One concussion, two concussions, three concussions, four…

I had a meeting with my neuropsych last week, when we talked about my concussive history. I had read the article by Malcom Gladwell in the New Yorker called Offensive Play, and I had some questions about how my past might have made me more susceptible to tbi, later in life.

I was wondering aloud if my rough-and-tumble childhood (when falling and hitting my head and getting up and getting back in the game ASAP were regular parts of play), might have brought me lots of subconcussive events, like so many impacts on the football field. I checked in with my neuropsych, and they had me recap from the top, all the head injuries I could recall. My recollection and understanding of them was considerably better than it was, just six months ago. What came out of it was the determination that I’d had enough genuine concussions to do a fair amount of damage to myself. Forget about subconcussive events; the concussive events sufficed to cause plenty of problems, on their own.

It kind of threw me off for a day or two, and I got pretty stressed out and ended up pushing myself too hard, and then melted down in the evening. Not good. It’s hard, to hear that you’re brain damaged. It’s not much fun, realizing — yet again — that you haven’t had “just” one concussion, but a slew of them. And considering that I’m in this new job where I have to perform at my best, it really got under my skin. It’s taken me a few days to catch up on my sleep and settle myself down, after the fact. But I’m getting there. My past hasn’t changed, nor has my history. I’m just reminded of it all over again…

All told, I’ve sustained about eight concussions (or concussive events) that I can remember. Possible signs of concussion (per the Mayo Clinic website) are:

  • Confusion
  • Amnesia
  • Headache
  • Dizziness
  • Ringing in the ears
  • Nausea or vomiting
  • Slurred speech
  • Fatigue

Some symptoms of concussions are not apparent until hours or days later. They include:

  • Memory or concentration problems
  • Sensitivity to light and noise
  • Sleep disturbances
  • Irritability
  • Depression

I experienced most of these (except for nausea and vomiting, and not so much slurred speech, that I can remember) during my childhood and teen years. Not surprising, considering that I had a number of falls and accidents and sports injuries over the course of my childhood.

It’s pretty wild, really, how those experiences of my childhood contributed to my difficulties in adulthood — especially around TBI. I’ve been in accidents with other people who had the same experience I did, but didn’t have nearly the after-effects that I suffered. For them, the incident was a minor annoyance. For me, it was a life-changing concussion. A head injury. TBI. Brain damage. Geeze…

Thinking back on the course of my life, beyond my experiences with the accidents that didn’t phaze others but totally knocked me for a loop, I can see how the after-effects like fatigue and sensitivity to light and noise, really contributed to my difficulties in life. It’s hard to be social and develop socially, when you can’t stand being around noisy peers (and who is as noisy as a gaggle of teens?). It’s hard to learn to forge friendships with girls — who always seemed so LOUD to me(!) — or hang with the guys — who were always making loud noises, like blowing things up and breaking stuff — when you can’t tolerate loudness.

And when you don’t have the stamina to stay out all night… It’s a wonder I did as well as I did, as a kid. Of course, I was always up for trying to keep up – I was always game. And I wanted so very, very badly to participate, to not get left behind, to be part of something… That kept me going. I was just lucky to have people around me who were kind-hearted and intelligent and tolerant of my faults and limitations.

Anyway, I did survive, and I did make it through the concussions of my childhood. I have even made it through the concussions of my adulthood.  And I’m still standing. I didn’t get any medical treatment for any of these events, and the most help I ever got was being pulled from the games where I was obviously worse off after my fall or the hard tackle, than I’d been before.

But one thing still bugs me, and it’s been on my mind. During my high school sports “career, ” I was a varsity letter-winning athlete who started winning awards my freshman year. I was a kick-ass runner, and I won lots of trophies. I also threw javelin in track, and by senior year, I was good enough to place first and win a blue ribbon in the Junior Olympics. Which is great! I still have the blue ribbon to prove it, complete with my distance and the date. But I have no recollection of actually being awarded the ribbon, and I barely remember the throw. I’m not even sure I can remember the event or the throw. It’s just not there. It’s gone. And it’s not coming back. Because it was probably never firmly etched in my memory to ever be retreivable.

I’ve never thought of myself as an amnesiac, but when it comes to my illustrious high school sports career, when I was a team captain and I led my teams to win after win, I have all these ribbons and medals and trophies, but almost no memory of having earned them.

Which really bums me out. What a loss that is. When I hear Bruce Springsteen’s song “Glory Days” I feel a tinge of jealousy that the guy he’s singing about can actually recall his glory days. I can’t. And that’s a loss I deeply feel, mourn… and resent. Seriously. It sucks.

This could seriously mess with my head. And sometimes it does. But on the “up” side, it might also possibly explain why I’ve been such a solid performer over the years, in so many areas, yet I can’t seem to get it into my head that I am a solid performer. My memory of having done the things I did, in the way I did them, is piecemeal at best, and utterly lacking at worst. So, even if I did do  well, how would I know it, months and years on down the line? How would I manage to form a concept of myself as successful and good and productive and inventive and trustworthy, if I have little or no recollection of having been that way in the past?

It’s a conundrum.

