I know. My handwriting is terrible. It wasn’t this bad before I fell in 2004. Then suddenly, I was writing like a doctor…
Confession: I was not at my best, this past weekend.
The heady combination of two extra days off that got me revved with all the possibilities, along with a pressure-filled trip to the doctor and interpersonal/political dramas with my spouse’s work and not getting enough sleep, all pushed me towards fight-flight mode.
And we all know what that does to higher reasoning. It makes it that much more difficult.
On top of that, it cut into my reading and comprehension abilities.
I’ve found myself — in the past weeks — skipping letters when I’m writing longhand. I will write a word and literally leave a space for it. I’ve been marking up instances where it happens — underlining and overlining the missing letters, and putting a dot in the margin, so I can find it again. In the image above, the sentence reads:
When we tell our tales, the very act of being listened to causes our perception to shirt – and the story is no longer only ours alone – it belongs to us all.
Missing “o” and missing “s” in the same sentence. How ’bout that…
I’ve also been noticing some changes to my reading and comprehension. I literally mis-read words. They literally look like different words to me, which is quite interesting.
So, a sentence that says, “Results indicate that prolonged exposure to high lead levels in water may result in cognitive degradation”
might read as “Results infer that preferredexperience to high lead levels in wafers may result in cognitive defamation.”
And as I tend to be somewhat literal in my interpretation of words, the mis-reading of words leads to misconstruing the meanings. And so my understanding of what’s right in front of me is not at all what it should be. But my brain is telling me I’m 100% on-target. And frustration and irritation ensues, because I’m trying to make sense of something that’s clearly nonsensical — thanks to my willful brain.
This seems to be new, although I wouldn’t swear to it. It may just be that I’ve been more active lately, I’ve been doing more writing and reading. It could be, I’m just in too much of a danged hurry.
I know that plenty of people are prone to mis-reading information and mis-interpreting it accordingly. That goes with the human condition. The disadvantage comes, when we’re not aware of it, and we insist that we’re 100% correct and right and all that. And we refuse to budge, like so many sneetches in the Dr. Seuss book.
I got a good look at my own limitations, last night, when someone challenged me on my interpretation of some papers I’d listed. Taking a second look — and third, and fourth — I realized they were right. My first couple of readings took place when I was short on sleep and long on frustration, and the things I said about what I thought I’d read, were not the most considered.
And that’s a problem. Because when we discuss research and science and findings and the impact that application could have to the greater population, taking up the pitchforks and torches is a problem. It puts people on the defensive immediately, and then the chance of any sort of collaboration is decreased.
Which is the exact opposite of what I think needs to happen. Especially with brain injury & rehabilitation research.
So, now I have the advantage of knowing that my brain was up to all sorts of antics over the weekend. And I have the advantage of knowing that words actually register differently to me. Time to step back, take a second look — and third — and fourth — and more, if need be — and find a more constructive way to conceptualize and discuss these matters.
Poor understanding, ineffective preventive half-measures, and inconsistent care, are the specters that lurk around every sporting event, every high-velocity activity, every action sport.
Indeed, nearly every aspect of our lives harbors some threat of concussive brain injury. From getting in and out of the shower, to walking down stairs, to getting in the car and driving to work, to going out to lunch, to moving computer equipment around, to changing paper in a copier, to just enjoying your weekend, one wrong move, one hasty decision, and your entire life can change.
Parents are losing their kids — either to transient post-concussive symptoms, to all-out debilitating brain injury, to death on the playing field (or in the emergency room after the ambulance takes them away).
Family members are losing loved ones, seeing their personalities change, watching them become someone they don’t understand, all the while becoming increasingly stressed and injured, themselves, by the resulting trauma.
Everyday people lose friends and colleagues.
Employers lose productive employees.
The U.S. government loses countless dollars in legitimate taxes — not that we can afford to lose anyone who actually pays their taxes.
Clearly, concussion and the resulting brain injury is a society-wide issue that has massive impact. It costs us dearly, and it needs to be addressed immediately — as the public health emergency it is.
And yet, efforts to address it are sorely suffering — in large part due to lack of reliable,actionable information. Studies can be conflicting. Research is constantly evolving our understanding. And at times, findings can be suspect (like with that “chocolate milk heals concussion” research that kicked off school districts stockpiling the stuff as a proactive measure — and then got skewered by the scientific community shortly after it was published). It’s hard to know which way to turn, at times, and it’s hard to know whom you can trust.
