Growing up with TBI – The Confabulation Kid

Looking back on my life and comparing notes with others, I realize more and more how much my experience has been impacted by the TBI’s I experienced. I was a pretty wild child — hard to handle and harder to discipline. I tried to be a good kid, for the most part, but I got turned around a lot, and it didn’t work in my favor.

I had real difficulties with keeping facts straight — I thought I had things right, but I was turned around and/or missing vital pieces of information. And in the process, I often looked like I was making things up to get attention or just plain lying.

Head injuries sometimes result in a phenomenon called Confabulationthe formation of false memories, perceptions, or beliefs about the self or the environment as a result of neurological or psychological dysfunction. When it is a matter of memory, confabulation is the confusion of imagination with memory, or the confused application of true memories.

I couldn’t tell jokes to save my life. I would usually forget the punchline, or I’d get the joke all turned around. I would get mixed up in the middle of telling long stories, but I wouldn’t realize it, and my brain would fill in the blanks, itself, so that each time I told the story it was a little different — but I didn’t realize it. In some cases, I actually believed that the inaccurate details I was providing were very true.

I have very clear memories of my parents questioning me over and over about the details of a story I just told them, but I would get confused, the more they questioned me, and they would end up — gently or brusquely — telling me that I wasn’t supposed to fib or lie. I wasn’t intentionally lying. In fact, I had no awareness that the tale I was telling was anything other than the truth. But I came across as an intentional “fabulist” instead of a confabulating kid.

I also had a perception of myself as being really good at sports, when I was little. But I was actually very uncoordinated and klutzy, and I was often picked last — or almost last — at schoolyard games. For some reason, this didn’t sink in, and I was able to convince myself that I was very, very good at the sports my other siblings found easy to play. I wanted so much to be good at sports, to be part of things. Both my parents were athletic and active, and I wanted to be, too. All the other kids could kick the ball in kickball… why couldn’t I make contact? It didn’t make sense to me. As far as I was concerned, I was perfectly athletic and able to perform.

Now, on the up-side of this “athletic confabulation”, this skewed perception of my physical skills, my oblivion to how uncoordinated and klutzy I was made it possible for me to keep at all the practicing, until I acquired some skill. One thing I will say for my parents is that they never discouraged me from playing sports, even when I looked like a dork and made a fool of myself. They just told me to get back in there and keep trying. Eventually, I would get it. And when I moved on to high school and started running cross country, I was the team captain two years in a row and led my team to the districts and state championship competitions. We didn’t win states, and we didn’t win districts, but we placed high enough to be serious contenders. And this at a time when running was not all the rage, and we were just a rag-tag bunch of kids in shorts and sneakers out on the open road…

When I was little, I also got roughed up a bit by kids who were bigger (and meaner) than me, but I told myself they had done it by accident. I wasn’t very good at deciphering what other people were thinking/saying about me — I was a lot slower in many ways than I admitted. But looking back now, I realize that a whole lot of social information went right over my head because I had such a skewed view of myself — I didn’t realize that I wasn’t following, so I never stopped to ask people what they meant when they were talking to me. If I hadn’t been head-injured, I might have been considered delusional. But I’d fallen and gotten hit in the head, and that definitely had an impact.

It had an impact on my perception of myself. It had an impact on my ability to track information and keep it straight in my head. It had an impact on my socialization, as I was often seen by my peers as a bragger or an exaggerator and ostracized over the years… simply because my brain was giving me false information.

I remember one time, in particular, when I was in fifth grade. My family had recently moved from a small city to the country, and I was acclimating to a rural environment from an urban one. I was desperately homesick for “the city” and I was angry a lot with kids around me for not having the same mannerisms as I. One day in class, I was telling everyone about my favorite thing to do — drive across a bridge that spanned a wide river. My dad had told me that it was very long — I think he said it was something like a mile wide? But my brain translated “very long” to “seven miles long” and I was convinced that the river was seven miles across and the bridge was too.

