Scene 22 - I Fought with My Parents

**********Scene 22 - I Fought with my Parents**************

I fought with my parents,

a lot.

And it didn’t always make sense -

I remember one time -

she could see that the fight was going Nowhere so she 

Ended it by going into her office and closing the door.

And I was Not okay with this! because!…!  Because!…!

Well, because I could see she was 

Kinda right and that was, kinda, being an idiot…

but I wanted her to know why I was being such an Idiot, it was because She…!

And I Stormed into that office, not sure if I was going to apologize or Scream at her -

- and she’s sitting at her desk,

glasses in one hand, tissue in the other…

red eyes staring at…nothing…

She looks at me,

“What.  Lethan, what.”

And I knew that both my parents did Try to work with me,

and they loved me,

and they were trying to help,

and I wanted to work with them, but They just Refused to see things My way!

I didn’t want much! just things a Normal seventeen year old boy wants to do…

****************Commentary***************************

Since receiving brain injury, I have found RAGE to be the most terrifying experience.

There is no denying that I had a temper before my accident - I could sometimes get very angry very quickly - but after the accident the anger changed…somehow became…more…more invasive, more dominate, more insistent - not insisting on solving a problem but insisting that I must WIN the fight - it became an intoxication that takes over the body and soul - divorcing the body from the mind - divorcing it from Reason - releasing dangerous, violent passions…

It begins as a poison - rage seeping into my conscious with venomous stealth - inspired by an annoyance or misunderstanding that may or may not (more likely not) have any lasting consequences upon my life - the conflict could be but a brief hiccup in immediate plans or intentions, but still - bit by bit - the rage dominates my being - forcing self-awareness and self-control into an aether where they cannot influence my actions - forcing my reason - to passively? observe while my physical form acts in an appalling manner.  I question the term passively? because emotions are rarely “passive” - and this Reason - that at times of sanity seeks to remain in control of my body - is observing an absurd rant or scream or thrashing - devastating passion is in control and Reason and is forced to watch - it remains aware - and thus - for what might be termed a reasonable cause - my reason becomes Angry.  

This anger is the same - or at least similar - to the anger of disgust - what comes froth when we witness a behavior that brings shame to humanity - when we hear of or learn of or see an abusive politician-parent-spouse and we say “Fuck That Person - that Piece of Shit - that Embarrassment to Life.”  The Reason that is me sees this - and I Am that person.

That is who I have become - in That moment or passionate anger - I am not who I know myself to be - I am this Other - This…

And I become even more angry - the anger feeds itself - self-anger stirred with self-pity - irrationality dominates reality and this self-anger devolves into self-hatred - further feeding the beast - and so my physical form responds “Well I’m shit anyway” and seeks even more destruction - meanwhile - standing alone - watching - outside the chaos of reality - Reason cringes and cries - my physical form writhing until the fuel for the rage has expired.  Then Reason must return - attempt to deal with the results of the actions it observed - perhaps creating a false justification - perhaps attempting to move on, trying to deny that I actually did what was just witnessed - perhaps hoping words can atone for actions.

I write this and cry.

I hate this, yet this is part of me.

Although (as said above) I’ve always had a temper, after the accident it changed - and I recognize that my brain injury is likely a contributing factor to this self-destructive cycle.  This is a reason for my temper, this is a cause - but Fuck if I Dare to use it as an excuse.  This rage is my responsibility and I must manage it.

Anger after brain injury is relatively common, and there are suggestions of how to manage rages (for one such article, check out https://www.brainline.org/article/anger-following-brain-injury) - the technique I have found most useful is - when I begin to become aware of even the hints of a rage - get out of the situation and take some time alone to cool down - let reason take control - and then return to the situation.  The problem is that I don’t always catch the warning signs quickly enough.  Still, I think it is important that I am trying, though I don’t think merely “trying to be better” excuses any rage.  If a person has rage issues, it is that person’s responsibility to find help.

