How easy it is to fool myself!

It's so easy to get pulled into the illusion
It’s so easy to get pulled into the illusion

TBI can certainly make life interesting… in the sense of that old Chinese curse “may you live in interesting times”. One of the “interesting” things about TBI, is how it can screw with your sensory perceptions, as well as you interpretation of those sensations.

Anybody with TBI can probably tell you how life takes on an unreal quality when you’re hurt. Things slow down. Or speed up. Things that never bothered you before suddenly become unbearable. Things that you used to not care about, suddenly take on all the importance in the world.

And life can seem pretty unreal.

Our lives are turned upside-down in a number of ways.

  1. We may not sense our environment the way we used to. First off, our attention can get wonky — TBI often makes you more distractable, which means you’re not paying consistent attention to the world around you. And your short-term working memory (the short-range stuff that makes it possible for you to talk to people and remember what they said earlier in the discussion, or that lets you start a task and complete it) can be messed up, too.That means you don’t pick up all the clues you could, or you drop the ones you get — and never know it. I had a hell of a time with holding conversations for many, many years, because I didn’t realize I was losing track of what people were saying — and I never took corrective action until after I found out. (I’m much better, now, by the way.)  Distractability can also affect your perception of the world around you, keeping you from sensing. It’s not uncommon for me to walk into furniture and never see important details and also not hear what I should, thanks to distractability. So, the world around us is literally changed at the very first point we contact it.
  2. The information that does get through to us can get distorted along the way. Chemical_synapse_schema_croppedWithin the body, between the synapses, there’s this thing called the “synaptic cleft” — a space between the synapses that electrochemical impulses need to “jump” to transmit information.  Per Wikipedia, it’s

    An electrochemical wave called an action potential travels along the axon of a neuron. When the action potential reaches the presynaptic terminal, it provokes the release of a small quantity of neurotransmitter molecules, which bind to chemical receptor molecules located in the membrane of another neuron, the postsynaptic neuron, on the opposite side of the synaptic cleft.

    There are 100–500 trillion synapses in the human brain alone — and considering that there are also neurons elsewhere in the body (the gut, for example), that’s a lot of tiny little spaces that signals have to get across. On top of all those billions trillions of connections that need to be made properly for info to get across, TBI can mess with your biochemistry, your neurochemistry, either increasing or decreasing neurotransmitter action, so that very sensitive, very fine connection that needs to get made… just so… stands a pretty good chance of getting at least a little mucked up.

  3. And then we come to our brain. The very thing that got hurt. Our brains may not process what comes across in exactly the same way they used to, and our experience of the information that gets through may be distorted. The stories of light and noise sensitivity are myriad, along with accounts of sensitivity to touch, the inability to tolerate certain scents and sensations after a brain injury. With me, even years later, some days can feel like my whole body is going haywire. And I can’t deal. When I’m tired, when my brain is taxed, when I’ve run out of steam… yah, all of the above… and more.
  4. Our interpretation of those experiences may be messed up, so we interpret what’s happening completely wrong. I’m especially prone to this. And the armies of TBI/concussion survivors who are impacted by this, are legion. In my own personal case, my mood and emotions are strongly impacted by how I feel physically. When I am in chronic pain, I tend to get depressed and feel like there’s no way out. When I am exhausted and feel  physically ill with fatigue, I can slip into a state of mind that doesn’t care if I wake up in the morning. When I am just feeling physically worn out from the stress of dealing with the day-to-day, and I have to work extra hard to interact with people, I tend to interpret that as not being good with people, being anti-social, and generally being socially useless. It has nothing to do with the facts of the matter. I’m just feeling that way, and I’m letting that feeling hijack my judgment.

So, TBI hits you on a number of levels that can progressively screw with your entire perception of yourself and the world around you. It’s a whole-system head-trip, and the end result can make us feel / think / act like we’re crazy.

Which may seem like bad news… but it doesn’t have to be.

See, the thing is… even without TBI, our bodies can play tricks on us that eventually affect our minds. We ALL have those days, when we’re distracted and not paying attention to the world around us… which causes us to miss important pieces of information. We do it all the time. We’re paying attention to our phone screen and miss the last sentence someone said to us. We’re fiddling with the car radio and miss our turn off the freeway.

And all the other conditions apply to everyone, as well:

  • Everyone’s neurotransmitters need to jump the gap, every time our senses communicate what we do manage to detect, and neurotransmitters can vary without needing an injury to complicate them.
  • Everyone’s brains need to decode what comes across, and the human brain is notoriously inconsistent — especially when it comes to fatigue, poor diet, illness, and other factors that screw up our cognition.
  • And of course, we’re all subject to flights of fancy and delusions, where we misinterpret what we think has “come across the wires”. People are extremely good at reading meanings into situations — regardless of whether those suspicions are valid.  Most people are walking around with a made-up version of what’s happening around them, and most of us are wrong in many subtle ways. Basically, we’re so good at forming our own meanings and inventing stories that make sense of an often senseless world, that countless people are cognitively isolated and living in their own private Idahos, even while thinking everyone else is living in that same state with them.

