One thing they never tell me about TBI – but they should

WTF is going on in there?

I had another irritating session with my neuropsych on Thursday. We’ve changed the day of the week we meet, and now… instead of meeting early enough in the week for me to be my normal self, I show up at their office like a raving maniac, in a fine style they have rarely seen.

These days things are different for me, because I’m pushing up against the envelope of my comfort zone at work… and I am tired. So tired. I’m like a friggin’ lunatic, by the time I get to my session. My neuropsych can say one thing — one thing — to me, and it sets me off. I’ve got this hair-trigger temperament, by Thursday night, and that’s usually about the time when I realize how screwed I am, how little I’ve accomplished that I needed to get done, and I’m starting to panic about the next day.

My neuropsych has never seen me this way, so maybe this is for the best. They seem to think that I have this even-keel, mellow personality that’s all thoughtful ‘n’ shit… Like nothing can get me riled, I’m unflappable, and I’m in command of my inner state at all times. Well, let me tell you, by Thursday night, if I’ve had a crazy week, all bets are off. And I’m ready to rumble.

We’ve “gone ’round” a few times, now. This week and last. This individual jumps into my train of thought, trying to “correct” me, and I’m seriously not feeling it. I’ve got no patience, I’ve got no open-mindedness, I’ve got no extra cycles to put up with B.S. And the other thing is that my neuropsych is tired, too, so they’ve probably got their own issues going on.

Especially when I show up at their office, having trouble with my excellent life, when — seriously dude — I should be fine. But I’m not.

No. I’m not.

Because I’m not myself. I’m someone else. And while I should be fine — with a good job, a house, a long-term marriage, and a couple of cars in the driveway — I’m not. It’s not like I’ve had half my brain removed, or I struggle with constant seizures. It’s not like I was ever in a coma, or I had a spike sticking out of my head. I never had to have part of my skull removed to relieve the pressure from an impact.

I’ve just had a bunch of mild TBIs — concussions — with little or very brief loss of consciousness. I “should” be fine. But I’m not.

And that’s the thing nobody ever tells me about mild TBI — how it’s the gift that keeps on giving. How a simple fall down some stairs can send me down a weird, dark pathway into a forest with patchy moonlight filtering through the trees. How it messes up my head in very unique ways that are pretty much hidden to me, until I bump up against a situation that “should” be easy for me. But isn’t.

To me, years after I started down this path of actively recovering from all my brain injuries (9 “mild” ones, by my count — probably more), what’s clearer to me than ever before, is how TBI just never quits. It sets things in motion that are invisible and disruptive, and if you aren’t vigilant and if you don’t develop strategies for dealing with all of it, your condition becomes chronic and worsens over time. The simplest things that should be so clear, confuse you. You don’t recognize yourself. You’re “not quite right” in the eyes of people who knew you before. And it can be well nigh impossible to figure out what the hell everybody is so upset about — because from your point of view, everything seems fine. It all seems fine.

TBI never quits. That is as true for Mild TBI as it is for any of the others — perhaps even moreso for Mild TBI. The changes that take place in the brain affect the mind, the body, and the way the two work together. And over the long term, these changes keep happening. And with mTBI, the issues can be so irregular and “spotty”, and you can be so busy just living your life, that you don’t see the warning signs — until it’s too late.

And you’re in hot water again.

What nobody ever seems to mention, is that mild TBI can become a chronic condition that progresses over the course of your life. It affects every aspect of your being, and unless you can figure out that that’s actually happening, and learn to manage it, the long-term prognosis can be sketchy. Even, well… bad.

I don’t know why nobody ever talks about this — at least, they don’t talk about it within my earshot. Traumatic brain injury symptoms often clear for people. But for some, they become chronic… they don’t go away…. they morph into something else over time… and something else… and something else…. and they can turn you into a person you hardly recognize and don’t exactly understand — in place of the person you thought you were.

Maybe people do discuss it, but it never trickles down into the general populace.

