The latest evidence is pretty hard to ignore. The research leader is Dr. Ann McKee, chief of neuropathology at the VA Boston Healthcare System and director of the CTE Center at Boston University. She examined the brains of 111 deceased NFL players. Of these, 110 had CTE, the degenerative disease caused by repeated blows to […]
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.
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.
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.
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
Loss of consciousness for 1 – 24 hours
PTA for 1 – 24 hours of the TBI
Abnormal brain imaging results
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.
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.