What I do, versus who I am – TBI and Behavior Issues

I have been giving a lot of thought to behavior issues that arise as a result of TBI. Discussing my “eventful” childhood with my parents, in light of the concussions I experienced, brought up a lot of old memories about the bad behavior I exhibited, time and time again.

At the same time, I’ve been meeting with my neuropsychologist, who has been trying to explain to me that relatively speaking, the neurological after-effects of my TBIs are not so terribly severe. For the most part, I have a lot going for me, and I score well in key areas. I do have a few significant areas of difficulty, but I’m really not in terrible shape, neurologically speaking.

I’m still trying to get my head around it. Maybe I’m being dense, but it’s hard for me to see how little is wrong with me.

Because I struggle. Oh, how I struggle. The fact that I’ve been up since 1:30 — wide awake from worry and pain — is evidence thereof. Now, part of it may be the fact that I’m a highly sensitive individual with a lot of life and curiosity and adventurousness in me… which tends to put me on a collision course with the less desirable parts of human experience. A lot of it may be due to that, in fact. But it certainly doesn’t help that my memory leaves a lot to be desired, my processing speed isn’t as fast as I’d like, and I tend to get overwhelmed and melt down.

I don’t want to make more of my situation than need be, and I certainly don’t want to hold myself back in life  by focusing on my limits, rather than my strengths. I just need to understand why it is that I have such a hard time with things that others seem to be fine with. What, in fact, is holding me back?

All things considered, I think most of my day-to-day issues are behavior-related, versus purely neurological. I have had a bunch of head injuries, it’s true, but my MRI and EEG both came back looking peachy, and that doesn’t seem to correlate with the difficulties I have. Indeed, the problems I’ve got with insomnia, anger management, becoming quickly fatigued, trouble getting started, trouble reading, getting turned around and overwhelmed, saying the wrong things and doing things differently than I’d like, seem more behavioral than cognitive.

Well, it’s 4:30 a.m. and I’ve been up for three hours. I’m bushed and I need to sleep. So, for now I’ll just share a number of links I’ve found interesting and useful in understanding tbi and behavior:

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 “What I do, versus who I am – TBI and Behavior Issues”

  1. BB,

    That’s the hardest thing about MTBI – the subtlety of the symptoms. I’m still trying to sort out what is and isn’t MTBI related and to some extent even trying to do that may be pointless – on any given day, there might be emotional issues, distractions and so on.

    I do know the fatigue is very real. Not as real as it was say five, six years ago (or nine year ago – my Lord! I’d go to the store and have to lie down for an hour). But the other areas are confusing.

    For example:

    I’ve been a writer for awhile, some early success. I spent the last couple of years trying to finish a novel I started before I was injured. I worked at it and worked at it – and couldn’t get it. I couldn’t get the structure, couldn’t remember the era I was trying to write about with the proper clarity. I could remember the outlines, but not enough of the actual detai, what it FELT like . . .

    Lately, I’ve been understanding structures like never before. I think part of it came from studying web design, coding, which is all about structure. But maybe it was a healing process as well – those new channels Dr. Doidge writes about in his book. Its been like finally being able to see the colour red and realizing ‘this is what people are talking about when they talk about the colour red. Wow!’ The point being, I realized something had been missing . . .

    Is it head injury related? A life skill? I really can’t answer at this point – the two are I’m sure intertwined.

    The last time I saw a neuropsych, a few years ago, he said to me, “we don’t get many in-between people like you.” I’m sure that’s very true.

    I was thinking about an exchange we had a couple of weeks ago about how people would have dealt with head injuries a generation or two ago, how people fell through the cracks. I was thinking about it in terms of a criminal case I was reading about, but I just woke up and will have to think about it a bit more . . .

    Anyway, hope you get some sleep. Advil helps – or it does me anyway. Dulls the mind and relaxes the muscles. I must have consumed a barn of the stuff in the last nine years or so.

    Cos

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  2. Thanks man – I did get a decent nap in this afternoon. And I’m taking tomorrow off from a commitment I had made weeks ago, so I’ll sleep then, too. Funny – the more tired I get, the harder it is to sleep. But the more sleep I get, the easier it is for me to get to sleep.

    Wow, do I hear you about the book-writing. A year before my latest fall, I wrote a novel that my friends really loved. They kept clamoring for a sequel — I had written the first book with the intention of doing a whole series. But after I fell, I just couldn’t manage it. I got so turned around, trying to sort out who was doing what and why, and how their characters had developed, I couldn’t get anywhere. Like you, I couldn’t tell what the next book felt like — let alone the last one.

    Coding really helped me a great deal, as well. I was working on it very heavily after a car accident in 1996 that pretty much trashed my ability to interact smoothly with others. Prior to that, I had been pretty articulate and with it — then I had that car accident, and I just stopped talking to people for about six months. Lucky for me, I was able to make a job change to work on web development, so I didn’t have to interact with many people — just the computer. I remember the very day, when things turned around for me and I started to come out of my shell — I made a joke at work.

    And everybody laughed.

    And it was life-changing on a number of levels, ’cause the folks I was working with had viewed me askance and had tried to reach out — in vain — for the last six months. They were starting to give up on me, and if they had, my career would not have fared well. Truth to tell, I think they were a little afraid of me, with my deadpan/sour expression and my quick temper. And nobody had heard me make a joke or laugh or find humor in anything. Which, in itself, was a casualty of the car accident, because before that, I had always been very witty and engaging, and then all of a sudden I was shut down and humorless(?) That was a loss I did not understand at the time. But I got it back, which was good. Once I started joking, I remembered how good it felt, and before long I was back in the swing of things. But it was fairly disorienting, to not find ANYTHING humorus… it made me seriously doubt my own sanity.