While preparing to write this, I found a host of articles and websites that discuss dealing with anger after brain injury - and this is all important information - but I found nothing that describes the introspective experience.  This blog is about storytelling, and I want to share my experience to try and add something new to the conversation.  Please - if you have any anger control issues - share your experience below.  You are welcome to share control techniques, but I am also interested in the personal experience of rage - this is the area I feel not enough has been written about.

Also, in that light, if you know of any articles, books, or lectures that discuss the introspective experience of anger after TBI, I would appreciate being made aware of them.

Thank you for taking the time to read.  Please leave comments below.

Scene 21 - That's Just How She Feels

***********Scene 21 - That’s Just How She Feels***********

A lot of times, in Traumatic Brain Injury,

one of the parts of the brain that is injured is the frontal lobe region of the brain,

this is the part of the brain involved in emotional self-control,

and for Sarah, ever since her accident, she gets real excited, real quick.

She also Cries a lot.

Doesn't understand it, that’s just 

how she feels.

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

Special Thanks to Dr. Jonathon Freezer for reviewing and verifying my understanding of the medical science behind this article.

The frontal lobe region of the brain is located - as implied by the name - in the front of the head.  As most evolutionarily advanced region of the brain, this area is sometimes (often) cited as the part of the brain that “makes us who we are”.  It is the emotional control center for a person and, as currently understood, it is the home for personality.

In brief, the function of this area of the brain is sorting things out - taking the stimuli delivered by other regions of the brain (senses, memories, instincts…), processing this data, and creating a response.  This is the part of the brain that’s involved with executive functions - these are advanced cognitive functions of the brain and include processes such as problem solving, recognizing and adhering to social norms, creating a plan to achieve a goal, and other activities that involve coordinating multiple brain functions.  To provide an example of this in work, let’s look at the situation of deciding what clothes to wear to a party.  In this instance, the frontal lobe region - by coordinating memories of past encounters, with a prediction of what type of social group will be present at the party, with a reasoning about what outfit highlights your best features, with an understanding of contemporary fashion… - lets you know that you’re outfit tonight will be DYN-O-MITE!

Furthermore, some of the stimuli that this area of the brain receives is emotion.  Fear, love, joy, sadness, and other root emotions are fed to this region of the brain so that it can process the immediate sensation and filter it so that one can react in an appropriate manner.  Please note, this is not where an emotion originates, but a stop along the way - prior to our experience of this emotion.  The raw emotion - fear, love, joy, sadness - is tempered by reason.  When you show up at the party dressed like a supermodel and a landslide of compliments is pilled upon you - this was your goal and joy rushes through your body, but - because your brain provides the appropriate filtering about what is socially acceptable - instead of rushing about and hugging all friends and strangers, you simply nod, give a slight smile, say “Thank you”, and move on.

It is this advanced cognition, reasoning, and emotional regulation that decides how one reacts to stimuli - in other words, it forms one’s personality.  That said, the frontal lobe is the region of the brain least necessary for physical survival - being a breathing organism that is classified as living - but this region of the brain most necessary for our being recognized as individual persons. 

Being in the front of the skull, it is also the part of the brain that is post often damaged in a traumatic brain injury.  When an injury happens, branches that sprout off of neurons and transfer information between brain cells — called axons— are broken and release toxins that damage other neurons and axons.  These damaged cells create disruptions in communication between the cells, and thus it is harder for functions of the brain to coordinate.  

In the scene above, Sarah’s difficulties with emotional regulation is acknowledged — “…ever since since her accident, she gets real excited, real quick.  / She also Cries a lot.”  — furthermore, she doesn’t understand why this happens.  I take this lack of understanding to have two meanings:

First - Sarah does not fully understand why these emotions pour out in such extreme ways.  I believe she has a memory of having a higher emotional control and/or her new emotional extremes have been pointed out by other people, and she does not understand why - now - these emotions overwhelm her so completely.

and Second - she doesn’t understand the science behind what is happening, and that’s understandable - its a rather complex process.  Above I have laid out a simplified explanation of how this works, and it still took many hours/days for my personal comprehension.  There’s nothing wrong with not understanding how it all works.  The brain is an incredibly complex organ that the scientific community is just beginning to understand.  I just know that - for years I was told “The frontal lobe damage can create problems with emotional self-control”, but I never did the work to understand Why.  Until now, I was okay with that.  But Now I recognize that by surviving, I’ve been given an opportunity to do more research and learn what this means - and as part of writing this blog, I’ve finally taken advantage of the opportunity.  

