Walking on a different wild side

I’ve been daydreaming about chucking it all and hitting the road. I’ve managed to save up a nice little chunk of change, banking it for house repairs and emergency situations. I actually have enough for an honest-to-God emergency fund now, which hasn’t been the case for close to 10 years. It really takes the pressure off. At the same time, though, it also tempts me to do something rash — like taking my little commuter car (which just got a tune-up), filling up the gas tank, and driving, driving, driving…

But I know it would never work. Never, ever. And without a doubt, I’d end up worse off then, than I am now. No doubt.

Here’s the thing — I need a break from all the heavy-duty daily frustrations. It’s just getting to be too much, and I’m not making good choices about how to get that break. Some people smoke. Some people go on social media. I dance with danger and run the risk of getting injured all over again. It’s clear that I need to change things up and get my blood pumping on a regular basis. I need a positive and productive way to get that adrenaline pump that keeps me sane and channel the energy I have into something that helps me, not hurts me.

That all being said, I think the key for me is to step things up with my hopes and dreams. I have an “old” dream of having my own business doing consulting and training about an area of expertise I have. I know there’s a market for it, and I know others do well in that line of work, I’ve just never made good on it. I have wanted this so badly, on and off over the past years,and I’ve made some starts, here and there. But I’ve repeatedly given up on that dream over and over. I got overwhelmed or confused or just felt like I couldn’t do it. I knew in my mind that I could, but I lost courage and backed off and went back to doing what I had been doing before — holding down the fort with my 9-to-5 job and steady paycheck.

Now things are different, though. I don’t have a horrific commute anymore — if anything, it’s going to get shorter. And I’m becoming increasingly motivated to move forward, as I talk to people about my idea, and they get really excited about it. I have managed to find a job where every day I am in the midst of some very forward-thinking people who are also super supportive, and it’s really doing me a lot of good.

These two magic combinations — time to work on my ideas, and supportive people with vision — are helping me get past myself and re-start anew. I’ve started this idea so many times, I actually have a lot of knowledge about how to get off the ground. And I have enough professional connections, I can start putting myself out there — while still holding down the fort at work.

So, there is hope. And my goal is to earn enough on the side, to be able to afford some travel. That way I don’t have to drive off by myself — I can bring my spouse with me, and we can have a fabulous time. It’s a plan. It’s a bonafide plan.

And rather than wasting my time and energy and risking my neck on danger-seeking types of behavior, I’ll court danger in the form of chasing my dreams and having them come true. Putting my life in danger in questionable situations, and putting it all on the line for my dreams, are the same type of activity. The difference is, one of them will actually have something to show for my risk-taking. The first one… all I get is a system full of adrenaline, a brief burst of clarity, and the potential for things to go really, really wrong in an instant.

So, in a very real sense, my motto continues to be Onward!

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After TBI you’re still human

And you still have the same types of interests and desires and needs that you had before your injury/-ies.

You want to be fully engaged. You want to be involved in your life. You want to have hopes and dreams and to follow those hopes and dreams.

Why should any of that change after TBI? Some days, it’s like the world just expects you to stop being interested in the things that mean the most to you — to anyone. Like it should be so easy to let go of the old ways that were so familiar and made you “you“. And you’re just expected to do it. To adjust. To deal with it and move on.

This is something I really struggle with on a regular basis. It’s bad enough that I have to deal with the confusion and disorientation and not feeling quite “here”, half the time. It’s bad enough that I have to think through every friggin’ thing that used to come so easily to me, lest I get hurt or screw something up. It’s bad enough that everything feels like such a CHORE, and even the fun things are hard for me to do, sometimes.

But through all this, I’m expected to do it without any recognition or support. That just sux.

Even my neuropsych isn’t much help to me in this respect, because comparatively speaking, I’m not nearly as “bad” as their other patients. I’m high-functioning. My IQ is still up there. I have a good job and a house and all the trappings of modern success. I’m in a stable marriage of 23 years. I have a bank account and a plan for how to live my life.

What could possibly be wrong?

Yeah, well, I’ll spare you the details. The bottom line is, half the time I feel like crap. I don’t feel like myself. I can’t recognize the person who’s walking around in my shoes, wearing my clothes, doing my job, driving my commuter car to and from work each day, running errands on the weekend. Who IS this person, and how did they get in my life?

Addressing this is so difficult for me. I rarely bring it up with my neuropsych, because they don’t really seem to think it’s that big of a deal, and they don’t seem to think it should impact me. After all, compared to their other patients, I’m doing grand.

Oh, except for flirting with danger on a regular basis, and being totally oblivious to what all could go wrong in an instant.

