TBI S-O-S! Restoring a Sense-Of-Self after Brain Injury and Concussion
How little things get big – balance issues
You know, when I fell in 2004 and smashed my head on the back of those stairs —bang-bang-BANG– and I got up from the fall and sat myself down at the table in the next room to collect myself, I never in all my life thought it would make the kind of difference it has. It’s crazy. It’s not even like I was in a horrific auto accident or I was in an IED blast or I was shot in the head. I just fell down the stairs, right?
Except that it was. It started out small, then turned into a big deal. Who knows what was going on inside my skull at the time? Who knows if there was some swelling? Who knows how many neurons fired so wildly that they died off? Who knows how much protein and other substances leaked out into my brain to fry my connectors? Who can say? The difficulties I experienced were NOT huge deals. Yes, I had a hell of a headache. Yes, I was disoriented. Yes, I was more quiet than usual. But it was just a fall, right?
This is one of the most problematic aspects of mild TBI — the issues that come up may not seem like a lot, at first blush. But cumulatively, and over time, they can usher in a lot more complications that just screw everything up. It’s not so much that I had these significant issues, like not being able to walk or talk or remember my name. The issues were much more subtle, and that made identifying them and dealing with them that much harder. If you don’t know something’s wrong, you can’t fix it, and I had no idea that anything was wrong for years.
In that time, I managed to lose a really great job that was a “no-brainer” for me and looked like a very promising long-term engagement. I managed to make a handful of really dumb job decisions, and I managed to spend just about every penny of my nest egg, to the point where, six years later, I’m just now starting to not live paycheck-to-paycheck, and I’m just now starting to get out from under the huge debt load I acquired over the years.
The thing about mild traumatic brain injury, is that it sneaks up on you. It introduces a hundred little variations to your life, all of which individually would not seem like such a big deal, but together can throw you into a tailspin that some people never come out of completely.
The worst thing is, even when you learn to deal with the tailspin, it’s awfully easy to forget and lose track and end up doing and saying things that get you into trouble. On a certain level, you know it, but you can forget…
Take for example, a simple thing like being off balance. I’m not talking about the kind of vertigo that has people falling over in public places or unable to leave their homes. I’m talking about just feeling off balance all day, every day, and never being able to get away from it far enough to regain your balance – literally or figuratively.
If there’s one thing that’s wreaked havoc in my life like nothing else, it is balance (vestibular) issues. It’s crazy, how much they have affected my life and screwed so much up. Now, I’ve talked to doctors about this over the years, but my problems were never enough to warrant heavy-hitter drugs (and the ones they prescribed to me, like meclizine) didn’t help at all. They just made me foggy, which is about the last thing I need. Comparatively speaking, anyway, my balance problems are “mild” — when considered just in and of themselves. But in the context of my whole life, and cumulatively, they can be a real (excuse me) bitch.
Here’s how the “TBI Vestibular Cascade” plays out with me
* Falls, injuries in the background
o TBI – multiple TBIs, actually
+ Cognitive impairment – not huge, often not noticeable, but enough to be a real pain in the ass that throws me off
+ Behavioral issues – can be a problem, especially when stressed – fatigue feeds agitation which feeds anxiety and irritability, which can spiral into rage in an instant’s flash. Not good.
+ Emotional issues – ditto
+ Functional impairments – like physical issues – sensitivity to light, sound, touch, and of course, being off balance
# Vestibular instability (feeling off balance most of the time)
o Proprioceptive disorientation – not being able to sense where my body is in relation to other things
o Experiential issues – keep bumping into things
o Spatial – see above
o Visual – so busy trying to keep upright, I don’t see things that are right in front of me (inattentional blindness caused by focusing 100% on keeping my balance)
o Taste/Smell – either non-existent or pumped up to 300% because of stress
o Tactile – see above
o Cognition – disorientation stresses me and cuts in on my cognitive resources… just can’t think
+ Learning – and because I’m having trouble thinking, I have trouble learning
* Sensory extremes – examples below:
o Visual – I’m so off-balance that all I can think about is staying upright, which means I don’t see things that are right in front of me, because of inattentional blindness, or perceptual blindness, “the phenomenon of not being able to perceive things that are in plain sight” which is caused by focusing 100% on keeping my balance. I am so busy attending to my balance issues, that I literally have n
o bandwidth left for seeing what’s in front of me.
o Spatial – Ha! When I’m off balance, I have a tough time figuring out where things are. I bump into things, knock things over, break things. Stressor…
o Tactile – see above
o Taste/Smell – When I’m stressed over my balance problems, I can have taste/smell that’s either at 300% or is non-existent. It’s unpredictable. And annoying. Another stressor, depending on the circumstances.
o Experiential – I’m having a really tough time, and I’m struggling to keep up… because I’m struggling to keep upright.
o Learning – it would be nice if I had the bandwidth to learn, but I’m in the process of trying to keep myself from falling over, so I’ll have to learn another time.
o Cognition – with the stressors of physical issues, my cognition is really impacted. I just can’t think. A lot of it, I think, has to do with being so fatigued from my physical issues, that my mental facilities are impacted.
o Sensory inattention
+ Sensory muddling – sometimes nothing makes sense, it’s all a big mish-mash of “stuff” I need to sort through.
