The secret havoc of brain injury

Even among the properly trained, it can be difficult to understand exactly what is going on inside an injured head. At every turn, if you present well, outside your head it is assumed that you are well, that all is well, and that all will be well.

But inside your head, there are no such guarantees.

Inside your head, nestled amongst the tens of thousands of memories of what was supposed to go one way, but went another — with or without warning — lie slumbering catastrophes, just waiting to be awoken by sudden laughter or applause…

All the screw-ups, all the mess-ups, all the misspoken words, the misunderstood directions, the confusions, the communication breakdowns, the confabulations, the failed connections… no matter how small they were, the simple fact remains that things did not go the way they should have. No matter how hard we tried, things did not work out. And there were consequences — we tried like crazy to avoid them, but it just didn’t work out. We may not remember the specific details of each minor catastrophe, but the residue of each and every one is very much a part of who and what we are. Our brains may not remember each detail, but our bodies recall very clearly the experience of being wrong or mistaken or confused all too well.

Inside your head, sandwiched between the best-laid plans and the rock-solid goals and the shining hopes and the lifegiving dreams, the condensation of nagging doubts builds up. There is no true certainty with brain injury. There may be a sense of certainty, but the reality all too often is something very different. They trickle in, these well-versed, well-founded doubts — liquid sabotage — from the pressure cracks in your system, the pressure cracks in your life, seeping in through the fissures to accumulate in the crevices in the foundation you’ve built your life upon. When the weather is warm and pleasant, all is well. But when it gets cold — a sudden snap, perhaps — the liquid expands like icy water freezing in sidewalk cracks, and it separates the pieces of your foundation like so many pieces of stone or brick or cement forced apart by sudden ice.

Outside your head, everything looks fine. Everything looks good. Until you snap. The pressure builds up too much — too little sleep, too many demands, too much long-term fatigue, too much cognitive deficit, too many questions, too much to do, too few resources left over at the end of the day to manage it all. Too much… too. And you lose it. Go off the deep end. Pitch a fit. Fly off the handle. Over what? Sometimes it’s hard to remember.

And then it hits the fan. You’re not the only one in the line of your own fire. And the others who bear the brunt may or may not be accommodating. Chances are, they’re not. And a brick pops out of the wall. A chunk of your foundation cracks off. The mortar between the stones in your carefully constructed retaining wall starts to crack and crumble.

Again.

Maybe the people you lost it around remember other times you’ve done this. Maybe they don’t. If they do remember, chances are they’ve tried to forget, tried to give you the benefit of the doubt, tried to make allowances or exceptions. Tried to give you another chance. But they keep giving you second chances, and still… it comes back to this.

Maybe the people around you don’t remember you losing it before. In which case, depending how long they’ve known you, you’re either the benefactor of their interpersonal largesse and allowed another chance or special exceptions… or you’re marked as someone who isn’t quite right and can’t quite be trusted.

Or maybe the problem isn’t anger at all. It’s not temper. It’s not tantrums. It’s not violent outbursts. It’s something much less dramatic, but all the more sinister — unreliability. Perceived flakiness. An apparent inability to do simple math. Or spell. Or use proper grammar. Perhaps it’s failure to deliver. Over-promising and under-delivering.

The last one is the most sinister of all. It makes you look like you’re either completely out of touch with reality or — worse — a liar. One slip, and you’re suspect. Another, and you’re a marked person. One more, and you’re written off. Yet another, and you’re doomed. The world can tolerate a lot of variability, but the world of work and accountability is brutal on those who fail to deliver what they promise. It’s sink or swim. Life or death. With the economy the way it is, and the global marketplace as competitive as it is, there is even less margin for error, than there was 30 years ago.

It’s not just the case for the workers of the world — also for the spouses, the friends, the family members, the community members. There’s just not that much tolerance, anymore, for those who don’t measure up. Perhaps there’s never been. But in this world we have made, the stakes are much higher. 500 years ago, you could retreat to the forest and survive. Now, nobody really remembers how to live on the land. We are much more interconnected and interdependent than ever, yet our tolerance for variations in human expression has not kept up.

We have invented a world for ourselves that has no room for many of us.

Where, then, shall we go?

Within.

It’s the only place that’s safe anymore — and that’s a relative statement, in any case. After all, within is where you store the collective memories of all your screw-ups. It’s where you wrangle with the very real recollections of your own failings, the collected experiences of your shortfall. It’s where you have to live with yourself, like it or not. It’s the one place that who you are and what you are — and are not — capable of, is very clearly known. Except when it’s not.