When I told the class that, my teacher tried to correct me, but I refused to be corrected. My brain told me the river is very wide — very wide means seven miles across, and that’s how it is. Nothing that anyone said could convince me otherwise. Not logic. Not reasoning. Not authority. I was convinced that I was right, and there were no two ways about it. The rest of the class thought this was hilarious, and didn’t hesitate to laugh at me. I wasn’t sure what I’d done wrong — only that everyone was mocking me, and once again, I was an outsider without a clue.

Looking back, I think that this confabulation business made my childhood a lot more difficult for me than I ever realized. My whole family is full of story-tellers, and they love to share their experiences. I’m the same way. I love to tell a good story, and I have lots of unusual experiences under my belt. I always have.

But time after time, when I would tell stories about my day in school or something that happened to me, I would get turned around, miss details, turn facts around, get mixed up, and generally make a mess of things. On good days, people realized I was just confused. On bad days, they clearly thought I was lying. And I could happily go the rest of my life without my parents, grandparents, siblings, aunts and uncles, (and nieces and nephews) looking at me like I’m making stuff up “again”.

Yeah, it was kind of rough, living with that undetected weakness. And being treated like I had done something wrong (intentionally) when I honestly didn’t realize that something was wrong, has probably stymied me more than just about anything in my life. In fact, one of the dominant themes in my life has been feeling like I was being punished for no reason that I could understand — and being disciplined for “lying” and having others laugh at me, roll their eyes at me, and generally treat me like I was a pathological fabulist who couldn’t be trusted with the truth was a regular part of my childhood experience. I wanted to tell the truth. I wanted to tell a good story. I wanted so badly to do the right thing and get it right, just once… But I failed. Time after time, my broken brain failed me.

And the times when I did get it right, well, that didn’t really count, because that’s what I was supposed to do. What did I want — a medal for just doing things the same way everyone else could?

Now, I’m not looking for pity or sympathy — please just understand what that experience was like. Especially if you know a kid who has had a head injury … or who just looks like a pathological liar/fabulist, but doesn’t appear aware that they’re doing anything wrong. Chances are, they are not trying to lie. They might be, but then again, they might just be confabulating. Like I was.

Again, they might have no clue that they’re doing anything wrong. They may just need some extra help understanding that they’re turned around and they need extra help figuring out the way things really are…  the way things should really be said/told/expressed. If they’ve had a head injury of some kind, it could be that their broken brain is hiding from them the fact things are amiss… and they can’t figure out why everyone is always laughing at them.

Or what they’ve done wrong. Again.

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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.

27 thoughts on “Growing up with TBI – The Confabulation Kid”

  1. I’ll bet that alot of kids who get in trouble with their teachers or ostracized by school mates fall into this category, then they realize the attention they’ll get from telling exaggerated stories so they keep doing it.

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  2. That could have something to do with it. But there’s also the chance that some kids really, truly do not realize that they’re messing up, and they keep getting turned around, getting in trouble, being ridiculed, etc. And the effect is not so much that they’re getting attention, as that they’re getting pushed farther and farther to the margins of society and failing to learn important lessons about how to get along in the world.

    Confabulation is actually very different from being a habitual liar and/or doing it just to get attention. It’s an actual neurologically based behavior that is not done by choice. Head-injury related confabulation is no more voluntary than double vision, heightened sensitivity to sounds, seizures, or emotional lability. If anything, folks who have confabulation issues don’t want to do it and no matter how hard they try, they can’t seem to get it right.

    One of the things I’ve always found most difficult about my TBIs is that they give rise to all sorts of behavior that others think is intentional, but is not. I can’t tell you how many times I was punished as a kid for things that I did accidentally, that others thought I’d done on purpose. It’s terribly distressing to accidentally hurt someone you love without meaning to, and then be punished for doing it “on purpose”. It’s really awful to be ridiculed and treated badly because you got the details of a story wrong… again.

