#concussion hysteria? Enough spitting – let’s team up

Brain injury is a society-wide issue.

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 driven to 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.