But I think I have an answer — keeping a journal. Keeping a record of my days, as they happen, and really getting into reliving my experiences, while they are still fresh in my mind. If I can sit down with myself at the end of a day or a week, and recap not only the events of the past hours and days, but also re-experience the successes and challenges I encountered, then I might be able to forge memories that will stay with me over time. If nothing else, at least I’ll be making a record for myself that I can look back to later. And I need to use colors to call out the good and the not-so-good, so I can easily refer back to the date and see where I had successes and failures along the way.

Most important, is my recording of successes. I’m so quick to second-guess myself and assume that I don’t know what the hell I’m doing. And when I think back to the times when I overcame significant difficulties, I often lose track of the memory before I get to the end of the sequence I followed to succeed.

But I cannot let that situation persist. I need a strategy and a practice to reclaim my life from the after-effects of way too many concussions. I’m sure there are others in life who have had it far worse than me, but some of my  most valuable and possibly most treasured experiences are lost to me for all time, because I have no recollection of them.

No wonder my parents often start a conversation with me with the sentence, “Do you remember ________?”

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Building my cognitive-behavioral exoskeleton

MTBI can do a lot of damage, in terms of shredding your existing skills and long-accustomed habits. It can really undermine your thinking and judgment, so that you never even realize you need to do things differently than you did before. And it requires that you force your brain (and sometimes body) to push harder and harder, even when every indication around (and inside) you is saying, “Let up… let up…”

This can be very confounding. I encounter — all the time — people who are keen on “taking it easy” and doing things “with ease and grace”. They think this is a sign of superior evolution. They think this is a sign of superior character, as though it means they are more “plugged in with the Universe”. They don’t want to have to expend the effort to get things done. They want Spirit/YHWH/God/Creator to do it for them. They don’t want to take a chance and extend themselves, because they are convinced that a Higher Power is more capable than they, and they believe they should just “get out of the way” and let that Higher Power take charge of their lives.

That may be fine for them, but that mindset drives me nuts. First of all, it absolves them of any responsibility for their actions. If things mess up, they can say it was “God’s will” or part of a “higher plan”. If things get really messed up, they can say they just need to be more “in tune with Spirit”.  I have a bunch of friends who are convinced that they are “channels” for Divine Inspiration, and that’s how they should live… just floating along on a tide of holy impulse. And their lives are a shambles. Objectively speaking, they are constantly marinating in a brine of their individual dramas and traumas. It’s just one thing after another, and all the while, they keep expecting Spirit/YHWH/God/Creator to fix all the messes they’ve helped create.

It’s very frustrating to watch this willful disregard of basic cause and effect, but I suppose everybody’s got their stuff.

Now, it’s one thing, if these people (some of whom are very dear to me) are content to live their lives that way, but when they expect me to do the same — and they judge me as being less “evolved” if I do things differently — it’s a little too much to take, sometimes. I don’t do well with living my life from a distance. I don’t do well with telling myself that I’m just floating along on the divine breeze, waiting for some wonderful opportunity to arise to save me from my own creations. I need to be involved in my own life. I need to be invested. I need to put some effort into my life. I need the exertion. It’s good for my spirit. It’s good for my morale. And it bolsters my self-esteem, as well.

Anyway, even if I wanted to just float along, I couldn’t. I’d sink like a rock. I’m not being hard on myself — this is my observation from years of experience. I can’t just ramble about, taking things as they come. I need structure and discipline to keep on track, to keep out of trouble, to keep my head on straight. I can’t just be open to inspiration and follow whatever impulse comes to mind. My mind is full of countless impulses, every hour of every day, and if I followed each and every one, I’d be so far out in left field, I’d never find my way back. I have had sufficient damage done to the fragile connections in my cerebral matter, that the routes that neural information takes have been permanently re-routed into the darkest woods and jungles of my brain. All those injuries over the years didn’t just wash out a few bridges — they blew them up. And they slashed and burned the jungle all around, and dug huge trenches across the neural byways I “should” be able to access.

As my diagnostic neuropsych says, “I am not neurologically intact.”

So that kind of disqualifies me for just winging it in my life. I tried for years to “go with the flow”, and I ended up flit-flitting about like a dried oak leaf on the wild October wind. I got nowhere. I can’t live like that, and I know it for sure, now that I’m intentionally trying to get myself in some kind of order. My brain is different. It has been formed differently than others. It has been formed differently than it was supposed to.

I can’t change that. But I can change how I do things. I can change how I think about things. I can change by facing up to basic facts. As in:

  • My thinking process is not a fluid one, anymore. In fact, I’m not sure it ever was — for real, that is. I’ve consistently found that when I’ve been the most certain about things, was the time when I needed most to double-check.
  • If I don’t extend myself to get where I’m going, I can end up sidelining myself with one minor failure after another. One by one, the screw-ups add up, and I end up just giving up, out of exhaustion and/or ex-/implosion… and I can end up even farther behind than when I started.
  • It’s like nothing internal is working the way it’s supposed to, and the standard-issue ways of thinking and doing just don’t seem to hold up.
  • My brain is different from other folks. It just is. It doesn’t have to be a BAD thing. It just is.

