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 —

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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.

Seeking Art fom Survivors!

SEEKING ART FROM TBI SURVIVORS!!!

I am seeking artwork for my upcoming book — Who Am I, Now? Reflections on Recovery.  This is a request for paintings, drawings, pictures of statues — any visual art on paper — created by Brain Injury survivors.  I will select works that capture the tone of chapters in the book.


PLEASE NOTE — This is NOT a contest!  I do not have the expertise or desire to “judge” the quality of any work — instead, I will select pieces that I feel best suit the mood of a chapter.  If you are seeking themes or inspiration for your work, the early drafts of chapters are available on this blog.

I cannot offer any money for your work, but every submission will be displayed on the blog, and every person who submits any work will be gifted a FREE ebook copy of the published book (I intend it to be released in September/October of 2020).  Furthermore, if your work is selected for the book and I am able to arrange a printing, you will also be gifted a FREE hardcopy of the book (with your art in it).

Please contact me if you would like to submit any artwork and I will send the appropriate information, or follow the steps and sign the form below.


Thank you!  I look forward to seeing your art!


To submit —

— Email a picture/scan of your artwork to tbilethan@gmail.com in TIFF format
— Please use the highest pixel quality for the digital file you send
— In your email, include your name, date of injury, type of injury, and current location (city, state, country)
— Send back the form below with a scanned copy of your signature



Permisssion form as PDF file

Permission form as .docx file 

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PERMISSION FORM FOR USE OF ART

I understand that the art I have submitted will be displayed publicly on the blog — http://whoaminowreflections.blogspot.com — and may be selected for use in the book Who Am I Now? Reflections on Recovery by Lethan Candlish. 

This artwork is created by me — I have not stolen any other person’s work or ideas in the work I am sharing.




I give Lethan Candlish permission to use this work — with my name attached — at his discretion in his book and I will not seek any moneys for its use.
 
PLEASE CHECK - _____ I have read and understand the above.




Signature 


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Printed Name: 


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