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

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 experiences 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.

And 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

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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