On bad days, it’s pretty easy for me to get down on myself. I feel broken and damaged and useless, some days — usually when I’m overtired and haven’t been taking care of myself. But on good days, I can see past all that wretchedness and just get on with it.

Part of my getting on with it is thinking about how we MTBI survivors can compensate for our difficulties… how we create and use tools to get ourselves back on track — and stay there. There are lots of people who have this kind of injury, and some of them/us figure out what tools work best for us, and we make a point of using them. These exterior tools act as supports (or substitutes) for our weakened internal systems. We use planners and notebooks and stickie notes. We use self-assessment forms and how-to books and motivational materials. We use prayer and reflection ane meditation and journaling. We use exercise and brain games. We use crossword puzzles and little daily challenges we come up with by ourselves.

Some of us — and I’m one such person — use our lives as our rehab. Not all of us can afford rehab (in terms of time or money), and not all of us can even get access to it (seeing as our injuries tend to be subtle and the folks who actually know what to do about them are few and far between). But we have one thing we can use to learn and live and learn some more — life. The school of hard knocks.

I use everything I encounter to further my recovery. I have to. I don’t want to be homeless. I don’t want to be stuck in underemployment. I don’t want to fade away to nothing. And that’s what could easily happen, if I let up. My friends who are into “ease and grace” don’t get this. But then, they’re embroiled in their own dramas, so they don’t really see what’s going on with me. Even my therapist encourages me to “take it easy” a lot more than I’m comfortable doing. (They’ve only known me for about seven months, so they don’t have a full appreciation of all the crap I have to deal with, so I’ll cut them a break.)

It stands to reason that others can’t tell what difficulties I have. After all, I’ve made it my personal mission to not let my injuries A) show to others, B) impact my ability to function in the present, and C) hold me back from my dreams. I may be unrealistic, and I may be just dreaming, but I’m going to hold to that, no matter what. I can’t let this stop me. None of it – the series of falls, the car accidents, the sports concussions, the attack… None of it is going to stop me, if I have anything to say about it. I just have to keep at it, till I find a way to work through/past/around my issues.

And to do that, I use tools. I keep notes. I write in my journal. I blog. I have even been able to read with comprehension for extended periods, lately, which was beyond my reach for a number of years. I keep lists of things I need to do. I come up with ways of jogging my memory. I play games that improve my thinking. I focus on doing good work, and doing well at the good work I’m involved in. I bring a tremendous amount of mindfulness to the things I care about, and I’m constantly looking for ways to improve. To someone with less restlessness and less nervous energy, it would be an exhausting prospect to life this way. But I have a seemingly endless stream of energy that emanates from a simmering sense of panic, and a constantly restless mind, so  I have to do something with it.

Some might recommend medication to take the edge off. But that, dear reader, would probably land me in hot water. Without my edge, I fade away to a blob of ineffectual whatever-ness.

I build myself tools. I use spreadsheets to track my progress. I downloaded the (free and incredibly helpful) Getting Things Done Wiki and installed it on my laptop to track my projects and make sure I don’t forget what I’m supposed to be working on. I have even built myself a little daily activity tracking tool that I use to see if any of my issues are getting in my way. It not only lets me track my issues, but it also helps me learn the database technologies I need to know for my professional work.

I am constantly thinking about where I’m at, what I’m doing, why I’m doing it. I am rarely at rest, and when I am, it is for the express purpose of regaining my strength so I can go back at my issues with all my might and deal directly with them. I am at times not the most organized with my self-rehab, but I’m making progress. And I track what I’m doing, to make sure I’m not getting too far afield. And I check in with my neuropsychs on a weekly basis.

I also use external props to keep me in line. I build exercise and nutrition into my daily routine, so I have no choice but do do them — if I break my routine, I’m lost. The anxiety level is just too high. I commit myself to meetings that require me to be in a certain place at a certain time, so I have to keep on schedule. I work a 9-5 job that forces me to be on-time and deliver what I promise. I surround myself with people who have very high standards, and I hold myself to them. As I go about my daily activities, I do it with the orientation of recovery. Rehabilitation. Life is full of rehab opportunities, if you take the time — and make the point — to notice.

In many ways, my external tool-making and structure-seeking is like being a hermit crab finding and using shells cast off by other creatures for their survival. I don’t have the kind of inner resources I’d like to keep myself on track, and I don’t have the innate ability/desire to adhere to the kinds of standards I know are essential for regular adult functioning. I’ve been trying, since I was a little kid, to be the kind of person I want to be, and it’s rarely turned out well when I was running on my own steam.

So, I put myself in external situations and engage in the kinds of activities that require me to stay on track and adhere to the kinds of standards I aspire to. I seek out the company of people who are where I want to be — or are on the same track that I want to be on. And I “make like them” — I do my utmost to match them, their behaviors, their activities. And it works. I do a damned good impression of the person I want to be — even when deep down inside, I’m having a hell of a time adhering to my own standards.

The gap between who I want to be/what I want to do with my life, and how I actually am and what I actually accomplish is, at times, a vast chasm. I have so many weak spots that feel utterly intractable — and I need to do something about them. So, I use the outside world to provide the impetus and stimulation I require to be the person I know I can be, and to accomplish the things I long to do. I use the supports I can get, and I use whatever tools I have on hand. I fashion the world around me in a way that supports my vision of who I can be and what I can accomplish in my life. and I just keep going, layering on more and more experiential “shellack” that supports my hopes and dreams and vision.