    People tend to believe that others have total control over their behavior (or, at least, they should), and that they should be punished for wrong-doing. And if they’re responsible for their actions, then I have to agree. But I think it’s a good idea to check out what’s really going on with a kid, before jumping to conclusions and (mis)treating or punishing them based on their “bad” behavior.

    Given that young children and teenagers are the ones most likely to sustain head injuries, we might be doing society a great service by learning more about how head injury affects kids’ behavior… and how to address those problems constructively and with compassion, rather than categorizing them as liars, trouble-makers, rebels, attention-seekers, or whatever, and then building jails to house them, after they’ve become trained to stand on the outskirts of society.

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  3. Better Living Habits to Help My Brain Work Better

    1. You can get away with treating your brain pretty badly and it still works okay, as long as you don’t have a head injury. That rule changes dramatically after a head injury. The brain malfunctions under any kind of unfavorable operating conditions.

    2. For example, if you skip breakfast and eat fast food for lunch, expect your brain to get sluggish. Having a healthy breakfast, including some kind of meat or other protein, is strongly recommended.

    3. You should not subject your brain to any kind of nutritional deficiency. That means drinking plenty of water, and avoiding starving yourself.

    4. There are many theories about nutritional effects on brain function that recommend avoiding sugar, white flour, or both. These are major ingredients in fast food. Although science has not reached agreement that eating a diet which is heavy in fruits and vegetables, whole grain bread, and healthy sources of protein (fish and chicken) helps your brain to work better, enough nutritionists suggest this kind of diet to make it worth considering.

    5. Lack of sleep is a major source of reduced brain ability, especially in people who have had head injuries. To the extent that you can do so, you should make sure to get enough sleep. If you have difficulty in sleeping, this topic will be discussed in an advanced chapter.

    6. If your injury makes you prone to getting tired, there are “energy management” techniques that allow you to make best use of the capacity you have.

    7. Try to do your most difficult and important work early in the day.

    8. Try to avoid working under tension as much as possible, as that burns extra energy.

    9. Try not to do one kind of activity for long periods of time. Switch off from one activity to a completely different kind. For example, after reading something difficult for half an hour, switch to doing dishes or gardening. When you do this, you stop draining the last chemicals out of the reading systems of your brain and start using other, different systems. Switching activities like this can allow you to get a great deal done without getting completely exhausted.

    10. If there are stresses where you live or spend time, work on reducing those stresses. For example, after living or hanging out in a messy room for a long time, some people find that it actually reduces stress to straighten it up. If your living area is infested with bugs, and that bothers you, take steps to get rid of them. Any reduction in stress is likely to make everything work better.

    11. Getting some physical exercise every day seems to help the brain to work better.

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  4. Words to live by — truly.

    I am a huge fan of Give Back, Inc., and I hope the word gets out far and wide about what possibilities they offer to folks who have experienced TBI – as well as their families.

    It’s so important. Keep up the good work.

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  5. I came across your blog while googling lying and brain injury. We have been having problems at school with my 9 year old son and I am about to butt heads with the teacher over my intuition. You gave words to help me advocate concisely for my son. He had several brain injuries as an infant before we adopted him. In almost every way he seems “normal” which makes these areas seem more like a behavioural issue rather than from the injury.

    I will be reading more hoping – appreciate the insight into my son through you! Thanks.

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  6. Hi Cheryl,

    I’m really glad you found this information and have been able to use it for your son’s benefit. Confabulation can be a big problem, especially in schools with kids who seem otherwise “normal”. I hope your son’s teachers can understand this complex issue and offer him appropriate consideration, so he doesn’t have to suffer needlessly.

    All the best to you all.

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  7. My son suffered a severe TBI as an eight year old and was in a coma for four days. He has completely recovered and seems to be completely “normal.” He is doing okay in school. There just seems to be some moments in his life that are “off.” And I chalk it up to the brain injury, while others, even a close friend, think I may be using that as an excuse. I really do not think I am and I am always looking for good information from trustworthy sources! The more I search the more evidence I find that supports my own intuitions about my son’s impulsive, and even inappropriate behavior at times. He is most often very normal, and is very well behaved in school. But he can be very annoying, crazy, and inappropriate at certain times. I have also thought he has lied or made things up before. His siblings are always complaining that he is lying about what actually happened. So thank you for this post that shares an insider view. Those views are the most helpful because they give a glimpse of what may be going on in my son’s head!

