Really understanding TBI

There’s a whole lot going in there — everywhere

I’m feeling a bit frustrated this morning. I had a good workout, and I had my usual breakfast, but I’m still pretty sore from my yard work last weekend, and I’m cranky from the pain.

I’m also trying to get my head around my plans to travel to see family for Thanksgiving. I’ve been traveling a LOT this fall, with the death in my family, and this will be the third big trip to see family in the past two months. I usually don’t do this much traveling in a year, for heaven’s sake.

So, I’m achey and cranky and frustrated that I don’t have more time to read and write. I have been thinking a lot about TBI recovery and how it affected my identity and my Sense-Of-Self (not the same things, in my thinking), and I’ve come across some pretty exciting ideas around how the body (or “felt sense”) of our lives really factors into our overall life experience. I would love to read more and develop them more, but I just don’t have the time.

This is so frustrating – my brain just isn’t keeping up the way I’d like it to, and my body is having some challenges, as well. I’m having some challenges keeping focused on what’s in front of me, and while things have been going really well at work, I keep finding things that I forgot, and I’m falling behind again and again. Argh! Oh, well. Pick myself up and try again.

I’m doing pretty well at keeping focused on reading and writing about the effects of TBI on who we are and how we are in the world. So, that’s good. But I can’t help thinking about related things as well. Beyond the narrowness of that focus on identity and Sense-Of-Self, when I ponder traumatic brain injury recovery and the literature that’s out there about how to deal with it, I get the distinct impression that on all fronts, there’s not nearly enough understanding of the true issues that really confront us on a daily basis. It’s like everyone is so “up in their head” that they miss some key and critical pieces of the condition, as well as potential for recovery.

Traumatic Brain Injury Recovery is so important. And yet it’s so misunderstood. Once again – Argh!

For the Traumatic piece of the puzzle, people don’t really seem to connect the ongoing experience of TBI with anything significant. “Trauma” supposedly applies to the initial injury itself — even though the ongoing experience of dealing with TBI after-effects qualifies quite easily as serious and ongoing trauma. People get way too literal when they think about traumatizing life-threatening experiences; they focus on the injury itself (which I think is a relic of traditional trauma studies which often deal with sex and violence and need to acknowledge that experience to move survivors forward). But with TBI, injury doesn’t just happen once. It keeps happening, thanks to changes in the brain and ongoing logistical issues that keep popping up to screw things up. On a large and small scale, the kinds of self-thwarting experiences that pack the years of post-TBI living are every bit as life-threatening as being held at gunpoint. It’s smaller scale and less dramatic, but it’s still deeply traumatic. Yet everybody talks about the trauma as being specifically about the initial injury itself. Missed opportunity there.

For the Brain part, people get all worked up over the inner mysteries of those 3.5 pounds of tissue inside the skull. And they can get so focused on what’s happening inside the skull, that they miss what’s happening outside it… how the brain interacts with the body, and vice versa. Focusing TBI recovery solely on how we think — about our lives and the stories (narratives) we use to construct our understanding of who we are and where we fit in the world — is not only limiting, it’s also counter-productive and potentially damaging. There is a whole other aspect of our lives — our physical experience, the interplay of body with brain and mind — that builds the sum total of our lives. Ignoring this cuts us off from such a valuable and important source of information. For me, the physical after-effects of TBI have been so much more intrusive and troubling than the cognitive ones, and I’ve had to address them on my own, for the most part (because nobody seems to believe me). Who the hell can truly recover, if they never consider the body’s part in the whole experience? My brain and mind recovery progressed by leaps and bounds, when I prioritized my physical recovery.

For the Injury part, experts seem to think that the only injury involved is the bodily harm we came to when we fell, got into that car accident, were hit, or had that heavy thing clunk us on the head. They talk about the Glasgow Coma Scale, Rancho Los Amigos Levels of functioning, MRIs, CAT scans, biomarkers, and other measurable data that can be collected at the outset. The ongoing injury is largely ignored — and meanwhile, your way of life, your intimate social network, your larger community, and the spirits of everyone involved are repeatedly bruised and broken along the way. I understand that insurance will only cover the first x-number of weeks and months of recovery, and for those of us with “mild” TBIs, there’s not much that can be objectively measured and analyzed and addressed (’cause a lot of docs are truly clueless). But the true injury of traumatic brain injury (regardless of how “severe” the incident was at the outset) is ongoing, chronic, and takes a massive toll on a lot more people than science seems to realize. That’s starting to be studied and measured, with long-term outcomes being investigated and examined. But we have a long way to go before we “get” how persistently and pervasively injurious a TBI can be, both individually and collectively.

As for Recovery, well, some people (experts among them) don’t even believe it’s possible. Silly. Of course it’s possible. Look around. If nobody recovered from a significant traumatic brain injury, we’d be living in a sort of zombie apocalypse. Millions of people have brain injuries each year, and up to 15% of them (possibly more) have persistent issues. Over the course of 10 years, say, that’s 22 million people who have TBIs in the U.S. alone, and 3.3 million who have ongoing symptoms. 3.3 million Americans with lasting symptoms. And those numbers are drastically under-reported, according to some. How ’bout them apples. Think about it… Clearly, some of us must be recovering.

The whole business of TBI diagnosis, treatment, and rehab – and for some that’s exactly what it is: a business – has serious cultural issues. Part of the problem, I think, is money. There’s a lot more to be made from disseminating partial or incorrect information… educating people half-way… and then pulling them in to provide the services they need, for just as long as they can pay.

Another part of the problem is how we identify and understand the injury, period. If our issues can’t be detected by imaging or measured in some way, according to our popular prejudice they don’t exist. Indeed, the ways that are used to measure those issues are really surprisingly limited, given the amount of knowledge and experience we literally have at our fingertips today.

The internet — from social media to online databases to academic communities to the worldwide web of infinitely expanding resources — puts so much at our disposal. But it doesn’t get used. It doesn’t get connected.

How and why that happens, has a lot more to do with ulterior motives and professional biases (against the Web, against other people, against other disciplines, against competing ideas), than it does with practicality or the technologies available to us. We literally have pretty much everything we need, to figure this out. But we don’t… because of a host of hidden issues that can’t be easily detected by logic and reason — and therefore don’t exist, according to some. Nobody who makes their living by using their highly trained brain, is going to admit that something else is calling the shots behind the scenes… biases and instincts and biochemical impulses kicked off by their physiological infrastructure, often prior to the ability of conscious thought to kick in.

That would be heresy. It would also be embarrassing.

There’s a lot we have to learn. And I’m going to suspend my rant, now, to go off and live my life. Oh, and recover from the trauma, feed my brain, and see what I can do to mitigate my ongoing injuries.



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.

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