Yesterday someone found their way to this blog by typing in this sentence. And the other day, I fielded a comment from another TBI blogger who has been having problems getting support from her family.
I think one of the most challenging friggin’ impossible aspects of TBI, especially MTBI, is the amount of skepticism that the rest of the “neurotypical” world has towards the brain injured. Because they can’t see our injuries, they have no idea they exist. And they often flatly refuse to admit that they may exist.
Our struggles are seen as “laziness” or some other character defect. And if we really wanted to do some things, well, we should be able to, right? After all, we have free will, and where there’s a will there’s a way. Right?
Not always.
As one of my readers, M, recently commented quite eloquently, our brains are changed by the experience of injury, and it is vital for us to factor in that change, when setting post-TBI expectations. The will and indeed the whole personality is intimately tied with the brain, and when the brain changes, well, the personality and character of the survivor will, too.
It’s important to approach our changed brains with the right information, compassion, and non-judgment. If we don’t, it just makes matters worse. And no one is served.
One of the changes that can take place — which has been an ongoing challenge for me — is that the amount of information the brain takes in can be diminished. That can lead to all sorts of processing issues, with important bits of info getting dropped – or, at times in my case, never getting in at all. And when the brain has less information, but doesn’t realize it, then it can start to miscalculate without realizing it. This can lead to a condition called “confabulation”, where a person comes up with ideas and concepts that are only partly accurate, but they have no idea they don’t have the whole story. They may think they’ve got it all figured out, but they don’t. Yet they don’t even realize it, which is a problem, when it comes to dealing with other people, some of whom may know better.
I know that my own life has been marked by many, many instances of people thinking I was lying or intentionally misleading them about things I was saying, when I was simply confabulating. I was absolutely, positively, 100% certain that I had all the details right, I had the best of intentions, I was trying really hard to connect with them, and I thought for sure I was being intelligent and sensible and together… when all along, there were key pieces of information missing in what I was talking about.
I wish I could give a specific example, but I can’t think of one right now… no, wait — here’s one:
I was hanging out with my dad on a recent family trip, and I started talking about some new idea that I thought he’d really relate to. My dad’s a really heady guy and he loves to talk conceptually about stuff. Some kids talk to their dads about golf or baseball. I talk to my dad about ideas. So, wanting to really connect with him during my visit. I had this inspiration to tell him about a new concept that I’d been thinking about, over the past few months. My dad and I have had a somewhat rocky relationship — I never turned out to be the kid he wanted me to be, and he was pretty rough on me when I was young ’cause I wasn’t living up to his expectations. So, I’m always looking for some way that we can connect as adults, rather than as the standard-issue dysfunctional/disappointed parent/kid.
Anyway, I was totally psyched about having thought of this idea, and I was certain that another friend of mine (who is a lot like my dad) had told me about it. I went into all this detail about this concept, moving through it somewhat gingerly, so I didn’t miss any of the details or nuances… trying to sound halfway intelligent… getting kind of insecure, ’cause my dad was getting quiet like he always does when he’s about to correct me or criticize me… just soldiering on with this idea, trying to flesh it out and make it sound out loud like it sounded on the inside of my head.
My dad kept getting quieter and quieter, and I got more and more nervous, and I started talking really fast about how I’d heard about this idea from a friend of mine… Eventually, the conversation petered out, and my dad went off to do something else. He seemed like he was upset with me or something, but I couldn’t figure out what I’d done wrong. 43 years old, and I’m still trying to figure out why my dad is miffed at me… It’s kind of sad.
Well, long story short, after a few days, I suddenly remembered that my dad was actually the one who had told me about this concept I’d been discussing. It wasn’t my friend, it was him. He’d told me about it either on the phone, in an email, or during one of my past visits. And when I was going on and on about my friend and their ideas and the details of what “they had told me”, I was actually repeating back almost verbatim what my dad had told me about, as though I had good sense.
How humiliating. I had been so very, very wrong about some very key ideas, and yet I had been so utterly convinced that I was right. And there I was, a grown adult, still trying like crazy to win my dad’s approval, like some little kid who’s got no clue. And there my dad was, getting that same old look on his face that said, “Here they go again… what a liar… what an idiot… space cadet… dufus… dork. I can’t believe this is my kid — 43 years old, and still telling tall tales. When will they ever learn?”
Confabulation is no friggin’ fun. Especially in 20/20 hindsight. It’s inconvenient and exasperating for others when it happens, it’s disorienting for me when I’m in the midst of it, and it’s humiliating for me, when I figure out later that it happened. I just hate it. But I’m not sure what to do about it.
I’m not sure if there’s anything to do about it, other than educate the people around me about what it’s about and how/why it happens. The only problem is, figuring out how to educate them. Because by now, after a lifetime of this foolish consistency, a lot of people who are close to me have a hard time believing me, to begin with.
Broken Brain - Brilliant Mind 
Hi there,
Your Dad should have been more forgiving. He must have at least some idea of what you’ve been through.
But yes, it is incredibly hard to get people to understand that you have changed after a head injury. They can’t see it, they can’t understand it, and even if they believe you, it scares them. I went through years of this with my ex, with friends, with people in general.
