A Christmas Revelation

  I am alone and in Malaysia this holiday season due to a series of circumstances that are irrelevant to this article, but I want that to be understood as context while I relate this story.  Know that I am healthy, safe and trying to remain optimistic about future plans, but simply put, it sucks.  I did share a internet video chat with my parents and sister in the States and my wife who is currently in China, but I wanted to mark the holiday by doing different, so I decided go for a hike early Christmas morning, and using the power of the internet I found a large hill/small mountain named Broda Hill that I could visit.

Taking a taxi to the base of the park, I arrived just as the sun was beginning to stretch and promptly walked to a ticket entrance where I learned that some of the steeper trails had fallen into disrepair and not all of the scenic areas were open.  This meant that, according to the official statement by the workers behind the ticketing counter, I should not even try to reach the top of the mountain, the spot that contained the views that had been advertised.  I could still trek through the jungle and see whatever views were there, and the ticket takers promised that there would be spots for pictures, just not the panorama I had intended to see.  Having already paid the taxi for the commute, and with no other plans, I accepted the restrictions and continued with my planned hike.  My philosophy is generally to say ‘yes’ to any event and attempt to appreciate whatever occurs.  For the most part, this has resulted in good choices, but you never know, but I try to aim forward because I’ve already seen behind me.

And the hike was fine.  There were a few other people on the trail that took me uphill, but for the most part everything was suitably quiet.  It was pretty.  I was walking through the mildly cultivated jungle, marching along a steep the hill side, finding foliage framed views of Malaysian farmland lit by a morning tropical sun that was resting atop the mountains on the other side of the valley.  

        Having barricaded myself in an apartment for most of the last month with the aim of keeping safe from disease, I enjoyed the fresh air and the packed dirt paths, but was disappointed that I wouldn’t see the sites from the top of the hill.  Actually, let’s be fair, “disappointed” might be too strong a word, as the melancholy that came from the lack of a holiday mood brewed apathy more than anything else, so I wasn’t really disappointed, but I did have a strong sense of, “Eh, well that sucks.”

I walked until I couldn’t find a trial, and then turned around.  It had been maybe an hour and a half, but the sun was now fully in the sky and people were beginning to populate the path.  Finding a side trail that went uphill on the right, I decided to explore, and soon this turned into a climb up the mountain.  I was moving toward a peak that may be officially closed, as advised by the ticketing workers, but I observed several groups attempting to navigate a way up the steep rocks.

I thought, “Why not?” and began to climb.  Carefully setting each foot before any movement and relying on my hands for support, I was able to begin the ascent.  It was tricky, but a tinge of excitement began to percolate in my body, for this was something new and presented what could be a Christmas challenge.  The rocks grew less stable, the ascent  steeper, and when I was about a third of the way up I stopped to refresh myself with some water and decipher my next steps.  Small pebbles coated the larger rocks, making the stone slick as ice and near impossible for my road-running shoes to grip any surface,.  There seemed to be two potential routes up the hill, right or left.  I’m right handed, so I attempted the right path first — it looked steeper, and would require more work with my hands, but it also seemed to have fewer rocks and would create less danger of slipping.  The gaps between the rocks, however, were too large, and after about fifty meters, I turned around.  I might have been able to keep going, but decided to at least look at the path on the left before deciding what course to take.

I found the same ledge where I could rest and survey the situation.  As I recouped with more water, I watched as a group of young men, perhaps 15 years younger than I, came from the top of the mountain and navigated their way down the steep slope.  I was trying to see the path they took and consider if I might follow it in reverse, when I heard the slick sound of rock on rock and watched as one of the hikers lost the grip with his shoe and began to skid down the mountain with an avalanche of pebbles skirting after him.  Now, he did not seem shocked by his slip — may have even planned it — and stayed calm as he surfed past me, going down the mountain for another 10 to 15 meters for a total ride of about 40 meters.  His cool and calm was impressive, but when his feet found a solid grip again, it felt like everyone watching nearby breathed a collective sigh of relief and his wide eyed friends let out a nervous and relieved gaggle of laughter and then returned to focusing on how to make their own, more cautious decent.

There was never any serious danger.  Everyone was fine and the “great stone slide” will likely be forgotten by the youthful hikers, but I stayed on my safe perch and began to run some numbers.

First, I would probably be fine going up the steep hill.  Definitely at least a 50% chance that nothing went wrong — no, probably better than that...at least 60%, maybe even a 70% likelihood that I could climb the steep, mountain-ish hill and nothing of note would occur.  Assuming that is what would happen, I mount the summit and witness a beautiful panorama from the peak.  No doubt, that would be...nice.  I had seen internet previews and didn’t expect a mind-blowing or life rejuvenating experience, but it would fun.  There would be a good view, I would pause, sip water, ponder the majestic quality of nature while I caught my breath, look around and realize I had no one to share the moment with, and begin to climb down.  It would be, eh... nice.  And I am in relatively good shape, so I would probably be if fine — I’ll revise my numbers and give it a 75-80% chance that I’m fine.

But then I thought about the alternative.  According to my presumptuous calculations, there was a 20-25% chance something might happen.  This something might not be THAT bad, but...I mean probably not, but who knows?  It could very well be that in some possible future there was a chance that I would also surf down the rock, but instead of using shoes with improper tread, I would use my face — not likely, but not impossible.  And there was also a chance that I might drop my cellphone down the side, loose my water, bust my jeans...  Or I could ignore this risk and prove myself...to myself...in a solipsistic ego stroke...and I would see a view would be...eh...probably nice.