To be truthful, I have not discussed everything with my neuropsych that I could. Over the years, there have been a lot of things I haven’t brought up, because they are way too upsetting for me, and it’s more important to me that I have a regular conversation with a regular person and be able to relax, instead of plunging into that infinite, bottomless black abyss that takes me over when the emotions run too high. I have to stay functional. I have to hold my sh*t together. I can’t be sitting around spilling my guts, and then getting so freaked out and upset that I can’t even see or walk straight. My neuropsych has seen me overwrought a handful of times, and they don’t seem to understand what all is going on with me. They got exasperated, as though I were not trying.

So, I just don’t go there with them. I keep things positive and talk about the progress I’m making. I don’t have many words to explain the way it feels inside. Plus, when I get to their office, I’m ALL THERE, and nothing else outside the office exists. There are so many pieces of my life that feel like a shambles to me, even though on the surface they look good and they are holding, I don’t have much hope that a strong wind wouldn’t blow them all down. In all honesty, I’m not even sure how they’re holding together. They just are. I’m just lucky, in so many ways.

That, and people are so consumed with their own lives, they don’t notice the chinks in my armor.

It all just feels so precarious.

And it’s a strain. Because I want to have a life I can be proud of. I want a life I actually feel like I choose, and I’m involved in, not just one that other people tell me I should have, so I go ahead and go for it.

So much of my life has been about just getting by… because I was the only one who could see what kind of crap I had to deal with inside. And nobody seemed to take seriously the challenges I had to overcome on a regular basis.

Oh well. I’m still here, and I still have my hopes and dreams to follow. I’m still a human being with my fair share of challenges, and I can’t lose sight of that. It’s all a massive discovery process, and in the meantime I might just learn a useful thing or two.

So long as I don’t get myself killed, chasing danger and risk, to remind myself that I’m alive.

How I can get hurt – again and again

Yeah, I’m a bad-ass alright. Hopefully not a short-lived bad-ass.

I had an interesting conversation with my neuropsych yesterday. I have been wondering about some judgments I’ve made, in the past six months or so, which — at the time — seemed fine… but in retrospect were probably not that smart. At least, that’s what my neuropsych has told me.

About six months ago, I was offered a ride on the back of a motorcycle, and I took it. I had to get somewhere fast, and this rider offered me a lift through a shortcut they knew. This rider (I won’t call them a biker, because I think of Harley’s, and this individual was on a BMW) was a stranger to me, and I had no way of knowing how good a rider they were. I’ve ridden with really bad motorcycle drivers before, and I didn’t care to repeat the experience.

But this individual appeared to be competent, and I hopped on the bike behind them.

For the record, I don’t drive motorcycles — or usually ride them — because of balance issues and attention problems. I can get distracted and lose my presence of mind, which pretty much disqualifies me for driving a motorcycle. It’s a great way to get seriously injured… or killed.

Anyway, the shortcut worked, and I got where I was going in record time. But not before we’d pulled some really dangerous stunts — fitting the motorcycle through very tight spots that were borderline illegal, and weaving in and out of traffic at high speeds. The driver also ended up taking a wrong turn, and we ended up driving around a blind curve directly into oncoming traffic — and the bike stalled on a low barrier and couldn’t move forward or back.

So, I hopped off the back, and while the driver got the bike started, I heaved at the back of the bike and got it off the barrier.

Very exciting. And also very dangerous. And potentially fatal.

Once I got where I was going, I realized how close I’d come to something pretty terrible. And worse yet, I was far from home in a place I wasn’t familiar with, and I’m not sure how I would have gotten help if I needed it.

It all turned out okay, and it was a thrilling ride of my life. But it’s not the sort of thing I should have done at that time.

A few months later, I was traveling (again). Near the end of a really long and tiring drive, I ended up at a rest stop where I realized I was being watched by an individual who looked like trouble. I gave them a wide berth, but later they were joined by another individual who looked equally rough, and they tried to engage me in conversation. Rather than keeping my distance, I walked right up to them, shook their hands, and had an extended conversation with them. In the course of the conversation, one of them identified themself as a known criminal. I didn’t bat an eye, just finished the conversation, and they took off… as though they were up to no good and didn’t want to get caught.

In retrospect, I was setting myself up to get mugged. Big-time. I didn’t… and I actually had a really cool conversation with those two. But was it a good idea for me to interact with these two at a rest stop along an interstate? Doubtful.

