In denial? It might be neurological

I’ve been giving a lot of thought, lately, to the subject of acceptance and denial of TBI-related issues. Denial is a big issue with lots of head injury survivors, and the inability to accurately self-assess can make lasting recovery difficult. It can make us reluctant to do the work required to achieve true recovery, because we simply don’t realize that we need to do the work. It’s not that we’re “in denial” because we’re emotionally ill-equipped to deal with the loss of certain traits we once had. We simply cannot conceive that there actually is something amiss with us. After all, our brains are telling us we’re just fine.

Give Back, Inc. has a good description of aspects of this issue:

The second, and most important, obstacle is the inability to directly perceive the effects of the injury. In traumatic brain injury (TBI), the brain does not feel injured. It rarely hurts or feels strange, and relatively few symptoms are obvious to survivors. Most survivors overlook the errors they make because of the lasting effects of their injuries. When an error gets noticed, most survivors don’t realize that it was caused by their own, defective thinking and self-control. Even when a survivor recognizes the mistake, the injured brain usually serves up excuses that prevent learning about the injury. Serious physical disability is unusual after TBI, but if there are physical symptoms they almost always get recognized. In many cases, survivors also learn that they are forgetful. But most survivors feel sure that their thinking, behavior, personality, and abilities to get things done are unchanged or changed very little, by the injury. Common head injury symptoms like unreliable judgment, undependable follow-through on assignments and tasks, inappropriate behavior toward others, reduced frustration tolerance and self-control, and increased emotionality are usually denied no matter how serious they might be. By failing to recognize that these are permanent problems, survivors learn nothing from the mistakes they make on this basis, repeating the same errors again and again.

A lot of people tend to believe that denial of illness is purely a psychological defense mechanism, and in order to get better, you just have to emotionally come to grips with the stark reality of your life. Certainly, the psycho-emotional aspects do play into the equation. But lacking awareness of deficits has pronounced neurological aspects, which make life interesting enough, even without the psychological aspects. Things like goal-setting and basic day-to-day logistics get that much more interesting, when your brain is telling you, “Don’t worry – you’re fine!” while it’s off doing its own thing.

And that’s kind of where I’ve been, on and off, for the past month or so. It’s where I have been for about as long as I can remember, in fact. But telling myself that I’ve messed up because I refuse to accept my limitations falls short of the whole truth. I’m more than happy to adapt to things I need to change in my life — but my broken brain keeps telling me it’s fine… just fine.

Well, I’ve had an incredibly long week, and I’m completely bushed. But for what it’s worth, there’s my thought for the day.

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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.

7 thoughts on “In denial? It might be neurological”

  1. BB –

    You are on target here, I have started several posts to you about this but get sidetracked. There is a known physiological problem that occurs, usually in severe brain injuries, called impaired self awareness. This is damage to a localized function in the brain that provides a person with recognition of self and self behaviors. However this is not what you are referring to. This type of impairment (ISA it is called) is very difficult to recover from. However what you describe is a characteristic of many TBI folks I know – this lack of ability to ‘see’ what has changed, or when they are about to step into the snake pit.

    Sometimes in retrospect they can see their behaviors. My theory – for what its worth – is that enough of your brain is still functioning on ‘old you’ processing and goes merrily along. However you have ‘recovered’ functionality in some damaged spots – perhaps rerouting, perhaps transferring to nearby neurons – and these back up routes may act differently – perhaps slower etc. So you may miss something, lose track etc. As if that is not enough another common area of damage is the frontal lobes – and the frontal lobes provide feedback to ‘self’ on how you are doing, if you are making sense, acting appropriately, being risky etc. If the feedback mechanism is damaged you may not have the awareness to self correct – so you are just a little off, maybe too talkative or very impulsive.

    In a way however these behaviors are similar to what you see in very young children; and they come to learn through making mistakes, self-correction and hopefully guidance from family, teachers etc. For a grown tbi survivor however it’s not so simple, because the mistakes are bigger and more serious – people are less forgiving as well and there are often no ‘guides’ you can trust. So you stumble around a lot.

    This is why your neuropsych is so cautious – because he/she understands that mTBI folks do lack an understanding of who they are now -cognitively, energy wise, tolerance wise etc – AND yet for a variety of reasons they have a great need to prove they are perfectly ok, better than ok, they can conquer the world.

    Self and self awareness – I would write a book about this if I had the time.

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  2. Classifying some self awareness into BTBI (Before TBI) and ATBI (After TBI) and making comparisons has been helpful to me. Normally I don’t cotton much to comparisons. Even as a math major at college I did not like statistics. After all, who ever really knows what is being compared to what by whom.

    BTBI (Before TBI) I was an active athlete, mountaineer, college coach. In my spare time. ROFL. No wonder I ended up hitting my head against something. LOL.

    ATBI (After TBI) it took me a long time to engage physical therapy and to set realistic physical goals seriously. Sure, climbing a 6,000+ meter mountain is extravagant, but according to my physiatrist and PT team, realistic. It gives me something to work toward. With great gusto.

    ATBI (After TBI) I realized I can no longer visualize my body parts inside my brain. This is a big deal for an athlete. Any serious athlete realizes how vital visualization is to their physical performance. When a PT or assistant wants me to do something, they must show me with their body.

    I am not a voyeur. Well, maybe a little. Who doesn’t like looking at a nice body. I need to look, even if I have seen before.

    The reason knowing this helps me is this. If my capacity for visualizing my physical self is so greatly diminished, how much more diminished, I wonder, is my capacity to visualize my INVISIBLE form. And there you have it.

