Not giving people hope after brain injury is just plain wrong

picture of a "blank" brain surrounded with electrity
Anything can happen – our brains always change

It’s wrong, wrong, wrong.

And it’s unethical.

Who has the right to deny brain injury survivors hope?

Now, granted, it makes no sense to set high expectations of a fast recovery. Getting back in the game within days after a concussion or mild TBI is not only unrealistic — it’s dangerous. We know about the biochemical cascade that happens in brain injury / concussion. We know that it takes weeks for the cells just to clear out the gunk that shouldn’t be there. We know that returning to work or play can have lasting repercussions. And we know that the brain needs time to normalize.

But if you take a measured approach that’s common sense and gives the brain time and opportunity to recover, progress is possible. In fact, it’s probable. “Progress” looks different for every single person, absolutely. And some abilities may never come back 100% — while other abilities that were never there before may emerge.

It’s wrong to set expectations that you cannot go back to having a full and rich life after a brain injury. We need to adapt, certainly, and we need to be absolutely honest about ourselves and where we fall short AND where we are getting strong, so we can continue to improve. But even if you have to adapt to some pretty significant issues, you can still build back a full and rich life of your own. A life to live. A life of purpose and meaning and a sense of belonging to something bigger than yourself.

My big argument with how I hear people talking about brain injury recovery and rehab, is that while they may be technically accurate about how the brain functions, they’re missing the biggest piece of the whole puzzle — the effect of brain injury on the person who’s been injured. The state of the human spirit, the Sense-Of-Self… that’s ignored. Yes, there are approaches to retraining through occupational therapy, speech therapy… a whole lot of therapies. And regaining your abilities, to whatever degree, is so important to restoring every bit of life you can experience.

But for so many of us, the real injury is what happens to our soul — our spirit — the part of us that makes us US. The part of us we recognize, that person we have come to know over a lifetime… The person whom we — and all our friends, family, co-workers — are comfortable living and interacting with… It’s the hurt to that part of us — our Self, our Sense-Of-Self — that is the greatest injury of all.

But does that ever get addressed? Maybe with people of faith who have a religious practice to turn to. Maybe with people who have a spiritual or meditation foundation. The thing is, brain injury can seriously disrupt that for us. I, for example, went from being a very “spiritually connected” individual who had a constant sense of being connected to everything, to having no religious or spiritual sense at all… and not even being able to fathom why anyone would. On the other hand, some people become very religious/spiritual after a brain injury. So, spiritual aspects can be tricky, and unreliable.

Religion and spiritual practice can do a pretty good job of helping with a loss of fundamental Sense-Of-Self. Especially with their rituals and routines. But not everybody has that to rely on. And not everybody can relate. That leaves a massive gaping hole in the puzzle of brain injury recovery that I haven’t seen addressed in a systematic, deliberate fashion. Here and there, we’ve got studies and papers about the subjective experience of brain injury. But how do you compose a research paper on the Self? How indeed?

But it’s so, so important. And that’s what sets brain injury apart from other life-altering experiences. All those other life changes we go through … the lost jobs, the changes in fortune, the losses and wins, the inevitable shifts in our situation brought about by the march of time and life being what it is… unless we’re brain-injured when those changes happen, we can face the uphill climb before us as who we know ourselves to be, and we can fully participate in those changes with at least some confidence that we can make it through. Because we recognize ourselves. We know what to expect from ourselves. And when we have reactions to difficult things happening, they’re predictable, familiar, and they reinforce who we know ourselves to be.

Brain injury, on the other hand… that’s such a tough one, because at the same time that our circumstances have changed, our brains have changed, our personalities have shifted. And even the smallest alteration in how we experience things, how we react, how we understand our place and abilities in any given situation, can confuse and disorient us… sending us into a fight-flight tailspin that can take us out — along with everyone and everything around us. Rage erupts. Tears. Frustration. We throw things, break things, attack. Because we’re being attacked — or so it feels. Our very existence is in danger. Because we don’t know who we are.

It doesn’t just happen overnight, either. It can, certainly, but the real damage is cumulative. It builds up over time. One confusion after another, after another… one unexpected mess-up after another, after another… one missed cue, missed clue, misspoken word, misunderstood statement after another, after another after another… We can get to a point where we have no idea who we are, and we don’t know how to even begin to find that out again. And as our friends and family and trusted others become hopelessly confused and alienated and slowly drift away from us… weeks, months, years on down the line… we end up alone, confused, and often unable to understand why.

This is what comes to mind for me, these days, as I navigate all kinds of changes at work and at home. My job is not secure. Or maybe it is. I don’t know. Supposedly, they’re going to lay off thousands, when the time comes. Will I be one of those thousands? If it turns out great for me, due to this pending merger, then great. But I have no way of knowing if that’s what’s going to happen. I don’t even know if I want that to happen. I’m tired, to be honest. I’m tired of being positive and hopeful and pro-active and a team player. I really just want to remove myself from the world, curl up in my dark cave, sleep, and lick the wounds I got from going tooth-and-nail at the world.

But I can’t. That’s not like me, and I know it. After years and years of being confused and disoriented and turned around, I actually have rebuilt a durable, solid, predictable understanding of myself. I have a renewed Sense-Of-Self, like never before. This sense of knowing myself actually feels brand new for me, even though I used to be pretty darned sure of who I was, before I fell down those stairs and hit my head in 2004. And some days I don’t trust it. Even the feeling of familiarity feels unfamiliar to me – if that makes any sense.

