Scene 17, Part 1 - The Job Ahead

************Scene 17, Part 1 - The Job Ahead***************

But more pictures begin to stick,
And I remember faces, voices, events…

and I remember it was hard, and,
Frustrating.

Embarrassing

I mean, here I was, a seventeen year old boy,
having to be retaught how to Do things I knew I should Know how to do…
like,
Like Walking -
Walking Technique…

heel, toe, heel, toe, heel toe…

But I wasn’t doing it right, so I had to keep practicing…

Heel, toe,
heel…

******************************************************

Recovery from brain injury means going through the motions of recovery - facing the reality of one’s situation and learning/remembering how to do everything you already know - again.

I remember a strange disconnect in my brain - a personal and social recognition that I should be able to do these things, and thus I attempted to complete the trials presented to me by therapists with a dismissive ease - but I couldn’t realistically complete these tasks with such ease - many could only be completed with concentrated effort and assisted focus - a plodding process.  And I felt shame when my achievement of some menial task received vigorous applause - here I was, a youth on the cusp of adulthood and my rehabilitation therapists are celebrating when I complete physical and cognitive tests suitable for a toddler.  My mind translated their praise into mockery.

In retrospect, I recognize that I was fortunate to have had such an encouraging team of therapists and supporters surrounding me and offering praise - an alternative could have been criticism toward my slow pace of recovery, demeaning my progress - I recognize this now, but at the time it didn’t matter because I was ashamed of my struggles.

These emotions are not unique.  In my interviews I spoke with several other survivors who told me about similar embarrassment or shame, and this feeling makes sense - a survivor is discovering his or her new abilities, and these abilities are changing every day, especially during early recovery - meanwhile there is a cognitive attempt to connect the story of the past person to the person the survivor is now.  In tandem with this, a survivor often hears stories of the past shared by supporters - these are stories that hold a subjective “truth” for the supporter sharing the story, but this “truth” may not coincide with the survivor’s current - or previous - self-image, and while attempting to rediscover/redefine personal identity the survivor needs to navigate this barrage of narratives seeking some more genuine personal truth while continuing to be unsure of his or her ability - all of which easily leads to the monologue:

“What did I do before?  Why can’t I remember what they tell me?  Was I better before?  Am I okay now?  If I’m okay, why the Fuck is everything so hard.”

At least, that’s the monologue I remember playing in my head.

If this monologue exists, it cannot be soothed with trite phrases encouragement - “Don’t worry, it’ll be okay” - “You just need to keep trying” - seems false.  I recognize that sayings such as this are important - they should be heard and repeated, but they don’t change the reality of the situation.  The process of recovery and rediscovery after TBI is hellacious drudgery, and all you can do is continue, some abilities and personality characteristics you will find again while other attributes have changed, and always the survivor must continue - one step at a time - heel, toe, heel, toe…

But there is a way to beat this - a way to win in the struggle with depressing monotony - very simply, to win is to not lose, and to lose is give up - to succumb to angst and depression - to stop. 

Don’t stop.

Again -

Don’t stop.

This does not mean “Things will get better with time”, or “You’ll get through this one day” - things might and you might, but a survivor cannot rely on statements such as these - what I promise is that quitting on recovery guarantees that a fuller recovery will never happen.

Don’t stop.  Win by not losing.

When I began this article, I wanted to write a script of motivational phrases and encouragements for survivors currently wading through a pool of tests and trials, but as I considered what I feel is true, I recognized that such sayings would be false.  Instead, I wish to be candid in my comments to survivors - your body may never fully recover and there will likely be some difficulties that will always hamper you, but recognize that as a survivor you are ALIVE and that life is open to infinite possibility.  In previous entries (Scene 6 - “God’s Lap” and Scene 12 - “It’s Not Your Time”), we have looked at the decision a survivor must make after brain injury - whether to accept the reality of the new situation after TBI or not - and, simply put, the dispiriting drudgery of recovery is part of this reality.