Please note, my explanation above is only a summary explanation of how personality is formed and the frontal lobe region operates - the specific intricacies are far more complicated, but the goal of my research and writing was to trim the complexities and to present some of the core processes and basic concepts involved with the frontal lobe region of the brain.

I hope that what I’ve said makes sense, and I hope it helps you understand your brain a little more.

Please leave comments below - chat soon.

Scene 20 - Hard Time Relating

*************Scene 20 – Hard Time Relating***************

Ever since my accident,
I’ve had a hard time relating to other people.

See,
I know some things,
because of what I’ve gone through -

you know - I almost died,
I’ve seen God.

And other people,
they have a hard time relating to that.

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

One way of “relating” to another person is understanding what he or she is talking about - or, vice versa, having said person understand what you are discussing (see footnote 1 at end).  What’s more - to truly achieve an understanding - persons must have some set of experiences concerning the discussion topic that can been drawn from for reference, and these experiences must overlap in some manner.  If you and I are discussing a “chair”, we both have some concept in our mind of what “chair” is - we’ve both seen countless chairs.  Now, the details of the “chair” our minds conjure as a reference point may vary - my chair is pink and has fluffy pillows while your chair is wooden with a straight back - yet in most circumstances, we can agree upon enough fundamental characteristics of “chair” that we can “relate to” one another when discussing a chair - the phrase “I sat in a chair” causes no confusion.

But if the people communicating do not have an agreed set of meanings from which to work, “relating to” one another is at minimum difficult and very possibly impossible.

What do I mean? - An absurd example: Bob has lived a life completely sheltered from snow - he lives in a land where the temperature never nears freezing, every book or movie or song that refers snow has been banned due to culturally sensitive and/or long forgotten reasons, pictures containing images of snow have either been burned or colored in with yellows and greens and said to be an artist’s interpretation of grass.  For the majority of situations, Bob speaks perfect English, but he has never conceived of the word “snow” - in truth, the idea of putting the “S” sound before the negative determiner seems absurd - “sssNo”.  Coming from these conditions, when Bob meets Karyn the Canadian and she begins to blabber about this thing near her home called “snow”, it baffles Bob - Bob has no experiences he can use to successfully comprehend “snow”.  Granted, using descriptive terms Karyn the Canadian may be able to verbally depict “snow” in a manner that grants Bob an idea of what it is, but this assumes that they have overlapping experiences with terms such as “cold” or “flakes” or “melt” and so on.  Without experiences that can be compared, the concept of “snow” is meaningless to Bob.

The above situation is ridiculous - and I giggled while writing it - but I use it to demonstrate the point that an agreed upon understanding of terms is necessary for communication to be understood in any real manner - terms and ideas must be experientially defined to have any real meaning - and if alternative adjectives are used to define a more complex topic, there still must be some experience that can be referenced in order to understand what these descriptive words mean. 

With that established, I observe that any survivor of a traumatic incident pulls from a set of such experiential definitions that others - those who have not had such an experience - cannot conceive of.  I write as a survivor of TBI - as a survivor I have recognized a shared understanding that exists among fellow brain injury survivors that does not fully translate to those who have not had such an experience - but I presume that every survivor - be the persona a survivor of: TBI, famine, battlefield fatigue, rape or any other trauma - has access to an understanding that is unique to his or her survived situation.  Please note, I do not mean to equate these traumas - each trauma has an un-equatable set of pains and difficulties associated with it - but I group these situations to recognize that all traumas contain a set of “experiential definitions” that will limit a friend or family member - one without such an experience - from completely understanding or relating to the survivor.

I will continue the article discussing only survival after brain injury, because that is an experiential definition I have access to.