The veneer of commercial interest obscures the view for many, for where there are kids playing organized sports, there are parents who will pay any price to keep their kids safe. There’s a lot of money to be made from concussion prevention. And there are countless organizations and school districts and sports leagues whose are well aware of the litigation risk — not to mention their reputations. So, funding is starting to pour into research about prevention and treatment from private and public sources.
Prevention efforts are going full-steam ahead. But when it comes to actually understanding the Concussive Brain Injury that results from a concussion, that piece of the puzzle is still terribly fuzzy and poorly understood. Treatment is sketchy — and often not available. Medical providers are not up on the most recent research. And there’s always more that we are learning. As a result, there appears to be a certain reluctance to directly engage, perhaps due to the murky nature of the issue, as well as the lack of consensus about recovery prognosis. Depending on the nature of the injury and the attitude of the physician, your expected outcome may not not that great.
We need to talk about this, all across the spectrum of the issue — from prevention to treatment to recovery. Everyone who has ever been directly impacted by the profound loss of brain injury that strikes them or a loved one, knows we cannot dismiss it any longer.
And yet… there’s the push-back. From professional sports, sure. They have a financial interest in keeping things as-is… at least for the time being.
What’s more puzzling is the push-back from science and medicine and the folks who can actually do something to educate the general public.
When it comes to discussing concussion, brain injury, post-concussive symptoms, and the measures we take to prevent — and then treat what we can’t avoid — I’m struck by the lack of regard shown by those who are actually in a position to educate the public and make a real difference. I’ve seen a lot of vocal folks dismissed and belittled (including myself) by folks who had the chance to set the record straight. If they’d been willing to do that, they would have won more allies — and very vocal allies, at that.
It’s happening all over. Spend enough time on Twitter, and you’ll see plenty of sarcasm and snarkiness — much of it between individuals who are uniquely qualified to join ranks and really collaborate to come up with a solution that works. Dealing with concussion is a work-in-progress, and we are all learning… evolving… with huge potential to make a real difference. But the level of discourse I see happening is … well, childish. And the adults who could be making real strides in teaming up, squander a lot of energy snarking back and forth.
As for myself, I am forever allied to the cause of researching concussive brain injury, and brain injury recovery & rehab, regardless of whether or not others respect me. I will continue to spread the word (possibly referencing the work of researchers who don’t think much of me). Folks in the professional research/medical field are always welcome to help me do that. I am happy to be corrected, if I am wrong. But I need to be corrected in a respectful and considerate manner, not mocked and belittled.
I’ve had my share of tweet-fests laced with professional sarcasm and snarkiness. But no more. It distracts me from my primary purpose — to share what I know about TBI – Traumatic Brain Injury – CBI – Concussive Brain Injury – and brain injury recovery, which I’ve gained through the worst possible way: direct experience with having my life unravel, not once, but numerous times throughout my 50 years on earth, thanks to multiple CBIs.
Why researchers and neuro professionals refuse to ally themselves with a small but vocal veritable army of concussion activists, is beyond me. Then again, the scientific community itself is rife with conflict and virulently competing agendas, so I shouldn’t be surprised that it spills over to the “civilian” population. I don’t think we should take it personally. But I am deeply concerned that the stonewalling and camel-like spitting from atop the ivory towers of medicine and research is hurting a whole lot of people who could directly benefit from complimentary expertise and publicity
And that makes me a little ill. Because we literally have no time to waste. But the people in a position to really make a difference, are all too often so busy guarding their own territory that they apparently don’t see the opportunity.
I know, I am nobody. I don’t have a college degree, I don’t have a bunch of professional qualifications. I haven’t been certified in anything except CPR, and that lapsed about 10 years ago. I’m just a highly functioning everyday multiple CBI/mTBI survivor with a penchant for hypergraphia. And I’m about as human as they come.
But I have a voice, and I use it. I write a whole lot about this issue, and even if I reach only one person with new and useful information, that’s one less person who has to suffer needlessly. I’m good for something. And so are the many “hysterical” highly vocal and engaged concussion awareness advocates and agitators on social media today.
My compulsive blogging aside, I don’t think I’m wrong, to be absolutely drivento speak up about brain injury, what it does to people, and what people can do to actually recover… and get on with their lives. None of us who have a vested personal interest in sparing others from the hell of losing yourself — or a dearly loved one — is wrong. We may not be smooth and polished, but we can make a difference.
