After TBI – How do you restore a Sense-Of-Self?

Photo credit: Myshelle Congeries

Photo credit: Myshelle Congeries

Five years ago, I started giving a lot of thought to what traumatic brain injury does to your Sense-Of-Self. Of all the things that brain injury does to a person, disrupting your sense of who you are and how you fit in the world is one of the most dramatic and disruptive pieces of the puzzle.

What’s more, it’s the most hidden one of all — obscured from those around you by “weird” changes in your personality experiences… and hidden from your own view, because it’s hard to tell what’s what, when your brain has been injured.

In fact, I believe that losing your sense-of-self is one of the most traumatic elements of traumatic brain injury. Yes, the injury was traumatic. But it’s the ensuing days and weeks and months and years that take the real toll for many. And if the disconnect is big enough between who you and everyone else understand yourself to be, and the person you appear to have become, it can wreak havoc — both internally and externally.

There’s a reason so many TBI survivors don’t have a lot of friends. Fatigue is one aspect. But also, our old social circle has a way of dissipating, when they realize you’re not the person they’re accustomed to.

It’s serious business. And it has profound impact. But other than a few folks, here and there, I haven’t actually found much writing about it — how to understand it, how to explain it, how to see it in the larger social context… or for that matter, constructive advice on how to actually do something about it.

Losing my sense-of-self was a massive “hit” to me and my well-being and quality of life. And it didn’t just happen once. It happened a number of times. Each time I got clunked on the head or slammed around in a car accident, I’d come back with a little more of myself missing. I couldn’t explain it to anyone — after all, I hadn’t even gotten knocked out. What was I complaining about? What was there to complain about?

It was terrible. And the worst was after my fall in 2004, when the injury was more severe and the change was more marked than it had ever been. It was sheer hell. And I had no idea who I was, anymore.

So, a couple of years ago, I decided to write an extended series on the subject. A book-length work, with chapters posted here, so people can read it.

And I was making good progress. I really felt like I was making strides, like I was getting myself back, and I was able to share what I’d learned with those who needed to know about my experience.

But then I hit a snag. All of a sudden, last summer, I stopped feeling like I knew who I was. I wanted to write about restoring my own Sense-Of-Self, but I just couldn’t. Because I really wasn’t sure, myself. There were still holes in my sense of who I was, still gaps left from an injury that was over 10 years old, but wouldn’t seem to f*cking heal. It felt all wrong, to be talking about getting my Sense-Of-Self back, when I didn’t feel like I’d done it.

Well, it’s been six months since I stopped moving forward, and in that time, I’ve settled down quite a bit. And while I do have my “off” days, I have to say, I actually feel like “myself”, most of the time. And I now actually feel as though I can speak to how a person can actually get back a sense of their Self.

There are bound to be those instances when I look around me and don’t feel like any of it is familiar… like I’ve been dropped off somewhere by folks who were giving me a ride, and decided they didn’t want me in the car anymore, when I feel asleep and started snoring too loudly. I think, because of my injuries, that may never go away 100%. But even so, I can honestly say that pretty much all the time, I actually feel like myself, again.

It’s an updated version of mySelf. But it has a whole lot in common with the earlier versions of me. And although it may feel foreign, at times, that foreignness actually feels like me. It’s not like I’ve been dropped into someone else’s body. It’s me, having the experience of not feeling like me — as me. If that makes any sense.

And in fact, the very experience of not feeling like myself, has become one of the identifying factors of my sense of who I am.

It’s familiar. It’s not always comfortable. But I have become certain that I mySelf can handle it just fine.

And I do. Because that’s who I now know myself to be.

Time to write another chapter.

You can read TBI S-O-S – Restoring a Sense-Of-Self After Traumatic Brain Injury here

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Slogging through – some days (weeks) are like this

solitude-imageI don’t know why, but this week has been a hard one for me.

It seems to be taking forever.

And yet, I feel like it’s still Monday, with precious little getting done.

I’m tired. And when I’m tired, everything gets harder… and feels longer. I know that much.

I have been thinking a lot about the shift society needs to make in its thinking — and talking — about concussion and mild TBI. That’s taken a lot out of me.

Also, my spouse got test results back from the doctor, and the warning-sign numbers which should be going down, have been going up. They’ve got a couple of chronic health conditions that they need to manage closely, and they’ve really been slacking off over the past months. They also skipped a couple of blood draws, because they were anxious about doing it. So, for months they have not known that their numbers are high — which really does a number on their system.

Tomorrow they need to go back to the doctor (and take me with them) to discuss what to do.

I know what I’m going to do, in addition to sitting there and listening. I’m going to have a talk with the doctor directly to see if they can recommend that my spouse start seeing a neuropsychologist for help. My own neuropsych has helped me tremendously with my thought process, and they’ve strengthened my ability to think things through to an amazing extent.

I really think my spouse could benefit from this, as well. They have neurological issues, and they have never addressed them with a neuropsychological professional. Their neurologist is almost useless, other than for prescribing the meds they need.

The original neurologist missed identifying both of their strokes, and also said they were on the opposite side of the head than what they were (possibly from misreading the MRI). And after we questioned that first neurologist about a medication they prescribed because all the literature said it could mess with certain very important levels, they pitched a little hissy fit and tossed a bunch of medication writeups at me and told me to pick one myself, which I did. And it was a good choice. My spouse has been successfully on that med for nearly 10 years. Of course, having your patients pick their own medications raises some issues about medical care, but let’s not get into that right now.

This new neuro is only slightly better, telling us that the medication we rejected because of clearly documented dangers (in the literature, as well as clearly on the warning label), was perfectly fine. Their particular sort of narcissism presents as deep-seated insecurity and emotional neediness… where the original neuro’s narcissism was all about them being an unassailable expert who was, basically, a god (tho’ clearly they were not), who was inconvenienced by patients who interrupted their European vacation schedule.

Unfortunately, my spouse is so profoundly anxious about doctors, that they refuse to look further for another. Even though the current one is basically just a pill dispensing machine, and good for precious little else. I really believe my spouse’s issues have to do with poor executive functioning and short-term working memory problems. In additionto the strokes, they’ve had at least one CBI (Concussive Brain Injury or mild TBI) that I know of — they slipped on the ice and fell back on their head while getting the mail one day about 15 years ago, they were dazed and confused, and for months after that, all they did was yell at me and get freaked out over… everything.

