Simultaneously, however, she displays the dangers of attempting to ignore the pain that exists behind a hopeful facade. More will be written on both aspects of Sarah in future postings, but these opposing drives - the hope of recovery and the hidden depression - create a dark conundrum that exists in many people recovering from TBI. Keeping the hopeful ideal of recovery at the forefront of a survivor’s public persona seems to provide relief to those close to the survivor - personal relationships as well as healthcare providers - and it is comforting for a survivor to provide comfort to those close, but the dark rumblings of inner depression are hard to hide. This creates a quandary for caregivers - how to support a positive outlook while not ignoring what could become a dangerous depression if negative feelings are allowed to fester.
How does a caring, supporting person find this balance? There is no easy answer, but having raised this question I feel compelled to state my opinion: the best way to support a survivor through this conundrum is by simply being there and listening - not as a professional or someone ready to intervene, but as a friend and companion. That is not to suggest that work with a psychiatrist and/or rehabilitation clinician shouldn’t be employed to help - these are trained and studied professionals who understand the process of recovery and how to assist and protect a recovering person - but as a non-professional trying to help a recovering friend, simply listening allows the survivor to work things out for him or herself. This empowers the survivor - so much of recovery is about doing what the doctors tell you to do that by having someone simply listen, a survivor is better able to recognize the ability and responsibility of self-direction.
Now, I recognize that listening is not always an easy process - especially in early recovery - as narratives may lack a clear temporal plot line or consistent logic, but I encourage allowing the story told by the survivor to take its own path - a listener should not try to insert coherency into the survivors narrative. If a listener feels a need for clarification, questions may be asked, but don’t use questions lead the speaker - let the survivor reach conclusions following his or her own path. Furthermore, and this may be the most difficult and counter-intuitive part, if the speaker reveals that he or she is considering potentially self-destructive behavior, the listener should not attempt to step in and remedy the situation - instead listen and let the survivor complete his or her narrative and, when the situation allows, quietly inform a professional of any fears.
That is my opinion on how a loved one can best help the conflict that arises between appearing hopeful and feeling depressed. Please note, while I have done a fair bit of research and I draw from personal experience for this opinion, I am not a trained professional and I welcome any thoughts concerning this matter (COMMENTS BELOW).
As explained above, Sarah is the personification of this conflict in Who Am I, Again?. In the performance Sarah’s body is always in her chair - unable to escape this conflict - but, despite her motivational responses being somewhat contrived, in her deepest self she recognizes there is hope. It is finding hope amid this amalgamation of emotions that keeps a survivor driven to heal.
I expect that this topic of internal conflict will be explored more in future writings, but until that time, please leave your thoughts and suggested readings in the comments below. Thank you for reading. Chat soon.
Monday, February 6, 2017
Scene 02 - Larry's Introduction
***************************Larry’s Introduction**************************************
Now, like I said, this is a verbal collage of stories,
and while researching this story, I became involved with The Crumley House,
a brain injury rehabilitation and living center, located in Limestone, Tennessee.
And while there, I got to hear the stories of the residents at the Crumley House,
Tony, Sarah, and Larry
And when Larry’s story begins,
he was just your average 12 year old boy,
Well, I was a military brat, so I moved around a lot,
Base to base
to base, and I remember, at that age, I was always climbing on things -
Rocks, you got the one story barracks - I was on top - and trees - I remember the last base I was on, we were stationed in Germany, and they had this one tree that just went on forever.
You could climb
to Infinity and Beyond.
And that’s what I was trying to do, so everyday I would climb just a little bit higher,
and higher,
and one day I climbed just a little bit too high, and the branches up there,
they’er not that strong and I…
And that was that.
***********************************************************************************
This story segment begins by referencing The Crumley House in Limestone, Tennessee.
I became involved with the Crumley House through a serendipity of events - I was studying Storytelling at East Tennessee State University, when I was introduced to Storyteller Mrs. Judith Black - and in this meeting I mentioned the story of my accident. I mentioned it, she was interested, we talked about it, and the conversation moved on.
The next day I received a call -
Apparently, Mrs. Black had been talking to the person in front of her in line at the grocery store and learned he managed a regional brain injury rehabilitation center. She volunteered her services as a storyteller, remembered our conversation, and asked if I would like to join her in a performance.
My answer was “Most certainly”, and the next day I went with Mrs. Black to meet the residents of the Crumley House Brain Injury Rehabilitation and Living Center. I only performed with Judith once, but my relationship with the center continued - performing regularly throughout my graduate studies. Through this, I came to know the residents - hearing their stories and recognizing the similarities between their stories of recovery and my story - stepping away from this project being My story about what happened to Me, and seeing common events and themes that exist in the story of recovery from brain injury. Through this process, the piece Who Am I, Again? was formed.