    I wrassel every day with visualizing my physical form. I would win more superficial matches if it were all vanity. Except like many visible things that are not things, the visible reaches into the invisible. Into the core of my being. Into my self awareness of me.

    I am not obsessed with exercise (okay, maybe a little). I realize that I can work on the visible. My progress here follows itself into the realm of the invisible. This is my ‘working’ theory. You may borrow it if it is helpful.

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  3. I often talk of BTA and ATA (before the accident and after the accident).
    I agree comparisons are difficult to make – I didn’t take inventory or parse out the little particulars before the accident – and after the accident I sometimes felt that I couldn’t cough without it being related somehow to TBI. All that said there were some things that I know were injured that I sorely missed – and internal visualization is one of them.

    However – it has slowly, slowly, slowly returned to some degree. It’s not constantly available and still frustrating (I had a wonderful sense of direction and could map a place in my mind after seeing it once, now when people ask me for directions I feel like a complete idiot). I try to work on it, I try to practice visualization. I try to build things in my head. This is a very important skill for me in many ways so its loss is hard. It’s 5 years now and I have recently had some significant improvement in this.

    Your comment about the invisible form may be correct – it is hard to ‘see’ ourselves as we act if we struggle to hold images of concrete objects in our head. In both cases it is about feedback loops to self correct – whether it is how you are acting or how you are bending your leg or using your foot. Another way to help improve your visualization skills is through touch – touch someone’s arm or leg or whatever as they are making a move – and with eyes closed and/or open create a touch memory. Touch memory is very resilient and very useful. Using two modalities for memory increases the likelihood that the memory or skill will be retained.

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  4. Interesting –

    It’s hard for me to conceptualize what I might be like without the effects of TBI, because I’ve been having concussions every few years on a regular basis since I was about 4 years old. I guess I’m in kind of an opposite situation from you — I always assumed that my tendency to mess things up, not be able to follow people, get distracted and lose my way, forget things, have meltdowns, and generally have to muddle through life, were because I was defective. I thought it was just ME. Then, lo and behold, I learn about TBI, I find a competent neuropsych who’s able to give me some answers, and suddenly my innate value looks a whole lot better than it did, just a few years ago.

    The visualization piece is tricky. It’s complicated by confabulation. I could SWEAR that I’ve got something clear, it feels like it’s clear, and I’m 100% convinced that I’m 100% right about it. Then, I find out that the directions I had in my head were ALL WRONG, and I have to start from scratch.

    But then, I’ll have an experience where I actually AM right, but I didn’t feel like I was. Or, I felt like I was, but I recognized that 100% certainty that can be so deceptive… but I still turn out to be right.

    It’s very frustrating. Especially for my spouse, who has to ride in the car with me 😉

    Touch is … well, touchy… with me. Sometimes people take it the wrong way, when I reach out to them. So, I generally don’t do that. Also, I sometimes have trouble gauging how hard or soft to touch, and I accidentally hurt people. Another reason not to use touch. But if it works for you — great. I can see how that would be helpful to you.

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  5. Going through some old blogs on this site. I come here when I feel as if for me to survive in this world, I can’t say much especially about how tbi took my life to people who not only don’t understand but tell me that I chose this and we sow what we … One guy recently said I chose this in a past life. I like that guy but be around him.. no way. And I know that I need to be humble and not let my frustration come to anger which it rarely has in my life. But I don’t feel that I choose to be nice right now. The apathy which has been a huge problem along with fatigue on and off since 91′ Fatigue and as M was saying in his comment above, it’s this lack of self awareness. The awareness of self in a meaningful way to me is very elusive but at least I know how to behave like above remembering not to be touchy, but general well-received behavior based on effortful self-monitoring can come back and has again since the latest mTBI but it takes constant monitoring of self. So I don’t care as much anymore and just want to be left alone. I wrote an old sibling who starts on me not making a plan to better my life while he chugs beer and talks of poker- which by the way I’m not so sure was not a better way to handle Mtbi or atleast It is very understandable. But here I am in 2014 just like in 91′ believing that if only I don’t drink beer and do the right things that my life will be better. So he got preaching about my bad choices and women etc and I wrote back and asked him if he goes to church or the casino more and who has he reached to with compassion and hows he doing with the 40 ouncers. His preaching I put with because I was living crappy life-style in some ways. But I have been doing the right things for the most part for years now despite my brain issues. in one way it was low of me because he suffers so, but i’m too old now and too wornout to accept hypocrites who tell me i’m a kind man as if it were a bad thing and the reason i’m stupid at times and can’t quite make a life. The one person I always rallied for I could not even call back the other day. Tears flow daily for me, but I can’t take my grief to her and I can’t go in teacher mode for much time and listen and remember her stories and encourage her like I did for so many years. And the more I get back upstairs, the more I kmow I should have stayed where they looked in confusion at you and called you with good humor, “quilombro” a big mind mess but a great heart who had wisdom to contribute, I have much to say but I’m tired, pissed and unfortunately nobody to blame except myself and even that is amiss too. Yes the uneducated, not on a mission, street wise people would take many stares at me and say in never a mean way, there’s just something a little off about you. Unlike the docs in the end telling me in authority that I just didn’t add up as if I were this plotting liar. and me choosing to go with their assessments because it sometime easier to see yourself as a bad apple than a nice, damaged one. My name is jhon. I live on the second floor if you hear a crying scream just don’t ask me why. Some say I’m crazy but I just don’t care anymore. It’s not like my life got so bad as others think because I have no material or worldly power or career to save face. It’s I’m tired.

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