The roots of our brain injury recovery

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 Google.com 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.