Then, the other night, I was driving home from work, and I got caught in a torrential downpour, accompanied by close lightning strikes. I could not see the road. At all. I should have pulled over, but I kept going. I could have easily run into a tree — or run into someone else. I didn’t, but even as I was driving, thinking that I might want to pull over, the urge to keep going was even stronger… overpowering. I got home safe and sound, and after sitting in the car for 5 minutes, the downpour suddenly stopped. Everything was fine. But it might not have been.

On all three of these occasions, I was tired, and I was looking for a “hit” of adrenaline to perk me up. I needed a pump — a jolt — to get me going. It didn’t matter that I was putting myself in danger. The whole point was putting myself in danger. I needed to get my stress hormones going and get myself back online. I felt dull and foggy, and I needed a boost.

So, I put myself directly in harm’s way. It worked — I did get the pump and the jolt I needed. But had things gone differently, I might not have fared so well. For that matter, I might not even be here.

Riding motorcycles is something I should NEVER, EVER do. I know that. I have avoided them like the plague — like I avoid tall ladders. Talking to folks who obviously look like they’re up to no good, and going so far as to shake their hands and “hang out”, is not something I typically do, either. I know better. What’s more, driving my car through conditions when I can’t see more than a foot past the hood ornament… I know WAY better than that.

But reason failed me. In a very big way.

And that’s how I can get hurt – again and again. By actively seeking out danger that makes me feel alive… that makes me feel like myself again… that puts all the pain and confusion and frustration away, for even just a few minutes.

My life tends to feel like a jumbled-up mess of contradictions and conflicts, and it’s hard for me to get any peace. I live in a body whose biochemistry tells me things are WAY more extreme than they really are, and as a result, I usually end up on a roller-coaster of emotion. I know better… but my body doesn’t get it. And it wears me out. Mentally and cognitively, my brain loves to do its own thing and not stick with the program. I’ve been forgetting a lot of things, and I’ve been coming up short, now and then, with projects I’ve been working on… playing catch-up and all that. I keep cool and maintain calm on the outside, but inside it’s sometimes pretty chaotic and frustrating and a little bit terrifying now and then.

So on the inside, I’ve got all these experiences of chaos and confusion and frustration, while on the outside, everything is supposedly okay. I know I’m not the only one who has this — most people do, probably. That whole “living lives of quiet desperation” thing that a philosopher once talked about.

That tires me out. And the quickest and most reliable way I know to stay “with it” is to add a little danger to my life. Or a lot of danger.

Looking back, I can see how almost all of my injuries — even from fairly young — came from this danger-seeking streak of mine. I put myself in dangerous situations. I also pushed myself to unsafe levels of play in football and soccer games. I drove while I was tired, and I pushed myself to do things when I should have stopped and rested. I needed the pump, I needed the adrenaline. I needed the shot of instant clarity, in the midst of all the confusion and static in my head, that I just couldn’t sort through.

I didn’t have a death wish. I had a life wish. And the one way I could really truly live my life, was to push myself past a certain point, and get lifted up by the pump.

I know I need to change this sort of behavior. It’s caused problems for me before, in subtle ways, and it’s doing it again. I don’t want to stop being the person I am. I don’t want to cower in a corner, hiding from life. But I would like to live to see another day. I’ll have to figure out something better, for how to get what I need to be as alive as I can be.

If I don’t manage to figure that out, all bets are off.

What our denial is costing us

It’s not like we can’t see the signs

I’ve been thinking a lot about The Crash Reel, lately, especially thinking about the parents of Kevin Pearce and how they handled his accident and brain injury and recovery. One of the things that stands out in sharp relief for me is how silent his mother is, as she watches her son suffer and struggle. When he’s sitting with the doctor, telling him about how he thinks he should just go out and start snowboarding again… when he announces at a family dinner that he’s looking forward to getting back on the snow… his mother is silent. Sitting quietly in pain, having aged a great deal over the past year, and not speaking up on camera to set him straight.

I know it’s heresy to be critical of parents — especially those who have children who are struggling with a disability or recovery of some kind. It is a parent’s worst nightmare to see their beloved child injured so horribly, even killed. At the same time, parents are one of the most available lines of defense against action sports TBI, and when they don’t step in to stop dangerous behavior, I really feel for the kids who end up suffering as a result.

The kids literally do not know better. Their brains have not properly developed enough to be able to make good decisions. And parents who just leave all the decisions up to them may actually be inviting danger and disaster into their families.

On the other hand, no parent can own or control their child forever, and accidents do happen, no matter what sport you play. Even if you’re not playing a sport, accidents happen. TBI happens. No amount of good parenting will erase that chance 100%.

There are many other pieces to the TBI puzzle, especially when action sports are considered. There’s the X-Games atmosphere of daredevil stunts, the constant push to exceed your (and others’) limits, the steady pump of adrenaline that makes us feel alive — and makes some of us feel like we’re human again.