With stories collected from 20+ residents at the Crumley House, I chose moments that highlight common themes from the experience of recovery and arranged these moments to depict three experiences of recovery. The story of my recovery provides a general outline for the piece, as it is the story I know best, but simultaneously three alternate recovery storylines are shared by the characters of Tony, Sarah, and Larry. Each character is modeled after a specific resident at the Crumley House, but their plots come from an amalgamation of moments discussed in interviews. I say this because it is important to recognize that there is a clear distinction between the characters in the piece (Tony, Sarah, and Larry) and the residents used as models.
The character of Larry is based on a young man - about my age - who was involved in an accident as a young adult that left him with brain injury. I will call him “Peter”. “Peter” and I were also involved with similar social groups in high school, enjoyed similar music, had similar philosophies on life - he is someone I would naturally befriend.
When I became involved with the Crumley House, “Peter” was already at a moderately high stage of recovery - relatively mobil, despite requiring a wheelchair or crutches, we shared amateur internet hacking techniques, we had extended conversations about a variety of subjects and he spoke of his accident with a competent understanding and almost humorous dismissiveness. This man could have made a living outside of the Crumley House, but it would have been hard - his recovery hadn’t progressed to my level, and his physical impairments, combined with a slightly slower cognitive process, would have made retaining most jobs difficult. For these reasons he chose to stay at the Crumley House and I could understand why.
With these realities in mind, I created the character of Larry. Larry carries the idea of youthful hope, tempered by the recognition of a reality imposed by his situation. Of the three characters portrayed in my story, Larry is the person most similar to my situation - yet due to fatalistic forces, at the time of the story he had not regained the ability to return to society with as much fluidity. For this reason, my portrayal of the character of Larry is slightly jealous of me (as the Narrator) - not a spiteful jealousy, but confused: “Why has Lethan been given the chance to return but I’m still here - Why is my recovery different?”
I recognize that my recovery was a miracle, and while there were many factors that likely contributed to this recovery (discussed in later posts), there is no set of comprehensible events that can be marked as “The Reason” for this success. I even hesitate to use the word “success”, as that implies other recoveries are a failure - this is not true. A survivor’s path of recovery is largely not determined by the medical techniques used in the process and/or the commitment of the recovering individual, but by an ineffable set of factors still not fully understood by medical science. Steps and attitudes can be taken that are believed to assist the process - some simple, some complicated - but these may also lead to further frustration, as the methods employed by one may offer few tangible results and a seemingly near complete rehabilitation in another.
Recognizing the differences in recovery can create difficult questions for a survivor - “Why is my recovery different from his? Why is she able to heal so much faster than I?” Questions such as these can quickly devolve into, “What am I doing wrong?”
That last question in particular is an unanswerable question, not because the answer cannot be known, but because the question is built on a false premise - that false premise being that there is a “correct” way to recover. The healing journey after brain injury (as with many traumatic incidents), is so dense with unanticipated difficulties and joys that to claim any possibility of a uniform recovery process is pretentious and/or obtuse. In truth, a recovery is only what it can be - nothing more, nothing less.
Yet even with a cognitive understanding of this randomness of healing processes, the inherent “unfairness” of it can’t help but standout like a blinking, neon hotel light on an empty highway - for examples: why does “Steve” seem okay after being in a coma for a week with his drunk driving accident, while “Charlie” was hit just a little too hard in a football game and now he acts like a completely different person? - “June” was drowning and now she’s alright but “Susan” was bumped on the head by a falling book - in the library no less - and now she can’t remember anything!
To compare the damage dealt by any set of incidents or speed between two recoveries is a futile task - every person’s accident and rehabilitation process after TBI will be different. Furthermore, different aspects of recovery will occur at different times and some steps, while they may be more observable by the general public, are no more or less important than less immediately apparent, internal healing. To anticipate the timeline of one’s recovery on the events of another can be debilitatingly frustrating.
This calls into the question the value of listening to stories that I lauded in the previous posting - if one cannot form a treatment plan and schedule based on another’s experience, what is the purpose? How can a survivor gain hope from a story if, in all likely hood, his or her recovery process will be drastically different?
At first glance, this seems to be a paradox - a survivor should listen to stories of recovery so he or she can better understand the emotions and events, but this information cannot be used to formulate or accurately anticipate a personal recovery process - yet I hold that the purpose of listening to stories is not about trying to find out how to heal, but to better understand the emotions and events as they happen, regardless of the time or order in which these events occur.
Returning to the trope used in the storytelling community - “We all have the same story, just the details are different.” In recovery after TBI the details of each process will change, but everyone heals. By hearing and sharing stories from a variety of speakers at various stages of recovery, a survivor can be inspired and find hope, but also become aware of the multitude of paths that a recovery can take. Each path has the same destination in mind - to heal - but how this path is traveled and where this final destination lies is as varied as the patterns on a snowflake.