Dear reader, if you only knew how different my fondest hopes and most brightly burning dreams have been from my actual reality throughout the course of my 4 decades-plus on this earth, you would weep for days, maybe weeks. But this is not the time to cry. Not when I have within my reach the means by which to put myself on the track I long for. Not when I have the resolve to take my life to the next level. Not when I have — at long last — the information I need to understand my limitations and my cognitive-behavioral makeup. Not when I have the drive and desire to live life to the fullest, to love and grow and learn and … and …

But enough — the day is waiting, and I have things I must get done.

Peace, out

BB

Journaling for TBI Recovery

I’ve been really thinking a lot about the two articles I read lately — the first Offensive Play – Football, dogfighting, and brain damage, by Malcom Gladwell in the New Yorker, and the second The Magnificent Minnesota Nun Brains by Ken Korczak.

They are both really good reads, and I also plan to read Aging with Grace by David Snowdon, which talks in greater detail about the Nun Study and what they learned about how you keep your brain and cognition intact, even in the face of considerable damage.

A bunch of things can be done — living a structured life with like-minded people, keeping a positive attitude, not fretting over material things, tending to your spiritual well-being, and (perhaps most significant to me, these days) keeping a daily journal where you mindfully and deliberately keep track of your daily life and critique yourself to improve where you can.

This matters tremendously to me, because after reading the Malcom Gladwell piece, I got to thinking about my childhood, how rough-and-tumble it was, how many times I got hit on the head in the course of playing, and how many times I was dizzy or woozy or out of it, after falling or colliding with something/someone.

Excerpted from the Gladwell piece:

But what sidelined the U.N.C. player, the first time around, was an accidental and seemingly innocuous elbow, and none of the blows he suffered that day would have been flagged by a referee as illegal. Most important, though, is what Guskiewicz found when he reviewed all the data for the lineman on that first day in training camp. He didn’t just suffer those four big blows. He was hit in the head thirty-one times that day. What seems to have caused his concussion, in other words, was his cumulative exposure. And why was the second concussion—in the game at Utah—so much more serious than the first? It’s not because that hit to the side of the head was especially dramatic; it was that it came after the 76-g blow in warmup, which, in turn, followed the concussion in August, which was itself the consequence of the thirty prior hits that day, and the hits the day before that, and the day before that, and on and on, perhaps back to his high-school playing days.

This is a crucial point. Much of the attention in the football world, in the past few years, has been on concussions—on diagnosing, managing, and preventing them—and on figuring out how many concussions a player can have before he should call it quits. But a football player’s real issue isn’t simply with repetitive concussive trauma. It is, as the concussion specialist Robert Cantu argues, with repetitive subconcussive trauma. It’s not just the handful of big hits that matter. It’s lots of little hits, too.

That’s why, Cantu says, so many of the ex-players who have been given a diagnosis of C.T.E. were linemen: line play lends itself to lots of little hits. The HITS data suggest that, in an average football season, a lineman could get struck in the head a thousand times, which means that a ten-year N.F.L. veteran, when you bring in his college and high-school playing days, could well have been hit in the head eighteen thousand times: that’s thousands of jarring blows that shake the brain from front to back and side to side, stretching and weakening and tearing the connections among nerve cells, and making the brain increasingly vulnerable to long-term damage. People with C.T.E., Cantu says, “aren’t necessarily people with a high, recognized concussion history. But they are individuals who collided heads on every play—repetitively doing this, year after year, under levels that were tolerable for them to continue to play.”

The bold parts are the ones that apply to me especially. Because in the course of my life I have had a ton of little hits. Too many to count, really. All those ballgames, the football, the lacrosse, the baseball, the soccer… all those times when I got clocked or had my bell rung or just plain fell and smacked my head… even the times when I didn’t smack my head, but had my head snap back as a result of a fall or a hit or a collision… It’s crazy, thinking back, and I can see how all those impacts of my childhood could easily have added up to a weakened network of connections, which made me more susceptible to more serious effects, long after I quit playing rough sports.

Perhaps my history of impacts explains why I could be in relatively minor car accidents, but be so tremendously impacted by them — unable to understand what people were saying to me, unable to initiate conversations with the police (that would have cleared my record of inaccurate info that the cops entered on the report, in order to cut the guy in the other car a break) and thus  kept my insurance costs lower — unable to function adequately in my jobs after the accidents, so that I literally had to leave and find other pastures.

Maybe that’s why one of the accidents I was in affected me so profoundly, but it didn’t affect the other person who was in the car with me. If my neural connections had  been compromised over the course of 18 years of rough play and impacts, while the other person in the car led a relatively sheltered life that was not as sports-oriented (while I was out on the field, slamming into people and things in various games, they were sitting on the sidelines, playing the flute in the band), it would make sense that the effect of double impacts — front-end and rear-end collisions — would be greater with me.

Of course, there are a ton of different variables, but if repeated exposure to head impacts plays a role, then it makes sense that I’d be more susceptible than I ever guessed I was.