That adrenaline pump, the flow of dopamine when you accomplish something fantastic, the numbing of pain that all the fight-flight stress hormones make possible… it’s not just an addiction, which people simply dismiss. For some of us, it’s a non-negotiable part of who we are, and without it we are just shells of who we know ourselves to be.

I spent the last week deliberately resting, and man, at some times it was hell. Boring. Dull. Dampened. Blah. Booooorrrrinnnngggg.  I knew I needed to rest. I knew I needed to catch up on my sleep, and it was all good, when I finally got to a place where I actually felt rested. But that persistent sense of being so dull and dim and low-level was extremely difficult to take. And I’m not even an extreme sports athlete.

Imagine how it must feel for someone to go from the thrill and elation of successfully completing a difficult ride down the slopes… to being laid up, forced to rest and recuperate and “take it easy”. Yeah, sheer hell.

It’s the denial of this part of our lives that is the most dangerous, I think. Because we deny that we need that rush, the challenges that test our limits in real life, we don’t get the stimulation we genuinely need, and we live lives that are far less … alive … than they should be. We try to reduce danger at every turn, avoiding uncomfortable situations and everyday challenges, in hopes of having some sense of security. But in the process, we starve our systems of the important challenges and tests that make us more of who we are. We stunt our growth, and we know it harms us. But we are still so convinced that somehow, some way, we can be safe and secure.

In a way, our hunger for safety and security is the worst thing we could possibly indulge. It makes us less than who we could be, and it denies us the necessary genuine risk that fine-tunes our systems and makes us better at being who we are.

But we can’t be deprived forever. As I said, part of us knows the constant risk avoidance is not doing us any favors. So, we seek out artificial challenges that we think we can control ourselves — like extreme sports, velocity sports, collision sports. The worst is when we ask others to vicariously seek out those challenges for us — NFL football players, extreme athletes, and all sorts of danger-seekers we reward with adulation and praise for doing things we could never do ourselves — and which might actually permanently maim or kill them, right before our voyeuristic eyes.

We need action. We need excitement. We need risk. There’s no point in denying it. Our brains and bodies are finely tuned to handle risk and excitement, and if we can’t get it in a healthy way, we will get it in an unhealthy way.

So why not exercise and develop that part of ourselves — safely?

When I say “safely”, I mean without putting our lives and limbs in direct danger — within the context of our everyday lives, taking on challenges that others so frequently flee. Countless “dangerous” situations present themselves to us each day, which we could pursue, and make our lives better in the process. Things like

  • Speaking up and telling the truth about what’s going on around us.
  • Refusing to play along when a bully shows up and demands that you join in their “game” of ridiculing or bullying others.
  • Taking a long, hard look at yourself and admitting what’s really there — and taking steps to address the things you’re not so happy about.
  • Following your dreams, once and for all, and damn the torpedoes or what anyone else has to say about it.

Those are just a few examples of the real risks in life, and those are the ones that get lost in the shuffle. I’ve been seeing a lot of trailers for the “Secret Life of Walter Mitty” movie, lately, and just from what I’ve seen, it seems like old Walter is doing just what I’ve described — replacing the challenges and dangers and risks of everyday life with extreme situations that give him that necessary pump of adrenaline and dopamine that makes him fully human. Fortunately or unfortunately, I suspect the movie concludes with him coming out safe and sound, with no TBIs or other disasters ripping his life apart. Yet more denial? {sigh}

The Walter Mitty story seems not so far removed from the story of sheltered kids taking up extreme sports to supply their brains and bodies with the biochemical pump they need to develop properly. Of course — full disclosure — I haven’t seen the movie yet, so it may turn out to be a good one. I do know the original story behind the movie, so I can speak to it a bit. I’ll have to check out the movie for sure — but on DVD later. I’m not going into a movie theater filled with people who are talking and texting and coughing all over me.

Anyway, that’s my little discourse on denial and its role in producing one TBI after another. We are all culpable, when it comes to cases like Kevin Pearce

  • those who let him take up extreme sports,
  • those who encouraged him,
  • those who rewarded him,
  • those who profited from him,
  • those who continue to urge him back on the slopes to do yet more dangerous stunts,
  • and those who sit by quietly not speaking up when the danger is so apparent, so obvious.

The crazy thing is, this keeps happening every single day, and yet we sit by silently and say and do nothing about it.

Makes no sense. I think we all need to get our heads examined.

