After TBI / concussion – How does it feel to lose your Sense-Of-Self?

If you're used to spinning fast, and you get off balance, things can get messy
If you’re used to spinning fast, and you get off balance, things can get messy

One of the things that puzzles many a healthcare practitioner and clinician about TBI / concussion, is the incidence of long-standing issues after the injury “should” be healed. For the vast majority of people who get clunked in the head and feel woozy (and/or out-of-it and/or uncoordinated and/or extremely moody) afterwards, healing comes within a few weeks.

It typically takes the brain 7-10 days to get the gunk out and restore its normal energy (see The New Neurometabolic Cascade of Concussion for in-depth discussion), so you can pretty much expect the first couple of weeks to feel strange. But after that, 80-85% of concussed folks heal up and get on with their lives just fine.

But for a number of other people (like me), symptoms persist. And that’s a mystery. At least, for most folks.

To me, it’s really not much of a mystery, and I completely understand why people like me struggle and suffer from post-TBI symptoms. It has a lot to do with the stress that results after a brain injury (especially a “mild” one) that disrupts some fundamental functioning in your system. Having your brain work even just a little differently than before — especially if you were a high-performing individual before your injury — can be so profoundly disruptive to your daily functioning, that it freaks you out.

It’s not an obvious freak-out. It happens silently, behind the scenes, in the quiet of your own mind. It’s more of a feeling, really, than a tangible thing that others can see and hear and detect. It’s a mute welling up of trepidation… reservation… uncertainty… that happens over and over and over again, day in and day out. It throws you off. It disrupts your rhythm. And if you are accustomed to working at a brisk pace, doing demanding things all day, every day, that kind of disruption can be brutal.

It’s like being a piece of pottery on a throwing wheel. You’re accustomed to spinning fast, but you’re suddenly off-balance. And the results can get messy. If you’ve ever thrown pottery on a wheel, you know what I mean. The faster the wheel goes, the more it will be affected by being just a little bit off-balance.

Nothing throws you off like a “mild” TBI. A concussion is “just a bump on the head”, but it affects so many parts of our systems, that you’ll definitely feel it. And if you’re used to being always on-the-go, always active, always involved, always performing at a very high rate, even the slightest disruption to your functionality can be a real problem. It’s like a grain of sand that gets under the base of a lamp. When you pull the lamp across a wooden table, it can score the surface pretty badly. And if you do it often enough, it will do some serious damage to that table.

“Mild” TBI / concussion gouged-woodexperiences are like little grains of sand in our systems. They shouldn’t be such a big deal. They really shouldn’t matter. They’re just little things — why would we get so bent out of shape about them?

But for those of us who have been top performers, even the slightest disruption can be unsettling. It’s stressful. And if you get unsettled often enough, the stress can build up, and it never really gets dealt with — because, after all, there’s no apparent reason we should be stressed from a “mild” injury, so why should we deal with it?

It’s cumulative. And it can become devastating. Your brain doesn’t quite understand what’s happening. Your system is getting increasingly more stressed, and yet it doesn’t know why that is. The biochemical sludge from ongoing stress keeps building up and accruing… and as a result, your entire system gets stressed and freaked out.

For no apparent reason.

And that’s crazy-making.

First, you can feel like you’re losing your mind, because something doesn’t seem right. Second, your stressed system is actually preventing the brain from healing up by re-learning and re-adjusting to the different ways it needs to do things. Third, you get no help at all, because very few people actually understand what the heck is really going on with you — and because your brain has been impacted, it’s extremely difficult to explain to others just what’s going on with you.

So, you’re sorta kinda screwed.

And you lose yourself. You lose your Sense-Of-Self. You don’t really recognize yourself anymore. You don’t feel familiar to yourself. Your thoughts feel like they’re someone else’s. Your life feels like it’s someone else’s. You don’t understand why you’re doing and saying the things you are — and if nobody has explained the mechanics of TBI to you, then you really don’t know why anything is happening the way it is.

The usual ways that you always functioned before are different. They are no longer familiar. They are no longer comfortable. The things that used to come second-nature … don’t. You have to think about so many things that used to come easily to you, that used to be reflexes. The patterns that you used to live by… they’ve evaporated into thin air. And you’re left on your own. To figure it out. On your own.

sludgeAnd so you’re walking around in a constant state of agitation and stress, because something’s not right, and you’re not getting the help or understanding you need. Your brain is laboring to make sense of things, but your biochemistry is conspiring against it, marinating it in a continuous bath of stress hormones and frustration. Your brain needs to learn and heal and retrain itself, but the stress is literally preventing that from happening. And you’re developing PTSD, for no apparent reason.

It was “just a bump on the head” so what’s the problem?