In the story, Larry might have a bit of jealousy about the Narrator’s healing, but I did not sense this from “Peter”. In fact, this is one of the things I admired about “Peter”, a recognition of where he was - not necessarily where he would stay, but an almost monastic patience about letting his recovery occur at its own pace. He knew it would be a long road ahead, so he might as well settle back and enjoy the scenery - speeding on the highway of recovery might cause an accident, and there’s no need for that.
Now, like I said, this is a verbal collage of stories,
and while researching this story, I became involved with The Crumley House,
a brain injury rehabilitation and living center, located in Limestone, Tennessee.
And while there, I got to hear the stories of the residents at the Crumley House,
Tony, Sarah, and Larry
And when Larry’s story begins,
he was just your average 12 year old boy,
Well, I was a military brat, so I moved around a lot,
Base to base
to base, and I remember, at that age, I was always climbing on things -
Rocks, you got the one story barracks - I was on top - and trees - I remember the last base I was on, we were stationed in Germany, and they had this one tree that just went on forever.
You could climb
to Infinity and Beyond.
And that’s what I was trying to do, so everyday I would climb just a little bit higher,
and higher,
and one day I climbed just a little bit too high, and the branches up there,
they’er not that strong and I…
And that was that.
***********************************************************************************
This story segment begins by referencing The Crumley House in Limestone, Tennessee.
I became involved with the Crumley House through a serendipity of events - I was studying Storytelling at East Tennessee State University, when I was introduced to Storyteller Mrs. Judith Black - and in this meeting I mentioned the story of my accident. I mentioned it, she was interested, we talked about it, and the conversation moved on.
The next day I received a call -
Apparently, Mrs. Black had been talking to the person in front of her in line at the grocery store and learned he managed a regional brain injury rehabilitation center. She volunteered her services as a storyteller, remembered our conversation, and asked if I would like to join her in a performance.
My answer was “Most certainly”, and the next day I went with Mrs. Black to meet the residents of the Crumley House Brain Injury Rehabilitation and Living Center. I only performed with Judith once, but my relationship with the center continued - performing regularly throughout my graduate studies. Through this, I came to know the residents - hearing their stories and recognizing the similarities between their stories of recovery and my story - stepping away from this project being My story about what happened to Me, and seeing common events and themes that exist in the story of recovery from brain injury. Through this process, the piece Who Am I, Again? was formed.
With stories collected from 20+ residents at the Crumley House, I chose moments that highlight common themes from the experience of recovery and arranged these moments to depict three experiences of recovery. The story of my recovery provides a general outline for the piece, as it is the story I know best, but simultaneously three alternate recovery storylines are shared by the characters of Tony, Sarah, and Larry. Each character is modeled after a specific resident at the Crumley House, but their plots come from an amalgamation of moments discussed in interviews. I say this because it is important to recognize that there is a clear distinction between the characters in the piece (Tony, Sarah, and Larry) and the residents used as models.
The character of Larry is based on a young man - about my age - who was involved in an accident as a young adult that left him with brain injury. I will call him “Peter”. “Peter” and I were also involved with similar social groups in high school, enjoyed similar music, had similar philosophies on life - he is someone I would naturally befriend.
When I became involved with the Crumley House, “Peter” was already at a moderately high stage of recovery - relatively mobil, despite requiring a wheelchair or crutches, we shared amateur internet hacking techniques, we had extended conversations about a variety of subjects and he spoke of his accident with a competent understanding and almost humorous dismissiveness. This man could have made a living outside of the Crumley House, but it would have been hard - his recovery hadn’t progressed to my level, and his physical impairments, combined with a slightly slower cognitive process, would have made retaining most jobs difficult. For these reasons he chose to stay at the Crumley House and I could understand why.
With these realities in mind, I created the character of Larry. Larry carries the idea of youthful hope, tempered by the recognition of a reality imposed by his situation. Of the three characters portrayed in my story, Larry is the person most similar to my situation - yet due to fatalistic forces, at the time of the story he had not regained the ability to return to society with as much fluidity. For this reason, my portrayal of the character of Larry is slightly jealous of me (as the Narrator) - not a spiteful jealousy, but confused: “Why has Lethan been given the chance to return but I’m still here - Why is my recovery different?”
I recognize that my recovery was a miracle, and while there were many factors that likely contributed to this recovery (discussed in later posts), there is no set of comprehensible events that can be marked as “The Reason” for this success. I even hesitate to use the word “success”, as that implies other recoveries are a failure - this is not true. A survivor’s path of recovery is largely not determined by the medical techniques used in the process and/or the commitment of the recovering individual, but by an ineffable set of factors still not fully understood by medical science. Steps and attitudes can be taken that are believed to assist the process - some simple, some complicated - but these may also lead to further frustration, as the methods employed by one may offer few tangible results and a seemingly near complete rehabilitation in another.
Recognizing the differences in recovery can create difficult questions for a survivor - “Why is my recovery different from his? Why is she able to heal so much faster than I?” Questions such as these can quickly devolve into, “What am I doing wrong?”