For skiing and snowboarding, helmets are not saving lives

There is a great article over at the New York Times (http://www.nytimes.com/2014/01/01/sports/on-slopes-rise-in-helmet-use-but-no-decline-in-brain-injuries.html) about how helmet use is not lowering brain injuries or fatalities:

Ski Helmet Use Isn’t Reducing Brain Injuries

Michael Schumacher in 2005. Schumacher was wearing a helmet when he was injured recently.

By KELLEY McMILLAN

Published: December 31, 2013

BEAVER CREEK, Colo. — The fact that Michael Schumacher was wearing a helmet when he sustained a life-threatening head injury while skiing in France on Sunday probably did not come as a surprise to experts who have charted the increasing presence of helmets on slopes and halfpipes in recent years. The fact that the helmet did not prevent Schumacher’s injury probably did not surprise them, either.

Schumacher, the most successful Formula One driver in history, sustained a traumatic brain injury when he fell and hit his head on a rock while navigating an off-piste, or ungroomed, area at a resort in Méribel, France. Although he was wearing a helmet, he sustained injuries that have left him fighting for his life in a hospital in Grenoble, France.

Schumacher’s injury also focused attention on an unsettling trend. Although skiers and snowboarders in the United States are wearing helmets more than ever — 70 percent of all participants, nearly triple the number from 2003 — there has been no reduction in the number of snow-sports-related fatalities or brain injuries in the country, according to the National Ski Areas Association.

Experts ascribe that seemingly implausible correlation to the inability of helmets to prevent serious head injuries like Schumacher’s and to the fact that more skiers and snowboarders are engaging in risky behaviors: skiing faster, jumping higher and going out of bounds.

“The equipment we have now allows us to do things we really couldn’t do before, and people’s pushing limits has sort of surpassed people’s ability to control themselves,” said Chris Davenport, a professional big-mountain skier.

Read the rest of the article here

And again, we come across examples of how risk-taking behavior takes over and trumps reason. With better equipment, people take more risks — like football players who treat their protective gear like armor to protect them as they turn their bodies — including their heads — into weapons.

Additionally, the article says:

In fact, some studies indicate that the number of snow-sports-related head injuries has increased. A 2012 study at the Western Michigan University School of Medicine on head injuries among skiers and snowboarders in the United States found that the number of head injuries increased 60 percent in a seven-year period, from 9,308 in 2004 to 14,947 in 2010, even as helmet use increased by an almost identical percentage over the same period. A March 2013 study by the University of Washington concluded that the number of snow-sports-related head injuries among youths and adolescents increased 250 percent from 1996 to 2010.

So, dangerous sports continue to be dangerous, and may become even moreso, when the participants are “assured” that they will be protected from injury by a helmet.

But a helmet won’t protect your brain from smashing against the inside of your skull, and that’s where the real injury takes place. It’s inside – where the sharp bone impacts the soft brain… as well as deep within the brain where axons are twisted and sheared and torn, like roads being torn up by a twister or a flash flood.

The Crash Reel has a lot of people talking about TBI and snowboarding. Whether people are listening — and changing their behavior — is anyone’s guess.

Even more questionable, is whether people are actually asking the right questions about what makes this kind of risk-taking seem so attractive to people. They’re not always taking seriously the real need for a reward in life — and the rewards that dopamine and the adrenaline rush offer, can be “just what the doctor ordered” for someone who struggles with attentional issues, low dopamine levels, confusion, alienation, and a general sense of not really fitting into a larger community.

As long as risk-taking that can get you seriously injured is the only option offered to folks who need those neurotransmitters to feel whole and alive, you’re going to continue to see this sort of thing.

And helmets aren’t going to make a whole hell of a lot of difference. If anything, they can make things worse.

The secret about risk-taking

So, I searched Kevin Pearce on YouTube, and I came across this video of him in a video hangout promoting the release of The Crash Reel.

There are a bunch of folks on the video chat, including veterans, some other folks advocating for brain injured folks, and a fellow who’s been in the TBI rehab line of work for over 30 years. I only watched it for a little while, partly because I had a bunch of things to do yesterday. But the bigger reason I quit watching was  one thing in the video that kind of freaked me out:

Kevin Pearce is snowboarding again.

Now, I don’t know if he was cleared by his doctors, or how much snowboarding he’s doing — if he’s trying any of his old tricks, or if he’s just happy to be back on the snow and is taking it easy. I do know this — if I were in his shoes, I wouldn’t be able to NOT do the tricks, flips, spins, and all the acrobatic stuff for very long. Because doing those tricks has been a part of snowboarding for almost as long as it’s been around. And if you can’t do them, then what kind of snowboarder are you?

