The roots of our brain injury recovery

What's beneath can be much more compelling than what's visible
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.

Despite plenty of research around persistent PCS symptoms (there are thousands of papers on Google Scholar about PCS and the “miserable minority”, and returns nearly 9,000 results for “miserable minority” and post concussion syndrome), 10-20% of concussed individuals continue to experience symptoms. So, the information and treatment doesn’t appear to have had significant effect, in all the years they’ve been working on it.

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.

And soon.

The roots of our brain injury recovery

What's beneath can be much more compelling than what's visible
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.

Read more here — where I discuss the various aspects of understanding the nature of TBI and recovery on  my TBI research blog at

#PCS after #concussion? #TBI? Welcome to the #MiserableMinority

"Neuropsychology of Malingering Casebook" miserable minority reference
Neuropsychology of Malingering Casebook” Miserable Minority reference – click to see full-size

I’ve had better days. I worked from home, yesterday, due to a combination of bad weather and having no compelling reason to drag myself to the office. I had hoped to get into the office today, but after a couple of hours of being up, I had to go back to bed.

Migraine. Pain. Just feeling wiped out. Not sick, just all turned around, the way I get sometimes when my head and body aren’t cooperating with each other and the rest of the world very well.

Not much fun.

I did get to bed at a decent hour, last night, so that was good. But it didn’t seem to help much, this morning.

So, when I ran out of steam this morning, I just went back to bed. I set my alarm for 11:30, because I had a 12 noon conference call scheduled. I woke up a little earlier, and lay in bed, curtains closed, just trying to get myself in gear. Usually, I can. And today I could have, but when the notification came through that my conf call was cancelled — Oh, sweet relief!

And I stayed in bed. I had my tablet on the bedside table, so I checked Twitter, and wouldn’t you know, there were a bunch of tweets about the concept of the Miserable Minority — those folks who have been concussed, whose symptoms don’t clear up within a few weeks.

Apparently, it’s a “thing” — this subgroup of concussed people who don’t bounce right back the way everybody else seems to do. And neuropsychologists have been referring to us as “the Miserable Minority” (I’ll say MM for short) for quite some time. It’s still going on.

I’m not sure how I feel about that. It strikes me as just a tad dismissive. Do they intend to ridicule us? ‘Cause that’s sorta kinda how it sounds.

I’m not sure what goes on in the minds of these folks. I know that in medicine and science, having a label for a subgroup can let you talk about that group and develop uniform “game plans” for them. So, that could be handy.

I just wish they had a way of talking about us that doesn’t make us sound like a bunch of whiners, complainers, and malingerers. It also minimizes our struggles, by calling us a “minority” — as though we don’t quite warrant all that much concern or attention or focus. I’ve heard that there are conference topics devoted to us, but I don’t have the evidence to support it (yet) — workin’ on it.

Believe me, I’d much rather be at work, right now, tapping away at my company-issued keyboard, than sitting in a darkened room, having to choose between light that makes my head hurt and not getting anything productive done.

The one thing that I wish our healthcare providers would understand through and through, is that this “Miserable Minority” is made up of a sh*t-ton of high achievers, Type A folks, formerly functional superstars, and strong-spirited individuals who crave contribution to the larger world. We’re not the kind to sit around making excuses and complaining for the fun of it. Or because we want attention. We’d much rather be back on our feet, able to participate as the gifted, talented, determined individuals we are.

But because medicine hasn’t figured out how, yet, and because too many providers are lax in mastering their material, we’re stuck in this limbo.

Yes, it can be miserable.

But we’d rather not be. And some of us would give anything to not belong to this “minority”. The last thing I want to do, is linger in this foggy haze of pain and blurred senses. And I know I’m not the only one.

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