I do not intend this entry to be depressing - monotony is, to some extent, a part of nearly any life path - the farmer harvesting crops, the factor worker beginning a shift, the teacher grading exams - its part of human experience and, as a survivor, one must endure this in order to appreciate the glory of moments - moments that can exist for everyone - forgetting time while conversing with a new friend, becoming lost in the rhythm and harmonies of a favorite song, watching a sunset kiss the world goodnight.  These are rewards that can be found when a survivor makes the choice to win - and remember - to win is to not lose. 

Don’t stop.

To win is to keep the gates of endless possibility - of infinite variation open - to lose is to give up.

To lose is finite.

Win.

Don’t stop.

This was a hard one to write - please share your thoughts below.

How Phish Got Involved

 ***********How Phish Got Involved**********************

The last entry got philosophical - discussing the matter of shaping memory after a traumatic incident, and this discussion is something I believe I can add to within the community of survivors.  That said, the entry didn’t deal with the content of the scene very much - by content, I mean the absurd story about my favorite rock band, Phish- so this entry is going share how the band Phish played a role in my early recovery.

I am part of a dedicated fan base - “Phishheads” as we are called - and while we might gaze on “Bielibers” (fan’s of Justin Bieber) with distain, we do not hesitate to proclaim that we are “going Phishing” when the dates for the next Phish concert tour are announced.  Now, I am a fan of every band member - but every fan has his or her favorite and, as a pianist, my favorite band member is keyboardist Page McConnell..

When my accident occurred, I had already seen 3 Phish performances just one month prior, and had tickets for 1 more performance that would be happening in Philadelphia - but I couldn’t attend this 1 more performance because I was in the hospital…in Philadelphia!  I remember being upset by this, but also recognizing that there was nothing I could do to attend the concert, and this blunt fact staved off any major disappointment - I had resigned myself to my Phish-less fate.

That said, my friends and family were not so quickly quelled and - unbeknownst to be - began a letter writing campaign to the band, asking specifically Page McConnell to get some word to me while I was in the hospital.  It turned out that at least one of these letters made its way through the halls of Phish mailing and reached said keyboardist, and on December 23rd - the day before I was released from the hospital - a large package arrived in the mail.

It was two days before Christmas - was this a present?  Without looking at the return address, I tore open the package and found it stuffed with Phish memorabilia - CDs, a teeshirt, hat, fleece jacket…and tucked in amid this plethora of Phish fan treasures was a hand written note:

Dear Lethan,

So sorry to hear of your accident - pleased to hear of your recovery.  Keep in touch and we’ll get you to a show this summer.

Page McConnell.

To say I was ecstatic is an understatement - my favorite rockstar / celebrity hero had sent me a get well gift!  That is amazing!  How did he even know! - I was later informed about the letter writing campaign, but at the time it was a complete mystery.  To be sure, this action made me a Phish fan for life.

And let us take a moment to give praise to the band and Page McConnell for reaching out.  To be sure, I’m sure it was not a huge burden in time or money for the artist, but it was also not necessary - but it was taking a little bit of time and putting in some extra effort to support a stranger, and that gesture brought enormous joy.  Page did something that we can all do when the moment arises - showed support for someone who needs it.  He did it in a celebrity savvy way available to him, but we can all do small gestures of support - a smile, a helping hand, a bottle of soda - something simple to bring just a bit of joy if we see a person who looks like they need help - it may not have the fandom-shock attached to celebrity, but it can bring honest joy.  Page McConnell took it upon himself to do just a bit more to support a fan - reaching outside of what is considered the norm - and for that he, as well as the entire band and organization of Phish, deserves appreciation.