And we know all too well — if you’re not hysterical about concussion, you’re not paying attention.
What’s beneath can be much more compelling than what’s visible
Whether you’re concussed, had a stroke, were involved in a motor vehicle accident, or something in your brain ruptured… that injury has literally turned you into a different person.
That change can be temporary — the vast majority of concussions and mild TBIs resolve within several months. Or it can be lasting. With stroke, acceleration / deceleration injuries, or aneurisms, the recovery can be complicated, and 10-20% of concussions / mild TBIs actually do NOT resolve within a few months, but endure for many months… sometimes many years.
Persistent post-concussion symptoms are a problem that’s challenged healthcare providers for many decades. Once upon a time, it was believed that un-improving symptoms were purely related to litigation — after the lawsuit was won, it was assumed that complaints would clear up. But that proved to be an unreliable assumption, as health providers continued to see brain-injured folks show up, asking / demanding / begging for help… the kind of help that the providers frankly didn’t seem to be able to provide.
Then along came the assertion that post-concussive syndrome (PCS) symptoms were related to a history of mental health issues that simply got “re-triggered” by the mild TBI. It was claimed that the “miserable minority” of PCS sufferers were either A) grappling with unresolved traumas and psychic wounds that they never dealt with before and could no longer shut out, thanks to their injury, or B) they were regressing back to an earlier state prior to their successful resolution of those issues, and were experiencing a need that remained / seemed to be unmet.
Personally, I think that the emerging capacities of neuroimaging, as well as ongoing research connecting the dots between organic and psychological factors, will go a long way towards alleviating the pain and suffering. At last, we have a way to see into the “black box” of the brain. At last we have the ability — and interest — and funding — to connect the dots of this “Monet” of brain injury — everybody’s looking at it up close, and when you do that, it looks like an unholy mess… but step back and take it all in, and clear patterns begin to emerge.
But we have to look. And we need to have the ability to step back from our own little corners of the investigative, diagnostic, rehabilitative, and experiential world, and consider other possibilities. Some of those possibilities may fly in the face of what we have believed and promoted, lo these many years. Indeed, some of them might threaten our way of life, our reputations, our ability to make a living.
Those are existential threats — threats to our reputations, our livelihoods (and by extension, our lives) — so, not only do we need to be mindful when we’re discussing approaches that might put people out of a job. But perhaps even more importantly, we also need to be aware of how our own sense of threat/defense works against us our thought process, and puts us farther away from constructive solutions.
Ironically, the safer we play it, the more we run the risk of endangering our collective progress.
And of course, it’s not just academic, medical, or scientific progress that’s at stake. When it comes to concussive brain injury and enduring PCS, people’s lives are very much impacted by professionals’ inability to get their collective act together. That’s true for survivors, their immediate family, friends, employers, larger community, and our extended healthcare system.
Nobody is un-impacted by TBI. Nobody.
So, where does that leave us? Where does that place us, in the larger context of life?
When it comes to TBI / concussion recovery, I believe we will be well-served to look past the superficial professional approaches that emphasize psychological approaches. We need to look beyond the behavior, get out of our reactive cycles towards the way people behave and the meanings they appear to assign to their concussed experiences. We need to look deeper — into the biomechanical elements, as well as the functional ways that we respond and adapt to the concussive brain injury experience.
Telling someone, “You’re just not thinking about this right,” is of no help at all, when their brain structure has been literally altered by an impact.
Telling someone, “Don’t worry – it will pass,” when it seems to be taking forever for things to resolve (even if it’s “only” been a couple of weeks) is not encouraging.
We really need to deal with actual hard facts and data — what we logically and scientifically know about concussive brain injury, and what can be done to assist the situation. It’s not enough to tell someone to “rest and take it easy”. We also need to provide reasons why they should rest and take it easy, to recruit their willingness and make them part of the healing process. We have the data, the knowledge, the research-based information to get to the root of the issue – and explain it in simple terms to the people who need to know it.
Why don’t we use that information? Why don’t we just tell people what the deal is, and let them understand the root of their issues? Their brain has been jostled. Chemicals that used to be inside cells are now outside them. Their brain is having an energy crisis and needs time to settle down and repair. The more they rest and do certain things, the better their outcome is likely to be. That information is critical — and it’s actually been shown to prevent the development of PCS.