+ Misinterpretation of clues – and sometimes I get turned around by all the stuff I’m sorting out, that I misinterpret things that are said to me, or I miss a social clue, like someone stopping talking to me, when I’m having a discussion with them. One would think I’d catch the hint and be quiet/give them a chance to talk, but when I’m whacked from being off balance, it’s really easy for me to miss those kinds of clues.
o Interpersonal social issues – result from the problems I have above
+ Social withdrawal – How many times can I totally screw up social interactions and still stick with it? After a while, it seems like a total waste of time. Really.
+ Lack of communication and interpretation – When I shut down, because I’m having so much trouble balancing, I stop communicating and interpreting what others say to me. I just don’t have the energy or bandwidth.
+ Learning differences and disabilities – As a result of withdrawing and getting turned around so many times (and not just in adulthood, but when I was a kid as well), I’ve learned to learn in different ways. These differences, when not integrated into the world around me, can become disabilities. Not because of me being disabled, but because I’m just different, and others can’t always detect and allow for that.
+ Social development and integration issues – all of the above add up...
+ Social withdrawal – and I figure, “Why bother?” It’s much easier just being off by myself.
* Vicious cycle of continued neglect and compounded physical issues
o Crime and punishment – I’ve had more close calls with the cops because of communication issues than I can count on the fingers of both hands. I’ve also been routinely punished by teachers and other authority figures for “defying” their orders, when I simply didn’t understand. My parents had to step in and save me from some of my teachers, because the teachers weren’t being clear with me, and I couldn’t let them know that I didn’t understand. Now, I’m not mapping all my crime and punishment experiences to vestibular issues, but when you’re so taxed and fried from keeping your balance and you have no energy left for social interactions, it can be an issues.
o Employment/Social functionality issues – see above
+ Financial instability – When you’ve got communication and social interaction issues, and you’re so busy just trying to stay upright that you run out of steam, it’s easy to get into financial trouble. REAL easy.
o Compromised relationships – arising from communication and interaction issues, leading potentially to:
+ Health neglect – fatigue cuts in on your ability to care for your health, including detecting when you need help
+ Worsening conditions – can go unnoticed, unaddressed, and communication issues can keep you from seeing a doctor because of the difficulties
+ Re-Injury – fatigue can stop you paying enough attention to the world around you… going faster, going faster… ending up in a jam again
o Trauma Response to Circumstances – what’s more, on top of all of this, you’ve got a physical trauma response (your hyper-alert sympathetic nervous system kicking into overdrive on an instant’s notice, whether or not it’s warranted), which makes things even more… interesting
+ “Normal” circumstances trigger trauma response – even if there’s no immediate danger, the perception of danger can set off your sympathetic nervous system, sending you into fight/flight
# Physical issues > emotional response – you can have an emotional response to physical issues… becoming emotionally overwrought when you’re off balance (this happens to me a fair amount – I tend to start to panic, when I feel myself getting off balance yet again)
# Social issues > trauma response – unsatisfactory social situations can trigger you… like that flood of dread that comes up when you contemplate going to a party, after the last time you went ended in some sort of humiliation or ridicule.
# Interpersonal issues > trauma response – bad interpersonal interactions can also produce a trauma response… like seeing a cop in your rear view mirror and physically re-experiencing the last really unpleasant encounter you had with a “statey”.
Vestibular issues may resolve on the surface, but the underlying experiences that accompanied them before remain, setting up an associational cascade of PTSD-like reactions to the conditions that resemble the original problem.
It’s a lot, I know. But this is all consistent with my own experience. I haven’t gone to the great extremes of incarceration and divorce and bankruptcy, but I’ve been damned close, and the fact that I’ve narrowly escaped so many times makes me believe in a Higher Power of some kind. In fact, the perception of others that all this couldn’t possibly come from something as simple and as “minor” as vestibular/balance issues, is testament to the very human tendency to play down things. And it speaks to why and how mild TBI is so often under-estimated in its ability to disrupt, even destroy, lives.
It’s not that I’m looking for sympathy or to have anyone cluck their tongues over how hard I have it — I think it’s just important to point out the ways in which TBI symptoms can cascade into one another, building up and building up until they turn into serious problems that aren’t easily dealt with.
The key for me is to head these things off at the pass and keep myself from getting too dizzy to begin with.
[x] Stay rested – check
[x] Avoid dairy like the plague – check
[x] When I AM dizzy, slow down and take my time – check
[x] When I AM dizzy, make sure I get extra rest – check
[x] When I AM dizzy, DON’T PANIC – check
Because I know what can happen, if I don’t take care of myself. It doesn’t always progress to the extremes described above.
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.
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