So, their thought process is not great. Which just feeds their anxiety. I saw a mention of some research about how anxiety is tied to short-term working memory issues, the other day, but I can’t locate it now. Anyway, it’s clear to me from watching them for 25 years, that their attention and memory issues just feed their anxiety. And that causes them to make poor decisions. AND that leads to yet more problems. Including the erosion of their thought process. It’s a vicious cycle.

So, a neuropsych might possibly help, where meds and exhortations to “get it together” simply don’t work.

That’s more than I’ll be able to say tomorrow. I need to find a way to put it, so that the doctor can hear it. And I need to say it in front of my spouse, so they don’t think I’m plotting against them. They get a little paranoid. When I step back and look at my life and the way my spouse behaves, it just looks crazy. They look mentally ill. Which they are.

But they have other strengths. And they’re not like this all the time. It’s just when it’s extreme.

Then “the crazy” bubbles to the surface. And it’s not much fun, I can tell you that.

So, the main thing is for me to stay calm and cool and collected.

Which of course is a bit of a challenge, because my work situation is pretty uncertain, and I’m feeling the burn of being a 50+ individual contributor in an industry that favors 25-year-olds with mad skills in the latest technologies. I have experience and a level head. But I’m not in a position to sell myself cheap, so if a company can get two employees for the price of one, they’re usually going to do it.

Anyway, this might be moot, if my old employer (who was very sad to see me go and would love to have me back) has a spot open for me. Looking back, I realize now that they had a pretty awesome structure — since they’re based outside the USA, and they operate by European norms, where people are actually valued by the company rather than tossed aside like so much detritus, they have all sorts of safeguards in place to actually keep people in their jobs.

It’s a very different scene than high tech the States, where everything is so much in flux, and people aren’t people — they’re human resources, to be shuffled around, as it suits the folks in charge… and out, if it’s more profitable to do so.

Last week, I saw a bunch of news articles on the increase in mortality among middle-aged white folks. The authors were puzzling about why that’s so. If they have to puzzle, they aren’t paying attention. And they clearly don’t realize that America is a place where it’s easier to die after you turn 50, than it is to live.

It’s hard to not feel disposable in this society. It’s very hard, indeed.

But some good rest would help, I’m sure.

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Mission accomplished – got my medical records

medical-recordSo, I’m seeing a neurologist in a little over three weeks, and I have to get them my most recent medical records, which include my MRI and neck X-Ray, as well as the notes from the doctors. I was going to send in my request form, then I thought I’d better just go to the hospital and get all the records myself. It can take 5-10 working days to process everything, and between the time it takes for the forms to get to them through the mail, their processing time, and then the time to send it through the mail to the neuro’s office, it was cutting it close.

So, I just took a long lunch and went myself.

And a good thing I did. Because I mis-read the form and put the wrong dates in. And the person providing the records also couldn’t figure out which ones on the list I wanted, even though I checked ALL RECORDS. I’m glad I didn’t just mail it in, because who knows what would have actually gotten sent?

Plus, now I have a copy of the records for myself, and I can take a look at what the old neuro had to say about me. Plus, I now have a copy of my X-Ray, which is cool. I love imaging. Even if I don’t 100% know what I’m looking at, I still love to inspect it.

Fascinating.

Anyway, now I have half my stuff. The other half has to come from my neuropsych, who said they would update my report from before on Sunday, but I haven’t heard from them, so I think they either forgot, or they got busy and couldn’t do it. Who knows what happened? It’s just par for the course – they have been making (and breaking) promises to me for years. Not that they’re any different from anyone else in my life. I see to attract those sorts of people like flies are drawn to a dropped ice cream cone.

Anyway, I’m bushed. It’s been a long day. I may have to find another job before long, because the merger is approaching, and there are questions about the healthcare that’s going to be offered. The plans the new company has are not very good. And I was stuck with one of them before, when I was first trying to get treated for my brain injury stuff, but all I got was a runaround.

I’m reaching out to former colleagues to see if there are any opportunities at places I used to work. One of them may work out. But nothing is certain. I’ll just hang in there… and update my LinkedIn profile while I’m at it.

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

camel-spittingBrain 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.

Posted in Personal Experiences with TBI | Tagged , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , | 3 Comments

Update on the doctor front – neuro located

doctor-front

First the nurse practitioner, then perhaps the neurologist

Will wonders never cease… I have an appointment with a neurologist’s office in a little over three weeks.

And they look like a good one. They come very highly recommended by the neuro I was seeing before, and they also specialize in sports neurology and TBI. That’s exactly what I was hoping for, and I didn’t even specifically articulate it to the folks who have been helping me look around.

It’s important to me to work with someone who understands an athlete’s mentality, because that’s what I’ve always had — and I continue to. If anything, I’m more of an endurance athlete than I was when I was running cross-country and track in high school. Every day is an endurance test for me, and I have to keep myself fit, to keep on.

I have to see a nurse practitioner before I see the neurologist. This might be to make sure I’m not a malingerer or just looking for drugs. I’m sure they also want to identify exactly what the deal is with me, because TBI patients (and other patients as well) can be a challenge to “pin down” in terms of issues and treatable symptoms.

Sometimes people just want someone to talk to. That’s not me. I just want an expert to consult with me, using their professional experience to help me with the migraines, potentially the sensory issues, and most of all, help me stay upright — and keep from getting yet another brain injury from a fall.

At this point in my life, I’d just settle for the last one. I don’t like going the meds route with my migraines. I’ve found that cutting out the triggers of chocolate and too much coffee, as well as drinking enough water will keep them at bay. And while the sensory issues (especially touch being painful) is disruptive and is a strain on my marriage, I’ve been living with it for nearly 50 years, and it’s not posing an imminent danger to me. Falling is the biggest danger I’m dealing with, and it’s ongoing. I’ve nearly fallen down stairs a number of times, over the past couple of years, and I can’t afford to have that happen yet again. So let’s focus on that, why don’t we.

I’m pretty excited about the prospect of having a decent neurologist.

