“Nobody explained my brain injury to me”

lightning striking inside a headJust by total chance, a week or so ago, I found myself talking to someone who had a stroke in 2007. Unless they’d mentioned it, I never would have noticed. They’d had four months of recovery, then they got back into their life. And while we didn’t talk that long about it, I got the impression that they hadn’t gotten any help with really understanding their situation after their stroke.

When they ran into their neurologist at the hospital, a few months later, they got a tip about how certain things they were doing were just not very helpful at all. Things like beating themselves up, because they weren’t doing a good job at something… things like getting angry and upset about stuff going wrong in ways that were directly related to their stroke… The neurologist gave them some insight into what was happening with them, and a better way to deal with it.

It was good that they chanced upon their neuro. It’s just too bad they didn’t get that insight sooner, so they could relieve some of their suffering — maybe even prevent it.

But they were amazed that I’d been able to find help with my own brain injury. They asked a number of questions about how I recovered, how I got myself back, how I retrained myself in certain ways. They seemed downright amazed, that my path for the last 8 years had even happened.

And it left me both happy and grateful that I found this path… and sad and frustrated that they hadn’t — that thousands upon thousands… maybe even millions upon millions of people hadn’t.

Here’s the thing that gets me about brain injury recovery — there is so much that’s known, there are so many tips and resources and a wealth of information available about what happens to the personality when the brain is injured. But there doesn’t seem to be any uniform or standard way of communicating that to people. And so, we suffer. We really, really suffer. And it’s not just the brain-injured folks who suffer — everyone around us, especially our loved ones and those who are a regular part of our lives, joins us on the big proverbial float in our Pain Parade.

It’s actually pretty bizarre, if you think about it. TBI happens 1.7 million times a year in this country, alone.  Actually, according to the CDC,

In 2010, about 2.5 million emergency department (ED) visits, hospitalizations, or deaths were associated with TBI—either alone or in combination with other injuries—in the United States.

So, the 1.7 million number (which has been used for years, now) actually looks low. Add to that the numbers for stroke (nearly 800,000 Americans have a stroke each year, and 130,000 of them die from it), and other kinds of acquired brain injury (anoxic, for example, from losing oxygen to your brain), and you’ve got in the neighborhood of 3+ million Americans who have experienced a brain injury.

That’s just in this country. And that’s not counting all their family members, co-workers, community, and extended social connections.

Brain injury is a thing. It’s a big thing. And yet, somehow, we can’t figure out to tell people who’ve just had a brain injury, what’s happened to them, what they might experience as a result, and how they can take steps to recover?

This makes no sense.

And it makes me angry. Because a lot of people are suffering needlessly. Really, really needlessly. Just having the most basic information about brain injury helps so much. Finding out what happens during concussion or stroke — and then things to NOT DO (which medical professionals know about)… as well as WHAT TO DO — many of those things are simple and straightforward, and they all help a person make sense of their situation and chart a path forward.

Maybe it’s professional caution. Doctors don’t always know what to expect, and in any case, every brain injury is different, so every type of recovery is going to be a little different. Or maybe it’s lack of time. Or maybe it’s because doctors delegate education and training to rehab and therapy folks, who presumedly have a more extended working relationship with brain injury survivors. Maybe they want to limit their liability, in case their promises don’t come true.

Regardless of why that is, the fact remains, there’s a huge, gaping hole in the support of brain injury survivors — TBI, stroke, ABI, you name it — that seems only to be filled by people in the business of doing so. And from where I’m sitting, that’s a huge problem, because the profit motive becomes the most important thing. First and foremost, if you have to make money to survive, you’re going to focus on making money. And then you end up making a lot of choices that you wouldn’t necessary make (or have to make) otherwise.

So, the care you provide is necessarily compromised.

And the slippery slide begins… and continues.

Where does that leave the survivors? Or the people around them who struggle to understand what’s happening? Where does that leave the wider community who has lost the full participation of someone who is important to others, in large or small ways?

It leaves us nowhere. In no-mans-land. In limbo. Uncertain. Without a clue. And eventually, without hope.