Eventually, it can get to the point where you don’t even recognize yourself, anymore. Nothing feels familiar, nothing feels sane, and you’re just faking your way through your days. Even the things you still do well, might not seem like you’re doing them at all. And the things that others believe you’re doing better than anyone else… well, that can feel like an act.

And all because of a mild injury that most people can get over in no time.

Personally, I feel that folks who are on the high-performance end of the spectrum are more likely to experience persistent problems after a concussion or mild TBI. Folks who aren’t highly tuned and highly sensitive aren’t necessarily going to notice changes to their subtle functions. But sensitized and high-performing people are. And unfortunately, not every doctor or clinician you have access to is one of the high performers who understands.

Some days it feels like this
Some days it feels like this

Worst of all, is when you deal with people who aren’t on the high-performance end of the spectrum, who tell you you’re “functional enough” and should just be happy to have what you’ve got. I’m sure they don’t realize it, but that’s about the coldest, most cruel thing you can say to someone who’s struggling with a loss of functionality after brain injury. I’ve been told that — directly and indirectly — countless times… either by clinician friends who tried to reassure me that I was “so smart”, as well as providers who told me that I should be happy that I’m not worse off, because so many people are.

Best case, they downplay your issues and try to build you up by making you comfortable with mediocrity.

Worst case, they accuse you of being greedy and dismiss you as either grandiose or narcissistic.

It’s lonely out there, when you’re used to performing in the high end of the spectrum, then get knocked down a bunch of levels by a TBI. And it’s so alienating and debilitating to never get the help you need to get back to a place where you simply feel comfortable with yourself again. It’s hard enough on the inside, but the conflicting messages from the outside make things even harder to sort out.

It’s taken me over 10 years of constant, constant, focused work, to get back to a place where I feel comfortable in my own skin. So many years were spent struggling with demons I couldn’t name, and certainly didn’t understand. I wish more clinicians and practitioners could understand the vital connection between changes to personal performance / experience  and ongoing difficulties from mild TBI / concussion.  It might help them A) better grasp the very real challenges we face, and B) help us get to a place where we recognize ourselves again.

Here’s hoping this can change. I’ll do what I can.

Onward…


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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.

10 thoughts on “After TBI / concussion – How does it feel to lose your Sense-Of-Self?”

  1. This post…I used to be so smart before, don’t need others to remind me. While part of me understands why I’m not the same a big chunk inside just doesn’t. It’s terrifying. I just can’t think like I could anymore and no one understands, they say I need to snap out of it. Don’t they realize that I would if I knew how?

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  2. This hits close to home because my kid is such a “high flyer” as her new school describes it. We left her previous school because the environment and personnel didn’t support her healing–and essentially her sense of self. She was denied any insurance claim despite the injury happening on the campus and she was denied both an IEP, which she most likely qualified for in the initial stages of her injury, when she couldn’t manage a full time day or any computers or PE. We were told she had a high IQ and even though her processing speed was <5%ile, they talked circles around that deficit (which showed up on multiple tests) until even our advocate was confused and overlooked this. The standard was that our kid only needed to be able to function at the average level as the orher kids, and it didn't mattet that she couldn't function close to hwr previuous level. Any TBI mental or social problems were dismissed as bring typical of the adolescent age group.

    We had actually felt that 504 accommodations would be most appropriate, and actually they are still and the school implements them, but does not document them. This is an issue for her college board exams in the future as she won't be able to wear a hat and sunglasses to manage her light sensitivity unless we get a special permit from the college board and that has to be submitted through the school system. She is being limited by multiple beaurocratic systems. It amazes me how resilient she is and that we have a viable workaround solution for the future (but that is only available because she is great at time management and working independently, along with her high intelligence).

    Really, she just wants to be a kid. She wants to do the typical stuff teens are doing, but the TBI placed her on a different path. We have grown closer as mother and daughter because of this, but it is hard for her not to have the same peer interactions that would be common at this age and she painfully feels the isolation. Seeking the connections that lead to gratitude and a sense of wholemess make such a difference. We are so happy others blog about their TBI experiences so neither of us is so alone on this journey as a survivor or a supporter of a TBI warrior.

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  3. That unfortunately sounds familiar. These things take time to sort out. I generally try to cover my tracks and fake it till I make it, but that still doesn’t speed things up for me. It’s not an easy thing, and after all these years, people still get upset with me. They equate a slower speed with lower intelligence. Not so.

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  4. Ten years may seem a like a long time for most people, but for those of us who live with a brain injury everyday- life really only starts being less of a struggle after the first ten years. For most of us, life will never be the same and for some the struggle will never end.

    It took me 13 years before I could start to smell again, and because after the first year of not smelling I forgot what things smelled like – now I have to relearn all over again. It took me 18 years before the numbness on the left side of my body went away, however the limp is still there when I get tired or have a long day.