In the scene above, Tony specifies some of his experiences - “I almost died, I’ve seen God…” - and he believes, understandably so, that these are experiences that cannot be comprehended - to understand the fully glory of God without such an experience seems impossible.  But perhaps the example of this scene goes too far - the reality of “You can’t understand me because I’ve seen God,” might be an argument that is impossible to refute or defend - so suppose we remove the Divine from this situation.  Instead, we cite the example of a brain injury survivor attempting to communicate the ineffable experience of recovery after TBI: the experience of rediscovering functions of the brain and body that were previously ignored because of their seeming simplicity - testing each ability to discover its limits - relearning and adapting basic skill sets needed to complete tasks that were previously effortless - the experience of attempting to explain this rediscovery process to people who have had no comparable experience…a set of ineffable experiences such as these can make it hard when survivors try “relating to” other people.

This is one reason we must share stories of survival - not to explain the tragedy in any definitive manner, but to provide data points that can be used for those who have not experienced such an event - more information about that which makes the experiential definition of survival.  I argue that with more data points, the experience of survival - while never fully communicable - can become easier to understand for those who are, concerning a particular circumstance, experientially ignorant. 

That survivors can find comfort and support by sharing stories is not an original idea - and many groups have formed around this need - support groups such as this can often be found by searching online for groups focused on one’s particular tragic experience and can hopefully be found in one’s geographical region.  One must be careful, however, as it is possible for conversations among survivors to devolve into “bitching session” that take on a spiteful tone that encourage disillusionment and despair - complaints are an important part of the healing process and pain should not be ignored, but dwelling in pain does nothing to remedy a situation.  When a conversation pushes focus toward only the pain, it is important to remember that there are always moments of beauty and hope - maybe as simple as seeing a butterfly kiss a windowsill as you gaze out your room’s window, or being able to remember a new flavor fed to you by a caregiver, or taking an unassisted step for the first time since the injury - these may seem insignificant, but must be acknowledged as being as real a part of the recovery process as the pain.  Small miracles are still miracles.

Remember, the most miraculous part of any survivor’s story is that he or she has survived, and survival allows life filled with all splendor and pain - minuscule and grandiose - and life encourages a future that contains infinite possibility.  When you tell your story about the experience of recovery, tell all of your story.  Someone who does not have the proper “experiential definition” can never fully understand a survivor’s experience, but the more stories that are shared - the more subjectively informative accounts that exist - the easier it is to “relate to” someone who has had a different experience - to understand the tragedy and the glory of recovery.

I will give one shoutout to an organization that collects TBI survivor stories and I am proud to be affiliated with - TBIVoices, led and organized by Attorney Gordon Johnson of the Brain Injury Law Offices based in Wisconsin.  This group collects and shares stories of TBI survivors so that there is an easily accessible archive providing a collection of examples of what is real in recovery from brain injury - Check it out.

There’s more that I could say, but - to refrain from rambling - let’s call this the article complete.  Please leave your thoughts below.

Footnote 1:  Please note, I recognize there are many other ways of “relating to” another person - many of which might not involve verbal communication at all, instead relying on non-verbal cues or even an emotional understanding that cannot be expressed using language - but I use verbal communication to illustrate my point because it can be recognized, documented, and discussed in a relatively clear manner.  I believe other, more abstract, forms of communication or “relating to” another person follow the same or similar patterns as that which I am about to present - but, for a slightly easier understanding, my remarks will involve achieving an understanding using verbal communication.

Scene 19 - It's a New Year

**************Scene 19 - It’s a New Year*************

I remember when I left Magee Rehabilitation Hospital.

It was December 23rd, and I was going to be Home for Christmas
What’s more, I was going to be home for New Years Eve,

and this was the big one -
into the Year 2000 -
And I was returning home for the Mother of all New Years Celebrations -

See, Bloomsburg, my town, was going all out with a First Night celebration -

It’s this
city wide spectacle to bring in the New Year,
and there was going to be live music downtown,
and games,
and street theater,
and the rotary club was dancing the polka,
and there was Lots of Fried food,

- it was my First trip downtown,
and Everyone was there.