Within is a haven that has significant limits, to be sure.

But within, at least you have a chance to sequester the truth of yourself and your limits in their own company, and they can keep each others’ confidences in the silent corners of your mind. No one needs to know, just what a hard time you’re having these days. In fact, no one wants to know. They have their own troubles. And how they have their own troubles. Nobody likes to think others have troubles nearly as bad as their own.

Funny, how people are like that. If you step forward and ask for help, you stand a better chance of being smacked down than given the help you need. You stand a better chance of being reprimanded and chastized, than assisted, even if you ask for specific kinds of help. “Everybody has problems with something… Look at you – you’re lucky! You can still walk and talk! You still have your health! Some people have it really bad — at least you don’t have MS or Cancer or Parkinsons or Alzheimers! Stop complaining and just live your life.”

Buried in the litany of “real” problems that other people have, there’s a common theme, a recurring chorus, that goes, “I’m in pain too, but I don’t vex the rest of creation with nagging pleas for help. If I can suck it up, you can too. Get with the program, cowboy, and just deal with it. Oh, by the way, have you paid your taxes yet?”

Looking without for assistance is a tricky thing. You may be better off, not even trying. If it’s logistics, like staying alive during a long, cold winter, then yeah – speak up. But if it’s “higher” functioning stuff like memory or fatigue or distractability or behavioral issues, chances are you’re better off keeping your own confidences.

You may wish to keep the bad news about the havoc in your life to yourself. I do. And it’s working out better for me, than when I told people the whole truth about my situation. I’ve learned to keep my mouth shut about it, for the rest of the world simply does not, cannot, and will not understand. Most people have their own troubles — ironically, much of it their own making, due (among other things) to poor time management practices, crappy sleep hygiene, and bad living habits. It’s not neurological with them. It’s either mental laziness, lack of character, or addiction to drama. They create their own overwhelm, and then they liken their situation to mine.

Ironic, to say the least. I could teach them a thing or two about time management and improving performance. The fact that I can get as much done as I do, despite the limits I’m dealing with, says a lot about how-well designed and oiled the “machine” of my life is. I should bottle my system and sell it. I’d be rich, if I could. But most folks I know are heavily invested in their self-created drama, they’re getting by okay, in spite of their chaos, and they don’t see anything wrong with it. Me trying to get help from them to fix something they don’t think is a problem — somethign that they think is just how life is — when I know differently — is like trying to outlaw drinking on a cruise ship.

Yes, most folks have havoc enough — self-created as it is. And they can’t for the life of themselves fathom why others (whom they assume have self-created their own havoc, just as they have), are whining about needing extra help getting on with their lives.

Outside the mind, the odds of getting your needs met as a traumatic brain injury survivor (or as a significant other of one) are slim to none. Money is tight, after all. Only the most severe and obvious cases stand much of a chance of qualifying for help.

But there’s always within… When you keep your own confidences and you hold your own counsel in the privacy of your own mind, you have a chance to make right the very things you know for a fact are wrong. You can work with your demons on your own terms, in your own time, without the messy meddling of others who may say they understand, but really don’t. Within, you have a chance — if you know yourself and your situation for what they truly are — to negotiate and navigate and accommodate and mediate… to adjust and tweak and compensate. And just get on with your life.

Outside, there’s precious little that anyone else can do for you. Sad, but unfortunately generally true. People don’t know shit about brain injury. Nor do they want to. They’ll glance at the billboards and skim over the ads in the magazine, and get on with their busy, havoc-filled lives. And never give it a second thought.

But within… there you have a chance. Only you know just how messed up things can get. And only you can identify exactly what is wrong. Only you can know for sure if the results are what you planned. The rest of the world thinks you meant to say or do such-and-such. Only you know the truth — that what you did or said was anything but what you planned and intended.

Havoc… catastrophe… conundrum… confusion… Screw-ups… Failure… teetering on the brink of collapse…

Nobody truly knows about it, but you.

So, what will you do?

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What if I have nothing to prove?

I’ve been spending a fair amount of time tracking my experiences, the past week or so. I haven’t been quite as diligent as I could be, but I’ve been really caught up in learning new skills for work that are as interesting as they are essential.

I’ve also been looking back at my experiences tracking from about a year ago, and I can see that I’ve really come a long way. A year ago, I was painfully conflicted about just about everything in my life. My work situation was in flux to an almost perilous degree, my internal landscape was pretty torn up by emotional storms, my outbursts and meltdowns were intense and fairly frequent, and I was not communicating well at all — with anyone.