When it comes to concussive brain injury, we need to get out of our heads and look at the entire body — both literally and figuratively. The physical body. The body of literature and research. The body of community and professional support. We need to dispose of prejudices grounded in outmoded, decades-old neuropsychological mindsets which haven’t proved to alleviate the suffering they were created to address. We need to get real about the organic, biomechanical aspects of concussive brain injury and get beyond the limitations of DSM-driven diagnosis.
Despite Ruff et al.’s 1996 assertion that, in the cases they discuss, “resistance to recovery appears to have had its basis in unmet needs and trauma from early childhood”, I’d bet good money that
A) 9 times out of 10 in persistent PCS, we’re not talking about psychological resistance to recovery, and
B) all the focus on “unmet needs and trauma from childhood” has successfully blurred our vision of organic changes to the brain (and indeed, discouraged the quest to understand them).
I’d also bet good money that the vast majority of PCS sufferers actually want to be done with this shit and get on with their lives.
I know that’s true for me.
And I know that, until I quit all the navel-gazing people were encouraging, and started looking into the biomechanical and organic sources of my post-concussive symptoms, I was stuck in a self-perpetuating cycle of emotional lability and frustration and a fruitless search for help from people who could not help me. Only when I dug down to the physical roots of my issues and learned to see them as the products of physiological changes (which were made worse by my thinking about those changes), did I start to get hold of my symptoms and learn to actively manage them.
It’s my deepest hope that the same becomes true for many, many others.
This past weekend, I didn’t get much done that I’d intended to. Including my day off on Friday, I had four days to really dig in with some of the reading and writing I’ve been doing, and I was hoping to make some progress on a project I’ve been thinking about.
But Friday I met with my neuropsych to talk about the new providers they’re connecting me with. It was nice to just have the day, so I wasn’t racing to their office from my office, and then fiddling with my smartphone to answer emails from work. Then I met my spouse at their doctor’s office, and we reviewed the test results they got back. Their numbers were not where they were supposed to be, and that really worried us all. But now there’s a plan in place, my spouse is getting their act in gear and taking responsibility, and as a result of this “mini-scare”, they are making some choices about who NOT to work with.
That’s a positive step in the right direction. They’ve always had a bad habit of joining forces with shady types… people on the margins… outlaws of sorts… so they could produce events — workshops, concerts, gatherings. Alternative community, and all that. The only problem is, the alternative community scene that I’ve been observing over the past 20 years has a lot of people in it who struggle with mental health issues, but never seek formal help for those issues. So, there’s all sorts of behavioral “anomalies” that crop up — questionable behavior, controlled substance abuse, conflict that seems like it’s a case of multipersonality disorder or bipolar or schizophrenia, not to mention a fair amount of borderline criminality that just barely qualifies as legal. I was a part of that world, too, until I got into my TBI recovery. Once I started managing my neuro-cognitive-behavioral issues with both feet planted in reality, things started to clear up. But that’s not happening with my spouse or the crowd they work with.
So, that’s an ongoing cause for concern.
But my spouse realizes that being sucked into that world is wreaking havoc with their health, so they’re cutting ties with a number of folks who have been behaving in ways that aggravate my spouse’s chronic health issues.
So, that’s a new cause for hope.
But it still took up the vast majority of my time on Friday — and over the extended weekend.
On Saturday morning, I was hoping to get some good drafting done on an ongoing project. There was a chance I could even get it done (it’s not big). I did some more research into the persistence of post-concussion symptoms and the preventability of PCS, and as often happens, I found new threads of inquiry that I just couldn’t resist following. So, I got pulled off in a number of different directions that distracted me from my primary topic. That trend continued until yesterday evening. Three days now in my rear-view mirror that turned out unlike what I’d planned/expected.
One of the things that distracted me was Twitter. There is some serious scientific goodness posted there, as well as some compelling debates unfolding. The tone of discussions were bothering me, so I un-followed a handful of people who have just been complaining and sniping and taking pot shots at others. My feed immediately improved. No more cringeing when I logged in. That’s a plus.
I also realized that I can’t really dispense with Twitter, because as an outsider to the scientific and academic fields, it’s the one place I can actually keep up on research that’s coming out relative to my own interests. Twitter has really opened up a lot of ideas for me — some of them filling in gaps that had been, well, gaping for a number of years. So, yeah… I won’t be dispensing with Twitter anytime soon. Even if they do change the feed to relevancy-related, instead of sorted by time. It just gives me too much access to stuff I’d never otherwise encounter.