I was walking around - with my parents help -
We saw my friends there,
and my parents’ friends,
and people who I had never met before but who had heard about me through their friends
- it’s a small town thing -

and I thanked Each and Every person for their love and support,
and I told them,
without your love and support I would not be where I am today,
So thank you.
Thank you.
Thank You.

And sometimes it might bet a little bit weird - but then I would laugh,
and I remember Balloons, and confetti, streamers, and thinking This is My New Year

I was returning home
Alive.

I had been given a chance to view life in a new way.
I had been to the Gates of Hell
and I had visited Heaven.
and now it was time for me to share all that I had learned.

And it was going to be good - it was going to be Real good -
A new Life with new Millennium.

Here we go…
Five,
Four,
Three,
Two…

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

This was my Celebration.

Or, at least, that’s how it felt.

I’ve always had a theatrical flamboyance, and to have my homecoming seem like it was heralded by a citywide celebration was amazing!

Be clear - cognitively, I knew that this New Year party wasn’t about me - but it felt like it might be - just a little.  It felt - this was the scene in the family television drama when - when the boy graduates - when the father reunites with his daughter - when the hero comes home. 

That’s what I wanted it to be - the grand conclusion - because in the TV show, once the protagonist completes his or her transformation and makes the return, the movie is done.  You can stand up, brush the crumbs off your lap, go to the bathroom, wash your hands, and move on with your life feeling a little bit happier because the movie worked out.

In my story, I felt like I had gone through my trails and learning at the hospital - yes they had told me that the healing would continue for years, that I would continue to discover and experience new limitations in my abilities - but now I was out!  I was coming home!  Things would only be better from now on!

I thought.

This was my Celebration.

Upon reflection, this moment brings up two sensations - joy and melancholy.

First, this is a moment of joy - let’s just call it for what it is -  a moment when I am celebrating the work I have done - with my community - to bring be brought back from the hospital - now the emotions and events have all been squished together in my head - its a porridge of momentary memories - but I remember coming home - waving goodbye to the nurses - leaving the hospital - I remember a golden warmth in my household - to celebrate Christmas - and I remember that First Night - excitement - celebration - maybe the journey wasn’t over, but the end result was clear -

- and I can’t help but view this with a tinge of melancholy, because I know the difficulties and pain still to come.  It’s that moment in the movie when it seems like everything is perfect, but then you look at the time and you’re…maybe 20 minutes into the film.  Having seen this film before, I know the hardest parts are still ahead - but we need to be clear that the real emotion in this bundle is joy.

JOY!

Had I known the future, perhaps I wouldn’t have reveled in this with the same exuberance, but at the time I had no idea, and it didn’t matter - at that time, I don’t know.  We can never have certainty about a future moment - we can make a prediction, but any prediction might easily be disrupted by a stiff breeze.  What we feel NOW is true - and in that now, I felt joy.


Therefore, I’ll take the memory for what it is -


It’s a bit ignorant - yes - but that doesn’t matter- it was what it should always be.

I believe we should try to allow pure memories such as this to exist - unaffected by future memories that tint the past.  Examples - this might be acceptance to a college that later turned out to be a disaster - a relationship beginning with magic and ending in catastrophe - a moment of
- ?false? - hope in recovery.  The fatalist might argue that this momentary pleasure creates a false optimism - that a moment is truly happy only when we can reflect upon it from the future.  To this point I argue that, as humans, we often do feel the greatest pain after the greatest joy - but if we don’t remain optimistic that we will feel such joy again, why do we try?

Returning to the film metaphor, this is when the hero has just completed some great task - maybe he’s climbed a mountain, but danger lies ahead - the movie’s not done yet.  If I’m watching this film, this is when I want the camera to pull back so we - the audience - can appreciate the scenery.  In recovery, as in life, there are countless mountain tops - and these are consistently followed by struggle - I suggest that when you’re at the top of the mountain, take a moment and enjoy the view.

That’s what I got - take it for what it is.