The benefit of TBI, is that it accentuates all these conditions and can make them so exaggerated, that even we can tell we’re full of sh*t. Which is a helpful place to start from. Think about all the people walking around who think they’ve got it all figured out — and are making life a living hell for themselves and others. Now, TBI can absolutely blind you to the wrong spots in your thinking and process, so that can be a problem, but for those of us who understand that our brains have been impacted and our minds have been warped by this thing called traumatic brain injury, we’re actually a bit ahead of the game.

If you want to live well, you need to understand your own limitations and factor them in — and not take yourself so damn’ seriously. Being ultra-familiar with your own feet of clay is a good place to start from, for having no clue of how clueless you are can make you downright dangerous — to yourself and others.

Knowing what’s busted is the first step to fixing things, and far from being a liability, it’s ironically a very strong place to start from.

After that, anything is possible.

Onward.

After TBI: That house has burned to the ground

And now you’re going to have to move.

Seriously. The structure of your life is toast (literally and figuratively), and there’s no point in trying to move back in. Sure, you can try – you can pick up whatever you have left and set down on top of the old footprint of the structure, expecting things to return to normal. But when the rain and snow and wind come, there’s no point in being surprised.

Your house has burned, and you’re going to have to find a new way to live.

Now, you may say, “Oh, but my TBI was a mild one. It’s just a concussion, and it’s no big deal. My doctor says I’ll be fine in no time.” To believe that is a mistake. Doctors may know precious little, other than how to keep from getting sued, and the popular “wisdom” on mild TBI/concussion is anything but wisdom. Just because you can’t see what’s in there, doesn’t mean it’s not going to give you problems. There are millions of individual little miniscule connections that make up the sum total of who you are and how you live in the world, and when even a few of them get stretched and frayed and torn, it can wreak havoc on your life, just like a little crack in a dam can cause the whole structure to become unstable.

Not to worry, though. It is fixable. Not fixable as in — “I can make it all go back to how it was.” That is pretty much of a waste of time. You might as well accept it, because that’s the deal. Depending on your situation, for many years in the future — even the rest of your life — you can find yourself re-discovering how differently your brain functions, compared to before.

The point is: So What?

Seriously. Let it go. Get to work coming up with something new and different for yourself. It makes no sense to get stuck in the past, mooning over how awesome things used to be. If you’re honest with yourself, you will find a ton of things that weren’t awesome at all — some of which may have actually contributed to your brain injury / concussion. I think that after TBI there’s a huge temptation to get stuck in rigid thinking and have this unrealistically rosy view of before. I know I had it for quite some time, till someone asked me point-blank if things were really all that great, once upon a time, and then asked me to think of some examples when things weren’t that awesome.

And when I thought about it, I realized that my life had been pretty much of a mad scramble just to keep ahead of the sh*tstorm that seemed always about to burst open over my head. Okay, so I can chalk a lot of that up to prior TBIs, not to mention all the mental health issues that I literally gave myself, because of how I was thinking about my life.

The point is, I had it in my head that things were so awesome prior to my TBI in 2004, but they weren’t that way at all. Yes, I had more money. But not so much more. Yes, I had a career. But I actually couldn’t stand a lot of people I was working with, and I hated my mega-corporate employer with a blue-flame burning rage. Yes, I was more social. But the people I was hanging out with were victims and very unwell in their own rights.

If anything, TBI lowered my tolerance of all sorts of bullsh*t, which is actually one of the benefits of getting smashed in the head hard enough to turn your life upside down.

Once I got past the idea that everything was hunky-dory, and that I was only functional before, things started to loosen up. Of course, it’s taken me a long time — years — to let that fully sink in, but at least I got off to a start, a few years back.

The other thing that’s taken me a long time to come to terms with, is the fact of how much things have really changed with me — and how much they need to change. For the longest time, I was bound and determined to “bounce back” and get back to where I was before. The only thing is, where I was before, wasn’t actually so great, and it’s not where I want to be in the future. In a way, it was like I was living in a house that had a lot of structural and logistical problems, which I got used to working around and living with. And a mild case of Stockholm Syndrome set in, where I not only got used to dealing with the crap, but I also decided that I just loved it all that way, and I was lucky to have it.

Oh, how untrue. Turns out, I was accommodating a lot of BS that I never should have, and I was in relationships and work situations that just did not suit me very well at all. Only when I became incapable of sustaining the huge amount of energy and effort required to keep myself contorted in all those miserable accommodations, did I start to break out of that old shell. It has been hugely painful and frustrating and frightening and anxiety-producing, but oh well. At least I can see more clearly now, just how un-right things were before.

No matter how attached I was to that old way of living… no matter how convinced I have been that it was amazing and fantastic and awesome, etc… no matter how invested I was in keeping things the old way… the fact of the matter is that a lot needed to change. And it was going to eventually. Whether through brain injury or mid-life crisis or some other life event, it was all going to have to change.