And now I have my next-steps:

  1. Contact all the places where I had imaging done and get copies. Fortunately, they are in the same healthcare system as the hospital where I had my MRI and EEG in 2007, so they can probably just pull it up on their system. I also need to contact the hospital where I had my most recent MRI and neuro consult, and have them send me my records. Or, better yet, since their systems are pretty much a shambles, and I have no confidence that they’d be able to get my materials to me on time… I’ll just go pick them up.
  2. My neuropsych is writing up an report on my issues and progress, as well as recommendations and warnings on any meds that might be prescribed. That’s important, because there are certain meds I cannot have, because they screw with the systems that have already been compromised by multiple brain injuries. Meclizine, which is a common medication prescribed for nausea and vertigo, has been prescribed to me by a PCP in the past — and it made me feel drugged. It was also recommended to me by an actual neurologist (who should know better considering my history of brain injury), but I told them I couldn’t have it. So, I had to save myself.
  3. Collect my thoughts and narrow down my discussions to the main issues. Not all of them. The nurse practitioner I’m going to see will do an intake, first. I think I’m going to have to schedule a later appointment for the neuro, proper, but with the NP, I need to be clear and concise, as well. So, I’ll practice my spiel and make sure I don’t range too far afield. I’ll also practice not crying, because that tends to happen when people show me too much compassion. It happened at the last neuro, and I hate it. It makes me look like an emotional wreck, or someone who’s trying to get attention. I need people to stay objective and scientific, so I don’t lose my sh*t.
  4. Lastly, and most importantly, I need to be realistic. I’m nobody to this neuro, really. I’m just another patient in a sea of faces, who is highly functional in many ways and less in need of help than probably most of the other people they see. I’m not one of these high-value patients — young, with their life ahead of them, and a bright, productive future on the horizon, if they can only resolve their neurological issues. I’m not a top-1% professional with a slew of letters after my name. I’m a 50-year-old techie who doesn’t want to fall down and get hurt again. Basically, I just don’t want to get hurt and end up destitute, homeless, or dependent on the system. If I fall again, that might end up happening. They have no reason to pay any special heed to me, and while a true professional can be expected to treat all patients with the same respect and regard, practically speaking, that doesn’t always happen, so I can’t let it get to me, if it doesn’t. Maybe they’ll be able to help me, maybe they won’t. I’ll stick with that one thing — not falling down — and not take up a lot of their time. And I’ll keep on with my life.

This whole diagnosis and treatment thing makes me nuts, if I think about it too much. It’s really hard for me to A) figure out exactly what the real issues are with me, and B) articulate them in a manner that has any meaning for doctors. I have an exhaustive (and exhausting) understanding of all my issues, as well as the subtle interconnections between each. But it’s hard for me to articulate it all and make it mean anything to a medical provider. The current medical system is inclined toward that degree of subtlety. There’s just no time. And if I let myself off the leash and just talk, I usually end up looking like a crazy OCD attention-seeker.

I’ve got to keep myself in check.

Of course, there’s always the danger that appearing “too functional” will work against me. They might just decide that I don’t have any issues at all, and I’m just wasting their time.

At the worst, I’ll just be back where I am now… figuring things out on my own, and piecing things together as best I can.

And that might not be such a bad thing, after all. Only time will tell.

Onward.

Posted in Personal Experiences with TBI | Tagged , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , | 4 Comments

Divide and Conquer – 5 Reasons changing the #concussion term makes sense

snoopy-flying-going-downYesterday, I got a bit of flack for suggesting that the term “concussion” should be used for the impact which causes the brain disruption, while “brain injury” should be used for the result of that impact. People just didn’t like that idea very much, and they particularly objected to my “awful cartoon” saying “Concussion is the event, Brain Injury is the result”.

I tried to engage in a discussion about exactly why that image is so terrible, but I never got a response. Then someone else chimed in that “concussion isn’t an event, it’s a process” and others agreed. Yep, it’s true. Concussion, as we currently understand and discuss it, is absolutely a process. The thing is, I think we’re mistaken in lumping everything together.

So, I got on with my day and decided to let it go. It’s a process. I know that as well as the next person. It’s not worth fighting over.

As I was driving around last evening, picking up meds and other supplies from the pharmacy, it occurred to me that I shouldn’t just give up on my idea. There are in fact a number of benefits to using the term “Concussive Brain Injury” or “CBI”, rather than “concussion” alone. It’s even more useful than “mild traumatic brain injury”, which is technically what a concussion is.

Here’s my short list of benefits from the switch to talking about CBI – and the problems that could solve.

  1. “Concussive Brain Injury” or “CBI” calls the injury what it is — a brain injury produced by a concussive impact. It combines elements from both concussion and brain injury concepts. It describes a consciousness-altering impact which may or may not involve loss of consciousness, and may or may not have lasting consequences, but needs to be watched. And it includes the brain in the mix. It causes you to sit up and take notice – and not take it lightly, because it is, after all, a brain injury. Most importantly to me, CBI literally is what it says it is.
  2. CBI gets the word “mild” out of the discussion. Yes, what we call a “concussion” is in fact a mild traumatic brain injury (mTBI), but very few everyday people understand what “mild” means. They don’t care about the Glasgow Coma Scale or Rancho or the other criteria used. The problem is, “mild” gets translated wrong — and it works against healthcare providers and survivors alike.Those who have experienced mild TBI know there is nothing mild about it. And yet, “mild” is right smack dab in the description of our injury… for all the world to latch onto as proof that we’re faking it or taking advantage of the situation, to slack off. “Mild” makes it tempting to take your injury lightly and not fully rest and recover. And that’s never a good thing. As an added bonus, removing “mild” from the definition can eliminate that sports reporting blight: references to “mild” concussion. That misuse is so wrong, and yet so common. Wouldn’t it be fantastic, to have a term for a concussive brain injury that doesn’t include the misleading designation “mild”?
  3. CBI gives us a separate designation from TBI. Yes, yes, yes, I know it is a TBI, but that term has been used so widely in connection with the military (and they’ve more than earned the right to do just that), and it so often goes in hand with references to PTSD, that there’s a certain charged association that goes along with it. TBI is one of the invisible wounds of war in our collective consciousness, with all the connotations that accompany it. And that can be a pretty heavy thing to lay on someone who fell down some stairs. Concussive brain injuries within the civilian population — from sports, accidents, assaults, falls, etc. — have a different nature than blast injuries and wounds of war. And having a separate term that’s specific to post-concussive situations gives people something more tailored to their conceptions, which they can use as a point of reference. For that matter, call it “Civilian Brain Injury” for good measure. And to the point in #2 above, CBI removes mild TBI from the status of a “mini-me”, less serious version of real TBI.
  4. CBI is an acronym, and that’s a plus. People like acronyms. Especially when they’re specialized. CBI is short, it’s sweet, and it’s a term people can use, when they want to look good to others — which is often. No, I’m not being cynical or flippant. I once drove widespread adoption of a new technology solution at a global enterprise, overcoming widespread push-back from a lot of very temperamental colleagues simply by renaming it with an acronym. CBI could work, too.
  5. The name “CBI” might just eliminate “concussion-like symptoms” from our conversations about concussive brain injury. That expression makes me almost as crazy as “mild concussion”. And it gets talked about as much. What are people going to say? CBI-like symptoms? It doesn’t work as well as “concussion-like”, so people just might stop saying that type of nonsense.