That last question in particular is an unanswerable question, not because the answer cannot be known, but because the question is built on a false premise - that false premise being that there is a “correct” way to recover. The healing journey after brain injury (as with many traumatic incidents), is so dense with unanticipated difficulties and joys that to claim any possibility of a uniform recovery process is pretentious and/or obtuse. In truth, a recovery is only what it can be - nothing more, nothing less.
Yet even with a cognitive understanding of this randomness of healing processes, the inherent “unfairness” of it can’t help but standout like a blinking, neon hotel light on an empty highway - for examples: why does “Steve” seem okay after being in a coma for a week with his drunk driving accident, while “Charlie” was hit just a little too hard in a football game and now he acts like a completely different person? - “June” was drowning and now she’s alright but “Susan” was bumped on the head by a falling book - in the library no less - and now she can’t remember anything!
To compare the damage dealt by any set of incidents or speed between two recoveries is a futile task - every person’s accident and rehabilitation process after TBI will be different. Furthermore, different aspects of recovery will occur at different times and some steps, while they may be more observable by the general public, are no more or less important than less immediately apparent, internal healing. To anticipate the timeline of one’s recovery on the events of another can be debilitatingly frustrating.
This calls into the question the value of listening to stories that I lauded in the previous posting - if one cannot form a treatment plan and schedule based on another’s experience, what is the purpose? How can a survivor gain hope from a story if, in all likely hood, his or her recovery process will be drastically different?
At first glance, this seems to be a paradox - a survivor should listen to stories of recovery so he or she can better understand the emotions and events, but this information cannot be used to formulate or accurately anticipate a personal recovery process - yet I hold that the purpose of listening to stories is not about trying to find out how to heal, but to better understand the emotions and events as they happen, regardless of the time or order in which these events occur.
Returning to the trope used in the storytelling community - “We all have the same story, just the details are different.” In recovery after TBI the details of each process will change, but everyone heals. By hearing and sharing stories from a variety of speakers at various stages of recovery, a survivor can be inspired and find hope, but also become aware of the multitude of paths that a recovery can take. Each path has the same destination in mind - to heal - but how this path is traveled and where this final destination lies is as varied as the patterns on a snowflake.
In the story, Larry might have a bit of jealousy about the Narrator’s healing, but I did not sense this from “Peter”. In fact, this is one of the things I admired about “Peter”, a recognition of where he was - not necessarily where he would stay, but an almost monastic patience about letting his recovery occur at its own pace. He knew it would be a long road ahead, so he might as well settle back and enjoy the scenery - speeding on the highway of recovery might cause an accident, and there’s no need for that.
Thursday, February 2, 2017
Scene 01 - Introduction
*********************INTRODUCTION************************************************************************
Now the name of this performance is Who Am I, Again?,
and, well, I am Lethan
And what I’m going to do tonight is share with you a verbal collage of stories about Traumatic Brain Injury,
beginning with my story.
*************************************************************************************************************
I was 17 years old,
A high school senior in the small town of Bloomsburg, Pennsylvania,
and I was ready to get out of Bloomsburg.
See, I had a plan -
I was going to be an actor
Okay, well, study theatre in…
I don’t know…New York…Los Angeles…where are we…Korea? I don’t kn- Anyplace that wasn’t small town Pennsylvania.
And I was at that age, I was having a lot of fights with my parents,
you know, I would say things like, “Mom, Dad, I don’t Need you anymore - you are just the weights holding me down, like, keeping my creative spirit from soaring!
I am going to do whatever I want to do, Okay!
Ummm….
can I borrow ten bucks.”
So that’s where I was, that’s the Setting for the story.
The date, November 4th, 1999.
Its a little after 7 o’clock in the evening, I’m driving my sister to her school,
See, its a small school, and her eighth grade class has decided to have a sleepover party at the school, and because I used to attend - and just got my license - I’m elected as the chauffeur,
and When I get there, I remember reminiscing with my former French teacher,
getting into the car, waving goodb-
Auvour…
And the last thing I remember is seeing my French teacher, in my rear-view mirror,
waving goodbye, to me, as I drove off into the night.
*************************************************************************************************************
An introduction serves to present the situation from where the story begins. This segment of the piece quickly depicts the situation from which I began the journey of recovery - a 17 year old boy living in relatively safe, small town America - but the point where this story begins shouldn’t be the focus.
Brain injury can happen to anyone, regardless of demographic - granted, there are particular ages and occupations that have a statically more likely chance of TBI, but when an injury occurs to any person, those statistics are meaningless. In nearly every social group I have been involved with (as a public speaker or a social person), at least one other person will have stories about brain injury affecting their life. This may be a personal experience or the story of somebody emotionally close (a friend or family member), yet seldom are these stories shared. The stories are difficult, frightening, and while they might be peppered with humorous situations, they can quickly make an unprepared listener feel uncomfortable. These are not stories usually used to meet people.
