Loss of Self after TBI needs to be taken seriously

all-of-a-suddenEvery now and then, I come across a mention of the loss of Self after brain injury. But not all the time. I come across mentions of poor judgment, poor risk assessment, diminished coordination, sensory issues, mood changes, depression, and a host of other cognitive-behavioral issues.

But not much discussion of the Self – of your Sense-Of-Self.

I distinguish between Self and Sense-Of-Self, in that the Self is a constantly shifting entity — our identities are in constant flux over the course of our lives. But our Sense is what we actually rely on. Our Sense of our Selves is what makes it possible for us live fluidly in the world.

Our Sense of who we are is what I consider a “precursor” to how we live our lives. When it’s stable, it allows us to plan and take action, without constantly second-guessing ourselves. A stable sense of who we are and what we are all about makes it possible for us to simply live our lives. The feeling that we can rely on ourselves to respond in predictable ways that are consistent with our deepest values and beliefs is at the very core of it. Most people take it for granted. But when TBI / concussion sets in, it can have a profoundly disruptive effect.

All of a sudden, you don’t know who you are. You don’t recognize your words, your thoughts, your actions. No matter what you do, things don’t seem right. Even if you are doing things that have been familiar for a long time, in situations that you know well from years of practice, a disruption to your Sense-Of-Self can turn even the most familiar activity into an emotional and logistical gauntlet.

I’m not talking about having trouble navigating new experiences. I’m talking about having long-familiar experiences suddenly seem brand new. We save a huge amount of energy, just by repeating what we know. Our systems are designed to acclimate and then follow the “ruts” we’ve grooved for ourselves. It cuts down on friction, it makes our lives considerably more fluid. But a TBI can disrupt so many parts of a once-fluid process, that even something as simple as making lunch or going for a walk, can become a trial-and-error process.

It’s a real Trial… that’s full of Errors… the kinds of errors we never used to make — and we don’t feel we should even make.

The smooth processes we developed along the way of maturing to adulthood… and then on through the rest of our lives… are so invisible and automatic, we never realize just how important they are. We have no idea how central they are to our identity, our ability to live fully in the world.

Only when they go away after TBI, do we realize just how important they were. But we’ve long since lost the orientation that lets us understand them, one piece at a time.

If you’ve ever tried to give people exact instructions on something as simple as making a peanut butter sandwich, you may know the frustration of losing the fluidity that should be central to your regular life. After concussion / TBI — especially for those who have excelled at their chosen pursuits — the steps for doing things are different. Maybe some of the steps have stopped working entirely, and you have to figure out something different.  So many the skills you once knew by rote… now you don’t. And the fact that they should be easy — but aren’t — is the unkindest cut of all.

And you have no idea who you are. You don’t trust yourself anymore. You may not feel like you even know yourself anymore. You’re cut loose… lost… and you have no idea how to get yourself back. All you know is, things are weird and slow, and you don’t know how to make them stop being weird and slow. Some days are better than others, but they’re definitely not like they used to be.

This is not a small thing. It’s a terrible loss. It’s not just a “narcisstic injury”, it’s a blow to your very existence. It threatens everything you do on a logistical basis — not just a psychological/emotional one. It literally makes it harder to function.  And professionals who file it neatly under a psychological disorder are missing the point.

We literally cannot function — because we don’t have the clear sense of ourselves that’s necessary to do so.

And I believe it sits at the very heart of the struggle of many mild TBI survivors’ struggles.

I also believe it sits at the heart of “self-destructive” behavior exhibited by folks recovering from concussion / mild TBI. I believe it’s what drives us to make the risky choices we make, to take the dangerous actions we take. We’re not feeling bad about ourselves and trying to punish ourselves. We’re trying to help ourselves, by using stress hormones to regular our systems and feel like ourselves again.

As a onetime top performer in my field, nothing has been more debilitating for me in the past years, than losing my well-honed edge… losing that sense of myself as being capable and competent. I was once an important contributor in my field — on the front lines. And I had a sense of flow and fluidity that was second to none. I could just do what I did, without concern for the outcome, because my skills ensured that even if it didn’t turn out 100% right the first time, I could continue to have at it — and eventually things would be set right.

After my fall in 2004, that all changed. No more confidence, no more innate skill. Things got rearranged, and what used to come so naturally to me, now had to be thought through. A lot. Painstakingly. Painfully.

It was crushing. And the only thing that made it better, was a constant “diet” of stress and risk and danger, which kept my system primed for action with all those stress hormones. Adrenaline. Epinephrine. Norepinephrine. And more. Heaven only knows what else.

Of course, it took a toll. It delayed my recovery. But it was the only way I could figure out how to get myself feeling regulated again. It was the only way I could have some sense of control in my life. I know I’m not alone in this. Countless concussed folks “bounce back” from their injuries too soon and dive right into risky behavior that’s misunderstood — and mis-treated — as a sign of self-destructiveness, bipolar disorder, or some other mental health issue.

It completely misses the point. Because people don’t understand the nature of TBI and how it affects us at a core, functional level. They’re quite invested in the standard-issue approaches, and the fact that those approaches don’t produce the kinds of results they seek, seems to indicate a problem with the patient/client — not the approach.