    I too have found Advil to be helpful with sleeping. That, and stretching before I go to bed. I find that if I really s-t-r-e-t-c-h out as many muscles as I can, and then pop a couple of Advil, I sleep so well that it doesn’t affect me as much, if I only have 6-1/2 or 7 hours. One of my stretches causes my back to crack (in a good way) in 4-5 different places. As soon as the vertebrae get back in line, it’s a whole lot easier to relax. Magic.

    Cheers
    BB

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  3. BB,

    Interesting the parallel experiences. Actually I wanted to ask your advice about coding – at some point. Basically, after six months of studying html/ css/ now starting on actionscript and java, getting a sense of the industry – I’m wondering to myself – is it worth it since, like media, it seems very competitive and dominated by kids . . .

    But that’s another email . . . for now, I’ll say that yeah, it has been interesting how it has taught me a lot about structure, how to learn and retain information, how structures build upon structures. But would you mind me asking about career advice here?

    I think Advil works because it relaxes the nerves. Stretching does help as well. Curiously, when I get up in the middle of the night, I find getting on the net kind of calming. It’s not so much the screen, which is hard on the eyes, but being connected. The amount of time I’ve spent in the last ten years on my own has been appalling – isolation has been the hardest thing to deal with. Because yeah, it does get hard to be around people, to be up and in a good mood. Plenty of times I came across as plenty miserable too . . . .

    I also find that the more tired I get, the harder it is to sleep – and the harder it is to feel rested. If I get totally drained – and this happened last week – it can take days to get back to normal, where I don’t feel totally out of it and can actually sleep at night. When I’m really tired, my nerves actually clench up so my limbs feel like blocks of wood . . it’s like all the fatigue gets wrapped up in the nerves and sinews and everything, even my thoughts are tight.

    I was thinking about our exchange over people who were never diagnosed the other day, like we were saying what happened to people who went untreated. I was reading about those murders up in Connecticut a few years ago after a story in the New Yorker. I was in the UK when they happened so wasn’t aware of the sheer horror of them. Anyway, turns out one of the perps, Julien what his name had had like at least nine concussions as a kid, probably more (he was into extreme sports). His family noted that something began to go wrong with him after a few accumulated. And that guy in California, creepy Phil, was never the same after a concussion after a motorcycle accident. For that matter, Phil Spector, also recently convicted, changed dramatically after a car accident in the early 70’s. He became a recluse and kind of creepy with the guns and so forth.

    Now I’m not implying that people with head injuries go on to murder or kidnap people – certainly it’s never occured to me. But it does go to show that just because it’s out of sight, it ain’t out of mind and perhaps things would have turned out differently for these individuals (not to mention their victims), if more had been understood at the time.

    Afternoon naps are the best thing in the world . . .

    Cos

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  4. TBI has an organic impact – that is changes in brain function – which include some behavioral responses. However there is also an emotional/behavioral response to a changed brain – such that even if there is significant ‘recovery’ the individual has been altered – they have been ‘out of their usual mind’ so to speak – and that becomes a part of their psychological experience and behavior. There are also other issues; increased attention deficits, slowed response, difficulty in tracking conversation and sensitivity to sound, impulse control – all of which, even if only experiencing minor changes – will produce an overall significant behavioral change. Neuropsych tests focus on very specific cognitive functions NOT on overall ability to perform – those are related but not the same. TBI individuals may also lack a degree of self awareness – again there is an organic form of this which occurs at a deep brain structure level and a more frontal lobe version which may be denial or may be some other mechanism that does not permit individuals to see how they have changed. Yet many people have a sense of watching themselves and thinking boy, that isn’t me.
    Self is composed of behavior, emotion, intellect, history, physical capacity and memory (and more) – tweak one thing and it all gets changed. On top of which are all the psychological issues one had before brain injury.

    The BIG difference is that many brain injury behaviors have NO true or direct emotional basis adn cannot be ‘treated’ or responded to as if they do – in fact doing so will make things more difficult for the survivor. The first line of approach must be to provide cognitive based management of behavior and skip the root cause. Since one cannot tell after an injury precisely what is emotionally driven and what is organic it is best to assume it is organic or a response to organic change and not probe for inner meanings – just deal with it and move on.

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  5. Interesting… where can I learn more about the organic changes and behavioral issues? This topic really fascinates me — it’s such a huge part of my own experience, and I’m sure it affects others, as well. Tricky, tricky, tricky… Any suggestions for what to read? (Since I’m starting to read again)

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  6. will get back to you on a recommendation

    One other point which I believe you have made but is also part of this – many people with tbi’s also find that they experience chronic pain – perhaps a greater sensitivity to pain – i can speak for myself that I never appreciated how exhausting and how stressful chronic pain was until I have had to live with it. There is no question that this too has behavioral effects.

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  7. and afternoon naps are great – also getting ujp really early, getting some work done and then laying down on the couch with the house clean and it’s raining outside and you can’t do anything else so you just HAVE to take a nap – with a cat curled up on top of you purring softly. Ahhhhhh.

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