It made me a little sick, to be honest. Because I get the distinct impression that if he keeps it up, Kevin Pearce is not long for this world. He’s brain-injured. His brain has been permanently altered, and even though it is possible to build back a ton of functionality, and he’s looking worlds better than he did 3-1/2 years ago, there’s still got to be deficits in the areas of the brain that rule executive functioning and decision-making. That stuff can be rebuilt to some extent, I believe, but there will always be something different about how things used to be.

And when you get caught up in the moment, feeling great about yourself and where you’re at, not paying attention, maybe pushing the envelope a little bit, that’s when it becomes really easy to hurt yourself badly. Even a little fall — after a series of falls, including a major one that put you in a coma and forced you to learn to walk and talk again — can prove fatal.

The problem is, there’s no guarantee it will. The problem isn’t that there’s a chance it might not kill you. The problem is, you have no reason to believe with 100% certainty that it’s going to end your life. And when you’re caught up in the moment, feeling fine, feeling — let’s face it — invincible… that’s when things start to get interesting dangerous… even life-threatening. You have no reason to feel like you need to be careful. You have no reason to believe that anything bad is going to happen. You have no reason to believe that you can’t make that jump, that spin, that flip, and you have no reason to believe that you won’t land fine and be fine.

When you’re “in the zone” where you’re feeling really great, invincible, on top of your game, that’s when things can get the most dangerous with a TBI. And I feel pretty terrible for Kevin’s family, considering how elated he is to be on the snow again in the video chat, while not acknowledging that there’s any inherent danger in what he’s doing. He seems so happy just to be back… who would want to kill his buzz? Then again, who wants to see him kill himself?

Not to be a nervous nelly or anything. I just know what it’s like to be fed up with limitations, to want to push the envelope, and feel like yourself again… and end up getting set back, hurt, or worse.

I know what it’s like to crave those risks — not because I’m addicted to the high of doing it, but because it makes me feel like myself again. It makes me feel centered, whole, complete, totally in the moment, really alive. It makes all the static and the confusion and the frustration fade away into the background… none of that exists anymore, when I’m in a tight situation, and it’s such a relief to not have to THINK about anything, if even for just a few moments.

Taking risks is not necessarily about addiction to adrenaline. It’s not necessarily about having a death wish. It’s not necessarily about wanting to tempt fate and rebel against a tyrannical order. Taking risks can be more about just wanting to feel like yourself again, needing a break from all the difficulties of thinking things through, every single moment of every single day, and being physically hungry for the experience of just BEing part of something that’s bigger than you and gets you out of yourself and your head.

In a way, risk-taking could be seen as a sign of mental health — a needed pause from the pressures of EVERYTHING that gets you back into a sense of purpose and belonging and meaning in your life. People who don’t struggle daily with cognitive challenges like attention issues, dyslexia, and other neurological issues, cannot begin to imagine just how overwhelming and exhausting it is to have to THINK . THROUGH . EVERY . LITTLE . THING . EVERY . SINGLE . MOMENT . OF . EVERY . DAY. Unless you’re in it, you just can’t imagine how much it takes out of you and what a number it does to your sense of self.

Given that Kevin Pearce has struggled with dyslexia (according to The Crash Reel) and had difficulties in school, I can totally see how he’d end up where he is. And given how rough society is on people who can’t read and write and cogitate like the “norm” and isolates people who don’t function that way… and considering what a social guy he is, and how important his friends frends are, and how much snowboarding is a part of the world where he belongs, I’m not surprised he’s out there again.

He doesn’t have to have a death wish. He doesn’t have to need to take risks. He doesn’t have to be self-destructive. On the contrary, him getting out there is just him doing the thing that he feels will help him most — which could turn out to be the thing that does him in.

I just hope he stays safe, and that he’s got people around him who can help him dial it back, when everything in him is screaming to crank it way up… I hope he can find another way to feel like Kevin Pearce again.

TBI SoS – Restoring a Sense of Self after Traumatic Brain Injury – The Things We Do for Our Selves

This is the fifth part in a multi-part exploration of sense of self and how it’s affected by traumatic brain injury. Read the other sections here.

Note: I am currently writing a full-length work on Restoring a Sense Of Self after TBI, and I am posting the sections here as I write them (click here to go there now).

The Things We Do for Our Selves

Okay, down to brass tacks. I’ve talked a bit about the abstract, theoretical reasons why Self Matters to TBI survivors. I’ve talked about how it’s critical to have, so that we can continue the work of our recovery, and just living our day-to-day lives. I’ve talked about how we need it, to be part of a community and share our lives with the people we love and need.

