TBI SoS – Restoring a Sense of Self after Traumatic Brain Injury – Intro

This is the first part in a multi-part exploration of sense of self and how it’s affected by traumatic brain injury. Note: This is the first version I created in January, 2011. I am currently writing a full-length work on it, and I am posting the sections here as I write them (click here to go there now).

Something has been on my mind a good deal, lately:

The Question of Self.

How we can lose ourselves after TBI, how we get separated from parts of ourselves — sometimes some of the most important parts of ourselves.

It’s been discussed on this blog, how loss of self is one of the biggest hurdles of TBI — it’s confusing, disorienting, frustrating, and is one of the biggest challenges to overcome. There’s no lack of evidence that it’s a problem for TBI survivors; “I just don’t feel like myself,” is a common complaint/observation from those working their way back from traumatic brain injury, and I’m no exception. For years, I haven’t felt 100% like myself, and despite my progress over the past three years of neuropsychological rehabilitation, I still don’t feel like I would like to. It’s like there’s something missing — some pieces that don’t quite fall into place.

And yet the question of losing (and possibly finding) a sense of your Self doesn’t seem to be discussed much, outside of the official literature. Thousands upon thousands, maybe millions, of people are struggling with this aspect of their life, and yet the disussion around it seems to be almost, well, silent.

Why? Well, it could have to do with the fact that so many traumatic brain injury survivors are so involved in just getting through their days, that they don’t have a lot of bandwidth to philosophize about their deepest sense of who and what they are. It’s tough to find the time to do personal development, when you’re struggling with things like not losing your car keys, being on time for important appointments, and paying the rent. And for many, the complications of navigating complex bureaucracy of government agencies, raising kids, putting food on the table, and figuring out how to hold down a job, makes the whole situation even tougher — all against the backdrop assumption that “it was just a bump on the head – you should be fine.”

To me, this is a problem. Here we have one of the most vexing and persistent issues of TBI, which causes all manner of suffering for survivors and their families, friends and co-workers, and yet who’s talking about it?

Well, some rehab folks are, apparently. They’re writing about it and talking about it in their scholarly journals. I find plenty of material when I google “TBI + sense of self”. And I’m about to start talking about it, too. This, to me, is a key and critical piece of TBI recovery — our sense of self, who we understand ourselves to be, and who we think we can become. It’s so central to our existence and our ability to recover, I think we owe it to ourselves to spend some time pondering this “gray area” that is perhaps the most vital aspect of who and what we are, and to what extent we bounce back from the problems life sends our way.

Read the next section >

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.

25 thoughts on “TBI SoS – Restoring a Sense of Self after Traumatic Brain Injury – Intro”

  1. BB,

    Funny, I was just pondering these questions yesterday (and this morning), this loss of sense of self. The more so, because I’ve felt it returning recently – a clarity of self like I haven’t had in years. I feels kind of delicate, like I don’t want to talk about it too much, but it’s definitely there.

    One thing – I banged my head, hard, the other day. I was very dizzy for a day or so (though this could have been fatigue from traveling, holidays, etc). Luckily, it was the top of the skull, where the bone is hardest. I still feel the bruising, yet in most ways I don’t feel different. I’m a little worried about it for obvious reason – man, could I not go through the last ten years again. Then again, everyone bangs their head from time to time. Any thoughts?

    Looking forward to more installments . . .

    Oh yeah – and Happy New Year!!

    T.

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  2. BB

    George Prigatano is a researcher who has studied self – (interestingly you mentioned him about 2 years ago in your blog) I have actually spoken with him about the topic because I was compelled by an article he wrote.

    However most of his research focused on moderate and severe brain injury, folks who lose ‘self’ and self awareness in a more concrete way than what I think you are talking about.

    I have thought a great deal about self – in rehab they tell you to accept the loss of your old self. After much consideration I feel that for many mTBI folks this is bunk – maybe that’s a bit harsh but in mTBI you are still ‘self’ in many ways – in fact the frustration is that you start off down a cognitive path that feels ‘normal’ and then there is a glitch and it’s the glitches that make things odd and frustrating and difficult. (I am talking after the initial period of cognitive recovery has passed – initially there is a more broad loss of self which is related but not quite the same).

    But you can’t ignore the large percentage of you that feels like you. I also believe that self comes from familiarity – and that over time, with practice a sense of self returns not because you have jettisoned ‘old self’ but because you are familiar with your own instinctive reactions, thought pattersn etc. I believe that we carry memories of our thought patterns so that even when they no longer function we can recall a sense of thinking differently – perhaps the feeling of being able to juggle numbers in our head or something like that.

    All people’s self evolves over time – in BI self evolves suddenly and immediately in a singular and dramatic way – so there is no gradual adjustment to the changes. And even the smallest of changes will alter the whole of thought – an injury in a single spot effects the way the entire brain will function – just like a sprained ankle makes us shift weight and posture. Those things feel odd and difficult at first, and BI folks are very attuned to their own awareness of inadequacies. But I agree with you – not as much is said on the acquisition of new skills or abilities or focuses. Many BI folks come to learn to view themselves in a healthier way, or they feel more empowered because they learn to overcome. Other s develop their creative side or become more patient. This is not ‘BI is the best thing that ever happened to me’ but rather this is evolution of self. The positive aspect is important however and not focused on enough.