I’ve had the privilege of seeing countless “nice views” in my life.  Sometimes these views come from a long hike in through a forest and other times from a short stroll around town, but regardless I have seen thousands of “nice views”, and probably hundreds of truly spectacular landscapes.  What’s more, I hope and expect to see as many or more such sites in the future, as long as I don’t prematurely end my ability to take in such experiences by surfing down a mountain side and not sticking the landing — this is especially true when I’m stuck in a country without insurance.  The climb would possibly lead to one more new, “nice view” that I could add to the stack of thousands, or I skip it and be assured safety.  I made a choice, and did not to climb.  I would have probably likely been fine, but did I need to take the risk?  The future awaits.

I include this story in my blog about survival because it is an example of recognizing limits.  As survivor, I try not to let anything stand in my way — I want to push my abilities to their fullest, and no one can say that brain injury has limited my life experiences.  More importantly, I push myself because I don’t want to consider the idea that my injury has hindered any of my choices.  I want to know that I am fully living life.  This is important, and I encourage all survivors create, face, and attempt challenges — push yourself to do more than you did yesterday, try what hasn’t been done, see new things, but realize some tasks are just too dangerous or dumb to do, and know that not doing everything does not mean you have failed, it means you have thought about it.  That’s how I looked at my decision not to climb the mountain — I didn’t have a safety network, I didn’t have the gear, I didn’t have the experience, and I might have probably been fine, but I can forgo one nice experience to ensure experiences in the future when I am better prepared.

This revelation was my self-given Christmas gift.  I’m getting older — nearing 40 — and while my body might not be able to bounce off rocks with the elasticity of youth, I will accept the wisdom that I’m finding as a supplement that previously imagined invincibility.

(The photos added are from that hike.  The first is from a safe spot on the trail, the second is from my perch part way up the climb — it doesn’t really give a full perspective of the difficulty, but you can see the slick pebbles on the rocks.)

Predictions of Rage

  Rage is an issue for me.  It has been for all my life, but especially since my brain injury.  It’s taken a lot of work, but now I am at least conscious of the dangers rage can create, and I am actively working on finding ways calm any impulses, yet there have been times when it seems that I foresee when a rage will consume me — as if I can predict the future.  It’s a vision in my head that dictates what will occur to ignite my temper.  I do not have this sort of vision often, anymore, but when such a vision does find me it will almost inevitably come true.

Since I’ve recognized that this premonition occurs, absurd questions have popped up.  Am I psychic?  Can I predict the future?  Is there any way to use this talent to make some money?

Recently, a rage struck me.  It was not in anyway dangerous — no one was harmed, no relationships were damaged, but I did used crude, immature language toward another person because the company that person worked for was attempting to cheat me out of several hundred US dollars — I ordered a product that wasn’t delivered and the company acknowledged that the product wasn’t delivered, but they were not refunding my payment.  There was legitimate reason to be angry.  As the situation began to play out I had a vision, and I knew exactly what I would say to this person if they didn’t adhere to the guarantees that had been promised.  I envisioned exactly how the rage would strike and what venom would spew from my tongue.  This was repeated many times on the movie screen of my mind, and at times it would even inspire me to vocalize my anger as I expressed myself to the walls of my apartment with passionate tones, as if I was shouting at the villain while watching a TV program.  And it was very much like criticizing the TV because my vocalizations had no effect — there was nothing I could do to stop it — as it was a vision of what would occur.

So when the worker contacted me to give me bad information, as predicted, and reported the company’s hesitancy in refunding the payment I made, and my vision came true.  The words that had been screened in my mind dozens of times were recited with exactly the same vehemence I had foreseen.  My vision came to pass and I verbally raged at this person.  The immature spite that spewed out didn’t change anything, for better or worse, but it did stain my name.

I am ashamed and embarrassed when a rage strikes.  As I said, I am working to calm these impulses, so when this happened I asked, why?  How could I predict this?  If I had foreseen such an action, why couldn’t I stop it?

In the hope of calming my anger and deciphering answers to my questions, I went for a run.  It was a terrible run, for anger had already drained my body of energy, but as my feet pounded the pavement, I pondered through possible reasons for my loss of control.  Again and again my feet hit the road and again and again potential reasons scrolled through my mind.

As I said, the run was not good, but I did run, and I was able to do some sort of run because I had done it before.  Again and again.  It is a habit of mine.

Again and again.  The reasons for my rage played in my mind.  It was a habit.

Realization!

My “vision” had been playing continuously in my head.  Again and again.  I hadn’t predicted my rage, I had rehearsed it.  My mind had used what was known to anticipate what would likely happen, and then concocted a response based on my history — I had a history of rage, so it assumed I would rage.  With this decision made, the scene that might happen was played with obsessive repetition and ingrained itself in my memory.  Therefore, when the reality revealed itself to be close to what had been predicted — the introduction to the scene — I knew exactly how to act in order to make the “vision” come true.  I said my lines, flailed my arms, and appeared as an ass.