As regards confabulation – for years I used to write down the more important encounters in my life (usually involving women), partly as a means for remembering them, but also as a means of looking back and trying to understand my part in the encounter – to see if I got it right at the time. You start to mistrust yourself after awhile, mistrust your ability to understand other people’s actions, because everything is filtered through this fog – and, perhaps even worse, by the isolation imposed by the fog. And yes, I’m embarrassed to admit, there were many situations I misread almost totally . . .
Curiously, I did find my intuition increased in those years, as if to compensate for lost perception. The woman who wrote ‘Stroke Of Insight’ describes this apparently (I haven’t read the book yet, so can’t comment).
There seems to be more awareness and information about MTBI out there now. Perhaps this will make it easier to explain to people: yes, this is a real problem, this is why I’m acting this way and so on.
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Thanks – my parents have never been very good at accommodating my difficulties. They’re really nervous about how I turned out, I think in part because they think they did something wrong to make me the way I am. I’m an uncomfortable reminder of how things can get mucked up at times. I really need to tell them that I don’t blame them for what happened to me or how I turned out… take that off their plate, so to speak, so they/we can just live our lives and perhaps be a bit more comfortable around each other.
When it comes to living life, writing it all down really does help, doesn’t it? I have recorded my experiences for years, but I’m afraid I haven’t made the most of my journals. I tend to just write down stuff and then forget about it. I should really revisit what I record. It gets a little uncomfortable at times, seeing how off base I can be, but I’ve just got to face up to it. Stop being so timid and focus on the positives.
Speaking of forgetting about stuff… I had bought a copy of “My Stroke of Insight” … and then forgot to read it. Thanks for the reminder — I’m going to go back and look at that book again.
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BB –
Thanks for the compliment !
By the by I liked what your list on dealing with difficult situations.
I also appreciate that others don’t see someone with a tbi as having a medical problem but rather as being willful or emotional difficult. Indeed sometimes I feel that about myself – it would be one thing if I had my own absolute sense of what was broken or healed or whatever – but you really don’t. Even all the neuropsych tests don’t really explain it.
The neuropsych therapist you have sounds like a good approach – I have found that it is actually helpful to a large degree to separate out the emotional history baggage – at least until you get to a point where you feel empowered enough to know that you have the coping skills and strategies to handle the tbi stuff. TBI is not about how your were raised or whether your partner dumped you or whether you have low esteem -however, although its a physiological issue it runs right over the same roadways of the emotional train – and often becomes indistinguishable.
I believe that much can be done in terms of self improvement and with good strategies you will discover a lot. I do think that the key virtues of cognitive therapists (good ones) is that a) they have a set of skills and ‘tricks’ that you can apply to save you time from figuring this out and b) they can push you. As to the later – most don’t push you, we don’t like pushing people who are injured. I will say time and time again, if I had not inadvertently put myself into a situation where I was forced to improve my working memory – and struggled mightily while doing this, including getting angry, ashamed etc – I would never have come as far as I have. This is true in other areas as well – I have done things that the rehab folks have said they can’t believe. Yet it is hard to push yourself, hard to make yourself get to that point – I was desperate and not aware of how much damage I had experienced so I don’t advocate being hard on oneself (and you are already hard on yourself).
Also – make sure people (and you) emphasize your strengths – my analytical skills allowed me to work around a lot of problems – I suspect that this is true for you.
I had some other points I wanted to make but can’t recall at the moment and gotta go – keep at it!
M
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You can read all about me by going to look at my blogspot so I give you just its link.
I like your blog very much and I wonder if you have ever heard about HBOT
http://hbot4carlo.blogspot.com/
Regards
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Thank you for all the insight I have received in reading about your experiences with TBI. I blacked out seven months ago today at home and woke up 48 hours later thanks to my neighbors and God in Seattles top trauma Hospital Harborview. My blood pressure was 230/110 (or 200/100 I’ve heard both) when the EMTS got to me. Hence, the brain injury and I had a seisure because of it as well. I have just started reading about TBI because after seven months friends and family as well as myself were beginning to ask “So, when are you gonna get back to normal, here? Ya know.” Or the “Honey, just don’t think about it anymore. Don’t talk about it.” Heard any of those?
I am so glad to hear that I am not going crazy. All the things I have felt in the past seven months are in these blogs and websites. I feel like it was a mild brain injury because I was only in a coma for two days and a lot of it was doctor induced. So I figure mine doesn’t count. I have fought this thing for so long. I don’t want to give up on the full recovery but it is really nice to know I am right on course. Thank you so much for helping me today. It’s been a hard weekend. I guess I just needed to know that the problems with memory, not being able to read very well and remember what I read and slowness was part of the package.
Lauren Hudson
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You’re very welcome Lauren – and I’m glad you found this blog.
No, you’re not going crazy. It sounds like you’re one of us — the millions of folks who have sustained some sort of brain injury who are dealing with the aftermath on a day-to-day basis, not getting much support or understanding from our surroundings, and being overlooked by a health system that doesn’t know how to help us and/or how to make money off us.
Never fear – you’re in good company. There are plenty of us with memory and reading and memory and problems keeping up. But you can still have a good life, no matter what. And yes, your issues are real.
Keep reading and learning and looking around for folks like you.
You’re not alone.
BB
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