    More to say but gotta go right now.

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  3. COS –

    You banged your head and at this point you cannot unbang your head so worry isn’t useful. Do not – for a while – do anything that puts you in a position to likely bang it again. Get rest if you need it. If you feel like you have had a set back see a neurologist who knows TBI – but you know the drill and it is not likely to be like the past 10 years. But be careful.

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  4. Hey T – Happy New Year to you, too!!

    Banging your head – I really hate that. I had a fall last winter — went down some stairs. Didn’t hit my head, but I jolted myself pretty badly, and I really wrenched my back, threw my lower body out of whack. Went to the chiro, and the first thing they said was, “What did you DO to your self?” Ha.

    Seriously, though, we must be on the same wavelength, because I’ve been thinking a lot about how I canNOT afford another TBI. Even a little one. I have no idea what would happen, if I hit my head again. On the up-side, my current fund of knowledge about head injuries could stay intact, but the thought of the mood/behavior issues, plus the concentration, fog, all that… not to mention the pain… no thank you.

    Yeah, everyone bangs their head. And I think it’s good to keep things in perspective and not over-think things. When I fell down the stairs, at first I thought I was okay, then I started to get nervous and feel weird and wonder if I maybe hurt myself but didn’t realize it… And before you know it, I’m in this anxiety attack, calling my neuropsych in a panic. They had to talk me down. It wasn’t pretty – I was a mess. And then I had to face my neuropsych afterwards. More embarrassment. They didn’t make a big deal of it, but how humiliating.

    I think sometimes the most dangerous thing is how we react to our “events”. I know it’s true for me. When I over-think things and over-react and get all bent out of shape, it’s even worse than the event itself. Like when I was having some crazy flashes of rage/panic/emotion a few years back that had me spasming and twitching almost like I was having a seizure. Had tests. They found nothing. Now, after consciously working on relaxing and managing my panic/anxiety, no more of those spells.

    Even so, I can go off the deep end real quick — like instantaneously, if I don’t watch myself.

    So, don’t worry about that bump on your head. Just take it easy, take care of yourself, and don’t let it throw you. If you’re not experiencing crazy weirdness, just chill and give yourself time to get back. The holidays took A LOT out of me, and I didn’t even travel. Still working my way back – if I can sleep, it will be totally awesome — though I did get 8 hours last night. Woo hoo.

    Anyway, Sense of Self… it must be a theme, these days. You’re not the only one who’s mentioned thinking about this a lot, too. And yeah – in some ways I do feel myself coming back a bit. Not exactly to my OLD self, but to my OWN self. Like I am getting to a point where I’m independently defining who I am and what I’m about, instead of constantly reacting to other people and events and letting them define me (usually in really crappy ways). I’m still working out my ideas around this, but I’ll be writing more about it, soon.

    Feel better and take good care.

    Cheers
    BB

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  5. m –

    I became a big fan of Dr. Prigatano’s work, several years back, and I found a lot of what he wrote quite interesting. I kind of lost that track – maybe I need to find it again.

    Yes, more to say, but gotta go.

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  6. BB – thanks for the comments. Well, a week later and aside from some lingering dizziness (which could just as easily be from fighting the cold my girlfriend has) and a mild ache where I bumped myself, I don’t think I did any real damage. But yeah, it does make you think – What if I DID have another TBI? Could I go through all that again, even knowing what I do now?

    Looking forward to more of your ‘sense of self’ posts. I find myself going through this same process of ‘independently defining who I am and what I’m about, instead of constantly reacting to other people and events and letting them define me . . . ” Interesting.

    T.

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  7. T –

    My neuropsych is big on helping me not read into situations things that aren’t there. I tend to be so hypervigilant about, well, Everything, that it’s easy for me to go off the deep end for no good reason. The reason seems good to me, but I’m mistaken. For me, worry and concern take up so much of my mental resources, they really cut into the reserves I have — which are below what I’d like (and used to have). So, I have to talk myself out of making up meanings that are bad, and focus on making up meanings that are good. Like — Well, if I do hit my head again (and there’s always that chance, being human and all and living an active life), I have a deep and broad amount of knowledge about this condition, and I also have people around me who are familiar with this and can help me. Most importantly, I know where to turn for help. That’s key.I might be impacted more than others, considering my history, but right here and right now I’m fine, and I have access to information about what to do if something does go terribly wrong. Plus, I have people keeping an eye on me to make sure I’m not straying too far afield.

    If I started losing it again, they’d definitely tell me. And they’d probably put it in a TBI context, which helps to explain things.

    Of course, this is all best-case scenario stuff. There is always the chance that something terrible will happen. But that’s true of anyone. I can’t let that stop me from living my life.