Scene 18 - The Return...Almost

Happy New Year everybody!  Its been a while since I've posted - I got caught up in the holidays activity and my end of semester teaching work...but I'm back.  I've got a lot of exciting plans for this year ahead, including some future work with this piece, so please keep reading and I look forward to sharing stories with you!

But now...for the first post in the new year...

************Scene 18 - The Return...Almost*****************

For Larry, this is his second stay at the Crumley House.

Only had one accident, but two stays,
see, the first time I stayed at the Crumley house, I had just graduated high school,
and I heard all these stories in my school about people getting ready to…
go to college…get a job…I don’t know…
DO things…
and I wanted to Do things to,
and I couldn’t at the Crumley House, there are so many rules and restrictions, and I couldn’t DO all that I wanted to Do -
So I left.

I went out, found a…job…
stayed at an apartment with some -
some people I knew, and…

it was hard.
Like, no one understood -
where I was coming from, why I needed help sometimes, and…

I got real depressed.

So I thought back in my life, to when I was happier,
and I remembered my time at the Crumley House,
see there, people knew what I needed,
understood me, where I was coming from.

I had friends there
and I didn’t feel…
Different.

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

As a survivor, I deeply appreciate this story. 

I admit that I do have an affinity towards Larry’s stories - because we are close in age - but this story is particularly moving because it begins as a story about The Return - the move from the safety of a rehabilitative environment to the noise-chaos-danger-excitement that is the modern world.  This transition is one that every survivor must make - the return to one’s former life, or some variation of that, is one of the goals - spoken or unspoken - in recovery.  A survivor wants to find some semblance the life that was, but moving from a hospital environment to one’s former setting - to use choice language - is a big F-in’ change.  This change will cause Hope, Pain, Joy, Anger, Faith, Inspiration, Frustration….  

The survivor has changed -

Yet, those in the survivor’s previous life (family, friends, colleagues…) have not - at least not to the same recognizable degree that the survivor has changed - and thus will likely not understand that magnitude of these physical and emotional changes.  Supporting friends, family, colleagues say -

“You’re out of the hospital - you’re walking!  You’re Alive!  Oh my God - Congratulations!  YOU DID IT!  I’m so happy for you - now lets go hangout exactly like we did before.”

but a survivor cannot live exactly how they did before.

The inevitability of change after TBI is a theme we have harped on throughout these writings, but I am using this entry as an opportunity to recognize that, while a survivor has changed, the world that the survivor came from has not.


A survivor may understand that he or she must interact with the world in a new manner, but that world (friends, job, school…) has likely not been prepared for this, and should not be faulted for being unable to accommodate said survivor.  Every person is relentlessly bombarded with difficulties to some degree, and the challenge of adapting to a survivor’s new set of skills is a burden for which most people don’t have the time.  And let’s be honest, it’s not fair for people on the peripheries of a survivor’s social circle to be expected to take on such a task - a survivor should be able to call attention to his or her new abilities in any setting, but the challenge of learning how to fully use these new abilities is the survivor’s responsibility. 

That said, it is tiring and may feel self-defeating to repeatedly need to explain one’s new skills - especially when those trying to listen just don’t have the training or experiences to understand the changes.  In Larry’s words, “No one understood - where I was coming from, why I needed help sometimes…”

This story begins as a story about the Return, but it takes a turn when Larry decides to go back to the Crumley House - to not return - at least not yet - to continue rehabilitation in a setting that is safe and supportive.

This is NOT giving up.

This is accepting what is and adjusting plans in order to make a more complete return when the time is right - when a survivor is ready.  A person cannot grow without support, and if a survivor is not ready for the Return - does not have the support he or she needs - attempting to make the transition can leave a person flat.  Larry did not find the support he needed - no one’s fault, it is simply what was - and was fortunate that he had the wisdom to return to the Crumley House where he knew this support existed - where he could be his new self and more fully grow.


To finish, in Larry’s words, “…There, people knew what I needed, understood me, where I was coming from.  I had friends there and I didn’t feel…different.”