Now, nearly two decades after that package, I am still a huge fan of the band and anticipate remaining so ad infinitum, but as I’ve reflected upon that package I have come to see that it was not just Page and the Phish organization that did that little bit more to help out - every friend and family member who sent a note or did any gesture to contact Page deserves similar appreciation.  Word got to Page because countless supporters of my recovery took the time to try.  I feel that, in many ways, the plethora of gifts that came from Page also came from every person involved in reaching out.  These gifts came to symbolize the power in community.  Page McConnell and Phish did a grand thing reaching out to a fan, but what the community surrounding my healing did was truly Awesome - contacting Page was only a part of that.


That said, I am still a huge fan and if anyone knows how to contact Page McConnell so I can personally give my thanks…Still hoping to meet Page one day…Any leads on contacting him...?


Please email or leave comments for the Phan below.

Scene 16 - My First Memory

 *****************Scene 16 - My First Memory*************

Now, my first memory, it’s just a flash - a picture in my head,
but
I remember I’m sitting in my wheelchair at Magee Rehabilitation,
my best friend Ryan is sitting across from me, and we’re -
talking about something -
and my parents and Ryan’s parents and standing by the window,
the afternoon sunlight is streaming in,
and they’re Laughing about…
something

I don’t know what they’re laughing at -
don’t remember what Ryan and I are actually talking about,
like I said, its just a picture in my head,

But I’ve Described this picture to the people who were there,
and They DO remember what was happening because I had just told my first story,
well, Ryan and I were telling it together -

I began with me telling a dream I had had in which my favorite rock band,
the band Phish,
had decided to throw a charity concert at Magee Rehabilitation Hospital,
and because it was my dream, they decided to throw the concert in My room,

and here Ryan jumps and says that if they’re playing the concert in my room, I should be allowed to jam with them,
and so I ask the keyboardist if I can sit in, and he says “Sure, why not.”

so I sit down at the piano and we begin this 7 hour
musical improvisation,
that explores the depths of the question What is Music,

continuing until Dogs
begin to climb out of the piano,
all sizes,
dogs just, woof woof
start chasing everyone around

so the drummer needs to step out from behind the drums,
pull out his, uh
vacuum cleaner,
use the hose to just SUCK up the dogs,

Now the guitarist, Trey,
he’s Freaking out so bad the bassist just needs to turn to him, says,
“Hey, Trey man, mellow.”

Meanwhile I’m flying overhead,
like this - Superman -
watching all this chaos unfold…

and I’ve been told that this first story was…
interesting…

*****************************************************************************

Memories are stories. 

We remember events - create memories - because we compose a narrative structure that entwines moments together and this allows the infinite collection of sensory information to exist as a simplified, comprehensible package of cause/effect relationships.

Memories are these stories that we create.

Even memories that serve a function - remembering to brush your teeth or your schedule for the day - are held because they are attached to some story - the parable of the girl who got terrible cavities and lost her teeth - or the future storyline of what you anticipate tomorrow’s events will be.  Granted, habitual action is often not recognized as being attached to a story, but if you delve into the question of Why you do an action, there’s a story behind it, sometimes, simply a story of tradition - my family comes from a long line of people who use toothpaste at least twice a day.

Now, the extent to which all information we retain in our minds is this story form of memory can be debated - there can be discussion of alternative forms of physical or emotionally subconscious recollection of information, but for this posting - discussing a conscious memory of an event - I hold that when a person says “I remember when ‘Event X’ happened”, that person is necessarily referring to a story based memory - a story the person has created with or without outside influence. 

This is important to recognize because the scene presented above has been dubbed the first memory I had after the accident - and it remains in my mind as the series of images and emotional sensations described above - but I suggest that the reason that this remains my “first memory” is because I have so clearly (and some might say eloquently) composed a literary/oral story containing these events that is easily accessed because of its memorable content and repeated tellings.  Had this moment not been so clearly codified, I suggest that it would have drifted away to bask amid the aether of past consciousnesses in a similar way the memory of my breakfast on April 18th, 2013 is no longer with us.

Granted, that first memory after my trauma is imbued with substantially more significance than breakfast on a random day, and even had I not composed a storytelling piece there is a chance I would continue to find moments of this memory returning, but it is far less likely. 