Those are my top 5 reasons why I favor the term CBI over  mild TBI.

To me, it just makes sense.

Posted in Personal Experiences with TBI | Tagged , , , , , , , , , , , , , , , , , , , , , , , , , , , , | 4 Comments

Divide and Conquer – Why separate #concussion from #TBI?

concussion-imagingThe two-part article I finished on Saturday was pretty lengthy — nearly 5,000 words in all — so I’m not sure if it’s going to get a lot of readers. People tend to like shorter pieces they can pause to read for a few minutes… and then get on with their day.

I’m like that, myself.

But I got very caught up in the piece. I’d started it on Friday night in a flurry of inspiration, and when I woke up early on Saturday morning, all I could think about was finishing it. As I wrote, more ideas came to me that really got the juices flowing, and it really pulled me right along.

I also came across a great article in The Irish Times ‘It’s traumatic brain injury, not concussion’ which talks about how we need to stop whitewashing brain injury issues and stop referring to traumatic brain injuries as “concussions”. There’s a lot of really great food for thought in that article about how we understand brain injury, as well as how we talk about it. It’s a great read! Check it out

Some of my favorite excerpts:

At issue is, what is concussion? Popular definitions talk of a “functional” disturbance in the brain, implying or stating there is no physical damage to the brain. This is incorrect. The brain is damaged in concussion in a number of ways, perhaps the most significant injury being to the fine “wires” or axons coursing through the white matter of the brain.

4. What is the difference between a head injury and a concussion?

BOD: A head injury may be a laceration which may not necessarily lead to suspected concussion. A concussion does not necessarily have to be caused by a head injury; it can for example just be caused by a tackle. Concussion may be caused either by a direct blow to the neck or face or elsewhere on the body with an impulsive force that is transmitted to the head. This is because concussion is due to the acceleration, deceleration and rotational forces on the brain – a soft mass surrounded by fluid inside a rigid casing (the sponge in a bucket effect).

WS: In common, they are both unhelpful terms. And neither tells the story of the diagnosis. A bit like the chest pain analogy above. Chest pain could be anything from insignificant indigestion to life threatening myocardial infarction. We need to move away from “concussion” to what it is: “traumatic brain injury”.

So, that fueled my fire.

Yes, the term”concussion” is all wrong.

We need to move away from it.

But yet, it’s so common.

What to do? What to do?

I brainstormed a bunch of ideas which might actually work, if we gave them a chance… or developed them further with logic and common sense, rather than personal preferences or professional/commercial agendas. (There’s a ton of money to be made from concussions, so that complicates things.)

By midday, I posted the last of the piece… and almost immediately started fielding expert objections to my suggestion that we should use the term “concussion” exclusively for an impact that damages and alters your brain function.

A number of times, I was told in social media that “Concussion is not an event, it’s a process.” (Though, if that’s the case, then logically, there is no such thing as Post-Concussion Syndrome. Without a distinct event set in time, there is no “post”. There is only Concussion Syndrome. So, you see the logical quandary.)

And I had to step away to think about that. Ultimately, though, I came back to my original thought:

We need to stop using the current term and concept of “concussion”. We need a better terminology that calls it what it is — a brain injury. We also need to  conceptually distinguish the concussive event of getting slammed, from the brain injury that follows, so that we can more effectively address each aspect as separate parts of a continuous whole.

My rationale is:

  1. Concussion is a commonly understood term which has massive investments behind it. Nobody in their right mind is going to flush all that time, money, awareness, etc. down the proverbial toilet. I foresee major push-back on that point.
  2. Designers and manufacturers of protective gear and concussion testing equipment need to change how they position themselves. They can certainly do some good at a certain stage of the concussive process. However, they currently overreach and promise the moon, claiming to do things they frankly can never, ever do (e.g., prevent brain injury that comes from concussion). What they can prevent and mitigate is the impact itself. They should focus on that, and quit running the risk of brain-injury-related lawsuits arising from their exaggerated claims.
  3. Our ability to realistically discuss risks, diagnose injuries, and treat brain-based deficits post-concussion is limited, because we don’t think about it properly. The brain is rarely, if ever mentioned when we talk about “concussion”. Using a term which specifically avoids mention of the core issue — brain injury — doesn’t help us understand, assess, or address the real issues at hand. Including the term “brain injury” forces us to get real. Real quick.
  4. Lumping everything together under one poorly understood (and easily misinterpreted) umbrella term makes it very difficult for injured individuals and their caregivers/guardians to understand the issues they’re facing. It also encourages specialists to encroach on each others’ territory. This promotes needless conflict and jockeying for position between complementary practitioners who can and should be working closely together, each in their own respective area of expertise. This muddying of the waters helps no one. It hurts all of us.
  5. Changing the terminology from “concussion” to “concussive brain injury” is not terribly difficult to do, when it comes to information resources. All the pamphlets, PDFs, websites, booklets, and PowerPoint slides out there can be updated with this new terminology without completely rewriting all the copy. As a former technical writer who produced massive sets of documentation for software on multiple operating systems, I know that search-and-replace pain all too well. Having terminology which is additive, rather than completely revisionist, is a plus.
  6. If ever there was a time to do this, it is now. The movie Concussion has raised public awareness — opening the chance for discussion at a national and international level. Experts may understand the various stages of concussive brain injury, but the general population doesn’t. And having a single blanket term does a great job of confusing an already anxious society. If we’re going to help the general public fully understand, appreciate, and address this profoundly disruptive issue which affects every part of our lives, we need to change the way we talk about it — and the way we name it.