A lot of lives are irreparably trashed, because of lack of support — even the most basic explanation of what’s happening… simply because someone couldn’t figure out how to explain a brain injury to the survivor, as well as to their immediate circle of family and friends.

How ironic, that advertisers can figure out how to explain and sell the most inane crap to just about anybody with a pulse, but nobody can figure out how to explain something as important as the logistics of brain injury to the people who desperately need to  know.

What a waste. What an incredible waste.

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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.

18 thoughts on ““Nobody explained my brain injury to me””

  1. I know that I am always told Everyone has their own Journey(hate that damn word!) many people have no idea the help and understanding that’s out there. It’s up to the good advocates out there like us to lead the way……nice work!

    Liked by 1 person

  2. Thanks – yep, we have to keep talking about this stuff. I just remember how lost and confused I was, when I was first recovering. I found my way by chance – and by being stubborn. Not everyone can do the same, and that’s a crime, in my estimation.

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  3. My mom passed out and fell onto a concrete floor in 1968. Her head slammed against the concrete so hard that it sounded like a wrecking ball. Because of it, she lost the hearing in her right ear. No one told her a thing about recovery and everyone around her expected her to be the same person she once was. She told me that it took her years to be able to walk to the mail box on the corner, mail a letter, and walk back home without forgetting one of those steps. I can’t imagine the mental pain she felt.

    Liked by 1 person

  4. When we injure our brain, we injure an important part of our body.  Our brains control our ability to think, talk, move, and breathe. In addition to being responsible for our senses, emotions, memory, and personality, our brain allows every part of our body to function even when we’re sleeping.

    The brain can be hijacked by the Amygdala in the limbic system after our brain injuries as outlined in this source: 

    Wikipedia: Daniel Goleman speaks about Amygdala hiijacking –  Amygdala hijack is a term coined by Daniel Goleman in his 1996 book Emotional Intelligence: Why It Can Matter More Than IQ.[1] Drawing on the work of Joseph E. LeDoux, Goleman uses the term to describe emotional responses from people which are immediate and overwhelming, and out of measure with the actual stimulus because it has triggered a much more significant emotional threat.[2]  From the thalamus, a part of the stimulus goes directly to the amygdala while another part is sent to the neocortex or “thinking brain”. If the amygdala perceives a match to the stimulus, i.e., if the record of experiences in the hippocampus tells the amygdala that it is a fight, flight or freeze situation, then the amygdala triggers the HPA (hypothalamic-pituitary-adrenal) axis and hijacks the rational brain. This emotional brain activity processes information milliseconds earlier than the rational brain, so in case of a match, the amygdala acts before any possible direction from the neocortex can be received. If, however, the amygdala does not find any match to the stimulus received with its recorded threatening situations, then it acts according to the directions received from the neo-cortex. When the amygdala perceives a threat, it can lead that person to react irrationally and destructively.[3]

    Goleman states that “[e]motions make us pay attention right now — this is urgent – and gives us an immediate action plan without having to think twice. The emotional component evolved very early: Do I eat it, or does it eat me?” The emotional response “can take over the rest of the brain in a millisecond if threatened.”[4]HYPERLINK “http://en.wikipedia.org/wiki/Amygdala_hijack”[5] An amygdala hijack exhibits three signs: strong emotional reaction, sudden onset, and post-episode realization if the reaction was inappropriate.[4]

    Goleman later emphasized that “self-control is crucial …when facing someone who is in the throes of an amygdala hijack”[6] so as to avoid a complementary hijacking – whether in work situations, or in private life. Thus for example ‘one key marital competence is for partners to learn to soothe their own distressed feelings…nothing gets resolved positively when husband or wife is in the midst of an emotional hijacking.'[7] The danger is that “when our partner becomes, in effect, our enemy, we are in the grip of an ‘amygdala hijack’ in which our emotional memory, lodged in the limbic center of our brain, rules our reactions without the benefit of logic or reason…which causes our bodies to go into a ‘fight or flight’ response.”[8].