Yet these stories must be shared. There are countless reasons these stories should be shared, but I’ve chosen 4 (listed below) that I will discuss in what follows. Please note, there are many more reasons that stories of recovery should be shared, but I have chosen these 4 because the reasoning is relatively easy for any reader to understand and I believe my research and experiences allow me to provide appropriate commentary.
WHY STORIES OF RECOVERY FROM TBI SHOULD BE SHARED
Stories provide inspiration for brain injury individuals and caregivers
Celebrating the rediscovery of self-identity
To raise the world awareness of TBI
So people know what to do if TBI happens
*************************************************************************************************************
STORIES PROVIDE INSPIRATION FOR BRAIN INJURED INDIVIDUALS AND CAREGIVERS
Memories from my recovery tend to be of an aggravated loneliness - feeling as if I had been expelled from society, a solitary trial-and-error method of discovering what I was capable of doing, frustrations when it seemed no-one could understand my experiences - specifics from these memories will be discussed in later entries, but loneliness and anti-social behaviors after TBI are relatively common. I suggest that a survivor will feel this way, at least in part, because a brain injury is often not physically apparent and the experience itself is ineffable - therefore a survivor has difficulties adequately communicating emotional difficulties to those who have likely not had a similar experience. This inability to be understood when describing problems caused by the injury can cause a survivor to retreat from social contacts - creating an introspective whirlpool of angst that drags one further into the depths of a saddened solitude that he or she does not know how to share.
Similarly, the experience of caring for a person recovering from TBI creates a complicated maze of situations and obstacles that has the potential to create a confounding set of internal emotional conflicts - the focus is centered around the surviving, healing individual and it is easy to overlook the pains and difficulties enshrouding those close to the survivor. A caregiver is giving a part of him or her self to assist in the healing, particularly in early recovery, yet often this work goes unappreciated because it doesn’t seem to create any real (read as ‘immediate’) results - a discouraging situation for any person.
Stories cannot magically fix the frustrations of a survivor or caregiver, but they can provide context. People involved in any part of the recovery process must approach the situation prepared for any result - an understanding that a survivor may never regain full social competence, but also that, with due diligence, one may make unexpected leaps in recovery despite weeks, months, or even years with seemingly little change in condition. Similarly, survivors must be made aware of the sacrifices made on their behalf - not to make the survivor feel indebted to anyone, but to better understand that healing is a group effort - that the people caring for a survivor are forced to pick paths of recovery from a menagerie of medical choices and that the “correctness” of a decision can never be fully known. Survivors and caregivers have strikingly different stories of the same events and there is no way to equivocate the experiences, but to recognize that both sets of stories exist can help everyone appreciate the other’s journey.
When sharing my story with audiences of survivors and caregivers, the experience of seeing heads nod in understanding provides a strange release - a recognition that my emotions and events are not unique or strange. Similarly, after sharing, audience members will come to me and share stories - often remarkably similar - that they had previously felt uncomfortable sharing. Stories begat stories - the memories of one person can spark similar memories in another - and by sharing people can sympathize and appreciate the common experience of recovery.
Furthermore, survivors at advanced stages of recovery can share their experience and inspire those at early stages. Everyone with TBI gets raked through the sludge, and it is important to learn that there are ways to pull oneself out of that muck and adapt to one’s new situation - yes, the textbook wisdom offered by councilors and rehabilitation therapists is valuable, but the personal story of a survivor who has been there and learned how to manage a situation can have a deeper, rejuvenating effect.
In the American storytelling community there is a saying - “We all have the same story, just the details are different.” The idea is, more often than not, that experiences have common emotions that occur in the natural happens of life, but the way these emotions come to fruition is as varied as flowers in a meadow. I believe this is especially true with recovery from TBI - granted, every person has his or her unique story and the circumstances surrounding will be markedly different from any other event, but by sharing our story and listening to the stories of others, we can celebrate and appreciate a commonality in our unique set of difficulties.
CELEBRATING THE REDISCOVERY OF SELF-IDENTITY
Life is a constant rollercoaster of change - large dips and small - sometimes we must make the long climb to reach the peak before we experience a long anticipated change - or sometimes it will be an unexpected turn or dip that catches us unprepared as it alters our course. When on an amusement ride, these exhilarating moments are celebrated (provided one doesn’t fear rollercoasters) and it’s the thrill of discovering the next turn that makes us want to ride.
The twists of life, however, are not always celebrated with the same exuberance, and rarely does an unanticipated dip leave one wanting more of the same - yet it is this constant, often unexpected, change that allows life to be a dynamic experience. The inevitability of change in life is unavoidable - employment, relationships, accident, illness, or any infinity of reasons - but to view this change as necessarily negative is a convention many cling to because of an innate desire for stability and a fear of the unknown. It must be remembered that change is also an opportunity for growth - the opening of a new path, though not necessarily a path you would choose on your own. Brain injury is an example of this “new path” presented in a painfully dramatic manner.