You’ll also notice that the event which my brain first recalled was an event that contained some out-of-the-norm moments - stories tend to form around such out-of-the-norm moments, and although during my early recovery I did not recall the details of this story, when interviewed my friends and family were quick to remember what was happening.  I believe this is due to the fact that the situation lent itself to a simple story form.  Furthermore, I hypothesize that my mind decided to “hit record” at this moment because it naturally attempted to format this situation into a story for retelling, though at the time my mind had difficulty cementing the majority of details in an easily accessible storage bank.

Please note, in most cases I do not think we consciously compose stories so that we can recall events - instead, I hold that the human mind has evolved to embrace stories and, commonly without prompting, naturally arranges experience into story form - not necessarily interesting or highly refined stories, but simple stories nonetheless.  This is just how our memory works.

Having established that memory is a story, it is also important to recognize that memories are not static - memories change over time as the story becomes revised and/or new information is discovered.  We can also choose to “adjust memories” by telling the story to ourselves in a different way.  By revising or “rewriting” a story, a person is able to come to a different understanding of past events and potentially sooth anger, pain, or frustration that remains trapped within an memory and causes stagnation of personal growth.

This is a powerful tool - using investigative and/or creative reasoning combined with our story-susceptible minds to alter one’s memory - and I will pause here to acknowledge that this can be a dangerous tool.  One can easily imbue memories with false events or interpretations - positive or negative - that leave one susceptible to alluring and/or dangerous situations, and insisting upon a fallaciously positive interpretation of abuses is a danger that must be recognized.  I cannot comment further on this, as this is not my area of study, but I do want to be clear that I recognize that, as with many powerful tools, adjusting one’s interpretation of memories has potential for both good and danger.

That acknowledged, I want to recognize a way that this ability can be beneficial after a trauma and to show how personal storytelling can help in this process.  Please know, when I use terms such as “storytelling” or “storyteller”, I do not mean to imply this is a story for public presentation - the pressures of a performance may place stress upon a person and hinder the story formation process.  A story is an individual’s construction that may be shared as public art or for individual therapy as the storyteller wishes, though I do encourage some small, informal sharing of the story with close family, friends, or perhaps a councilor to achieve the full benefit of this process.

That said…

By recognizing that a memory is a story, a person is better able to objectify an experience - it is no longer a personal experience, but the experience of the narrator (who just happens to be the storyteller).  This helps to remove the storyteller (who experienced a trauma) from the immediacy of a painful memory - helping to see the experiences as events that happened, but are no longer happening.

Furthermore, a story requires certain structural elements - beginning, middle, end, and some sort of cause-effect relationship that allows the events to be understood.  Placing this requirement upon oneself allows the storyteller to understand the sequence of events that resulted in a trauma or caused difficulties in a recovery - no longer is it just - “Shit happens” - but becomes “This is why this particularly shit happened.”  By creating a logic largely based upon fact - though possibly dressed with some artistic embellishment - a storyteller is able to better see the whole of a situation surrounding a painful memory.  This helps the storyteller to move away from the idea of this event “being a terrible thing that happened to me” and seeing that said event affected many people, and the storyteller’s experience is part of a far greater picture - the aim not being to minimize a storyteller’s personal experience, but to move away from an egocentric focus that can develop after a tragedy.

Furthermore, by objectifying a story, a storyteller can more easily see why other people choose to react to events surrounding the storyteller’s trauma in a particular way.  The people who were part of the recovery experience after the tragedy become characters in a story, and by exploring these characters, the storyteller is able to understand or create a logic for their actions - providing characters with a reasonable, non-malicious motivation can help the storyteller recognize and empathize with characters that may have seemed confrontational or were viewed as “the enemy” while the initial events of the trauma were occurring.

For my experience, I found that the process of turning my events into a story allowed me to see how fortunate I was - I did go through a traumatic experience, but I lived.