Anyway, everybody’s brain is different, and I understand that self-diagnosing and trying to explain my own situation from inside my addled head can introduce problems with logic and deduction, so I could be wrong about it. I don’t think I am, but I’ve been wrong plenty of times before. The main thing I’m concerned with, these days, is how to avoid the kinds of problems other people with repeated head trauma have encountered, namely, the dementia and cognitive degeneration that can develop over time. Like everyone (who is lucky enough to be alive), I am getting older, and like many folks, I’m concerned about cognitive decline.

So, my thoughts turn to the Mankato, MN nuns, the School Sisters of Notre Dame. I think about this bit of info, in particular:

Amazingly, some of the nuns maintained clear healthy minds even though their brains showed the scars and deterioration characteristic of severe brain diseases, such as Alzheimer’s and strokes.

In the case of the brain of one Sister Mary, who died well into her 100s, scientists were astounded to find large-scale deterioration of brain tissue, and even lesions associated with strokes and progressive Alzheimer’s Disease — yet she remained clear-headed and lucid to the end of her life.

Sister Mary’s brain apparently defeated the effects of these brain diseases by countering them with an unusually rich growth of interconnection between her brain cells, or neurons. Her extra dendrites and axons were able to bypass damaged areas of her brain to keep her lucid and healthy.

I need to do what Sister Mary did. Okay, I’m not a nun, and believe you me, there is no way I’d qualify to join them, even if I wanted to. Fundamental human differences (like anatomy and philosophy) preclude that. But if Sister Mary could manage to remain clear-headed and lucid despite large-scale deterioration of her brain tissue — including strokes and Alzheimer’s — then heck, why can’t I?

Seriously — the nuns are human, and I’m human. Perhaps Sister Mary didn’t grow up climbing and jumping and falling and fighting and tackling and being tackled, but if she was able to keep her act together despite some seriously damaging conditions, then why can’t I?

I may have led the kind of life that’s laid the groundwork for some serious cognitive degeneration as I continue to age, but by God, if there’s a way I can avoid going down the long dark tunnel to diaper-clad dementia and the total loss of everything I hold dear that makes me actually human, then I’m all in.

So, here’s my plan:

  • Stay positive (no matter what) – no matter how dismal things may seem, life has a funny way of turning around, sometime or another.
  • Introduce structure and order to my life – make sure I plan my days, and then stick with the plan (like they tell me in the Give Back Orlando material)
  • Cultivate more discipline to maintain that structure – because the stuff won’t get done by just listing it on a page
  • Do what I can to surround myself with like-minded people – friends are important, and I haven’t done enough over the years to cultivate those connections. I know this should change, and so I’ll do that.
  • Journal, journal, and journal some more – It worked for Jefferson, Edision, Faraday, Isaac Newton, and Einstein, and it can work for me.

The great thing about journaling, from where I’m sitting, is that it enables me to do all of the above items. It lets me work on my attitude, tweak my outlook, and get in touch with what is holding me back. It helps me introduce structure to my life, not only by committing to do it daily, but also by journaling in a way that is as much planning as it is reflection. I can use my journal to track my progress and develop my discipline — in ways that are appropriate to me. And it can help me work through the things that keep me from others. In my journal, I have a safe place where I can uncork at will, and no one is harmed. Too often, I have just said what I felt to people who either could not hear it, or who didn’t deserve to bear the brunt of my intensity. Using a journal lets me say what I need to say and vent, without the danger of harming others. That’s important. Especially for me. My past is littered not only with subconcussive head traumas, but also with tons of relationships that could not withstand the pressure of my outbursts and lack of control.

So, onward and upward. I have access to information about people who managed to overcome some pretty serious threats to their sanity and cognitive health. I have access to accounts of their lives and scientific investigations into what worked for them. I can avail myself of their teachings and lessons and use them to my benefit — so that I can live out my days in good health and soundness of mind. I have a plan, and I’m determined to stick with it.

All good.

What an amazing article on brain injury

Thank you Malcom Gladwell for this amazing piece – “Offensive Play

I really don’t have the words to say how much I appreciate this. As someone with friends who have both been boxers and who have played football, and who has sustained numerous concussions, myself, writing like this that reaches a mainstream audience is truly priceless.

Thank you Mr. Gladwell. From all of us.

If I had gotten help for my TBIs sooner…

I have been wondering a lot about how my life might have been different, had I gotten help for my TBIs when they happened.

If I had gotten help when I was 7 and fell down the stairs, and again when I was knocked out by a rock when I was 8… If I had been given strict orders to rest, and then watched carefully and given extra help in school and life to teach me better how to deal with classroom and social situations… not to mention being treated as an injured person, rather than a bad seed… I wonder if my grades would have been better and if my talents would have been better used.

If I had gotten help after my sports concussions in high school… again, being forced to rest, sit out of sports, take it easy, address my balance issues and get help dealing with social and attentional issues… I wonder if I would have slipped so quickly into drugs and alcohol (that numbed the pain), or if I would have been such a contrary rebel who didn’t have a good grasp on the consequences of my choices.