I really shouldn’t be surprised that I veered off course, almost from the start of Saturday. I am so focused on my schedule all work-week long, that by the time Saturday rolls around, I can’t be kept on the leash anymore. I need to move at my own pace. I need to be free to roam around and take the pressure off. I need to just let my mind think — not toe the line. As much as I like the idea of being ultra-streamlined-productive on my weekends and getting things done, the simple fact is, I need the time off to just let my mind relax and unwind.
And in the process of relaxing, amazing things happen.
That “open space” in my mind gives my organizing mind a much-needed opening to “what else is out there”. I get to play… with ideas… with concepts. I can let my mind stretch its proverbial legs and wander about and come up with entirely new (for me) concepts and approaches. It’s the kind of leeway I don’t get during the work week, when I have to keep on my schedule, and I’m so tightly wound, it’s crazy. When I loosen up and don’t put any pressure on myself to Think Of Just One Thing, amazing things happen.
That’s exactly what took place on Saturday. I got an inspiration for a project I’ve been working on, that feels like it’s gotten way too big. I figured out how I can “chunk it out” to be more useful — to myself and hopefully to others.
I found a bunch of research papers that intrigued me, and the more I looked, the more I found. So, now I’ve got a pretty sizable cache of papers that are just waiting for me to dig in.
And dig in, I shall. I started a new site a few months ago, called TBI Research Riffs, where I can discuss the brain injury and recovery research I’m coming across from the vantage point of someone who’s actually using it. Of course, being a multiple mild TBI survivor kind of disqualifies me in academic circles, thanks to the implication of brain damage and compromised thought process, but so what? It’s not hurting anyone that I’m playing with some of the ideas. I have no institution to answer to, I’m unaffiliated with any “camp” or governing body, and my words are my own.
Plus, I have a blog… and a Twitter account… and a bit of a following… so why not ask some pointed questions? The TBI research site has a horned bull as a logo for a reason 😉
Why not have some fun with it? I’ve been in and around the academic / scientific world all my life. My father was a college professor, my mother is an underachieving mathematical genius (think Good Will Hunting as a woman), my grandfather was a science professor and once served as the head of a statewide scientific academy, I have a cousin who’s a biochemist whose team just found a cure for a certain kind of cancer, my closest childhood friend and intellectual sparring partner is in the process of redefining an esoteric corner of philosophy, and I’ve got a handful of doctors in my family on the in-laws’ side. Being around them — both while growing up, and now — I’m continually struck by the political and logistical limitations that academia and funding put on them. It’s quite stifling, and it discourages them from really letting loose. And it’s a shame to see them so stymied by the requirements of their respective institutions.
That’s a shame. From what I’ve seen (and studied voraciously, back in the early 1980s), the real conceptual leaps are taken when you let your imagination run wild. But I don’t see much of that happening — at least, not in public.
In private, however… in the anonymous blogs, in the private journals, in the hidden workshops of independent and unaffiliated researchers, philosophers, and scientists… there’s a rich body of work emerging. And that’s pretty exciting to me. It seems to me that some of the most compelling science is happening on the margins. It almost has to — like Cavendish’es work — because the distractions and political exigencies of the institutionalized world are often antithetical to pure science.
So, I’m formally expanding my work in that area and getting better organized. I’m moving my research work off this blog and over to TBI Research Riffs. I’m going to keep this blog focused on my own personal experience, sticking with my day-to-day discoveries and developments from a personal point of view.
All my “sciencing” doesn’t really belong here. It needs its own space, where it can stay on topic. If anyone wants to read about me flailing around with great wailing and gnashing of teeth over logical inconsistencies in 20-year-old research papers, they can join me over there.
That will give me room to “play” in both domains, without blurring the lines with a bunch of pontificating and whatnot about esoteric or specialized topics that may not interest anyone other than me and the handful of people who dig into the research themselves.
Ultimately, of course there will be overlap. I’m a whole person, and each part of my life blends together and informs each other. Personal experience and scientific research are very much intertwined, as they should be. But this blog has always been about what it’s like to just live your life. So, I’m going to keep it that way.
What’s beneath can be much more compelling than what’s visible
Whether you’re concussed, had a stroke, were involved in a motor vehicle accident, or something in your brain ruptured… that injury has literally turned you into a different person.
Poor understanding, ineffective preventive half-measures, and inconsistent care, are the specters that lurk around every sporting event, every high-velocity activity, every action sport.