Despite objections, I truly believe we need a sea change in how we talk about concussive brain injury. And that includes the name we give it. The term “Concussive Brain Injury — CBI” could suit us nicely — and tick all the boxes for public awareness. More to come…

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Divide and Conquer – A million reasons not to ditch the word #concussion

There are millions of reasons to not ditch the word “concussion”. It’s simple. It’s easy to remember. It’s in widespread use, with many millions of dollars worth of reading materials, research studies, merchandise, and commercial brands emblazoned with that word. Not to mention the task forces and the organizations devoted to conquering concussion. We can’t just throw it all away. That would cost us dearly.

There are also very practical reasons to hang onto the term. “Concussion” isn’t emotionally charged like “brain injury” is. You can talk about it without implying that somebody is brain-damaged…  which is never an inviting prospect. And you can actually have a public and legislative discussion about… well, brain injury… without ever calling it what it is.

From personal experience, I can tell you, people get freaked out when they think and talk about brain injury. If you never call it that, you can have a lively public debate and develop policies around protecting student athletes, while steering clear of the emotional toll taken by imagining someone brain-damaged. You can take steps to prevent their brains from getting damaged, without ever implying that they could get brain damaged by their athletic activities, which offer them so much structure and lessons for life.

And that’s extremely helpful, especially when dealing with a skittish, worried, and wary public, their school administrators, athletic coaches, and their elected officials.

So, how can we possibly get rid of the term “concussion”? It seems an impossible thing.

Of course, we could keep the term “concussion” to refer only to the concussive event that produces the alteration of brain function resulting from axonal shearing and the metabolic cascade that happens after the impact. That would actually be much more accurate.

I know, I know, concussion as we currently understand it is a process. But frankly, I think the science is still too young to be declaring, once and for all, This Is How It Is. Or that This Is What We Should Call It. Cementing policy and terminology at this point, could lock us into trajectories of research and public policy that ultimately backfire on us.

We’re in a dynamic state with our data and our analysis and our public response. It’s all in flux. Once upon a time, we thought that concussive symptoms were caused only by the blow to the head. Now we know there’s rotational elements as well, axonal shearing, a metabolic cascade of biochemical mayhem, and a lot of other internal stuff that goes on to complicate matters further. We also know that concussions aren’t only caused by direct blows to the head. A blow to the body, or really anything that whips you around hard enough to damage the fragile connections in your brain, will do it as well.

So, it’s reasonable to expect we’re going to learn even more as we go along. And as our understanding changes and more facts come to light, our terminology is going to change, as well. It’s inevitable.

It might very well turn out that there are a number of separate and distinct phases to concussive brain injury, each of which has its own characteristics, each of which should be dealt with and addressed in its own way. But for now, I’m focused on two pieces of the puzzle — the concussive impact which damages the brain and kicks off the agents of brain injury… and the resulting injury itself.

But what do we call the whole process? Yes, it is a process, and yes, we need to treat it as such. My proposal is that we have an overarching term that includes elements of both impact and resulting injury.

We could call the whole deal “CBI – Concussive Brain Injury“, because that’s really what it is.

We don’t lose the familiar and popularized concept of  “concussion” — the investment in that term “concussion” is massive, and it would be waste to lose it. Excising it would also be technically inaccurate. There is a concussion element — it’s just not the end-to-end phenomenon.

Plus, when you see concussion as a distinct element of the overall process, this limited definition actually gives concussion its rightful place in prevention, mitigation, and research. It’s not being dismissed. It’s being elevated to a distinct component which deserves deeper inquiry. And all the policies, initiatives, companies, and products that are being developed to prevent and mitigate concussion can be kept in place — if in a slightly modified form.

After all, the commercial and organizational efforts to prevent and mitigate brain-altering blows to the head and body are specific to the concussive event. And you can realistically talk about preventing and mitigating damaging impacts through policy and product offerings. Brain injury… not so much.

Re-designating “concussion” to the concussive event itself seems like a positive first step in solving a pressing society-wide problem: how to even begin to think about concussive brain injury in productive, problem-solving ways.

See 5 reasons why changing the name to CBI (Concussive Brain Injury) makes sense.

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#Concussion and mild #TBI – connected, but distinct – Part 2 of 2

Concussion is the cause. mild TBI is the effect

Concussion is the cause. mild TBI is the effect

Continued from Part 1

The logical disconnect started when I first heard Robert Cantu, M.D. give the official definition of Concussion:

Concussion: Derived from Latin concussio(n-),
from the verb concutere ‘dash together, shake’

That surprised me. So, I looked it up. Sure enough, there it was in black-and-white. Here, I was talking about concussions as a collection of symptoms and issues, slowed processing speed, emotional lability, or sensory hypersensitivity. And I was hearing a lot of other people talking about concussions in precisely those terms. I (and everyone else) was using it interchangeably with “mild traumatic brain injury” or “head injury”.

But the meaning of the word “Concussion” doesn’t have anything to do with the brain injury itself. It actually has to do with the action which causes the brain injury — the shaking of the brain, as well as how it dashes against the inside of the skull.  Like the word “percussion” – from the Latin percussio(n-), from the verb percutere ‘to strike forcibly’.

Hm. Conundrum.

So, the word “concussion” is NOT about the injury itself. It’s actually about the source or cause of the injury. It’s about the action of the brain and skull which produces the injury, not the injury itself.

“Concussion” was closer in meaning to the word “collision”, than it was to “brain injury”.

There are many other concept pairings that mirror this:

Cause Result
Slip and Fall Broken Leg
Jogging Shin Splints
Lifting Heavy Weights Slipped Disk
Car Accident Facial Lacerations
Concussion Brain Injury

So, to be totally clear, Concussion is the actual event of having your brain shaken and/or dashed against the inside of your skull. The proper term for what you get as a result of that, is Traumatic Brain Injury. It’s intimidating, yes. It’s scary, yes. Considering what a “black box” the brain is to most people, including plenty of General Practitioner docs, labeling an injury as “a brain thing” elevates it to a mysterious niveau shrouded in secrecy and confusion.

Unfortunately, it happens to often, that giving into the intimidation and steering clear of “that brain stuff” is about the worst thing you can do. You’ve got to talk about the brain. You’ve got to talk about the injury as what it is — a neurological issue, which may or may not clear up in the space of a few weeks.

When talking about Concussion treatment, I think this point is absolutely critical. We can’t afford to keep mixing up our terminology.

A doctor doesn’t treat a car accident. They treat the injuries after a car accident.

You don’t recover from a collision. You recover from the injuries you received from that collision.