I wonder if my grades might have been better, if my academic career might have been better, if my ability to pursue opportunities might have been better, earlier on in life… which could have made a difference in my career path, my ability to earn, my ability to pay taxes, my ability to hold down jobs for longer than a year or so.  I wonder if I would have become so fond of risky ventures and certain kinds of danger. I wonder if I would have chosen the friends and associates I chose over the year — many of whom were bad choices, and I never realized it. Till too late. I wonder if I might have sustained some of my friendships with people over the years who meant so much to me, but whom I hurt terribly because my brain was broken and I had no clue.

I wonder if I might have been able to really contribute something of value to the world — a great book or a great discovery or a great body of research… Or just steadier, more reliable participation in my society and culture. I wonder if I might have achieved a level of participation that, given my personal commitment to make the world a better place whenever and however I can — might have helped people more than I have, thus far.

I usually get upset at tax time, when I look at how much (or little) I’ve earned and paid out, and I think about how much better I might have done for myself, had I not been so injured so often over the course of my life… so impaired… so under-achieving… so clueless about what was wrong with me. Now, I don’t want to feel sorry for myself and I don’t want to punish myself for things I had no control over. My injuries started when I was a kid, and they pretty much changed the course of my life without my understanding how or why. I know with all my heart that I have been tremendously blessed in so many, many ways. But I always feel a sense of inadequacy around this time of year. I just don’t feel like I’ve done enough with myself. I haven’t made the most of my potentials. What a waste.

On the bright side, a Washington State concussion bill would help protect young athletes, which is truly awesome! My injuries are part of my past, part of my present, and very much a part of my future. I never got adequate help after my concussions, when I was a young athlete. My chance at full recovery immediately after hard tackles, falls, and various accidents may have passed me by, but for lots of young kids, that doesn’t necessarily need to be the case.

And that gives me hope for our future.

Thoughts on getting help for TBI

When I checked my email last night, I was pretty shocked to see that a public figure I really admired had died unexpectedly from a head injury. Out of respect for the deceased, I’m not going to use their name. Yes, it would probably drive a lot of traffic to my blog, but I don’t feel like taking advantage of their situation for the sake of my stats. You probably know who they are, anyway.

Having been in numerous situations, myself, where I had hurt my head but I had no idea how badly, I have to say that it really is very difficult to tell how bad an injury is — especially when the injury affects the reasoning part of the injured party.

Everyone around you might be saying, “Are you okay? Are you alright?” and they’re genuinely concerned, but you just want to get away from all the commotion, lie down, and settle down. You don’t want to be bothered by all the hullabaloo, which — to your injured brain — can be very confusing, very aggravating, very anxiety-producing. It can just be too much to process. And if emergency medical teams are involved, the drama can be so disorienting, so confusing, so annoying, that it’s a relief to just get them to go away.

With me, when I fell in 2004, about the last thing I wanted, was for people to fuss over me. And I declined both help and attention for a number of reasons:

  1. I didn’t want to be bothered by all the drama of an emergency room, when I was just a little wobbly. I figured I just needed to collect myself and shake it off, and I’d be fine.
  2. I didn’t want to make a big deal out of things, when all I had done was fall down the stairs and bump my head. I had fallen plenty of times throughout my life, and I had never rushed off to the hospital before (tho’ it turns out I probably should have).
  3. I wasn’t sure that I could get the proper help in the town where I was visiting. This was because I wasn’t sure about the quality of medical care available in that relatively rural location and because I wasn’t sure, myself, how to describe my symptoms.
  4. I didn’t want to interrupt my schedule — I was packing to go home after a very demanding holiday celebration — over something as dumb as a fall. I really just wanted to go home.
  5. Nobody knew how badly I’d hurt myself. I was too out of it to tell just how I was, and the folks who were with me didn’t know enough about concussion or head injury to judge my condition.

Things might have been different for me, if we had all had more information about head injury, if we had known the signs, if we had had access to high quality medical care, and if there hadn’t been all sorts of other competing activities going on. As it was, in the case of my fall in 2004, everything added up to me not getting help for my problems, and proceeding to lose an awful lot of important elements of my life.

I’ve had other similar experiences, as well — particularly with car accidents. The three different car accidents I was in, that had noticeable after-effects, were never enough to slow me down or stop me for long.

The first one I had in 1987 had the immediate result of confusion, inability to understand what people were saying to me, and loss of ability to work for a number of weeks. I just couldn’t keep it together. Eventually, I was able to get back into the swing of things with work, and I was able to get back to normal functioning. But that was only after a couple of months of screw-ups on job interviews, missing cues, drinking a lot, and generally being a wreck at home.

The second accident I had in 1989 left me spacy and confused and having a hard time finding my way to the train station I was going to, after the accident. I also had a very sore neck — more sore than usual — and I didn’t feel quite right. But I still pushed through and went about my business.

The third one in 1996 also came at holiday time, in heavy Thanksgiving traffic, and immediately after it, I had a really hard time focusing, and I couldn’t for the life of me read the forms I had to fill out to send to the car rental agency. I just checked some boxes and signed the form and sent it in, hoping that I’d gotten it right, but not knowing for sure. I also started to lag at work, and I dropped a lot of projects I had started, without really understanding why… or properly assessing how important the fact was, that I was dropping them.