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  8. Thanks for writing – yes, I agree with you. It seems to me that your son is still experiencing the effects of his brain injury. He can seem completely normal, but there may be times when he is really “off” – and it is not because he is not trying hard enough or intentionally lying. When things get turned around in the brain, it’s important to recognize the functional issues — and maybe also help steer him in a direction where he learns to slow down a little and think things through differently, so he can remember more accurately — or at least realize that his brain may be playing tricks on him.

    It can be extremely difficult to deal with others’ view that brain injury is a non-issue. It is NEVER a non-issue. It is always just under the surface, and those who don’t factor it in, not only can continue to suffer from it, but also don’t help things go in the right direction.

    Stay true to your instincts. I think you’re absolutely right, and I’m glad you found what I wrote helpful.

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  9. I am so glad I found this. It explains a lot. Tbi effects our memories in ways that cause others to bully or ridicule us, etc. That’s for sure. I thought that I had a pretty good memory as well, and believed that I forgot little if anything that i experienced. But instead of forgetting bits and pieces of events, and accidentally filling in the missing pieces incorrect information, i would forget the entire event. Whatever the case, the results were likely the same. I thought some people, especially those of authority, for some unknown reason, were out to get me. I was of the belief that people are basically good, so it was difficult to comprehend why they would make up stories that i did this or that when i truly believed that i did not do these things. These tbi related memory issues are recipes for disaster.

    The older i got the more i thought something is wrong with me but my father said i was just looking for excuses for being of low moral fiber. Luckily, three years ago, at the age of 48 i finally figured it out: I had a tbi at age 15 – 4 days in a coma/paralyzed six weeks Then woke up not paralyzed (luckily)with broken back,skull, face, ribs etc. etc. Then after only 10 weeks since my accident I was back in school (with casts on both arms and legs). Unfortunately I was never told I had a tbi at that time. And I’m convinced i had a tbi at age 3 when electrocuted with my father on the roof of our house we both fell off the roof and I was some time in a burn center in coma and several more months there recovering from burns. Point is, for as long as I remember I experienced the ridicule, bullying, and accusations of lying. And when I got home got even more of it from my father. And with him it was so bad that he was, and still is convinced, that I need and needed to be punished sternly; that my character is so corrupted that any act of kindness or understanding would/will damage me further.. Therefore, throughout my childhood into adult hood my mother had to hide any acts of kindness or understanding from him. Things such as music lessons, or letting me off restriction my dad placed me on for the entire summer break just after the tbi I mentioned above (when I was 15) for the two weeks my dad was away on vacation with his brothers that summer. i could go on and on, and write several books right here about this but please let me honor my mother and say that if not for her providing (sneaking) considerable financial support to me i would have been at best homeless by the age of 18. But, like the writer expressed, the injury can be oh so deceptive which is a good thing. But if not properly diagnosed or understood can be so very bad.. If you met me you’d never guess that i was brain injured. I’m intelligent, bright, athletic, etc which explains why i or should i say we can be SO misunderstood. Anyway. I’d like to thank the original writer and the rest of you for putting this out there. Hopefully the world will become more aware and understanding of the result of tbi.

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  10. Hello. Please take my full name off of the previous post. I’ve never blogged before but was compelled to do as i can relate ohh soo much. Anyway, I certainly did not know my name would be shown online. Thanks

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  11. Thank you for writing and sharing – your story sounds very familiar – the accusations, the bullying, the stern treatment, the claims that we deserve to be punished for our shortcomings… that we are doing things deliberately, or our moral fiber is corrupted so it needs to be “fixed” with cruelty.