A doctor doesn’t treat a fall. They treat the contusions, sprains, and other trauma from the fall.

When a doctor treats a “Concussion”, he/she is treating a brain injury. Not the impact itself. Steering clear of calling a thing what it really is, makes it very difficult to understand and treat.

As for the Concussion itself, once the impact was over and the brain stopped being shaken and dashed against the skull, the Concussion stopped. The injured individual subsequently acquired a brain injury.

Impact and effect. Two different things.

When you’re talking about concussion prevention, you’re talking about preventing the action of the brain and skull and neck (and perhaps the whole body) which produces a brain injury. By association, you’re going to be mitigating at least some risk of brain injury — often addressed with protective gear and different techniques of play/tackling. But you’re not going to 100% eliminate the threat of brain injury, by preventing conditions that produce concussion. Due to the force (mass x linear acceleration) of the moving body, there is only so much that a helmet or a different technique will do to reduce the force of the brain inside the skull. Two players moving fast can still collide with the force of an automobile accident, helmets or no. And the brain, sitting in its somewhat protective envelope of fluids, is going to move. It is not staying put.

When we interchange the terms “concussion” and”brain injury”, we’re really talking about is two different things — cause and effect… action and result… connected and interrelated… but not identical.  Nor interchangeable.  We confuse the two, and in the process, we fail to identify the actual problems that need to be fixed. We fail to understand the nature of them. We fail to adequately assess the impacts of them. And we certainly can’t fix them.

What’s more, we’ve got folks on all sides of the issue “stepping on each others’ toes” because they are all claiming to do the same thing — prevent and treat concussions — when they would more effectively divide their activities between preventing concussions and treating the resulting brain injury. Professionals, academics, policy-makers, product designers, manufacturers, and everyday people who are campaigning against concussion, are mixing their terminology, conflicting with each others’ agendas, getting pissed off at each other, and failing to unite around a common cause… all because there’s not a clear distinction about what we’re actually dealing with — for real.

So, where does this leave us?

While generally annoying (and sometimes infuriating), this situation leaves us with a lot of opportunities to explore. Those opportunities can be found in:

  1. Redefining the problem(s) more accurately than at present
  2. Tackling (so to speak) the individual problems separately, according to expertise
  3. Collaborating on the issues, with distinct experts combining their expertise in complementary ways
  4. Raising awareness about the true nature of concussions and brain injury
  5. Discussing the details of each aspect with candor and courage
  6. Measuring actual outcomes of steps taken
  7. Continuously monitoring the progress we’re making, recognizing where we succeed, and where we fall short
  8. Developing public policy that supports a deeper understanding of concussion and TBI, so organizations and individuals can make smarter choices based on fact, rather than fear

First, I think our definitions of Concussion and mTBI could use some refinement.

Here’s my proposal, drawing on the UB definitions above:

  • mTBI = an alteration of brain function, resulting from mechanical force or trauma which may or may not involve loss of consciousness (See the AANS definition of Concussion)
  • Concussion = a shaking of the brain, possibly involving impact against the inside of the skull, which may produce mTBI
  • Post-Concussion Syndrome (PCS) = persistent symptoms of mTBI past the period when the individual should have recovered (3 weeks)
  • PCS is an indication of mTBI (rather than qualifying as one)

Ideally, we’d have a comprehensive term to “wrap around” the end-to-end phenomenon.

Since there are multiple stages in the development of a TBI after concussion, it may not be realistic to have one catch-all term. However, what we now call “Concussion” might be more accurately termed “Concussive Brain Injury” — CBI, for convenience.

Second, we need to “chunk out” the issues that are specific to each phase of CBI, to address each specifically and effectively.

We need to divide and conquer, so to speak, like so:

cbi-flow

The realm of Concussion prevention is the First Line of Defense. However, it’s never going to be 100% guaranteed. Focusing intently on Concussion prevention, as though it is a potentially fail-safe approach (it’s not, and it never will be), actually sets us up for reduced access to the help we really need.

For when that First Line “fails” to protect, there’s a “Zone of Dismay” you need to pass through, in order to effectively treat the TBI that results. The First Line defenders have to admit that their approaches weren’t fail-safe, the folks who were 100% behind that First Line of Concussion Defense have been let down — and confusion, frustration, and an inevitable sense of betrayal ensues.  It’s this Zone of Dismay, I believe, that often blocks injured individuals from getting the help they need. What First Line defender would ever want to admit that their approaches are limited? And what individual(s) who placed their faith in them, wants to be let down?

But clearly, when there’s an injury, brain injury treatment needs to be pursued. Here’s where the diagnosis and treatment come in. And the monitoring after the treatment ensues. You have to understand how things are going, if they’re working, if they’re not… and address and adjust accordingly.

Third, the parties on both sides of the Zone of Dismay need to collaborate

There needs to be clear communication between the two sides, so that they can most effectively address their own individual piece of the puzzle. CBI prevention and treatment cannot possibly be done properly in isolation. You need a team approach, a team effort. Brain injuries change over time. They present differently from person to person. So, whether it’s open communication between helmet manufacturers and coaches/teams/school districts… free flow of diagnostic information to determine Return To Play/Learn/Work… continued communication between patient and healthcare providers… or any other parties involved in the situation… the more quality information gets passed along, the better the chances of a positive outcome.

Fourth, everybody needs to quit playing around and get real about Concussion and Brain Injury.

Players, coaches, parents, teachers, employees, employers, peers, superiors, collaborators, providers, consumers… everybody needs to get a clue about what the true nature of this type of injury is. People need to learn about the symptoms, the effects, the impact, and just how widespread it is. Coaches need to admit if they’ve had a long history of head trauma, while playing their sport, and factor in their choices and behavior accordingly. Enough of the denial. Enough of the half-measures. Brain injury from concussion can be a lasting thing — and sometimes a deadly thing. If it doesn’t kill you right away, it can chip away at you, bit by bit, over the years, till you end up a shell. A homeless, institutionalized, imprisoned, or otherwise incapacitated shell.