And I see now that one of the things that’s held me back the most, has been my reluctance to drop what came before and try to create something new. The weird thing with TBI is now it can jack up your fight-flight response. I think that’s for two reasons — 1) TBI does affect the autonomic nervous system, the part of our system that “toggles” us between overdrive and chill, and it can jam our accelerators in place, like a floor mat on the gas pedal of a Prius. 2) Dealing with all the differences from how things were before can be a constant source of surprise and shock. One experience after another goes wrong, for no apparent reason, and you can end up seriously on-edge, constantly trying to keep up with what’s going on around you, constantly trying to figure sh*t out, that just doesn’t make any sense.

What happens when we’re in that constant state of overdrive and reaction, is that our brains become less able to learn. And we end up not learning the valuable lessons that we need, in order to alter our brain structures and develop new pathways and new patterns that we can rely on. I’m not sure that any of us ever feels “the same” after we’ve seemingly fully recovered from TBI. I’m not sure any of us ever gets to that point of feeling like our old selves — it takes some a lot of adjusting to the sensation of not having a clue what is going on, but going ahead and taking action anyway.

But if you can get past the uncertainty and make peace with the fact of feeling confused and baffled and constantly playing catch-up, and you can find it in yourself to keep going, anyway, you can put your life back into something new and different.

You just have to realize your house has burned down. And it’s time to move.

Yes, move. The first and most important thing I will say to anyone who has sustained a traumatic brain injury — especially mild TBI or concussion — is that you have to get moving. You have to exercise. If you never did before, now is the time to develop that interest and acquire that skill. You’re going to have a whole bunch of “sludge” in your system, both from the biochemical cascades that happen with concussion/TBI, where the cells of your brain become deluged with chemicals intended to help them cope with the injury.

BestPractice has a writeup on Concussion, including the pathophysiology, which sheds a lot of light on things:

The biochemical cascade of concussion is marked by an initial period of indiscriminate neurotransmitter release and unchecked ionic fluxes. [20] Excitatory neurotransmitters, such as glutamate, bind to N-methyl-D-aspartate receptors leading to further neuronal depolarisation with the influx of calcium and the efflux of potassium. These ionic shifts lead to acute and sub-acute changes in cellular metabolism and physiology. Acutely, the sodium-potassium pump works overtime to restore a homeostatic balance, requiring increasing amounts of adenosine triphosphate and a corresponding increase in glucose metabolism. This hypermetabolic state co-occurs with diminished cerebral blood flow. The disparity in energy balance and the tendency to restore ionic balance is met with the decrease in blood flow, creating a cellular energy crisis that is suspected to be the mechanism for post-concussive vulnerability, leaving the brain more vulnerable to a second injury and potentially longer-lasting, more severe deficits. After this initial period of hypermetabolism, the brain goes into a state of hypometabolism where the persistent increase of calcium may be responsible for impairing mitochondria, further affecting cellular metabolism and neural integrity, worsening the energy crisis, and potentially affecting post-traumatic neural connectivity. [20]

Axonal compression and stretching is also thought to be a major injury mechanism, creating a focal abnormality on the surface membrane of the axon within hours of injury, sufficient to impair axoplasmic transport, resulting in oedema. View image The swollen axon then separates, with the proximal section remaining attached to the cell body while the distal end undergoes phagocytosis by neighbouring glial cells. Axonal swellings may persist unchanged, or regeneration may occur over several weeks. If axons do not regenerate, reactive deafferentation may occur. [21]

Neuro-imaging studies using functional MRI suggest that a depressed mood after concussion may reflect an underlying pathophysiological abnormality consistent with a limbic-frontal model of depression. [21] [22]

That sludge stays in the system after the injury has occurred, and in my reading (and experience) I’ve become convinced that concussion/TBI disrupts brain and body function not only in the days after the injury, but over the long term. I read something a while back about how the gunk that gets poured into brain cells continues to stay around (I can’t remember where I read it – I may have a copy of it on my hard drive).

Bottom line is, when you sustain a TBI/concussion, your cells get flooded with all sorts of interesting crap, blood flow slows down, and together, this contributes to a buildup of gunk in your cells, which bog them down — and can also make you feel incredibly depressed. If your brain continues to carry that increased biochemical load, it doesn’t help matters.

What can help? Exercise. Plain and simple. Getting the blood pumping — or at least just moving more — will help the cells clean themselves out and renew. Fresh blood, fresh oxygen, fresh biochemistry helps to not only relieve the burden from the cells, but also to stimulate new growth — which is exactly what you want. You get double the benefit — and not only physically, but mentally and emotionally as well. A refreshed brain can rebuild not only its internal connections, but also the life around it. A renewed brain leads to a renewed life. What can be wrong with that?

Seriously. After TBI, you’ve got to move. Your doctor may tell you to take it easy till after symptoms pass, but sometimes symptoms don’t pass until after you start to exercise. Use your best judgment and check in with yourself to see how things are going — just don’t make a lot of excuses about reasons you shouldn’t take action on your own behalf.

Get up. Get moving. I don’t care if it’s taking the stairs instead of the elevator, if it’s getting up to putter around the kitchen during commercial breaks, if it’s going for a walk around the block. You’ve got to move. Just get up and do it. Your brain will thank you for it. And so will your life.

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