I don’t like that, and my recognition of this tendency allows me to make a choice.  When my mind predicts a shameful response to some situation, I must be aware, and instead of accepting the scene as a prediction, I can decide what alternatives might occur.  How can the scene play out in a manner that doesn’t cause disgrace?  This is not to suggest that I ignore my anger, but instead of allowing it to fester and evolve into a grotesque rage, I can create a scenario that expresses my discontent in a reasonable manner.  By allowing this passive response to play on repeat in my head, I can rehearse what will happen, and through rehearsal habituate this sort of response.

I can make the choice to change my “visions”.  Sure, they will be less dramatic, but this will allow me to live a more joyous, reasonable future, one without moments of embarrassing and damaging rage.

I share this experience because I have heard other people comment on how a situation, “played out exactly as terribly as expected.”  If this sort of premonition ever happens to you, I challenge you to face that prediction and try to expect something else.  Rehearse a different set of actions in your head and see if you can choose a healthier, happier way to live.

My Journey to Appreciation

  The last entry shared the difference between accepting and appreciating one’s self-identity.  As a survivor of 21 years, I have reached the point of appreciation of my identity after brain injury, but it was a long journey.  This article will share a summary of my journey to appreciation in the hope that it can provide inspiration.

When the injury happened, I was a high school senior (12th grader) and was already at a transition point in my life.  Filled with youthfully ambitious pretension, the plan was to launch out of the small town I felt stuck in and shine my talent upon the world, and when brain injury occurred it delayed my launch date, but I refused to give up the momentum, figuring that “a bump on the head” wouldn’t hold me back.  It was temporary.  There was a plan prior to the accident and no reason why it couldn’t continue.  I was Lethan — the actor — and would move on to at least attempt, and hopefully do, great theatrical things.

But did I still want to be an actor?  Didn’t matter, and I didn’t even explore that question.  Why should I?  I had diligently worked at this craft for half of my long eighteen years — that’s almost a decade of my life (please do read the sarcasm)!  It was what I was made to do, my plan, nay, it was my destiny!  I was too strong to let this setback damage my core drives, and theater would always be my thing!

I was in denial.

It’s important to recognize that this wasn’t a denial that the brain injury had happened, but I refused to acknowledge that it was a life changing event.  I insisted on viewing it as a blip, a skip, a bump in life, and I convinced myself that everything would be back to normal once I healed enough.  It just might take a little bit of time.  I accepted that the injury occurred, but refused to recognize that it had permanent effects.  

And this view was encouraged by other people.  Friends, teachers, acquaintances spouting words of encouragement — “Don’t worry, you’ve got this,” — “Strong person like you won’t let this keep you down,” — “You’ll be back to your old self in no time!”  I don’t fault anyone for saying these words, as they are what one says to offer support and a positive outlook.  More than that, most believed that the words were true, and that was kind, but gave me false expectations.  I was convinced that I wouldn’t experience the effects of the accident for all my life, that I would emerge from recovery the same as before.

But this is not how brain injury works.  A survivor will almost certainly experience lifelong affects of the injury.  Brain injury causes changes.  I choose these words carefully, and notice that I do not say, “The survivor was changed by the injury.”  The survivor is still the same person, but that person has, and will, continue to experience changes.  My performance piece Who Am I, Again? begins and ends with the statement, “I am Lethan.” I use this phrase because it insists on a permanence of self-identity, but that said, a stable self-identity does not mean an unchanging personality.  The truth is that every person constantly goes through changes in his or her life — discovering preferences, learning skills, forming relationships — all these and more indicate changes, but it is important that the core identity of a person is recognized as constant.  Brain injury causes changes, but it does not change who that person is — I am I.

I emphasize this because learning to adapt to the changes caused by brain injury can create questions about one’s self-identity.  It can feel like qualities that are viewed as a necessary part of a person are either no longer present or have fundamentally changed.  A survivor may even be conscious of these changes, but not want to acknowledge them because the previous quality is a part of how that person has defined him or herself.  This can cause the survivor to cling to former qualities that may have changed as after the injury, and refusing to acknowledge changes may create conflict or stress.

This is confusing, so for clarity, I’m going to explain it again, but in another way.  

We all change over the course of life, and most times this change can be accepted because it occurs in a gradual manner.  Granted, there may be a few times in every life when, in an instant, there is a “big change” that occurs, but most times we can account for the events that led to this “big moment”.  Yet when brain injury occurs, big changes will become apparent throughout the rehabilitation process, but they don’t have the series of surrounding events that add context for these changes.  Sure, after brain injury the reason could be stated as, “Well, you had brain injury,” but often the event of the injury isn’t remembered by the survivor, and its hard for an unremembered event to provide sufficient rational for an unbidden change.  What’s more, if a survivor is told, “Everything is going to be fine and just like before,” as described above in my experience, unanticipated changes can cause greater confusion, angst, and frustration.  This can lead a survivor to attempt to deny that the injury affected his or her life — “Sure, I had brain injury, but I’m fine now.  It was just a bump on the head,” — and by not admitting that these changes happened, a survivor may hang onto habits or tendencies that they remember as a defining feature, even if holding onto such a habit is no longer a positive experience.

As explained above, a habit I can clearly cite in my experience that caused me to deny my changes was my love of theater.  Sure, I still loved theater after the accident, but didn’t have the same passion, had lost some of the onstage charisma, and the drive to explore the art was completely missing— acting had become a thing that sometimes I did, even though I never felt good about my work.  Yet I refused to acknowledge that the need to perform as an actor was no longer a part of who I am.