Every time I’ve fallen or been hit or had an accident, I’ve never actually received proper care afterwards. When I was a kid, people didn’t know about concussions. They didn’t know what to look for, and they didn’t properly estimate my need for help. Also, when I was a kid, I didn’t want to draw attention to myself and look like a “sissy” just ’cause I had gotten hit on the head. And as an adult — perhaps because of the series of re-injuries — I’ve never aggressively followed up on my symptoms and gotten medical help after my accidents.

Thinking about it within the context of our North American culture, I have to say that our world is not particularly well-suited to treating head-injured people. Our movies are chock-full of images of head trauma that has no consequence whatsoever — people are always getting punched, slammed, hit over the head, tackled, and generally taking a lot of punishment above the shoulders — all without apparent side-effects. Our sports are violent and often include plenty of blows to the head as a matter of course. Football and soccer and ice hockey are tailor made for getting hit on the head, whether through tackles, moving the ball up the field with a header, or assaulting an opponent to gain possession of a puck. Falls and bumps have entertainment value, whether it’s in a commercial for a carbonated beverage or it’s slapstick comedy or it’s in kids’ cartoons. When I think about how many images of violent assault and “fun” head trauma I saw just on Saturday morning cartoons — Elmer Fudd really took a beating over the years, and I’m surprised he survived — it’s no wonder that when I fell, myself, all those times… or got hit on the head… or experienced some tackle or hit or accident that “rang my bell”, I instinctively shook it off and declined help.

Now, I wish I could say, after all these experiences  (and knowing what I know now about traumatic brain injury) that if it ever happens to me again, I’m going to do the right thing and seek medical help. But I’m not sure I will. I’m not sure I’ll be able to. When you’ve been hit on the head, your thinking can get so foggy, your judgment can be so muddy, and you can be so irritable and, well, non-compliant… that your better angels don’t have a chance to step in. Those angels may be your instincts or people around you who care about your welfare, but in either case, when you’re head-traumatized, you can be ornery and contrary and refuse any kind of help and get very agitated if those “angels” press you to assist.

It’s a conundrum. One with consequences, as too many people find out regularly. Whether they’re the head-injured person or their family or friends or co-workers, they are impacted to some extent.

Perhaps the only hope we have is education. Information… Well-informed judgment. And the willingness to endure the wrath of head-traumatized individuals (who have no idea how much help they really need) and not quit insisting they get help… until they do.

Of course, even if they do get help, the quality of it is dependent on the medical team assisting. And if you’re stuck with a doctor who’s clueless about head trauma and thinks, “Oh, everything will be just fine, so long as you didn’t get knocked out for more than 2 minutes,” and gives you some aspirin and sends you home to rest, all the perseverance in the world only goes so far.

Dealing effectively with head trauma needs to be a team effort. A prioritized team effort undertaken by people who know what the hell is really going on. It’s a goal worth working towards.

A Tale of Two Concussions – What went wrong, what went right

It’s Brain Injury Awareness Month, and this year there is special focus on sports injuries, especially concussions, among young/student athletes.

This is such an important topic… and it’s had such a vital part to play in my own life. I think it’s safe to say I would not be the person I am today who experienced the difficulties I’ve had, if I hadn’t had two concussions in high school. It’s my hope that teachers and coaches and other folks who are concerned about the health and safety of kids in school-sponsored sports will read this and become a little more sensitive to the issues and hazards that can accompany sports-related head injury.

My first school-sports-related concussion came in my freshman or sophomore year. I was playing flag football at the high school, under the supervision of a regular football coach who agreed to take on intramural players on Saturdays. We were having a great time — I remember the day was bright and crisp, one of those amazing Saturday afternoons in the fall, when summer is well over and everyone is all too keenly aware that winter is just around the corner.

We had a great time playing football… such a great time, in fact, that we all started really feeling our oats, and someone said they didn’t want to use the flags anymore. They wanted to play tackle football. Like everyone else, I agreed – I was totally into it. I was feeling strong and vital and full of bravado, and I wanted to take my play beyond just dodging and diving for flags.

I wanted to tackle. I wanted to hit — and be hit. And I wanted to play free of pads and guards. I wanted to get back to basics and play football the way God intended — down and dirty and full-contact. Amen.

Well, we had a grand time. I dodged some close calls and fell flat on my face a bunch of times, trying to take other kids down. Then, in a carrying play, when I had the ball tucked under my arm and was making a break into the open midfield, I got sideswiped by another player who was bigger and stronger and a lot more solid than me.

I felt the hit land hard against my side and shoulder, and I tried to spin away from it and keep running downfield, but my feet suddenly buckled underneath me, and I went down. I don’t recall whether or not I hung onto the ball. I suspect it popped out of my arms and bounced away, but it doesn’t really matter. When I stumbled and crumpled to the ground, it was like everything ground to a slow-motion halt, and I found myself looking at grass.

The coach who was keeping an eye on us came over to me and checked me out. They asked me if I was okay and if I could walk. I said, yes, but I had a hard time picking myself up off the ground. They asked again if I was okay, and I insisted I was. I was feeling really woozy and out of it. Rattled and echo-y. Like my bell got rung and there was a long, lingering ring to it. I was embarrassed that I’d gone down so easily, and I wanted to get back to the game and redeem myself. And for a while I did. But I played badly. I was off-balance and slow and foggy — a noticeably different player than I’d been prior to the tackle.