    Understanding the role stress plays on triggering the limbic system fight or flight response is critical for people to learn about after our brain injuries. Brain injuries are often described as either traumatic or acquired based on the cause of the injury.

    Traumatic brain injury (TBI) is an insult to the brain, not of a degenerative or congenital nature, which is caused by an external physical force that may produce a diminished or altered state of consciousness, and results in an impairment of cognitive abilities or physical functioning. It can also result in the disturbance of behavioral or emotional functioning.

    A TBI can affect our ability to, think and solve problems, move our body and speak, and control our behavior, emotions, and reactions.
    Acquired brain injuries are caused by many medical conditions, including strokes, encephalitis, aneurysms, anoxia (lack of oxygen during surgery, drug overdose, or near drowning), metabolic disorders, meningitis, and brain tumors.

    Although the causes of brain injury differs, the effects of these injuries on a person’s life are quite similar.

    This is why understanding about the consequences of stress on the limbic system after a brain injury is so important.

    Understanding the Sympathetic Nervous System in the brain injury recovery process is seldom talked about to us after our brain injuires by doctors or health care professionals because they only treat the symptoms.

    The following information is critical to understand and has great value for people with brain injuries and their families to understand.
    The Sympathetic Nervous System – “limbic system is autonomic” and creates many problems people with brain injuries face during our recovery process. If people with brain injuries don’t understand the Sympathetic Nervous System and how it works – our family members and friends react to our emotions and unwittingly create more stress for us for us to deal with.  

    This stress triggers the “limbic system’s fight or flight response” into action.

    We do not have any control over what we are reacting to because of the stress that is being generated by our emotions shuts down the thinking part of our brain – pre-frontal cortex.  

    What happens next is – we react and they react, the stress builds and we lose control, get angry and have emotional meltdowns or worse. 
    During any stressful situation our loved ones react to our “actions” and we react to theirs – which increases our stress during those hard and difficult times.

    We (family members/ people with brain injuries and friends) get caught up in a reactionary mode instead of being proactive to keep the limbic system in check.

    If we set up daily routines, have structure and find purpose and meaning in our lives we have a better chance of controlling stress and the situations that trigger the limbic system fight or flight response. 

    If we do not control the stress, our families and friends will constantly be reacting to issues we have little control over.  Learning relaxation techniques like mindfulness-based stress reduction can help to stay calm so the limbic system is managed.

    Mindfulness-based stress reduction can help with this and I encourage you to look this up on the internet because there is a lot to learn about this tool that can help us rebuild or lives after a brain injury.

    After our brain injuries “emotional outbursts, anger, and memory issues” are an expression of the problems caused by our limbic system fight or flight response under stress. By understanding how our emotions can get out of control we will have a better understanding of why we react to things that don’t make any sense to us.

    There is a reason for all this madness and by learning the role the sympathetic nervous system plays in our recovery, the better chance we have to live full and rewarding lives again – after our brain injuries!

    Liked by 1 person

  5. I felt anger – and my daughter did too – about the lack of help received from the school post-injury for her. The teachers all knew her personality had changed; and quite significantly, her processing speed decelerated from the top 5% to the lowest 5%. And all the administration had to say over and over was that they didn’t see anything different and every symptom we mentioned they attributed it to puberty or else being the typical experience of peers her age. It’s no wonder we had to leave the school to actually meet her needs. She is now slightly below average or average in her processing speed, but that is because we avoid overstimulation from the environment — she only takes one regular classroom subject and all the rest are done at home. As a result, she is a grade ahead in most curriculum offered. But it is so maddening that the school not only allowed her to get injured, then denied it ever had a negative impact. I feel sad for the kids whose parents do not have the time or resources as we did for finding a variety of tools to assist in the recovery. I talk about it as often as I can with others who have a child that gets a concussion in sports. Basically, I acknowledge that I can’t help everyone in our community who gets a brain injury, but I can definitely be a resource and a support system for the ones that appear before me or that I learn about so I can reach out. Brain injury survivors and their caregivers are amazing and I think we all need one another to keep on with hope and optimal recovery.