This did eventually change, but I can’t pick out a specific moment when I decided that I no longer was an actor, as my move from denial and toward acceptance of the new situation was gradual, a change that could be accepted over time.  If pressed to provide my rational, I think it grew from not feeling comfortable among my peers in theater, finding a spectacular team of professors at my university that supported me in alternate subjects, and from just trying new things — but I was eventually able to recognize that theater, well... it just wasn’t my thing anymore.  My accident had messed up my plans and now I need to do something else.

This was acceptance.

I accepted that my accident had caused changes in both my passions and talents, and these changes hindered my intent to be a stage actor.  Now it was time to find something new, and there were many paths to explore — music composition, anthropology, philosophy, sociology, political science, law... Each subjects touched on something I enjoyed, but nothing gripped me the same way theater had — I never felt the same completeness, yet had to accept that the accident had ruined, or at least had changed my relationship with the theater.  After all, I was alive, and this was one of the conditions I had to accept in exchange for this life.

Eventually I found Storytelling, and it became a new passion that was a great joy, but it still felt like a substitute.  Theater was no longer an option, and I had to accept that now storytelling is what I do.  It was a second choice, and one that had to be accepted.

When this acceptance morphed into appreciation is similarly difficult to pinpoint.  In Scene 32 of Who Am I, Again, the character of Larry states his realization that his accident, “...kinda made me who I am today, / and I’m okay with that.”  For dramatic effect, it would be fun to say that it was this interview that inspired my appreciation, but in truth it was several years after composing the piece when the transition to appreciation fully occurred in my being.  What I do know is that the source of this change was recognizing how I could use my experience to help other people.  That the injury didn’t need to be something I attempted to ignore while it hampered daily life, but by embracing the experience I could better learn from what had happened and use it as a base from which to build a new life.  I came to recognize that the knowledge gained from the injury could help other people who are new to the journey of survival, and by helping others, I am still finding ways to help myself.

Being a survivor is a part of my identity, and I don’t need to hide that.  It does not define me, and I will not let it limit me, but I will appreciate the knowledge it has granted me.  This does not mean appreciating the injury, but recognizing what the experience has granted — a rare understanding of life that can be used to can help fellow survivors navigate the murk of recovery.  By helping others, I can find joy and peace with who I am.

I appreciate who I am and what I am able to share.

Those are my thoughts, and I hope they help you.  If you enjoyed, please share this posting and/or leave a comment.

Acceptance vs. Appreciation

  A lot has been written and spoken about the “acceptance of the reality after brain injury.”  This is acceptance of what has occurred and accepting the person you, as a survivor, have become.  It’s said that one of the goals of rehabilitation should be acceptance of who you are.

        I disagree.  Acceptance should not be a goal but a stop in the road that you visit while traversing the more complete path of recovery.  A person must be comfortable accepting him or herself after TBI, granted, but setting it as a goal doesn’t go far enough.  Saying “all you have to do is accept yourself” is like setting yourself the goal of running a marathon, but then dropping out after five kilometers with the thought, “Well, at least I tried.  I guess I just have to admit I’m just not able to do the whole thing.”  For the marathon of recovery, the goal needs to be that a survivor appreciates the person he or she has become, for by appreciating rather than merely accepting, it gives that survivor the power of choice in the journey that the future will take.

Acceptance is passive.  It is recognizing that the world is happening and believing that there is nothing more that can be done.  Acceptance of a situation is taking one’s hands off the wheel of life, leaning back and saying, “Hey, not my fault — let life drive itself — I’ll just let it do its thing.”  Acceptance might not imply actively a destructive action or encouraging negative thoughts, but it does imply inaction, and if you’re not doing any actions you can’t go anywhere.

 

So be active.  Don’t merely accept what has happened, but appreciate what the injury has allowed you to become.  Note, this does NOT mean appreciating the trauma.  The event that happened is horrific and has caused damage that will resonate in you and your world for all your life.  Tragedy should not be celebrated, but it can teach, and a survivor can learn.  Do the work to find the lessons in a tragedy, and you can discover how to grow.  It is the growth that comes from this learning that a survivor can appreciate.

Appreciating is active, making choices to recognize how to learn and how to grow. Accepting is static.  Appreciating is exciting — it’s being on a quest to discover unexpected gems of understanding buried beneath the mounds of muck created by hardship.  Accepting is boring, and lets the world pass with minimal engagement.  Appreciating is difficult, sifting through the pain and loss in an attempt to find the seeds of growth.  Accepting is also difficult, but can give the appearance of seeming easier, and it almost never offers rewards.

Appreciating is joyful.  Acceptance is blasé.

I contrast these choices here because too often I read and hear discussions about “Accepting who I am after brain injury,” and I find this attitude defeatist, depressing and simply unproductive.  Furthermore, “accepting who I am...” suggests that you are a different person, which is just false.  Brain injury forces adaptations and changes in some ways of living, but the identity of the person is constant — just now he or she is informed by the experience of being a survivor and navigating recovery.  A survivor has not changed, but can grow.

In the next entry I’m going to share some of my experience making the choice to appreciate my self rather than just accept what happened in my own brain injury experience, so check back soon.

My Pet Peeve

 For my pet peeve, I’m talking about how head trauma and brain injury is depicted in pop culture.