Indeed, nearly every aspect of our lives harbors some threat of concussive brain injury. From getting in and out of the shower, to walking down stairs, to getting in the car and driving to work, to going out to lunch, to moving computer equipment around, to changing paper in a copier, to just enjoying your weekend, one wrong move, one hasty decision, and your entire life can change.
Well, of course, there are some similarities, but it’s her story, not mine. I’ve just gone back and updated it with a notice at the very top and quotes around the story — it was easy to fix.
I wish all misunderstandings were that easy to fix.
I’ve also been fielding some comments in Twitter about things I’ve said, that apparently came off wrong. It is really, reallyeasy to be misunderstood on Twitter. I’ve had people thinking I was attacking them, or their sport, or something else they held dear… and then they “fought back” with both barrels blazing, when all I was doing was raising some questions.
All around, it seems like the online world is just primed for misunderstanding — and consequently, a fight. All around us, we are trained to see opponents and aggressors. And that’s a huge problem, when you can’t even disagree with someone and/or challenge their thinking without being seen as an aggressor (or micro-aggressor). There’s a fantastic article in The Atlantic about this (click here to read it), which I came across a while back. It explains a lot — especially with regard to the younger generation who seem to have amazing potential, but also seem incredibly hung up over every little thing.
All the fighting… good heavens. There’s a reason I backed off Twitter for a while. But there’s so much good research coming out that gets posted there, I have to check it out. There’s seriously some great reading available, thanks to all the tweets flooding my feed. I think the key is to not follow a lot of people who get snarky and vicious and outraged. Especially about politics. ‘Nuff said about that.
Anyway, I’m taking more time to think things through before I say / post / tweet them — or trying to, anyway. It’s hard, when the moment to respond presents itself, and there’s something in your mind that seems 100% appropriate and on-point.
I should know by now that that feeling of 100% certainty is a tip-off to the exact opposite being true. The more convinced I am of something, the more likely I am to be very much mistaken. So, I do know that. But that doesn’t always rule how I react and interact. Impulse control issues and all that.
I guess that’s what keeps things exciting. I just have to keep revisiting things that need a little tweaking… making sure I don’t do more damage along the way. I also need to know when to let it go. Not everything needs to be fixed the way I want it to be. It’s also important that I hold my ground and not give into bullying. Just state my case, say my piece, and leave it at that. If people understand, then great. If not, there’s no guarantee I’ll convince them.
Sometimes it’s best to just move on and leave it at that. Or just stop following some people… which I have been doing regularly, when their tone gets too unremittingly intense.
Anyway, it’s a new day. It’s Saturday. I have some time to myself today, and my headache has abated somewhat. I’ve got some reading I want to do, as well as some thinking. “Tinkering and thinkering” as I’ve heard it described in something I read recently. I’ve always got to be careful when I have free time, because I can very easily get carried away in all sorts of distracting directions.
Last week, I was caught up in researching mind-control techniques of expensive large group “personal growth” programs… and a week before that, I was caught up in some fringe neuroscience that is so far beyond me, it became apparent after two days of compulsive reading that I couldn’t even scratch the surface enough to wrap my head around the name of the phenomenon. Admittedly, it is good for me to range a bit farther afield in my reading and studies, but I can get too caught up in too many fringe activities, and then I lose valuable time for the things that I really do want to work on.
Like the handful of books I’ve started to write and got 3/4 of the way through, but are all waiting for me to pay attention to them again, so I can finish them up.
Anyway, today is different. I’m not feeling great — and ironically, not feeling great is a key factor in how well I am able to focus. When I’m feeling rested and fully functional, I get pulled off base very easily — all that energy gets spread too thinly — and I get nothing done.
But when I’m not feeling great — I’m at maybe 65% today — I know I have to be more deliberate in my activities and pick and choose. So, more gets done. And oddly, I have more clarity when I’m under the weather, than when I’m feeling at the top of my game.
I wouldn’t mind feeling just a little better today. Who knows? Maybe I will by the time the game is on this afternoon. I’ll pace myself. Take naps when I need to. And pick and choose the things I want to do.
I was just coming to terms with all my TBI issues, just learning about them, just realizing how very much all my TBIs had cost me, over the years. So, in hopes that I could somehow spare others the pain and isolation (and outright desperation) that comes with a mild traumatic brain injury, I started a blog. In part, it was to share what I had learned, as well as to keep a record of what I was finding so I wouldn’t forget it later.
I had a few up years and a few down years, but in 2015, things really took off.
