TBI Research Riffs – a different take on brain injury research

Why not? We need more voices in TBI research land.

So this is my new blog – dedicated specifically to TBI research. I’ll be posting intermittently here specifically with TBI research in mind.

I’m both a technologist and independent researcher, and I’ve spent a huge amount of time since 2007, piecing together the fragments of truth about my history of mild TBI / concussion.

While I know that in principle, brain injury survivors (or patients in general) can’t reasonably be expected to have a clear, unbiased view of their own situation, it’s my sense that a huge amount of relevant insight (and data) is lost because formal research is dismissing or disregarding the perspectives and subjective experiences of those dealing directly with brain injuries.

My academic training was in the social sciences, including a few years abroad at a European university well-known for its academic rigors and cultural contributions, and it was drilled into my head (so to speak) that the subject of a study cannot possibly have a clear view of their own situation. You’re best off studying complete strangers who are entirely foreign to you. Hence, you’ve got Frenchmen marching deep into the Amazon jungle to study the Yanomamo, rather than exploring psychedelic pursuits in their own back yards.

Well, that’s all fine and good, but here’s the thing — I think they may be wrong about the clarity thing. What’s more, I’m not entirely convinced that any researcher can be 100% objective in their assessments. Being human and all, we’re each and every one of us subject to our own biases, and imagining yourself to be an uninvested bystander just opens you up to all sorts of assumptions. Your presumption and process-driven pursuit of objectivity blinds you to your own subjectivity. And that — IMHO — makes for shitty research of limited use to others.

Anyway, since I’m not affiliated with any academic institution, I’m not allied with any organization, I’m not governed by any licensing body, and I’m self-funded through my daily work in technology, I’m pretty much free to do as I please, read what I want (at least, the studies I can access), and make my own statements about them. I’m not beholden to anyone, I’m not under scrutiny by any oversight committee, and I have no professional peers to get me in line.

So, I can take a fresh look at research from both an outsider’s and an insider’s view. And I can say what I please — for the consideration of others. I’m an academic outsider. But I spent much of my childhood on college campuses with relatives who were professors, and I was basically raised by gregarious Ph.D.s, so I’m not leery of jargon (even when I don’t fully understand it at first). And I’ve got an insatiable mind that needs to keep busy, to keep out of mischief. I’m a TBI insider with tons of actionable insight into what makes TBI tick, and how to understand and effectively address it.

I know both worlds, so why not use that to my advantage? Others might benefit in the process, as well.

As I usually say… Onward…

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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