This is NOT a suggestion to celebrate Traumatic Brain Injury - terming it “Traumatic” correctly implies that the event is a trauma - but the opportunity for self discovery after such a trauma has the potential to be as much a boon as a burden.
At first glance, the changes caused by TBI are rarely positive - decreased skills, difficulties with emotional control, speech impairments. etc.. - but by accepting the necessary change imposed by TBI and holding them as a chance to change some aspect of one’s life, the experience of TBI can be a - maybe not blessing - but an opportunity in disguise. Recovery should be about - “How do I find who I am now and use my current skills?” - and not - “How do I become the same as I was before?” By listening to stories of recovery, a survivor can hear how the process of self-rediscovery occurred in other people - learn of successes and failures - frustration and joy - observe a story from the outside, and hopefully use this to draw beneficial parallels to his or her own experience.
Furthermore, the process of molding a person’s memories of recovery into a comprehendible narrative allows the speaking survivor to observe his or her own healing progression and to better understand the contextual facts surrounding the experience. I propose that this performative process assists in the introspective healing journey of a survivor.
I recognize this is a bold statement and I draw from my own artistic experience when proposing this - to be discussed more in future posts - but my artistic journey in short: by narrating my own experience, I was able to somewhat emotionally remove myself from the story - witnessing the events that happened instead of reveling in the emotions. This allowed me to see the story as a series of interconnected moments, and to better understand what caused events that had previously caused confusion. This new understanding helped me to appreciate my new journey - to recognize what brought me to this moment in life - and to more fully embrace who I am Now.
Please note, I recognize that this creates all sorts of questions, and I will discuss it more in future postings, but this premise is one of the reasons I believe storytelling is an important tool in the recovery process.
TO RAISE WORLD AWARENESS OF TBI
Recently, brain injury has received increased media attention in the United States - war veterans returning from the middle-east, brain damage in American Football, the shooting of Representative Gabrielle Giffords - but in many ways these continue to cloud the reality of TBI. The majority of cases that are discussed in this increased media awareness involve men and women in prime physical condition and receiving some of the best healthcare available - yet many who experience TBI do not have such privileges.
As stated above, the majority of my conversations about TBI reveal that at least one other person in the group has been affected by an experience, yet people don’t tend to want to talk about the difficulties of recovery. This helps no-one. The world needs to internally understand the regularity of brain injury - to recognize that TBI can happen to anyone and can never be anticipated.
This conversation is beginning to some degree - various books outlining the experience of recovery, the TBI voices project started by Attorney Gordon Johnson, active brain injury advocacy networks - but there is still a long road before the facts of recovery from TBI are truly part of the international psyche, yet every story shared is a step down this path.
SO PEOPLE KNOW WHAT TO DO IF TBI HAPPENS
As above, brain injury can happen to anyone, but is a difficult topic of conversation. I do not suggest that brain injury should be a casual conversation topic - that we all talk about it at the next dinner party - tends to be a conversation downer - but if the topic is clearly in the national and international dialogue, should a person experience TBI, the uncertainties of the experience can be better anticipated. There is no “cure” for TBI, the experience will happen and difficulties will ensue - but by being aware of the paths a healing might take, it will be easier to find healing resources and to recognize potential choices.
Each time a story is shared, the listeners learn something new.
*************************************************************************************************************
These are my thoughts as I begin this project - it is from this situation and with these reasoned beliefs that I begin to look at the stories in Who am I, Again? - again.
All the stories in the piece have been affected by my understanding, as this understanding has grown through life experiences. As I have just started the process of revisiting these memories, I do not have a clue where the writings will take us - but I invite you along for the ride.
Also, feel free to visit:
THE SCRIPT we will be following for these reflections
the original THESIS paper
A VIDEO performance of Who am I, Again?
Thanks for reading.
Leave comments below.
Now the name of this performance is Who Am I, Again?,
and, well, I am Lethan
And what I’m going to do tonight is share with you a verbal collage of stories about Traumatic Brain Injury,
beginning with my story.
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I was 17 years old,
A high school senior in the small town of Bloomsburg, Pennsylvania,
and I was ready to get out of Bloomsburg.
See, I had a plan -
I was going to be an actor
Okay, well, study theatre in…
I don’t know…New York…Los Angeles…where are we…Korea? I don’t kn- Anyplace that wasn’t small town Pennsylvania.
And I was at that age, I was having a lot of fights with my parents,
you know, I would say things like, “Mom, Dad, I don’t Need you anymore - you are just the weights holding me down, like, keeping my creative spirit from soaring!
I am going to do whatever I want to do, Okay!
Ummm….
can I borrow ten bucks.”
So that’s where I was, that’s the Setting for the story.
The date, November 4th, 1999.