In many ways, we’re still in the dark ages with this stuff. Still blaming the issues on the wrong danged thing, still looking for answers far from their actual source. This may change… if I have anything to say about it. Of course, I’m only one person, but with any luck, others will pick up a baton from the pile that’s lying in the middle of our proverbial living room, and carry it along with me.

One can hope.

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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.

14 thoughts on “Loss of Self after TBI needs to be taken seriously”

  1. This made me cry. I think it has been a year, not sure for me. My injury ended up triggering a brain disease so I wonder if i will be better in 10 years or if it all goes downhill from here? I’m lost, so lost and theres no one to talk to. they all want the old me back but no one wants that more than me and they get frustrated and yell sometimes like i’m not even trying. but it will be okay. i will figure out a way to get round this brick wall. the alternative is unthinkable.

    thank you for this blog. i don’t feel so alone now that i read it.

    Liked by 3 people

  2. I’m sorry to hear that. It all just takes time. But sometomes that doesn’t even fix things with others. People really need to be educated – I had to get help from my doctor explaining to my family. After that, they felt better. But it was no fun while they were givig me a hard time. They have pretty much always done that. I hope you can find some peace in all this.

    Liked by 2 people

  3. Thanks for your kind words. It’s just me and my kid, no other family, really, and I can’t tell the kid everything. She’s a teen but I’m just not ready yet. It stinks, cause she’s pretty well taking care of me now when I should be taking care of her. Got a few friends that help or try to. I feel half useless these days but you give me hope. Thanks.

    Liked by 2 people

  4. Well, I’m glad you don’t have a whole gang of family giving you a hard time. At least your daughter doesn’t knoe. If she did, that would be hard to take for sure. Give yourself a break. Lots of parents need help from their kids. I personally believe it helps the kids much more than we think. Never easy, but truly valuable skills come from that. Be well.

    Liked by 1 person

  5. It took me over 20 years to get my old self and new self on the same page. I would like to have all the time I was preoccupied with thinking about the old me and new me back. It’s just a part of the recovery process and something that happens to all of us after a brain injury. Getting too caught up with this can hold us back if we let it. Now the old me and the new me are the same me!

    Liked by 2 people

  6. I agree. It can consume too much time. My main concern is with the (mis?)diagnosis of sense-of-self issues as self-destructive tendencies, which can steer mental health folks in the wrong direction and prolong recovery. It can be crazy-making. I think a much more important consideration — which I will write about soon — is safely and effectively restoring a sense of self for the person who’s lost theirs. First we have to take it seriously. Then we need to approach it constructively. Dwelling about our losses tends to be counter-productive, as you’ve said.

    Liked by 1 person

  7. Well, I’m glad you don’t have a whole gang of family giving you a hard time. At least your daughter doesn’t knoe. If she did, that would be hard to take for sure. Give yourself a break. Lots of parents need help from their kids

    Like

  8. I agree – it sucks – and it needs more “ink” – exposure in writing. Happens with PTSD too, even without head injury involvement.

    I don’t know if it’s better or worse when you never knew anything other than what you describe as a “shifting” sense of self, but many ADDers (and others with Executive Functioning struggles of other flavors) have been similarly challenged – and for much of their entire lives.

    When I first started therapy – trying to “fix” what was wrong with me before my ADD dx, btw – my question was always, “WHICH self?” The professionals I consulted for almost a decade were essentially worthless in most regards – didn’t even catch the ADD and didn’t know anything about it once I did!

    My problem was that even basic skills seemed to vary with environment (sometimes widely) – as did my self-respect, since I knew I was highly intelligent but unable to “prove” it in some contexts. Negative comments always made things SO much more difficult – and many ADD/EFDers have heard little else. Individuals who don’t test well don’t even have evidence of their intelligence and are positive they are stupid — an erroneous opinion affirmed way too often.

    I have since discovered that short-term memory deficits are behind many of the struggles – which is always a tough sell, since few realize how impt. short-term memory is to calling up long-term skills and linking them for use. (How would you add, as an over-simplified example, if you lacked the bandwidth to “carry the one” when required?)

    Anyway, struggles like the one you describe so well, BB, are what led me to found the field and why I blog, even though it’s considerable time I cannot use to make a living.

    I’m going back to link to one of my older articles that covers this topic in a different manner [Remembrance of Selves Past]. Watch for a ping.
    xx,
    mgh
    (Madelyn Griffith-Haynie – ADDandSoMuchMORE dot com)
    ADD Coach Training Field founder; ADD Coaching co-founder
    “It takes a village to educate a world!”

    Liked by 1 person

  9. Thanks for writing. I find it works better for me, if I “get ahead” of others’ cluelessness. It’s taken me years to figure this out, but if I tell people up front what they can expect from me – and I phrase it in a way that doesn’t make it sound like a deficit, I can get by pretty well. The thing is, making sure I come across as confident and sure of myself. The slightest sign of insecurity sets people off and turns them against me.

    I had to learn that the hard way. A lot of times. But now, I have my “confidence schtick” and I do that.

    Liked by 1 person

  10. That is a flavor of “normalizing” I use as well. It only backfired ONCE, in an “all-expert” virtual committee that documented exactly what I told them, then presented the “evidence” to kick me out (ie., I am willing to go along with the meeting time that works best for the majority, as long as you understand I cannot reliably meet at that time each and every week – if not, I need to block consensus, holding out for a time to which I can commit). Nasty!
    xx,
    mgh

    Liked by 1 person

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