I think the thing that really put wind under my wings was the algorithm changes at Google. As soon as they updated their methods of finding content, I started to get more visitors. The more visitors I got, the more interested I was in writing.
And the more feedback I got about what I was doing.
It’s been a wild 8 years.
And I’m committed to even more. Another 8? Maybe. Possibly even more.
The pieces are all there. Really, they are. We just have to put them in their places.
An interesting subject came up on Twitter, earlier today, and 140 characters is not enough to speak to it. So, this is my more considered contribution.
I sent out a slightly disgruntled tweet about how concussion / traumatic brain injury ratings really only apply to the injury itself — but they say nothing about the long-term effects of concussion/TBI.We need to consider the aftermath – with a different set of criteria that truly classify where a survivor is — and which helps them to get where they want to go.
I’ve said it before, and I’ll say it again — the real trauma of traumatic brain injury often happens after the injury itself. Compared to the maddening sh*tstorm that can follow you rest of your life, getting clocked / dinged seems minor by comparison. And unfortunately, it often gets worse — especially if you don’t get help right away.
It took me almost three years to figure out why all my money was disappearing, I couldn’t hold down a job, and my marriage was constantly on the rocks. I got help because I was desperate and relentless. And I got lucky.
Brief loss of consciousness, usually a few seconds or minutes
PTA for less than 1 hour of the TBI
Normal brain imaging results
Moderate TBI
Loss of consciousness for 1 – 24 hours
PTA for 1 – 24 hours of the TBI
Abnormal brain imaging results
Severe TBI
Loss of consciousness or coma for more than 24 hours
PTA for more than 24 hours of the TBI
Abnormal brain imaging results
Which is great — for doctors and insurance companies. It gives them a way to grade the injury up front, so they can apply the necessary techniques to treat the injured party… and approve them for payment.
But after the injury, what? The literature/research on long-term outcomes after traumatic brain injury is not nearly as voluminous as, say, material applying to schizophrenia or depression. There’s a reason for that — as a society, we’ve really only started to pay attention to traumatic brain injury / concussion as “a thing”, in the last several decades. Certainly, there are folks who have known a whole lot about it, but if our society isn’t aware of it as “a thing”, then funding doesn’t flow to the researchers as readily, attention doesn’t get paid, and the kind of development that needs to happen for real success just doesn’t occur.
We’re much better off now, than we were just ten years ago, but we still have a long way to go. And one of the areas where we have a long, long way to go, is how we address long-term effects and issues after TBI/concussion. The dangers of CTE are real — but only for a certain group of folks (athletes who repeatedly bang their heads in the course of practice and competition). For the rest of us, the dangers are different, but no less daunting.
One of the things that I’ve heard repeatedly from readers on this blog, is that they’re just grateful I’m putting into words things that they feel and experience, but nobody seems to know about. Over the past 7 years (which has racked up 402,548 page views — over 100,000 of them in this past year alone), I’ve talked about my intense mood swings, confounding emotional lability, anger/temper issues, light- and noise-sensitivity, tactile defensiveness, depression, a sense of isolation and defeat, chronic pain, headaches / migraines, cognitive difficulties, memory lapses, as well as the many advances forward I’ve achieved through hard work, lessons learned, a bit of professional help, and applying what I’ve read from a whole lot of TBI research. I’ve bitched and moaned about quality of life issues, relationship troubles, job difficulties, money problems. And I’ve done my best to celebrate and give thanks for the many good things that have come into my life.
I’ve also tried to discuss these issues with others, who have alternately dismissed my concerns and talked me through conceptualizing them differently, so they don’t derail me. I have far more strengths than weaknesses, and my actual measurable impairments can be counted on the fingers of one hand. So, I have every reason to Focus on my Strengths, Not my Weaknesses. Be grateful for the good, and get creative with how I live my life. Don’t dwell on the hardships. Take heart – be brave. I’ll be fine, if I just keep working at things.
The knowledge about my measurable issues has been both empowering and defeating. On the one hand, it means there’s plenty of room for me to grow — and not a huge need for me to stress out and worry. On the other hand, I sometimes feel even more crazy for not having a better grip on things.