    Liked by 1 person

  6. Although it’s unfortunate that survivors can’t be given a manual or guide to help them with their recovery, but each case really is that different. What works for one patient will not work for another. We’re all individuals so the injury affects us each differently. On top of that, how we receive and process information in our brains that have been affected is also different. Each one of us is a “test patient” for the staff who help us.

    Liked by 1 person

  7. Since my daughter suffered a severe concussion last December, she has been really challenged by anxiety and embarrassment. She has pretty much refused to talk about her difficulties, because her cognitive skills have historically been her greatest asset (BA with 4.25 GPA). Now, she has shut down rather dramatically. It’s a pity because she really thrived in academia. While she can read, she has problems with “reading for comprehension”, which was always her forte. She seems more willing now to lending me an ear, perhaps because I shared with her that a close friend of mine with a severe TBI, also reported that she made her living worse by being too ashamed to let her family or other friends know of her difficulties. I am trying to convince my daughter to get some testing done, so that at the very least, she will have an “objective correlative” out there. She still has an open insurance claim against the driver of the car that hit her.

    And you are absolutely correct in this piece. It’s very hard to find medical professionals who really know much about recovery, or offer any cogent advise to people with brain injury.

    Once again, thanks for all you do!

    Liked by 2 people

  8. Same thing happened to my mom when she had a stroke in her 40s – no doctor ever told her she had a brain injury. She had a stroke and the rehab she did for a few months was it. It wasn’t until my brain injury that we started on a path of discovering together what brain injuries do to us and to help cope and deal with it. It’s really sad how often this happens.

    Liked by 1 person

  9. Thank you so much. I really appreciate it. I have been working steadily at this, and my new year’s resolution for 2017 is to be more systematic about what I post here. There is such a need – for sure – and I know what it’s like to be so lost and confused, and not have access to help. That’s why I’m here – to help others who are now in the same situation I was, 10 years ago.

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  10. It’s true. We are all very different. The one thing we have in common, is our humanity – and our human nature to need reassurance and information that we can use to make sense out of our experience. Making sense of things, and understanding our human worth, is something we all have in common – no matter how different our injuries are.

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  11. Sorry to hear about your daughter. This is very, very common, and I can relate to a lot of what you said about her situation.

    It can be very daunting to be in a suddenly needy position, and it’s hard to let others see that – especially when you’re accustomed to being “alpha”.

    I lost the ability to read for 2 years, after my TBI in 2oo4, and I re-trained myself to remember and comprehend what I was reading, by studying research papers. They are perfect for “brainiacs” who want to rehab their reading and comprehension. You find a paper that’s fascinating to you – Google Scholar has a lot of great material. You read the Abstract… then you work up to reading the Abstract and then the Conclusion/Discussion section after that… then you read both the Abstract and the Discussion, and you read the middle section of the paper, to see if you can remember what the Abstract and Discussion were all about.

    I have found this helps in a number of ways. First, it helped me better understand my brain injury. Second, it gave me something to read that fascinated me and held my attention. Third, it gave me enjoyable exercises to really boost my confidence along with my knowledge and growing reading/remembering skills.

    It really was a win-win. I think your daughter could really benefit from something like that. It’s a lot of fun, and it leaves you feeling smarter and better than before.

    Now, mind you, it took me nearly 10 years to build back to a place where I was comfortable, but honestly, the journey was worth it. And my situation might have been much worse than your daughter’s, because of all the concussions I had in the past (about 8 other ones, that I can remember). So, she might benefit sooner.

    Best of luck with that — TBI recovery isn’t all bad. We just have to figure out how to make things work for us. But it sounds like your daughter is pretty danged smart, so I’m sure she’ll find a way. She just needs to know she’s not alone.

    Thanks for writing, and good luck.

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  12. It is maddening, isn’t it? It’s tough, when there are no reliable resources out there — and the “powers that be” are pretending none of it happened… or if it did happen, it doesn’t matter.

    Thanks for doing what you do.

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