We as a society are grossly under-educated about not only the terrible outcomes possible, but also the potential for full recovery. There’s a common thread in cultural conversations about brain injury: that it changes you forever and you will never be the same after. It makes for big news and it catches people’s attention. But is it the whole story? No. But we don’t often hear the other side. This version of the story is, in my opinion, the biggest, most chilling factor in people’s fear of facing up to brain injury. There’s such a dismal prognosis, in general — thanks, in part, to the alarming findings of CTE in football players, young and old, and in the recorded incidence of TBI in the prison population. We as a society certainly don’t help the general populace face up to concussive brain injury. We scare the living sh*t out of them. Yes, it gets funding — a lot of funding. But at what cost?

Fifth, everybody involved needs to discuss the facts with candor and courage.

Many folks who have experienced concussive brain injuries are living full lives, many of them having recovered remarkably well, compared to their official prognosis. Moreover, millions of individuals have been clunked in the head, and kept on living their lives, regardless. Getting worst-case about it, just makes things harder. But information and realistic discussion about what’s what will go a long way towards making communication possible.

Communication covers all quadrants — athletic, medical, employment, academic, domestic… And people need to have the right information. When someone’s got the wrong idea, others need to speak up — like when a CBI is making you miserable, but you keep getting pressured to get back to normal. You’ve got to speak up. And those who are looking out for brain-injured folks need to speak up, when they see them making poor decisions and going in the wrong direction. The truth helps – but you have to welcome and work with it.

Sixth, we need to measure the results of what we’re doing.

We need to track the steps we’re taking to see if they actually work. What works for some, will fail for others. But if you don’t measure it, you can’t manage it.

We need some common measures for CBI severity, other than the Glasgow Coma Scale, which doesn’t help much with estimating the impact of a concussion. There are other ways to measure, and we need to find them. Again, this is going to take some coordination, and I haven’t the faintest idea how that’s going to happen. Nevertheless, I’m just going to put it out there, in case someone wants to take on that task.

Seventh, real recovery takes continuous monitoring, and adjusting to beef up the strong points and minimize the screw-ups.

Because we will screw up, now and then. It’s human. And we learn. We adjust. We need to make it permissible to err — and then learn in the process. People who are terrified of being proven wrong, or shown to be in deep error, don’t tend to be very forthcoming. So, we need to conceptualize our prevention and recovery approaches accordingly — leaving ourselves some wiggle room for lessons learned.

Just as important, is tracking the stuff that goes right — and focusing on that. CBI can be a real b*tch, and recording the times when you’ve come out on top is very, very important — for you, and those who care about you.

Lastly, it would be helpful to have uniform public policies in place that are based on facts, rather than fear.

Nobody likes to get sued. Nobody wants a generation of young football players and cheerleaders, ice hockey stars, and soccer superstars set up for misery in life (sooner or later). Nobody likes to sit by and do nothing, while an epidemic rages. Policies are accordingly enacted, with states and municipalities putting protective measures in place. But are the policies always comprehensive and based on fact?  It would be a miracle, if they were. Information about concussive brain injury changes and grows and shifts with each passing week, it seems. And guidelines are updated. How policies can be kept in line with the latest emerging findings (some of which may be important to consider ASAP)… that’s another conundrum.

So, that’s my modest proposal.

Distinguish between Concussion and Brain Injury, recognizing the two are different and distinct sides of the same coin, and they feed back into each other.

Concussive Brain Injury (CBI) affects thousands upon thousands of people each year, and the ways we talk about the injury itself is impacting our ability to address it.

The terminology is jumbled, confusing the event (Concussion) with the effect (Brain Injury), and that makes it difficult to discuss — and treat.

Ultimately, I believe that “chunking out” the issues will not further complicate an already fragmented issue. I believe that it will enable the most appropriate resources and experts to focus on the specific aspects they are most qualified to address. Rather than spreading ourselves so thin across the conceptual landscape of the “Concussion Crisis”, we need to break down the elements, tackle them one by one, and piece together a more comprehensive and textured approach to what is clearly one of the most significant health issues of our day.

But as long as we keep fighting over owning the whole territory, a comprehensive solution that will serve the wide range of concussively brain-injured individuals, will continue to elude us.

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#Concussion and mild #TBI – connected, but distinct – Part 1 of 2

Concussion is the cause. mild TBI is the effect

Concussion is the cause. mild TBI is the effect

Back in 2010, I discovered the work that University at Buffalo is doing on concussion recovery. It was very exciting, and it sowed some seeds of compelling thought in my racing brain… and those seeds are now starting to sprout again — spring is on the way, right?

At the UB web page on concussion research, I found some interesting papers which talk about the difference between concussion and mild TBI.

In the paper Retest Reliability in Adolescents of a Computerized Neuropsychological Battery used to Assess Recovery from Concussion (bold is mine) they say:

A recent review … of concussion and post concussion  syndrome provided a model for distinguishing concussion from mild traumatic brain injury (mTBI) and post concussion syndrome (PCS). The model uses the most commonly accepted definition of mTBI and the one proposed by the American Congress of Rehabilitation Medicine and the Centers for Disease Control: loss of consciousness for no more than 30 minutes or amnesia as a result of a mechanical force to the head, and a Glasgow Coma Score (GCS) of 13 to 15 …. The model also uses the most commonly accepted definition of concussion as established by the American Academy of Neurology (AAN): a trauma induced alteration of mental status that may or may not involve loss of consciousness …. Although not explicitly stated in the AAN definition, concussion is generally viewed as a transient state from which the individual will recover fully in a relatively short period of time …. In contrast, mTBI is viewed as a permanent alteration of brain function even though the individual with mTBI may appear asymptomatic. Post concussion syndrome was defined in the Willer and Leddy … model as persistent symptoms of concussion past the period when the individual should have recovered (3 weeks) and therefore qualifies as mTBI. Neuropsychological testing is often used to describe the impairment associated with mTBI and PCS and have done so with relative success ….

So, basically, according to them,

  • mTBI = a loss of consciousness for no more than 30 minutes or amnesia as a result of a mechanical force to the head, and a Glasgow Coma Score (GCS) of 13 to 15
  • Concussion = a trauma induced alteration of mental status that may or may not involve loss of consciousness; it’s a transient state from which the individual will recover fully in a relatively short period of time
  • Post concussion syndrome (PCS) = persistent symptoms of concussion past the period when the individual should have recovered (3 weeks)
  • PCS, due to its enduring nature, qualifies as mTBI

(Note: I think more work needs to be done to to fill in the gap about how PCS satisfies the criteria for mTBI,  because — by their own definition — Concussion does not involve loss of consciousness or amnesia. So, POST-Concussion Syndrome would never include the LOC required for mTBI.)