Be very clear, brain injury is nothing like it is shown in the movies. Too often when watching the screen, I see the hero experience some horrifying crash, an explosion, utter destruction — head smashing into the ground or a flying car — mayhem followed by darkness — it’s clear that there has been severe head trauma.  Cut to the next scene hours, days, or even weeks later and everyone is gathered around the surviving hero.  Eyes flutter open, the hero sees the loving crew gathered round — everyone shouts, “Oh my God!  You’re alive!  How do you feel?”

The hero takes a long moment, perhaps a few blinks, “Me, uh, I’m...I don’t really remember what happened.  How did I get here?  Wait...hold on...(takes a deep breath)...okay, now I’m ready to Save the World!”

This is absurd!  But time and time again it is shown as how people blink awake after head trauma.

And it’s overlooked in the news as well — news of real events.  A local station might cover an accident, or factory accident, or some catastrophe where a person or many people are seriously injured, and the focus is entirely on do the people live or not.  Granted, this is important information, but the extended rehabilitation and life long debilitating effects that come from the trauma are almost always overlooked or entirely ignored.

Now, I do understand why the media depicts stories in this manner.  Acknowledging the full process of recovery just isn’t that exciting, and most audiences don’t find the long, monotonous, grueling process particularly gripping — believe it or not, brain injury isn’t sexy.  The problem is that the depictions TBI portrayed by the media is how many people come to understand what happens in brain injury — that once a survivor opens his or her eyes its all over and things can return to how they were before. This sort of understanding can result in friends or family members having false expectations about recovery when someone close experiences TBI and can cause the survivor to be pushed into situations that he or she is not ready for.

So, whenever I see a false depiction of head trauma on a screen, it agitates me.  I hope that after reading this, seeing such depictions might frustrate you as well, so I ask that if you see this nonsense of instant recovery in the media, please point it out to any people you are with.  Don’t let it ruin the film, but you can say something like, “Yeah, that — coming out of a coma so quickly and easily like that — that’s bullshit.”  

I don’t expect the media landscape to change, but any person becoming slightly more aware about the reality of brain trauma in what is being watched will benefit to the world.

And whenever you do that, know that I thank you for helping to remedy my pet peeve.

Please leave comments below and share with anyone who might be interested.

Also, please check on the book available here at Amazon.com.

Returning to Awareness

Hello friends, it’s been a while — been hard at work on my book and figuring out how to get back to my home in the midst of this pandemic.  But now the book is out!  So that gives me some more time to write.  So here’s the first article, I hope you enjoy and look forward to your responses!  And if you’re interested in the book that started with this blog, please click the entry below — I’m really proud of the book and I hope to share it with you!

Now on the the article —

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

After my brain injury, there is a moment when I began to remember again — a specific moment when the memory function of my mind decided to start, but when it started this memory recorded only a picture.

— Click — 

And I look at the perspective of this picture and see it’s taken from my wheelchair, in the hospital, sunlight is streaming in, friends and family are also in the room along with laughter in the air.  This is not a movie camera recording, but a frozen frame that, while being silent and still, is filled with jovial energy and action.  And from this moment the timeline of my life was able to continue in my head because, while this memory is just a snapshot, after this were more pictures taken by my brain until the movie camera of my mind was fixed and more complete movie memories began to be recorded.

I highlight this moment because it is when some might say I “woke” after my coma, but there was gasp, my eyes didn’t suddenly pop open, no realization, “Oh my God!  I had brain injury!” Instead, I returned to awareness already knowing I had brain injury, and I had, in fact, been to some extent conscious and interacting with other people for weeks prior to this moment.  I suppose I was retaining a sense of who people are, at least in the case of my doctors and nurses, and I operated in the world with an understanding of my past — but I have no recollection of this time.

So is this moment — the moment I began to remember again — is this the time I “woke”, or did it happen earlier?  Did I “woke” when I opened my eyes for the first time — even though I have no memory of this?  Does the fact that I don’t remember more than pictures for a time after this memory diminish my “wokeness” at this moment?  Does that mean I actually “woke” later, but now I don’t remember what that moment was?

I use these questions to highlight the confusion I feel when I’m asked, “What was it like when you woke from you coma?”  To ask such a question shows a flaw the in the language that is used — the term “woke” implies that a coma is like sleep, and a coma is nothing like that.  Sleep is a time when a person’s body is resting, recharging, and perhaps doing a little bit of healing that is upkeep to make sure all the departments of the body are functioning properly; a coma is when the body is working overtime to repair the brain — the core processing system of the machine.  Using words such as “woke” and other similar language that is commonly used for for talking about sleep when discussing a person being in a coma leads to a misunderstanding of the lifelong physical and mental changes that are happening inside someone who is in a coma after traumatic brain injury.

I write this for two reasons.  First, to point out the flaw in the language used around an injury resulting in a coma — I believe this language can lead to false expectations about the ease of recovery after consciousness returns.  And secondly, I write because I’m curious if other survivors have had a similar experience with the return of memory after brain injury — where there was no moment of suddenly simultaneously regaining memory and consciousness.  I wonder if people had experiences similar to mine of a gradual return to awareness.

From my experience, I believe that most people who experience brain injury do have a slow return to awareness in which consciousness returns first along with some interactions, and then the memory is slowly activated after this, but I recognize that this is a presumption from and I have not yet found research that either confirms or refutes this belief.  So I put the question to survivors — what was your experience of returning to awareness and regaining the ability to store memories?  Please leave your thoughts in the comments below.  Thank you for reading and I look forward to reading what you share.