I worked my ass off in recovery for years - formal therapeutic sessions as well as personal growth - and am still experiencing some effects of what I believe is from the brain trauma nearly two decades after the incident, but I am living.

The good fortune surrounding my recovery has been shared with me countless times, but it was by researching and creating a story that I was able to fully recognize and appreciate what my body and soul did and how necessary the countless professional and personal saviors were in this process.

I’ve also been able to bring some personal peace to how some relationships played out.  The most prominent of these is my relationship with my parents - I can better understand how they treated and tried to protect me in the years following my accident - why they restricted me in a manner contrary to what I felt was right.  Furthermore, I can more fully appreciate all they have done for me and how hard they worked to provide what they though was best. 

This is not meant to proclaim storytelling as a “fix it all” technique - nothing should be proclaimed as such - but it is a tool and can be deeply therapeutic if used properly.  Memories are personal creations we keep in our mind that having a strong effect on most decisions we make.  If we can use a tool - such as storytelling - to mold these memories in a manner that helps us make more beneficial decision, I suggest we use it.

Thems be my ideas on the subject.  What are yours?  Any questions?  Counter arguments?  Agreements?  Academic articles?  Personal examples of the benefits of storytelling? 

Leave comments below - I look forward to hearing from you.

Scene 15 (beginning) - I Don't Remember

********Scene 15 (beginning) - I Don't Remember************

I remember the first memory I remembered.

See, my recovery at Geisinger Medical Center was progressing rapidly, so they moved me to Magee Rehabilitation Hospital in Philadelphia,
and that’s where my memory returned.

******************************************************

I’m going to take this entry to pause on this moment - not a full scene, but just a moment in this scene…


“I remember the first memory I remembered…”


There is half a month of my conscious life wiped out of my mind after the accident.  I remember saying “goodbye” to my French teacher, and then I remember what occurs in the upcoming scene (a future blog entry) - which takes place 2 and 1/2 weeks later.  Thus, there is an extended blip in my personal timeline - like I was asleep - yet what intrigues me is that during the majority of this time, I was conscious.  After my 5 days in a coma, I was interacting with the world around me and operating with a full set of memories about the people with whom I was interacting - my family and friends.  What’s more, I was forming new memories concerning the doctors who were treating me and demonstrating at least some understanding of my situation.

Yet I have absolutely no memory of this.  All my time at Geisinger Medical center - there’s nothing.

And when my ability to sustain memories returned, there was no grand moment of revelation - no “Holy Shit, I can remember now!” - yet for some reason, my mind/soul/consciousness/being/WhatHaveYou picked this instant to press the record button on my personal timeline.

No idea why.

I’m not suggesting I want to remember these moments of early, conscious recovery - I’m sure there was a host of pains and anxieties that I can’t begin to comprehend prior to record being pressed, and I feel rather fortunate that I don’t remember.

There is a scientific explanation of internal processes beginning due to traumatic situations - Glucocorticoids being produced during a trauma which override the Hippocampus (the core memory system) in our brain - for survival purposes, our bodies don’t want to relive memories of extreme suffering, so these memories tend to get erased.  Please recognize, my explanation is grossly simplified, and I did find at least one paper that goes into the science of it (http://www.jneurosci.org/content/24/37/8161), but as a non-professional, it quickly becomes techno-babble - you, however, are welcome to go though this more detailed research and if you want to try to better explain it to me, please leave some comments and we can arrange a meeting/Skype.

As of yet, however, I haven’t found information that explains why our brain chooses particular moments to turn the memory back on.  Nor have I learned of any set of objective conditions that will trigger such a reaction - in truth I doubt that there is a way to document any objective conditions during a subjective experience of a trauma.

I also don’t know why, when I was at Geisinger hospital and surrounded by my close knit community of family and friends, my mind/soul/being choose not to remember.

I don’t have answers - only questions.

But its interesting.

Thoughts?  Please share below.