Or maybe it’s that I’m so busy living my life, and I’m so busy trying to figure things out, that I don’t have time to seek out the inner secrets and latest cutting-edge research about TBI recovery. My neuropsych has certainly not discussed this with me at length — probably because I get really upset and bent out of shape when they start to talk about TBI and how my brain has been affected by it. Strangely, although I can write about it freely here, I have a hell of a time discussing it with my neuropsych. It freaks me out. Way too much. So, we don’t talk about that much — just about how I can build the skills to better live my life.

That’s actually working out. It’s a good strategy. I have this body of skills and approaches built up. At the same time, though, it feels like they’re built around a shell of a person — I’m the outside appearance of myself, but inside, it’s hollow and dark and empty, and I don’t know who’s there anymore.

I try not to worry about it. I’ve got to get on with my life and live it, the best I know how. But when I’m tired… and when I’m tired of being tired and not knowing who the hell I am… this comes up, front and center, and it works on my mind like nothing else.

Of all the things about mild TBI, I’d have to say, the most damaging part is having lost my sense of who I am, what I stand for, and where I fit in the world. It’s a casualty of the injury, and nobody seems willing to address it — as though ignoring it or “working past it” is going to solve things.

Oh hell, I’m just going to write a book about it. For TBI survivors, their loved ones, and for the caregivers who know so much — and yet so little. Losing your identity and having to reconstruct it again, despite being “fine” in the eyes of everyone else, is a problem. It takes too many of us down. It’s an issue. It’s a problem. And I don’t feel like sitting around bitching about it, anymore. It’s time to do something about it.

In fact.

Onward.

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.

10 thoughts on “One thing they never tell me about TBI – but they should”

  1. Every time I read a new post of yours, I find myself nodding in agreement.

    I think one reason they never talk about the changes going on for possibly a lifetime is that it’s all so incredibly stressful and depressing. I mean, changing environments are a nightmare after TBI anyway, but to talk about how you can’t even count on your own failings to stay the same – that’s almost unbearable. And yet you do bear up, and you do make the constant little changes to cope. It’s just that it’s so exhausting.

    But denying those changes over the years also makes for the offhand remarks about how “You look okay” or “You don’t seem to have any problems” or “But that was more than a year ago!” Yes, because what I completely understood 6 months ago is what brings my brain to a grinding halt today, but no one seems to understand that.

    My only bigger gripe is people that believe an average or higher IQ means your brain is working fine. It’s not. It just means you’re able to cover better when it goes haywire. You can think of better excuses for why you need to leave the store NOW, and use better words when you get agitated and cuss someone out.

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  2. Sounds about right to me — the disconnect between higher IQ and the reality of the situation. TBI is a chronic condition, and it sets things in motion that just don’t always stop. And you’re right about it being exhausting… Just gotta rest up, and try again the next time.

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  3. I think this is a great and important blog post – you definately talk about something extremely important here! I have mTBI and was on a train today. Everyone was either reading, watching netflix or chatting. All I could do was sit still with my sunglasses with ear plugs – we are reminded all the time of our limits! And who would have known that my concussion wouldn’t go away? But – we live with it, for me blogging also helps alot like with you I asume. Writing about it have made it easier for me to accept my concussion and stay positive and not loose my insanity 🙂 Hang in there, cheering for your book :-)!!

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  4. Thanks – I hear you about the train. Sometimes you just have to “hunker down” till the situation passes. Sounds like you made it to the other side.

    Yes, blogging helps. Just getting it out and on the screen is helpful. It does keep us sane — especially when others find us and let us know that they’re on the same wavelength.

    Thanks again – be well.

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  5. we have so much in common. For me it was a mild tbi in 2004-6, I cant remember. But it totally changed me into an autistic, blurting out foolish things, one who had no advocate. I was so unaware. And it was not that I was bad as much as it was I had been brain injured. And then came the years of so many people just looking at me as if I were a demon of some kind because I said stupid things. I was brain injured and somehow I need to apologize. It feels backwards and I don’t even know who I need to apologize to. Automatic kindness and smile is really counter-productive when one is lost. Lesson. Hide from everyone until brain heals some.