The Book is Out!

 Excited to announce that the book that started on this blog is finally available!

https://www.amazon.com/Who-Now-Storytelling-Appreciate-Self-Identity-ebook/dp/B08LQSR29J/ref=tmm_kin_swatch_0?_encoding=UTF8&qid=&sr=

Check it out and share your thoughts!

It’s been hard this year being stuck in Malaysia and not having the resources I would like, but I’m thrilled to say that, with the help of many wonderful people, I have been able to finish this book with limited access to resources.  Thank you to everyone who has supported this project!

Now back to writing new posts...

Now please share your thoughts on Amazon reviews!

Accepting Responsibility

Accepting Responsibility

A Story about Struggling with Addiction After Brain Injury

Having a brain injury will affect how a person interacts with the world physically, cognitively, and emotionally.  It is also likely that changes in these qualities will contribute to behavioral and social difficulties — at times a survivor may seem ignorant of social conventions or even lash out in a manner that brings physical or emotional pain to those who are close.  When such issues arise, it can be tempting for a survivor to blame all such behaviors on “the accident”, but this is a dangerous habit.  It should be a survivor’s goal to return to society without carrying the tag of “brain injury”, and part of that means owning up to one’s actions and to not copout of responsibility by using “the injury” as an explanation.  In this article, I will present my personal struggle with rage and substance abuse as an example of first avoiding, but then accepting responsibility.

I am a brain injury survivor of fifteen years, and after my accident it became apparent that I struggled with both rage and substance abuse.  I must clarify — when I say, “...it became apparent...”, I mean that other people could see these faults while I refused to acknowledge any responsibility.  This struggle could be seen in petulant temper tantrums, drug soaked blacked-out nights, intoxicated rages, emotional and physical destruction, and yet I faulted my injury for all such actions.  If there was a problem when I was drugged, I would appear the following morning dressed in what seemed to be appropriate guilt and say, “Hey, look, I’m really sorry.  I know I have these issues ever since my injury, and it’s not okay that this happens, but I’m really working on trying to...stop...I don’t know...calm this down.  It’s because of my brain injury, and I’m really trying to fix it, but...I mean, just know that I know it’s not alright.”

Yet these words allowed me to believe it was “alright” for fifteen years.

Each time this sheepish apology would fall from my lips, I was lying to myself and to those I had harmed.  Perhaps the incident would be forgiven, as my honest eyes and soothing words could at times work rhetorical magic — or sometimes there was simply no more forgiveness and I would be cut off from a lover or friend.  When a loss of this sort happened due to some combination of rage and intoxication, I would weep-away and damn the accident for cursing me with this burden.  In that moment my vow to conquer this “beast of rage” would be renewed — and then I would usually go and get high in order to “sooth the pain”.

Let’s be clear, there are mountains of research that show a connection between drug use and rage, and I was aware of this — but I was also aware of studies that recognize the tendency for outbursts of violent anger after brain injury.  I decided to ignore the first pile of knowledge and focus on the second because the brain injury was what I wanted to be wrong — that way I could persuade myself that I didn’t need to stop drugs and alcohol, I just needed to introspectively heal a little bit more.  And I convinced myself I was getting better by internally reciting egoistic monologues — something to the effect of, “My stupidity doesn’t happen all the time, it could be weeks, sometimes months when, yeah, I’m getting messed up on the weekends, or weekday evenings, or a quiet afternoon, but I wasn’t doing anything really stupid.  Not that I remembered, anyway.  I didn’t yell at anyone the night before and I don’t think anyone’s mad at me, so I must be getting better.  Look at how well I’m doing, I’m really working on this rage leftover from my accident.”

If I could blame my injury I could ignore the problem, despite a trail of consequences.  I lost my place at a university, jobs, friends, lovers, and always I weaseled away when the blame came to me — it wasn’t because of choices, it was my accident’s fault.

Until I lost too much.  A meaningless spat exploded, I drunkenly raged, and the woman I loved and lived with chose her safety and sanity over our relationship.  The morning found me hungover on the couch, and she had ended our romance.  It was necessary, it was clean, it was over, it was what I would have advised any friend to do.  And it was the unexpected crispness of this consequence that flipped a switch and convinced me to accept responsibility.  It didn’t matter whether the initiating factor of my anger issues came from the accident or substance abuse — the issue existed and I needed to help myself by getting some help.  It was time to try something new and get sober.

As a survivor, it is easy to blame personal faults on brain injury, and it is true that TBI can exaggerate or create less than amiable personality traits — but that cannot be a reason to allow a challenge or flaw to go unaddressed.  The injury is an event that happened, but how you live your future is your choice.  If you are a survivor, the physical, mental, and emotional consequences of the injury are now a part of you, but should not be how you allow yourself to be defined.  In fact, it should be embarrassing to define yourself merely as the product of your tragedy — you are so much more.  Blaming rage on my accident allowed me to hide in an addiction, yet this only amplified the anger I claimed to be trying to fix.  It was only after I accepted the flaw of substance abuse as my responsibility that I was truly able to grow.