Now I want to to talk about the importance of restoring strong sense of self in terms of the negative impact it can have on us, when we don’t have a strong sense — and the not-so-great things we’ll do to strengthen it. And I want to talk about it in terms of physiology, as well as psychology. The physical aspects of a disrupted sense of self are, I believe, key contributors to mood disorders, behavior problems, poor choice-making, and the kinds of risk-taking activities that can not only get us in trouble socially, but can get us brain-injured all over again. I would even go so far as to say that a damaged sense of self is one of the prime motivators that compels injured folks to engage in activities which almost guaranteed to injure them all over again. And if people tasked (officially or informally) with responding to head injuries/concussions — such as coaches, athletic trainers, teachers, doctors, family members, co-workers and employers — don’t address these core issues, the chances of the brain-injured individual putting themself in harm’s way can be pretty high.

See, here’s the thing…  Let’s take a student athlete for example — a junior in high school on the football team. (I’ll call him Junior.) Suppose Junior has been having a difficult time — in school and in life. Like most kids, he’s a bit confused about life. His body is going through changes, and socially he feels inept. He’s had a couple of girlfriends, but he can’t seem to keep them for long. His friends all seem to have girlfriends, and he’s worried about his sexuality. The last thing he wants, is to be “queer” but girls don’t seem very interested in him, and it always feels like such an obstacle course, anytime he has to interact with them.

He’s a good football player, a really capable offensive guard on first string, but it’s the quarterback, tight end, and the wide receiver who get all the attention and glory. His dad isn’t around much, and when he is around, he’s pretty rough on Junior, who gets good grades — but his dad hardly notices. His football coach is the closest thing to a real “Dad” he has, and he really seems to care about Junior and how he’s doing in school and on the gridiron. The trainer and everybody else on the team are like extended family, and the only time he really feels like “himself” is when he’s playing football, practicing, spending time with the team. When football is out of season, there’s not much left for him to do. He’s got a job as a night manager at a local department store, and he’s active in local charity work, but there’s nothing like the feeling of being part of the team. He and his football buddies hang out in the off-season, working out at the gym and following the NFL season all winter long.

Then one day Junior gets hurt in a critical game. A teammate’s knee catches him on the temple, and he goes down briefly. Everything goes a little dim and quiet, then “the lights come back on” and he sees his buddies standing over him, asking him if he’s okay. They seem genuinely concerned — but more about continuing the game. Not wanting to be a wuss and let his team down, Junior jumps up, says he’s okay, tightens his chinstrap, and jogs back to the huddle. He sorta kinda hears what the next play is, but when he’s getting set to go, he’s not really sure what he’s supposed to do, exactly.

So, he just does his thing, blocking and tackling. When the ball changes hands and he heads off the field, the coach and trainer look at him strangely, like there’s something wrong with him. But he gets a drink of Gatorade and sits down, like there’s nothing wrong. When it’s time to get back in the game, he jumps up and hustles out on the field ahead of everyone.

But he’s still not playing 100%. It’s becoming more and more apparent. His reaction time is slowed, he’s clumsy and misses blocks and tackles, and he has a few more hard falls that leave him dizzy and disoriented when he gets up. Junior struggles to understand what’s being said in the huddle, and if he didn’t have other players around him to cue off of, he’d have no idea what to do with himself out there. He’s bound and determined to stay in the game, however. It’s who he is. It’s what he does. He might not be the biggest star on the team, but he’s an integral part of the offense, and he can’t let his team down.

Next time the ball changes hands and he heads to the sidelines, he can see his coach and trainers looking at him with real concern. The trainer comes over and asks him a few questions. When he replies, the trainer tells him he’s got to sit out the rest of the game. They didn’t see him get hit, but he sure as hell acting like he got his bell rung, and he’s not 100%. He’s done a good job, the trainer tells him, but he’s got to sit out the rest of the game.

Junior is devastated. The men he looks up to, who are just about the only reliable father figures in his life, are doubting his ability to play. He’s letting them down. His teammates ask him how he’s doing, when they hear he’s benched, and he shrugs it off and tells them that somebody else needs a chance to get in the game. Watching from the sidelines, as his team advances down the field to win, he cheers along with the rest of the team and celebrates their victory. But he’s not feeling completely “there” and the celebration feels weirdly remote to him.

In the locker room afterwards, he finds that the lights overhead and the loud echoes of cheering, roughhousing teammates are more than he can take. He puts a towel over his head and tries to shut his ears, but he can’t get away from the lights and the noise. The trainer comes over and tells him he needs to see a doctor, because he might have had a concussion. Then the trainer calls his mom to warn her. His dad isn’t home — he’s traveling for business. And instead of being one of the jubilant players who helped his team to victory, he’s now a mama’s boy who’s pushed to the margins and can’t be part of the celebration.