Still and all, I’m willing to live with that unfamiliar familiarity. Because I’m getting used to it. And I recognize my reactions to situations that arise, even if they are confusing. I’ve gotten familiar with my confusion. I’ve gotten used to my disorientation. And I know what to do about it. For me, nowadays, brain injury recovery is not so much about having everything be the way it used to be (I used to feel that way), rather, it’s about developing the skills I need to just deal with whatever comes up, when it comes up.

Because it will.

The question is, will I be able to deal with it all?

After all these years of working at it, my answer is YES.

That gives me hope — and a whole lot of it. I hope it does for you, too.

 

 

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Author: brokenbrilliant

I am a long-term multiple (mild) Traumatic Brain Injury (mTBI or TBI) survivor who experienced assaults, falls, car accidents, sports-related injuries in the 1960s, '70s, '80s, and '90s. My last mild TBI was in 2004, but it was definitely the worst of the lot. I never received medical treatment for my injuries, some of which were sports injuries (and you have to get back in the game!), but I have been living very successfully with cognitive/behavioral (social, emotional, functional) symptoms and complications since I was a young kid. I’ve done it so well, in fact, that virtually nobody knows that I sustained those injuries… and the folks who do know, haven’t fully realized just how it’s impacted my life. It has impacted my life, however. In serious and debilitating ways. I’m coming out from behind the shields I’ve put up, in hopes of successfully addressing my own (invisible) challenges and helping others to see that sustaining a TBI is not the end of the world, and they can, in fact, live happy, fulfilled, productive lives in spite of it all.

8 thoughts on “Not giving people hope after brain injury is just plain wrong”

  1. Back in the day when I was on the board of the National Head Injury Foundation, I was tald a couple times from providers that when I talked about my recovery that I was giving other people with brain injuries “false hope”. I never could understand this becuase unless people have hope for a better day they will give up and live in misery.

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  2. Yah. It’s odd. I think they may have a different definition of “hope” than we do. And in any case, why — if they can see how you’re doing — would they assume that others couldn’t get there, too? There’s so much misinformation, so many assumptions… the problem being, as I see it, that people don’t understand the actual nature of brain injury, and they don’t fully appreciate the adaptive qualities of the brain. It’s they who are “false”, not us. They need to skill up. For everyone’s sake.

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  3. I never could understand their logic? In 1987, I also talked about how stress tiggers the fight or flight response that we have to deal with after our brian injuries. I’ve sent you info on this before – I think?
    This information also fell on deaf ears and was what got me involved in calling for the congressional investigation of the head injury rehabilitation indudtry that led to the FBI raids on New Medico and other crooked providers – Rebound, Healthsouth, Neurocare, Tangram,
    Violence and ‘confabulation’ – The Great Brain Injury Scam …
    http://www.freedommag.org/english/vol30i2/page09.htm
    Violence and “confabulation” … concerned that the brain injury rehab … with the principals of the Brain Injury Association, including Tangram’s …

    This history has been told and is the primary reason why I’ve been black balled and have a bad name within the industry. What pisses me off is that if they would have investigated what I was saying about stress triggering the limbic system fight or flight response many of the vets with brain injuries and PTSD wouldn’t be committing suicide.

    Sure wish I would have had these YouTubes back them!
    The Brain is in Constant Conflict https://youtu.be/kg-HGtMKzKQ
    Over Coming Addiction: https://youtu.be/ymNaZHEqirs
    The Amygdala Hijack https://youtu.be/YM3cXZ7CFls
    Understanding Trauma: How Stress and Trauma Cause Chronic Condition Pain, Anxiety, Depression & PTSD https://youtu.be/byQBP7fq5vQHooked
    How Stress Affects Your Brain: https://youtu.be/WuyPuH9ojCE

    These are just a small sample of what I’m using inm my brain injury awareness groups at the treatment and detox centers here. I also just started two groups for men and women at the MCkinley County Detention Center, DWI Program. What is cool about this is it’s having a great response from the people in treatment because many have had undiagnosed brain injuries. They have to know what’s going on between their ears before they can start doing something about the consequenses of the limbic system fight or flight response. I really think this is what we call a “brain injury” and the word should be spread far and wide! Great to hear from you and keep up the good work. Your information is very useful and inspirational for those of us with brain injuries and our families! All my best!!!!

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  4. Thanks very much – and thanks for that great info. I’m going to post those videos. It seems very (ridiculously) basic to me, that fight-flight is a major component in prolonging / preventing recovery — as well as making everyone around BI folks uncomfortable (and sometimes unsafe). I know I was very unsafe to be around at home, for a while. It wasn’t fun for anyone. We’ve known for a long time that prolonged stress and fight-flight impedes learning and flexible thinking, and that over time, it erodes the ability of the brain to learn and adapt. That’s the sort of info that needs to get out there, especially online and through social media where people often look for answers, when the experts have come up short.

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  5. Thank you for your kind words and support. People with brain injuries need to know what’s going on between our ears before we can change from a reactionary mode to a pro-active way of solving our problems instead of just living with them. We need to solve the problem instead of just treating the symptoms. Controlling stress so the limbic system doesn’t take over is the first step. This takes hard work and practice but it can be done. The road to recovery begins with us and nobody else. Controlling stress, eating nutritious foods, getting enough sleep, taking naps, getting a lot of exercise, staying cool, calm and collected under stressful times are the answers to improving our quality of life. This is not easy and will take hard work and self-determination to change our way of thinking and regain the hope it takes for a better day.

    Liked by 1 person

  6. You’re very welcome. And thank you, as well. It certainly is hard work. And it takes time… a lot of time. Not everyone can do it, but a heck of a lot more people can do it, than we are typically led to believe. Like anything worthwhile, it takes persistence, dedication, and honesty. And it all pays off, in the end.

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