It’s tempting to praise the above scene — when I made the choice to become sober — as the moment my life turned around, but it was only the first step in a long path that I am still following.  When I made the decision, I had to change friends, locations, and find sources of support for my sober way of life, and this took some time.  The romantic relationship I had been in was over because I had behaved inexcusably — yet circumstance and situation conspired to keep my former parter and I working close together.  She saw me make the decision to deal with my anger issues by staying sober, and as time passed a new, different relationship formed in a manner that allows us both to grow.  That said, it must be recognized that the rejuvenation of a prior relationship is not a good reason to fake responsibility for your behaviors.  Your actions will be able to change only if you want to be a better person, actively make decisions to foster this new life, and are willing to make an infinite commitment to personal growth.  In my situation, I do still occasionally feel fury begin to swell inside, but now I accept that I must be in charge of my anger and seek to calm it with a sober mind.  This struggle with rage and feeling an urge to use drugs will continue all my life, and it may be that these tendencies were amplified by my accident, but now they are a part of me — a PART of me, not the whole of me — and it is my responsibility to ensure they do not take over my life.  Brain injury is no excuse for who I am, because I am alive and that gives me a choice of how I show myself to the world.  My accident happened, but I must allow it to be in my past so that I can flourish as who I am now.

The World Has Brain Injury

The world has brain injury.

I don’t mean this is the literal sense — as far as I know, Gaia isn’t in a coma — but the current epidemic of CoVid19 has hit humanity in a manner that is questioning and dismantling many habits and institutions of modern society.  So, maybe it is not the world that has the injury, but humans that has been stuck hard and will require significant rehabilitation after the virus has been neutralized.  I write this article because I believe this process will in many ways mirror the introspective healing process that occurs after brain injury, and recognizing these similarities will help humanity to find the most beneficial way to move into the future while better preparing for future catastrophic events.  I use a simple method to demonstrate these similarities — taking one stage of recovery at a time, I present what happens when recovering from brain injury and this if followed in the next paragraph by suggestions of the similarities in humanity’s current crisis, suggesting how being aware of these similarities can assist us as we consider the road of recovery that is ahead.

For this comparison, I present the stages of recovery from brain injury as:

1. Initial Stabilization from the injury
2. Personal acknowledgement that an injury happened
3. Recognizing that a change is necessary and implementing new life patterns
4. Finding ways to maintain health

The above list is not taken from medical literature — as I was not able to find any authoritative list that states a set of stages in the introspective recovery process — but this list is created from a path I experienced over the first several years of my recovery from brain injury and I have recognized a similar process in stories I have heard and collected from other brain injury survivors.

Stabilization

First, the initial condition must be stabilized.  In brain injury, this is when a survivor is rushed to the hospital and a medical staff works to ensure that life will continue to the next day.  Thoughts and energies are focused on the immediate, on keeping the injured person breathing and the heart beating.  

In our world situation, stabilization is what’s going on now — the containment, social distancing, medical personal on the front lines of healing the disease, millions of necessary workers taking the risk to ensure that families can have food, electricity, and communication — these people are keeping the heart of humanity beating.  As I write this article, it seems we are approaching the end of this initial stabilization period — perhaps still months away from fully moving to rehabilitation, but it seems that most countries have the initial plans of recovery in place and the panic has somewhat settled — we’re going to live until tomorrow.

Acknowledging the Injury

The next stage is the survivor acknowledging the fact that the injury has irrevocably changed life.  After brain injury, a survivor often wants to move on and forget about it — to put the injury in the rear view mirror and get back to things as before and letting the story become something told to friends — but the brain cannot so casually dismiss such an event.  After brain injury there will be changes — these may be changes of attitude, of emotional patterns, personal preferences, habits, though processes, cognitive and physical skills — the exact combination will be is different for every survivor, but a person experiencing some set of changes is inevitable.  Acknowledging an injury means recognizing that change and learning how to adapt.  In my recovery, an example of a change I have discovered is a tendency for my temper to flair suddenly and quickly burst into an uncontrolled rage — I need to recognize this about myself so that I can be aware when such anger might ignite and quickly put out the fires before anyone gets burned.  If changes caused by brain injury are not recognized and synthesized into one’s life, it will cause harm to the survivor and those emotionally close.  Insisting that “things just need to go back to the way they were before” is a guaranteed cocktail of confusion, frustration, pain, and will quickly lead to disastrous consequences that often result in future injury.

In regard to the world’s current situation, the event of the Coronavirus Pandemic will never be forgotten — as long as there is a hint of humanity that can share history this event will be in the textbooks.  We acknowledge that the event happened — but we also need to recognize the change this is bringing to humanity.  The situation is showing the fragility and underfunding of healthcare and education, the necessity of food and safety services, striping away the false mantel of importance we have granted to so many jobs — and these are just a few of the insights the epidemic is highlighting.  Social systems throughout the world are changing, and while the hope is that many of these changes will be temporary — that once the virus is contained, social systems will return to some relative norm — we cannot simply go back to “how things were before”.  This virus has hit the world hard and we must recognize what can never be the same.