The coach kept asking me if I was okay, and I kept saying yes, but the longer we played, the more out of it I got, and they finally called the game before we could finish it. I was so disappointed! Disappointed in myself for having been such a wuss who couldn’t take a hit. Disappointed with the coach for thinking so little of me. Disappointed in the game that I hadn’t had the chance to really shine the way I wanted to.

I’m glad the coach called the game. In retrospect, they probably should have forced me to sit out sooner. But I was so adamant about keeping on playing, there was no telling me “no” unless the game was over.

And it was.

The other concussion I had was in an intramural soccer match. It was senior year, and there weren’t going to be that many more opportunities for me to just play. College was just around the corner, and I was keenly aware that my “childhood”, such that it was, was about to disappear on me. My days of careless abandon couldn’t last, and all through my last year of high school, I devoted every spare moment to savoring the taste of youthful abandon.

That included sports. I had a strong feeling that once I was out on my own, I wouldn’t have any more time to play sports, so I wanted to really go for all the gusto I could get, however I could get it.

Well, I went for it in that soccer match. And I think I played pretty well. But at one point in the match, I was either tackled, or I tripped, and the next thing I remember, I was on my back, looking up at the sky. I was kind of out of it… not quite right… and I lay there for a little while. At first, I wasn’t sure I could move, but then I did a sort of body scan, and I could feel my whole body, so that was good. I didn’t quite feel like I could get up, though, so I lay there for a little while longer, eyes closed, collecting myself. I didn’t want to be injured. I didn’t want to be hurt. I wanted to finish the game and have a good time.

I’m not sure how long I lay there, but before too long, some of the teachers came running over to me to see if I was okay. By that time, I had collected myself and was sure I could stand and walk and play, so I bounded up and reassured everyone that I was fine. They wanted me to sit out for a little while, but I refused. I wanted to play on. If I recall correctly, one of the teachers whom I really respected managed to convince me to sit out the game and let others play in my stead.

Even though I was antsy to get back in the game, I realized that I was kind of wobbly on my feet, and I needed to take a break, so I agreed to sit out for a while. It had sunk in that my bell had gotten rung, and I wasn’t much use to my team, anyway. Plus, the weird feeling in my head made me a little nervous, so I was a little relieved to have been taken out. After a while, I was allowed back in the game, but like with the football injury, I was slower, less coordinated and not as adept at handling the ball. I really struggled, which was embarrassing.

Those two head injuries — both of them knocking me silly and altering my consciousness in the process — came at different times and under slightly different conditions. In retrospect, I wish that the coaches and teachers in charge had been more adamant about me not getting back in the game right away — or at all. But in the first case with the football game, I was so eager — hungry — to play, that wild horses couldn’t have kept me from it. I think I may have had some recollection about that football experience, when I was dealing with the soccer experience. I was much more compliant — though grudgingly — with the folks in charge. I think also the nature of the games made a difference — in the football game, it was all about drive, all about pushing onward, where in the soccer match, it was much more of a thinking-game than brute force. I suspect that made a difference in my own thinking process.

One thing that made it easier for me to sit out part of the game, after my soccer injury, was the fact that I had other team members who wanted to play. If I played the whole game, my classmates wouldn’t have gotten the chance. In the football game, there weren’t that many of us playing, and if I was out, the game came to an end — which is what happened — and I didn’t want the game called on my account. I do recall making peace with the idea of sitting out of the soccer match by agreeing to cheer my teammates from the sidelines. My teachers specifically asked me to do that, I recall, so that gave me something to do while I was recuperating from my fall.

I suspect that folks who continue to play after concussions are often such loyal and dedicated team players, that they don’t want to let their team down. Or they feel some pressure of some kind — whether from their coach or their teammates or themselves — to stay in the game. Don’t let the team down. Be a part of the group effort. Those kids often have such a spark, such a dedication, such a devotion to their team that’s really refreshing, in our me-first, winner-takes-all, I’ll-get-mine society. But that dedication can work against us in the long run, if we’re not protected by folks who know better than us — in the school sports case, coaches and trainers and teachers who supervise student athletes.

I was fortunate to have been supervised by teachers and coaches who cared very much about my well-being and safety, and who managed to prevail on me to get the hell out of a dangerous situation. I was also fortunate to have the kinds of coaches and teachers I truly respected, so when it came time for them to outrank me, I could listen to them, hear them, and follow their instructions, even though I didn’t want to.

When it comes to protecting kids from the after-effects of sports-related head injury/concussion, there’s nothing like mutual caring and respect, when it comes to making and enforcing the right decisions. And there’s nothing like keen awareness of the dangers of unmanaged concussion, to hasten the decision-making and enforcing process.

So teachers and coaches, please learn all you can about head injury and concussion. And for the sake of your students and student athletes, don’t let them play injured. I don’t care what they say or how hard they beg or how far behind you are in the game. One short-term win for the team means nothing, if it costs a player the long-term loss of their cognitive, behavioral, and physical well-being… not to mention their future.