    I’m continuing to work on the “sense of self” piece. Just posted a new installment. I think I’m onto something here. Probably what lots of other people are thinking and already know, but I’m saying it in a way I can relate to and understand, so that’s something different.

    Cheers

    BB

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  8. I hope you don’t mind that I am so drawn to this blog although I may have never had a TBI. I think being aware of other people is so very important. In recent years, I have had so much of a sense of self and in some areas it is very positive. Did I ever mention that I like to study identity. Now that I have a new computer, I hope to subscribe to my online library at Questia and resume reading in the Psychology book on identity. If I feel it is appropriate and not too shy, I am going to ask the professor to resend the files he sent to me on his research on identity that I could not open because of my old computer. I am shy that maybe he won’t send again.

    So with this lead up, what do I have to say about identity lol. I have hoped that I might learn something to help people in that path. I have read that some types of Buddhism teaches there is no sense of self. I think they say it is always changing. And yet, I do think people as a whole tend to have a view of self although it may shift given the circumstances in a given day and through time. I have read about borderline personalities that you could talk to them all day and not have a sense of who they are as they lack that sense. However, I am not sure if those findings have changed but in recent studies it appears that the prognosis for borderlines is much better than supposed.

    I look at my former self in my twenties and that self seems so removed from me in so many ways. I recently reconnected with people from my High School by joining FaceBook. I wonder how much maturation has taken place. Maturation can be so cool but it is sad to have the loss of innocence. I had things happened that were bad but had a period prior to my mission that I was so very innocent. Not getting the help I wanted it when I wanted it, gave me edge. My condition has given me edge as you have to close down some. But I like anything that brings out the good in me.

    I do think that positive feedback is so important for a sense of self. There are things that I have internalized that I like about myself that people had complimented me on when I was in high school and like many still forming much of my identity.

    I could expound more but I was actually planning to expound on another topic, which I probably will return to on another day.

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  9. Hi bkb –

    No problem that you’re coming to this subject from a different perspective. Although I do focus on topics from a TBI point of view, I do believe that many of “our” issues affect others as well. So, if you find what I write helpful, then that’s great.

    I think you should ask the professor for that book again. I don’t think it will reflect poorly on you if you ask – rather, it will make you look like you are genuinely interested, and I believe she will respond positively to that.

    Good luck and enjoy your new computer.

    BB

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  10. When I first read this blog, five items dealing with TBI were listed and discussed. When I returned to this blog I could not find those five items again. I would appreciate it if anybody could email me the blog with the five items included.

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  11. Hi John –

    You can probably find them by searching for some words you remember. Also, try the archives links on the left hand side, down the page a ways. If you know when you last visited, you may be able to locate it by the date.

    Good luck!

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  12. Loss of self is the greatest struggle I have with TBI. My husband is a totally different person than the man I married. aside from the daily struggles with memory and daily life he has lost his essence. The stuff that made me fall in love with him. I see the person that looks like my husband, but I am so sad that he is gone. Seven years of hoping, praying and doing everything I can think of to bring him back, only to come to the point of coming to terms with the loss for both him and me.

    -Dyanne

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  13. I’m sorry to hear that, Dyanne. It is a real concern for many people. In some cases, it comes down to moving on and finding the new person who is there, when the person who was there is no longer available.

    For myself, I still don’t feel 100% like “me” — it always feels like there is something missing — but I’ve managed to put together a life that has enough of my own uniqueness, that I do have a life again.

    Everybody goes through it differently. I wish there were an easy way, but it seems we’re all destined to have to find our own way(s) in these things.

    Best of luck to you and your husband
    BB

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  14. Loss of self has without a doubt been the worst part. It is the loneliest part and the most confusing. It can also be subtle to outsiders if you are in a place that people do not know you well. I see pictures of me after the coma time and I look well and I am dancing having fun. But I do not know that person. It is 1992. Why was I not trying to see a single world cup soccer game that Spring? Why do I have a wintry jacket on and shorts? Why am I dancing in public if I don’t like dancing? Why am I smiling? My life had just took the most horrible turn for the worst and would lead to self-destructive behavior and more brain insults and stops and starts and so many broken hearts and I feel like a loser who wished he had never woken from the coma,

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  15. Well, you’re definitely not alone. Waking up to find yourself living a life you don’t recognize happens all too often. When I am at my lowest, feeling damaged beyond repair, I remind myself that my difficulties can make me more compassionate towards others and make me better able to act like a real human being.

    When I’m not being a total a’hole, that is….

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  16. BB, I want to laugh at last line. And most humor is true, but do you really see yourself being total a’hole much? I no longer care if I sound retarted. I have learned best to get clarity with someone that matters. Your blog matters. Maybe the last line is just keeping it real?

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  17. Speaking of the compassion thing, I’m going to do rather than talk/write and see if I can be compassionate in action and be brave enough to see people.

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  18. Over the past twenty years,I had a decent amount of self-compassion. The last five years, it disappeared. I allowed people to take it away. Your comment here is very imp. Have good day.

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