Recognizing Need for Change and Creating New Life Habits

Once the situation has been stabilized and the injury acknowledged, a brain injury survivor must learn to adjust to the physical, cognitive and emotional changes that have occurred.  Adapting to these changes requires that a survivor create new life routines and habits that support the new way of living.  This does not mean that everything must change, but a survivor must be conscious of what habits need to be adjusted — brain injury doesn’t mean you cannot go to the gym, but perhaps you need to adjust your weight routine — it doesn’t mean you cannot see friends anymore, but try going to a coffee shop instead of a bar.  A survivor must approach the alteration of habits with an open mind that considers the reality of the effects of the injury — as discussed above — and create habits that support the new life conditions.  This is best if done with the assistance of a team of medical and personal support persons that can offer suggestions.  It is not an easy process, and some of these changes can go against social instincts that have been developed with a lifetime of repetition — yet recognizing and implementing these changes generally creates fewer frustrations and diminishes the risk of future injury.  A person may need to let go of previous habits, but allowing changes to occur and creating new habits can let a survivor flourish in ways previously never explored — personally, by allowing necessary changes to occur and accepting what must be, I had to give up my dreams of one career, but have found doors that opened to joys never considered prior to my accident.  Being stuck on the idea of everything being the same as before leaves a survivor just that — stuck.  Allowing life and habits to change will create new paths that encourages a survivor to continue forward in the journey of life.

Let’s apply these same ideas to the Coronavirus Pandemic — because if we want humanity to continue into the next century, things gotta change.  The underfunding of social safety systems and the capitalist focus on personal gain as opposed to a collective good are habits that need to be adjusted.  This is not to say we should abandon all capitalist enterprises or that seeking personal gain is bad — a profit driven economy motivates and encourages education, innovation, and creativity — but living in a world where the motivation of money or personal power trumps community, national, and international health has placed humanity in a dangerous situation — the motive of personal gain mixed with patriotic arrogance has exaggerated delays in recognizing and remedying the spread of this virus.  We must find a balance between social welfare the profit motivation.  Notice that now — in the midst of this pandemic — the greatest increase in stability has occurred when states, organizations, and brave individuals put social welfare ahead of immediate personal gain, and it has been this sort outreach that is helping to “flattened the curve”.  The focus on international healing is inspiring, but it does not mean that humanity will not revert to the previous habits of personal gain once this crisis is contained.  If we want to protect ourselves from some future injury of this scale — or worse — we need to embrace a new awareness of the necessity of social safety and education programs.  The habits of the world can change — previous motivations may not work as guides anymore, but by consciously working together humans can find the safest and most rewarding path forward.

Finding Ways to Maintain Health

Maintaining a healthy lifestyle after brain injury is important for a brain injury survivor.  Eating nutritious foods, finding time for some moderate exercise, and surrounding oneself with supportive persons will support to the brain’s healing process.  The logic is simple — if you provide the best upkeep and put the best nutrients into the body, the body will have more energy to heal.  While this correlation is simple to state, it is not always easy to adhere to a healthy food and social diet after TBI — there can be physical limitations, confusion, depression, or any of the other effects from brain injury that can disrupt a plan for good health — but with dedication and by working with a support team, a healthy lifestyle will dramatically improve a survivor’s healing — the mood improves, work quality can become mere consistent, and previous skills are relearned as the brain continues to heal.  It is commonly said that the brain has “two years of optimal recovery”, and after two years you’re stuck with what you’ve still got.  This is false — hogwash.  The body will continue to heal for as long as you let it, and by scheduling and maintaining a healthy lifestyle, a survivor will heal longer and more completely.  The important thing is to create and maintain healthy patterns as soon as possible after the injury.

Creating and maintaining healthy patterns is what all of us — as the nations of the world — must do as we plan our future after the Corona Epidemic.  It is likely that the majority of people in the world will survive this crisis, but it is inevitable that there will be deep and painful wounds that need to be healed — so many deaths, the pain of governments that were slow to react and initially failed citizens, an economy that has been stagnant for months — the aftereffects of this crisis will resonate in the world for years — decades — but we will heal.  Yet we cannot view healing as a temporary state — it is important that we learn from this trauma and establish patterns and policies that support societal growth and health on a global scale — create healthy patterns so we can avoid a future calamity, or at least more adeptly respond when such a catastrophe arrives.

Final Thoughts

These are the parallels I see between the Coronavirus and brain injury.  I do not pretend it is a perfect comparison, and there is overlapping of processes that occurs in the stages of recovery presented in this article — for example, where’s the line between creating new habits and maintaining a healthy lifestyle — but the goal of this article is to encourage a conversation. This is how I anticipate the steps of international recovery that are ahead of us and what I hope governments around the world are considering as we navigate healing from this crisis.  Humanity will be changed by this event — but as with brain injury, change does not mean an end.  Instead, this is a mark on the timeline of humanity when we are forced to examine how we exist in the world — and there is potential in this moment for us accept a change that allows a healthier international community continue a beautiful growth into the infinity of the universe.  Or we can remain stuck in the same patterns and hope another crisis doesn’t hit.  

The choice is ours.

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Thank you for reading this article.  If you agree with it, I encourage you to share it with friends and people who decide policy in your area.  Personally, I will be sharing it with my local and national representatives.  If you disagree with me, I ask you to reply in a post that states your reasoning.  My hope is that a discussion can begin as to how we can protect ourselves and heal from the coronavirus tragedy together.

This article doesn’t present specific plans about recovery, but my intention is to begin researching suggestions of recovery and sharing my personal commentary in this blog.  If you have any suggestions you would like to share, please share them in a link posted as a comment.  Again, I am not trying to preach a “correct way” to recover, but to encourage a reasonable discussion so that we can better find the best recovery together.