I can’t say that I’ve completely righted my life, but the seas I’m sailing are a lot less stormy than they were this time last year. I’ve learned how to not only handle myself better in a storm, but how to tell if a storm is coming, and steer clear of those waters. All in all, I have to say that I’m doing a whole lot better now, than I was before. I’m probably doing better than I have in my entire life.

A big part of that process has involved getting to know the ways in which I’m limited, or the ways in which my brain functions in a non-standard way. There are a select few (but fairly significant) ways that my brain differs from what’s expected. I tend to memorize things from rote, rather than grouping ideas or things into thematic categories. My processing speed is slower than would be expected of someone with my level of intelligence. And I have a dickens of a time with working memory — I tend to lose hold of new ideas and information after only a short bit of interruption, or if I shift my attention to something else and then try to come back to it.

All my life, these things have been a problem. And they’ve given rise to a whole raft of other issues, which I’ve really struggled with for as long as I can remember. Ironically, I haven’t had a really clear understanding about the nature of my problems. I knew — vaguely — that something wasn’t right, but I didn’t understand exactly what was wrong… or why. I always just figured I was some kind of idiot or I wasn’t trying hard enough or I was just being lazy or I was being a bad person. And that belief was reinforced by countless people around me who couldn’t figure out why someone as smart as me could be so dumb at times. So, I thought there was something really wrong with ME, and I told myself I had to work really, really hard to redeem myself.

Thinking that there was a problem with me gave rise to an inner drive and intensity that’s been fueled by guilt and shame and a deep need for some sort of redemption or salvation. I’m not talking about the religious type, rather, a daily striving to make up for the things I thought I was doing wrong… for the ways I thought I was living wrong… for the ways I was being wrong… which led to my screw-ups, misunderstandings, faux pas, clumsiness, forgetfulness, confabulation, etc. I’ve had this monkey on my back for decades, hopping up and down on my head, driving me to fix what I’d messed up, to make right what I’d mucked up, and work really, really hard to prove to the rest of the world — and myself — that I was not a loser, that I was not a slacker, that I was worthy of being an equal member of society.

All my life, I’ve been driven to prove I can do it, because there was a constant voice in the back of my head that told me I couldn’t. We all have this little voice in the back of our head, repeating to use both truths and lies about ourselves, based on what we’ve experienced and been told about ourselves.

This voice told me I would mess everything up — because that’s what I generally did. So, I had to work twice as hard to make up for my messes.

This voice told me I would get turned around and lose my way — because that’s what always seemed to happen. So, I had to bend over backwards to figure things out ahead of time to prove to myself that I wouldn’t get lost.

This voice told me that I would never be able to do the most important things, like have a good job and own a house and be able to pay my bills, and be a productive member of society. So, I had to drive myself to take on the biggest tasks, make the most money, have the best house, and get involved in the most worthy causes, to show that it wasn’t true.

Now, I can’t say I dislike having a good job and a nice house and being involved in worthy causes. I really enjoy having a clear view of where I’m going in life. And I enjoy working hard, so pushing to achieve suits me just fine.  I also need to maintain what I’ve worked so hard to build up.

The thing is, now that I know so much more about what makes me tick, I need to find new reasons for doing these things — and doing them well. Now that I can see how so many of my problems have stemmed from my brain injuries, rather than fundamental character flaws, I’m finding that I’m a lot less driven to do everything in order to prove myself. The intensity of my past is mellowing, and that edginess that pushed-pushed-pushed me is on the wane.

In many ways, the pressure is off. Because I’m not a bad person — I’m an injured person. I’m not lazy or crazy or defiant. I’m in possession of a brain that works more slowly than would be expected… that gets bits and pieces of information instead of the whole shootin’ match… and that has a genuine need to question statements and orders, because I honestly don’t understand everything when it’s presented to me in one whole package.

And that’s a good thing. How long can a person be reasonably expected to function at such a high pressure level? I’m not sure I could have lasted much longer, personally.

But it’s also a problematic thing.  Because I’ve built this life which I really enjoy, I really like, I really value. And I have to keep it going. I have to maintain it all — and it’s a lot — without the guilt-and-shame-and-panic-driven engine in my head and gut chug-chug-chugging away.

I have to find another reason to do things, other than simply proving that I CAN DO IT. I know I can. I’ve proved to myself and everyone around me that I can. And now that I know better why things in the past got messed up, I can warn myself away from recurring dangers and not run into those proverbial ditches along the road of my life. But without the same level of self-recriminatory redemption obsession driving me forward, what’s going to drive me now?

no one believes me after mtbi

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.

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.