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  6. Hide from everyone until brain heals some… that sounds about right to me. Thinking back on my life and how I’ve adjusted to living with all my TBIs, it occurs to me that in some ways I have not come out of hiding — and maybe never will. Some things are just too hard for me to deal with, in the real world.

    Like how slowly my brain responds to things. It’s just absolutely defeating. So many conversations I seem to be “showing up” for… but I only get half of what’s said – or someone says something to me, and I get half of it, then I have to go back and think about the rest of it later, and when I “surface” again, they’ve moved on and think they know how I feel or what I think or how I am… but it’s nothing of the kind.

    I never got the chance to explain. Because they thought we were done discussing, and they’ve moved on.

    And left me behind.

    As you said, sometimes it’s better to hide.

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  7. I think that tbi survivors can only understand all this subjectively and no other without tbi can understand this in their learned language. After so many years experience only we can tell this. They are basically Psychiatrist at last though Neuro. So they think in Psychiatry language. What I have understood that it is not possible for them to think objectively what we feel inside. It’s o.k.

    It’s their profession and they have to attend continuously like a family member along with us to know it.

    Even then it is difficult for them. O.K. At least we are together to tlk and feel the same.

    Thanks a lot at least I can read my thoughts though I cannot put up in English which is not my mothertongue. Best luck for our future.

    Yours, Friend Really.

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  8. I think you are right – TBI is the sort of thing you can only truly learn about from experience. I wish it weren’t necessary, but I think you’re correct. Even my neuropsych, who has spent many, many years treating folks with TBI, cannot seem to grasp some simple concepts I encounter every day — like the sensitivities, the emotional volatility, and how deeply frustrating it is for me, when I’m supposed to be “mildly” injured.

    Thank you for sharing your thoughts. Even if it doesn’t seem 100% like what you intend. English is my mothertongue, and half the time I don’t feel like I’ve truly communicated what’s on my mind. 😉

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  9. Thanks broken brilliant, that is so incredibly true. I feel this regularly, after 15 years, that i have been shaped into someone else without my permission, someone i dont recognise. I cant think who other people believe they are talking to, but they are very ready to assure you you are fine when they havent the faintest idea. it makes you lonely, it makes you scared. In the end I am realising that the neuropsychologists, though they know so much more that everybody else, dont realise certain things, or maybe they have a little idea of it, but dont really know what to do. when youve worked so hard to help yourself for years you do feel cheated when you can sense you are getting worse in some ways. I got Jeffrey Sebell’s book ‘Learning to Live with yourself after brain injury’ recently. I loved the truthfulness and fact that he was writing about what we need to know and no-one writes about. but i dont seem to be able to implement things in my life that are written abstractly and philosophically like this. we are all different and need to keep looking for what works for us. one thing that can help is just going and doing something i want to do, forgetting the thinking and the lists. today i painted to clear a head that had gone into obsession and overdrive, and was in flow 🙂 good luck everybody.

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  10. Thanks for writing. It is so true that we all need to find out what works for us. The funny thing about this blog, is that a lot of times, I’ll write about something that works for me, or ways I’m seeing progress… and then not long after that, I’ll lose focus on that, and I’ll become interested in other things. Or I will completely forget what I’ve written about and what worked for me before, and I’ll go back to doing the things I know don’t work.

    And I’ll have to learn all over again.

    Oh, well, I guess it keeps me on my toes. But it is a bit discouraging, and I feel like I don’t so much make continuous improvement, as go through recurring cycles of certain improvements that get little over time. It’s not a straight line. It’s a repeating theme. And I really have to concentrate on being grateful, so I don’t get down about everything.

    Well, it’s Saturday, and I’ve got free time ahead of me, so I’ll wish you well and hope that you have a nice day… whatever may come.

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