    It took 20 years for me not to have to look on the calendar or my day planner to know what I was going to do that day. Now, at night when I sleep I can dream again. It took me 25 years before this was possible.

    Recovering from a brain injury is a slow process – it took me decades before I could regain my self-confidence and feel comfortable in my own skin again. Recovering from a brain injury begins by finding hope to get better and finding meaning and purpose to motivate you to get on with your life. There are many peaks and valleys along the way to deal with during this process. In the early stages of my recovery process it was like taking one step forward and two steps backward for many years, but these issues lesson as time goes by and you start to regain your self-confidence and improve your self-esteem.
    Along the way there were many obstacles to overcome – some of these obstacles were placed there by me, as I tried to get my life back on track. If you are like me – we try and fail many times along this journey – some of the first casualties are our friends and family.

    Without the support of family and friends the journey back will take longer than it needs to. Taking care of yourself doesn’t mean doing what you used to do – but rather finding new ways to adapt to situations that confront us after our brain injury.

    Taking care of ourselves, setting up a routine and being responsible for our actions is the key to finding meaning and purpose in your life after a brain injury. Being accountable for the decisions we make is very important to the recovery process and our well being – giving up isn’t an option.
    Along this journey back to what people call “reality” – it is very important to be responsible for our actions and hold others accountable for theirs as well. This is especially true when it comes to service providers, the state and federal government during these times of budget cut backs and program uncertainty. Getting involved with community organizing, public service and political action helped me to get better and I think it can help you too.

    It took me many years to regain old skills and learn new ones after my brain injury in 1976. Being motivated to learn new skills made the road to recovery smoother and less rocky – this wasn’t easy! Having the ability and discipline to get up and go to work every day helped me feel productive and worthwhile. Even though there wasn’t a paycheck at the end of the day, I still felt good because I was doing something productive instead of setting around hoping things would get better.

    In the early years of my recovery, I made decisions that weren’t in my best interest. I didn’t know any better and hope the knowledge this experience over the last 35 years will provide you insights and ideas to make your life easier and more fulfilling.

    Living with a brain injury can be a burden on us and the ones we love. Our family and friends want to help us get back to our “old selves” – but they don’t know how. I hope this information will offer you examples of what I did – so that your journey will be less difficult than mine was.

    Liked by 1 person

  5. I totally relate to this article. Being “high functioning” is very difficult after brain injuries. It delays the help you’re so badly needing. And even in neuropsych testing you can still score average to above average to superior. I have repeatedly even after five brain injuries. Those tests are useless to determine disability when you’ve been brought down to “normal” from “high functioning” or “very bright”. Even a highly qualified neuropsychologist admitted this to me. Yet it’s this neuropsych testing that previously was pointed to stating “nothing” was wrong with me and thus I’m still awaiting disability benefits three years later. Even with having the objective proof in SPECT brain scans which shows brain function and extensive brain injuries that I’ve had. I was told I had a “large reserve” which allowed me to still function as well as I have. Plus HBOT starting in 2015. 🙂. But I still remember who I was and my capabilities which is so terribly frustrating to try to get back to. I have had improvements after HBOT so I guess I need to remember how far in healing and recovery I have come already. But I’m so ready to take leaps and bounds forward instead of these tedious baby steps that I’m repeatedly told to take in my current therapies. So looking forward to more HBOT once I have the funding to do so. It is so refreshing to find others who can relate to what I’ve been through and am still enduring.

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  6. Thank you for writing. I can really relate to what you shared. It’s been so frustrating for people to tell me that I “should” be fine with my situation, because I’m still in the average range. As though that’s any consolation…. It’s not. Losing so much of my capacity — some of the most important aspects of my identity, actually — was devastating, but nobody ever recognized that. They just minimized it and told me I should be grateful for what I had.

    The thing that’s worked for me over the past 10 years has been re-building reliable networks in my brain, so I don’t expend waste so much time thinking about the little everyday things that used to come so easily to me. For me, it’s all about building up routine that I can rely on and that spares my brain the work of having to figure things out. Then I have more freedom and available energy to re-develop my higher skills. And get back to a level I want to be at.

    I have to admit, I’m not near where I used to be in many respects. My memory is unreliable, I have a bad habit of misplacing important things and having no recollection of where I left them, I don’t have the energy I used to, and things that used to come easily to me now baffle me.

    At the same time, for the lack of quantity of ability, I think I’ve developed more quality to my thought process. I’m definitely slower than I used to be, but that actually lets me focus more intently on what I’m doing, and I have more nuance than I did before.

    So, while I have lost quite a bit that was important to me (and still is), I have gained other things that I never had before. And that’s a plus. I’m not sure it makes up for it, but it’s something I’m really grateful for.

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