Its a little after 7 o’clock in the evening, I’m driving my sister to her school,
See, its a small school, and her eighth grade class has decided to have a sleepover party at the school, and because I used to attend - and just got my license - I’m elected as the chauffeur,
and When I get there, I remember reminiscing with my former French teacher,
getting into the car, waving goodb-
Auvour…
And the last thing I remember is seeing my French teacher, in my rear-view mirror,
waving goodbye, to me, as I drove off into the night.
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An introduction serves to present the situation from where the story begins. This segment of the piece quickly depicts the situation from which I began the journey of recovery - a 17 year old boy living in relatively safe, small town America - but the point where this story begins shouldn’t be the focus.
Brain injury can happen to anyone, regardless of demographic - granted, there are particular ages and occupations that have a statically more likely chance of TBI, but when an injury occurs to any person, those statistics are meaningless. In nearly every social group I have been involved with (as a public speaker or a social person), at least one other person will have stories about brain injury affecting their life. This may be a personal experience or the story of somebody emotionally close (a friend or family member), yet seldom are these stories shared. The stories are difficult, frightening, and while they might be peppered with humorous situations, they can quickly make an unprepared listener feel uncomfortable. These are not stories usually used to meet people.
Yet these stories must be shared. There are countless reasons these stories should be shared, but I’ve chosen 4 (listed below) that I will discuss in what follows. Please note, there are many more reasons that stories of recovery should be shared, but I have chosen these 4 because the reasoning is relatively easy for any reader to understand and I believe my research and experiences allow me to provide appropriate commentary.
WHY STORIES OF RECOVERY FROM TBI SHOULD BE SHARED
Stories provide inspiration for brain injury individuals and caregivers
Celebrating the rediscovery of self-identity
To raise the world awareness of TBI
So people know what to do if TBI happens
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STORIES PROVIDE INSPIRATION FOR BRAIN INJURED INDIVIDUALS AND CAREGIVERS
Memories from my recovery tend to be of an aggravated loneliness - feeling as if I had been expelled from society, a solitary trial-and-error method of discovering what I was capable of doing, frustrations when it seemed no-one could understand my experiences - specifics from these memories will be discussed in later entries, but loneliness and anti-social behaviors after TBI are relatively common. I suggest that a survivor will feel this way, at least in part, because a brain injury is often not physically apparent and the experience itself is ineffable - therefore a survivor has difficulties adequately communicating emotional difficulties to those who have likely not had a similar experience. This inability to be understood when describing problems caused by the injury can cause a survivor to retreat from social contacts - creating an introspective whirlpool of angst that drags one further into the depths of a saddened solitude that he or she does not know how to share.
Similarly, the experience of caring for a person recovering from TBI creates a complicated maze of situations and obstacles that has the potential to create a confounding set of internal emotional conflicts - the focus is centered around the surviving, healing individual and it is easy to overlook the pains and difficulties enshrouding those close to the survivor. A caregiver is giving a part of him or her self to assist in the healing, particularly in early recovery, yet often this work goes unappreciated because it doesn’t seem to create any real (read as ‘immediate’) results - a discouraging situation for any person.
Stories cannot magically fix the frustrations of a survivor or caregiver, but they can provide context. People involved in any part of the recovery process must approach the situation prepared for any result - an understanding that a survivor may never regain full social competence, but also that, with due diligence, one may make unexpected leaps in recovery despite weeks, months, or even years with seemingly little change in condition. Similarly, survivors must be made aware of the sacrifices made on their behalf - not to make the survivor feel indebted to anyone, but to better understand that healing is a group effort - that the people caring for a survivor are forced to pick paths of recovery from a menagerie of medical choices and that the “correctness” of a decision can never be fully known. Survivors and caregivers have strikingly different stories of the same events and there is no way to equivocate the experiences, but to recognize that both sets of stories exist can help everyone appreciate the other’s journey.
When sharing my story with audiences of survivors and caregivers, the experience of seeing heads nod in understanding provides a strange release - a recognition that my emotions and events are not unique or strange. Similarly, after sharing, audience members will come to me and share stories - often remarkably similar - that they had previously felt uncomfortable sharing. Stories begat stories - the memories of one person can spark similar memories in another - and by sharing people can sympathize and appreciate the common experience of recovery.
Furthermore, survivors at advanced stages of recovery can share their experience and inspire those at early stages. Everyone with TBI gets raked through the sludge, and it is important to learn that there are ways to pull oneself out of that muck and adapt to one’s new situation - yes, the textbook wisdom offered by councilors and rehabilitation therapists is valuable, but the personal story of a survivor who has been there and learned how to manage a situation can have a deeper, rejuvenating effect.
In the American storytelling community there is a saying - “We all have the same story, just the details are different.” The idea is, more often than not, that experiences have common emotions that occur in the natural happens of life, but the way these emotions come to fruition is as varied as flowers in a meadow. I believe this is especially true with recovery from TBI - granted, every person has his or her unique story and the circumstances surrounding will be markedly different from any other event, but by sharing our story and listening to the stories of others, we can celebrate and appreciate a commonality in our unique set of difficulties.