If I were anybody else, if I continuously thought, “Well, I didn’t lose consciousness for more than a few seconds, and my measurable deficits are relatively few, compared to others,” I might be inclined to give up. But I’m contrary. And I like to think for myself, so…
But countless other concussion/TBI survivors are dealing with dismissal and minimization on a daily basis. Once we recover from the physical injury — the lump on the head goes down, the headaches ease up, the all-consuming brain fog abates (somewhat) — we have very few places left to go. And should our evaluations turn up with numbers that make us look, well, pretty much “within range” for normal life, that reduces our options even further. Unless we can connect with someone who truly understands the scope and impact of TBI, we have to rely on the kindness of strangers whose willingness to “indulge our delusions” is our only ticket to any form of rehabilitation. Left unaddressed, persistent TBI-related behavioral, cognitive, emotional, and physiological issues can become an avalanche of hurt.
In the absence of neurological expertise, we so often have to turn to psychological approaches, which are geared towards mental illness, not structural brain injury. While they are much more robust and well-developed, pure mental health approaches carry a host of hidden dangers — among them, serotonin-suppressing meds that exacerbate our brain fog and depressive symptoms, and a type of emotional “excavation” (Tell me how you’re feeling, deep down inside – don’t hold back. Let it all out!) which follows transient emotional lability’s magically winding Pied Piper path to explore dead-end paths that have no substance in reality, but feel real enough to us, because of our neurological condition. My God, if I had a dime for all the times my neurological issues were mistaken for childhood trauma issues and I was encouraged to dredge up my deepest, darkest secrets because it was supposed to help me, I’d have no money problems. At all.
We really are in a wasteland of measurements and data, with regard to long-term outcomes for TBI/concussion.There are some post-TBI quality of life studies out there, but they are relatively sparse. And the fact that there’s so much self-reporting is a little troubling — quality of life scores could be based on anything, really, and conditions that have nothing to do with TBI could contribute.
What’s more, quality of life is a subjective rating. And it may not pinpoint the specific areas that need to be addressed. If you’re going to measure stuff, you need to be at least a little detailed and objective. The game of baseball, which is a relatively straightforward game, has a more advanced and complex (and universally agreed-upon) way of keeping track of the action, than TBI recovery. Throughout the sports world, stats collecting and tracking is a veritable art form — and that’s for entertainment, not a life-and-death health issue. We can’t manage to invent the same for TBI recovery? Really? Something is wrong with that picture.
The house is my ongoing situation. The vision is the established neuroscientific approach.
What’s even more wrong is that so many people who are in a position to actually take action and make a contribution to TBI recovery are failing to step outside their system-imposed box and simply consider — just for a moment — that there might be more going on with the concussion survivor in front of them, than what’s on their chart and what’s in the eval results from a test taken six months prior. Their focus too often stays on the quantifiable data, guiding them in a specific direction, while they ignore the gaping blind spot — a veritable case of advanced macular degeneration in the “sight” of the neurosciences industry.
I’m confident that eventually measurements will be developed for the right kinds of data. As more and more concussed/brain injured folks report about how absolutely shitty their lives have been after their injuries, and how much that’s cost their families, employers, communities, commercial ventures will be started to serve that “market”. Funding will appear for studies to help standardize the methodologies and terminology — as well as develop new billable treatments. A whole ecosystem will spring up to fill this need. It’s only a matter of time. But we’re not there yet.
TBI Beyond Tau
Overall, few of the talks at SfN focused on tau, instead highlighting other aspects of brain damage. Michal Vascak in John Povlishock’s group at Virginia Commonwealth University, Richmond, detailed what happens to axons after brain injury. Vascak used a model of mild TBI in which a device rapidly injects a small volume of saline into a mouse brain, subjecting cells to a fluid concussion wave. This does not cause brain lesions or hemorrhages, but a diffuse, widespread axonal injury ensues as fragile neuronal connections twist and shear around the injury site. Moreover, even those axons that do not break may be affected, Vascak said. He reported that two days after injury, intact axons did not fire properly. He wondered if this might be due to changes in the axon initial segments, where action potentials are generated.
To get a closer look at those segments, Vascak used confocal microscopy to image individual uninjured axons in postmortem mouse brain two days after injury. Using specific markers to identify the ends of initial segments, he found that the distal end had shrunk by about 2 μm. Since this end triggers action potentials, the change would alter neuronal firing properties, and that in turn might affect overall network excitability, Vascak suggested. The data demonstrate that TBI can affect the properties of even intact axons.
Brain injury is a society-wide issue.
This past weekend, I didn’t get much done that I’d intended to. Including my day off on Friday, I had four days to really dig in with some of the reading and writing I’ve been doing, and I was hoping to make some progress on a project I’ve been thinking about.
So, 
Broken Brain - Brilliant Mind 