    It’s good that your mother was on your side – that is another common theme, throughout the culture, too. Mothers often just know what is really going on, and sometimes we’re fortunate to have someone in our life that can see through all the outside appearances and recognize us for who we really are.

    To this day, my family still treats me like a bit of a dangerous criminal – they are very cautious around me, at times. I never really noticed it consciously until I started active TBI recovery – and now that I see it, well, it sucks. And I have to work all the harder to overcome that. But I’m no stranger to hard work, so I guess that helps. 😉

    This injury truly is deceptive, and for those of us who have been dealing with it for a long time, it can become even more hidden, because we get used to hiding it away and covering up… which makes it difficult to ask for help when we need it. Especially if we have been bullied and mistreated because of our shortcomings — which happens so often.

    Best of luck to you as you go through your life, and happy new year!

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  12. Thanks brokenbrilliant, for your kind words. It’s comforting to know that someone can actually understand the nightmare that has been my life.

    I’ve composed a more comprehensive post but I’m not sure that this is the correct forum. You mentioned in your reply that you are engaged in active tbi recovery. Can you please let me (us) know where are you finding this? And perhaps direct me to a better place to post my “more comprehensive” note i mentioned above.

    Thanks so much.
    d

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  13. No problem d –

    I remember what a relief it was when I came across the first accounts by people about their TBI experiences. I can’t remember the exact place/time that I came across someone who really “got” it, but I do remember being so relieved that “it’s not all in my head – there really is something going on with me”.

    If you’d like to share your post, by all means, feel free to do so. You never know – someone else might find it helpful for their own situation.

    For my active tbi recovery, I have done several things:

    First, I learned as much as I could about the different ways tbi can mess with you.

    Also, I studied myself and my situations very closely – like what they suggest with Give Back LA — see http://www.givebackla.com/?cat=1 — tracking my “head injured moments and learning what helps me and what hurts me.

    I have also found a great neuropsychologist who has been helping me navigate my issues, and be a regular sounding board, so I can rethink things that need to be re-thought. They have been very helpful, but I’ve also found them to be inclined to tell me I’m wrong about my issues – that I don’t really have some of the issues I have, or that they should not be that big of a problem. I have been this close to leaving them, many times over, but it does seem to help me, just to have someone to talk to on a regular basis – who can see the issues that I am having, versus the issues that I think I am having. Some days, I think we’re *both* wrong, but that’s just part of being alive, I guess.

    I have also really tried to stay physically active. My recovery really kicked in, about three years ago, when I started exercising on a regular basis – each day before work. My job situation changed a little over a year ago, so I haven’t been able to carve out the time in my schedule to keep up with everything, but I do try to keep fairly active, stretch, eat right, and get good sleep (not always successful on the last one).

    Most of all, I watch and learn and just keep going. Being honest with myself about as much as I can, is critical. That’s really the cornerstone — that, and taking responsibility for my life, tbi or no.

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  14. Now a few days short of age 85 years, I wish I had found the concept of confabulation when I was 14 years old; would it have made any difference?

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  15. Wow – 71 years is a long time to live without that piece of information. It may have made some difference to you when you were 14… however it’s quite possible that people around you would not have believed that confabulation was the culprit, and it can be a very lonely thing when you know what the deal is, but nobody believes you. Whatever happened, it helped shape you into the person you are today – there are always good things and always bad things. At least you know about it now…

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  16. Mmmmm, I’m told in simple terms it’s a fancy word for lying. But I find family play on it when I recall things better than they do. Sometimes it sucks being high-Functioning and having a case-management brain.

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  17. That can be said for dyslexia, too. Funny thing is, I fell 4 feet onto concrete as a child, but no one said their was brain damage. Eerie: Your childhood sounded a lot like mine.

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  18. I’m so grateful to have found this through Helentastic’s site. I don’t have this particular affliction, but I am always heartened to understand better how other people cope with afflictions. I salute your candor and courage, as I do Helen’s. Thank you, and may God keep you motivated by the challenges He gives you!

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