CELEBRATING THE REDISCOVERY OF SELF-IDENTITY
Life is a constant rollercoaster of change - large dips and small - sometimes we must make the long climb to reach the peak before we experience a long anticipated change - or sometimes it will be an unexpected turn or dip that catches us unprepared as it alters our course. When on an amusement ride, these exhilarating moments are celebrated (provided one doesn’t fear rollercoasters) and it’s the thrill of discovering the next turn that makes us want to ride.
The twists of life, however, are not always celebrated with the same exuberance, and rarely does an unanticipated dip leave one wanting more of the same - yet it is this constant, often unexpected, change that allows life to be a dynamic experience. The inevitability of change in life is unavoidable - employment, relationships, accident, illness, or any infinity of reasons - but to view this change as necessarily negative is a convention many cling to because of an innate desire for stability and a fear of the unknown. It must be remembered that change is also an opportunity for growth - the opening of a new path, though not necessarily a path you would choose on your own. Brain injury is an example of this “new path” presented in a painfully dramatic manner.
This is NOT a suggestion to celebrate Traumatic Brain Injury - terming it “Traumatic” correctly implies that the event is a trauma - but the opportunity for self discovery after such a trauma has the potential to be as much a boon as a burden.
At first glance, the changes caused by TBI are rarely positive - decreased skills, difficulties with emotional control, speech impairments. etc.. - but by accepting the necessary change imposed by TBI and holding them as a chance to change some aspect of one’s life, the experience of TBI can be a - maybe not blessing - but an opportunity in disguise. Recovery should be about - “How do I find who I am now and use my current skills?” - and not - “How do I become the same as I was before?” By listening to stories of recovery, a survivor can hear how the process of self-rediscovery occurred in other people - learn of successes and failures - frustration and joy - observe a story from the outside, and hopefully use this to draw beneficial parallels to his or her own experience.
Furthermore, the process of molding a person’s memories of recovery into a comprehendible narrative allows the speaking survivor to observe his or her own healing progression and to better understand the contextual facts surrounding the experience. I propose that this performative process assists in the introspective healing journey of a survivor.
I recognize this is a bold statement and I draw from my own artistic experience when proposing this - to be discussed more in future posts - but my artistic journey in short: by narrating my own experience, I was able to somewhat emotionally remove myself from the story - witnessing the events that happened instead of reveling in the emotions. This allowed me to see the story as a series of interconnected moments, and to better understand what caused events that had previously caused confusion. This new understanding helped me to appreciate my new journey - to recognize what brought me to this moment in life - and to more fully embrace who I am Now.
Please note, I recognize that this creates all sorts of questions, and I will discuss it more in future postings, but this premise is one of the reasons I believe storytelling is an important tool in the recovery process.
TO RAISE WORLD AWARENESS OF TBI
Recently, brain injury has received increased media attention in the United States - war veterans returning from the middle-east, brain damage in American Football, the shooting of Representative Gabrielle Giffords - but in many ways these continue to cloud the reality of TBI. The majority of cases that are discussed in this increased media awareness involve men and women in prime physical condition and receiving some of the best healthcare available - yet many who experience TBI do not have such privileges.
As stated above, the majority of my conversations about TBI reveal that at least one other person in the group has been affected by an experience, yet people don’t tend to want to talk about the difficulties of recovery. This helps no-one. The world needs to internally understand the regularity of brain injury - to recognize that TBI can happen to anyone and can never be anticipated.
This conversation is beginning to some degree - various books outlining the experience of recovery, the TBI voices project started by Attorney Gordon Johnson, active brain injury advocacy networks - but there is still a long road before the facts of recovery from TBI are truly part of the international psyche, yet every story shared is a step down this path.
SO PEOPLE KNOW WHAT TO DO IF TBI HAPPENS
As above, brain injury can happen to anyone, but is a difficult topic of conversation. I do not suggest that brain injury should be a casual conversation topic - that we all talk about it at the next dinner party - tends to be a conversation downer - but if the topic is clearly in the national and international dialogue, should a person experience TBI, the uncertainties of the experience can be better anticipated. There is no “cure” for TBI, the experience will happen and difficulties will ensue - but by being aware of the paths a healing might take, it will be easier to find healing resources and to recognize potential choices.
Each time a story is shared, the listeners learn something new.
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These are my thoughts as I begin this project - it is from this situation and with these reasoned beliefs that I begin to look at the stories in Who am I, Again? - again.
All the stories in the piece have been affected by my understanding, as this understanding has grown through life experiences. As I have just started the process of revisiting these memories, I do not have a clue where the writings will take us - but I invite you along for the ride.
Also, feel free to visit:
THE SCRIPT we will be following for these reflections
the original THESIS paper
A VIDEO performance of Who am I, Again?
Thanks for reading.
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