Originally, I found this information compelling, and it helped me make more sense of the whole “concussion thing”. I’ve sustained a number of blows to the head in the course of my life, and I have been diagnosed with “Late effect of intracranial injury.” But oddly, until my neuropsych referred to my head traumas as “concussions”, it literally never occurred to me that I’d sustained one (or 9). I can get pretty literal in my thinking, and because that word was never used in connection with my injuries, I never once thought of my mild TBIs as concussions.

Now, over the course of the past years, I have repeatedly read that concussion and mild TBI are the same thing. And at first, it made sense to me. It was actually a relief, because for once, I could think and talk about my history of head trauma without implying that I was brain-damaged — which has a whole slew of problems attached. Brain damage doesn’t really get good press in the world I inhabit. Survivors are often portrayed as suicidal, homicidal, freakish, severely impaired, and/or the brunt of others’ ridicule, exploitation, or persecution.

When many people think of brain injury, they think of brain damage. I did, too, until around 2010. Technically, I suppose there is a damage element to it it. But none of my friends, whom I’ve told about my mild TBIs, would believe that I had sustained that many blows to the head. I was just too functional. I was just too … normal… At least, as far as they could see. My personality and behavior just didn’t square with the kinds of functioning and behavior they expected from someone who’d been brain-injured. That’s what they told me. I just wasn’t “brain damaged enough”, I guess.

Aside from other people’s ignorance and personal biases about this invisible injury, I’ve also had a hard time conceptualizing my mild TBIs as actual brain damage. I know that I have a number of physiological and logistical issues I need to navigate on a regular basis, and I know that my executive functioning is not what it could be. I know that my impulsiveness, poor planning practices, behavioral “irregularities”, and those danged emotional ups and downs are not typical for everyone around me. And while I’ve always struggled with those “irregularities”, I know my issues are a whole lot worse than before I fell in 2004.  So does my spouse.

But brain damaged? That term is so charged, and it brings up so many different images and impressions. It’s loaded with a not-so-great emotionally laden reaction, which I’m sure I share with others.

Beyond the visceral response… outside my own head and in the wider world around me… when I looked around, I was very uncomfortable with the idea that everyone who has their consciousness altered after getting clunked on the head has an injury to their brain. According to concussiontreatment.com, “An estimated ten percent of all athletes participating in contact sports suffer a concussion each season”, but I found it hard to believe that 10% of all athletes who compete each season are walking around with brain damage.Think about it — with multiple sports seasons per year, and athletes rotating in and out of sports, that’s a hell of a lot of people getting dinged.

And it’s not just athletes who get concussed. Plenty of other people fall down, too, or are in car accidents, or get beat up, or have things fall on their heads.

Here’s the CDC data for 2002-2006:

Estimated TBIs 2002-2006 - There is no estimate for the number of people with non-fatal TBI seen outside of an emergency department or hospital or who receive no care at all.

Estimated hospital treatment of TBIs 2002-2006 – Note: There is no estimate for the number of people with non-fatal TBI seen outside of an emergency department or hospital or who receive no care at all.

And the numbers have since increased — probably due to better data collection and more reporting by injured folks. As awareness grows, more people are inclined to treat their head injuries seriously and seek medical help. And medical providers are paying closer attention.

According to the CDC:

  • In 2010, about 2.5 million emergency department (ED) visits, hospitalizations, or deaths were associated with TBI—either alone or in combination with other injuries—in the United States.
    • TBI contributed to the deaths of more than 50,000 people.
    • TBI was a diagnosis in more than 280,000 hospitalizations and 2.2 million ED visits.  These consisted of TBI alone or TBI in combination with other injuries.
  • Over the past decade (2001–2010), while rates of TBI-related ED visits increased by 70%, hospitalization rates only increased by 11% and death rates decreased by 7%.
  • In 2009, an estimated 248,418 children (age 19 or younger) were treated in U.S. EDs for sports and recreation-related injuries that included a diagnosis of concussion or TBI.
    • From 2001 to 2009, the rate of ED visits for sports and recreation-related injuries with a diagnosis of concussion or TBI, alone or in combination with other injuries, rose 57% among children (age 19 or younger).

And the numbers keep changing, increasing each year as reporting gets better. Just in the past several years, the CDC changed the number of annually reported TBIs from 1.7 million to 2.4 million, I have no doubt the figures will continue to rise.

Now, here’s the thing. If mild traumatic brain injury implies brain damage, then how come more people aren’t incapacitated? Thousands upon thousands of people sustain traumatic brain injuries each year, yet the general population doesn’t appear to be completely crippled by brain damage (though some people I know would debate that ;) ) How is it possible, that so many people are injuring their brains, especially in their youth and/or in sports, yet so, so many are able to carry on as normal?

That’s where UB’s distinguishing Concussion from TBI made sense to me. It removed the implication of brain damage from a head injury. It offloaded the spectre of debilitation from the mix, and it gave it a name that actually removed the inscrutable black-box brain from it, period. And that made it a lot less scary to deal with.

At the time I read the UB paper in 2010, making the distinction between a concussion that is transient, and a head injury that’s a TBI made all the sense in the world to me. It made it possible distinguish between someone who’s experiencing irritating short-term issues, and someone who needs to deal with a broader-spectrum impact and a deeper set of challenges. And in doing so, the term concussion de-stigmatized the experience (at least in my mind). It steered my thinking away from the “concussion ==> brain damage” concept, which was intimidating and stymied my ability to think clearly about my injury.

I’m sure I’m not the only person who feels this way. I would imagine the thought of being brain-damaged could be disheartening and even debilitating to a youth who has hit their head while playing a sport they love… or to the parents who love them dearly and are concerned for their safety and future. And if someone who got rear-ended at a stop light is branded as brain-injured/brain-damaged, what does that mean for their career and their ability to live fully as an adult?

Calling a mild traumatic brain injury a “Concussion” solves a number of personal and social problems. It gives you permission to be injured for the time being, without making you permanently damaged. It gives you a word you can use with others without the immediate danger of being doomed to their eternal dismissal.  There are tons of potential ramifications and implications from believing that concussion is not necessarily a brain injury. And that helps in the public discourse, as well as in the privacy of your own personal life and personal thoughts.

And yet… over time, that distinction has worn thin in my mind. There’s something about using the word “Concussion” that doesn’t square with me.

To be continued…

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