The only good thing about this, is that his dad isn’t around to give him shit about being getting hurt and being a wuss who couldn’t suck it up.

The doctor visit results in the worst news possible : CONCUSSION. “Probably a mild one,” his doctor says, but Junior wonders what’s so mild about this killer headache, confusion, fatigue, and inability to deal with light and noise. The doctor prescribes complete rest for a week — no television, no reading, no activity of ANY kind, including physical activity. Definitely no football. Not till his symptoms clear.

Junior sits it out. He stays home from school, chafing under the change to his daily routine and the loss of his friends around him. Some of his teammates come over to the house to visit, but he’s so tired, he can’t spend much time with them. His symptoms don’t seem to be going away, no matter how much he rests. He’s going out of his mind, climbing out of his skin, and he can’t seem to get his bearings. He feels slow and stupid. Dense. Retarded.

He’s not himself, and the tenuous hold he had on his evolving identity, is slowly slipping away. His friend are all busy doing what they do, and his team has moved on to post-season play, with a chance at the championship. He tries to adjust to things, tries to stay positive and up-beat, but without football and without being part of his team as an active member, he feels like he’s been set adrift on a raft in a vast sea, as all the other boats sail right past him and leave him in the dust.

Junior starts hanging around with the wrong crowd. They’re the pot-heads and partiers who hang out after school at a playground not far from his house. He’s not going to football practice, and his buddies don’t know what to do with him, but he needs some sort of social interaction. Those “losers” he used to laugh at are now the only people who actually make time for him. When he’s hanging around with them, nobody cares if he’s stupid or slow. All that matters is that he drinks and smokes pot and hangs out with them.

That’s easy enough to do. And his new friends realize that this clean-cut football player dude would probably do a pretty good job of getting hold of some beer for them on the weekends. He looks respectable, and with a fake id, he could probably pass for 21, if the light in the bar is dark enough and his id is good enough. They hook him up with a fake id, and drive him out to a bar a few towns over. They drop him off and tell him they’ll circle the block and pick up him up with the sixpack of beer he’s supposed to buy.

Junior takes a deep breath and steps into the bar. It’s smoky and dark and he’s never done this before. He’s also scared shitless, as he approaches the bar, and when he produces his id, his hands are shaking a little from all the adrenaline in his system. As he fakes his way through purchasing “a six” suddenly all the fogginess disappears. As the adrenaline rushes through his veins, he feels a clarity and a focus that he hasn’t felt in months. Suddenly, all of his senses are ON. He’s not dense, and he’s not retarded. He finds himself actually able to carry on a conversation with the man behind the counter, who is clearly skeptical about his age, but begrudgingly sells him a six-pack.

Feigning nonchalance, Junior tucks the six under his arm and saunters out to the street, where his friends are just now coming by to pick him up. Beneath his casual veneer, he’s feeling more alive than he can remember feeling in a very long time.

Jubilation! He did it! They drink the six-pack while driving around on back roads, and for the first time in a long time, Junior feels like he actually achieved something useful. He’s part of a team again, and the adrenaline rush, the focus, the intensity of it all… well, it feels a little like old times. Except this time, it’s real-life, not just on a football field.

This time, too, the payoff is a buzz from the beer, on top of the adrenaline — and by the time his buddies drop him off at home, he’s feeling more normal than he has in a long, long time. In real time, it’s only been a few months of feeling “off”; in teen years, it’s been half a lifetime.

But now he’s back.

You can probably imagine the continuing scenario. Junior’s initial success at buying beer for his buddies continues. He hones his technique, learns the best places to buy booze, and he pushes the envelope, working his way up to buying cases. When the local bar owners catch on and stop selling to him, he finds older guys who will buy for him, and they exchange money and goods at the back loading dock at his work. The thrill of buying from someone else hardly does it for him, however, so he takes up reselling to others, playing middle-man in an informal network of underage drinkers. He expands ihs business into drugs, including some pot and some speed, but he steers clear of the really hard stuff.

With the extra money he makes, he buys himself a nice, fast car, and he starts to rack up speeding tickets. The only thing that keeps him from losing the car is his graduation and moving out of his parents’ house to go to a college (that he barely got into) several states away. His grades never did recover fully after he was benched, and he never did get back into football. His symptoms just lasted too long, and by the time they subsided, he was too entrenched in the party life to give a shit about football or any of those jocks he used to hang out with. He got a new life — one that was almost as full of comaraderie and excitement as his football life — but that got him money and, in some ways, more thrills.

In college, the drinking and drug scene is much more pronounced, but enforcement is a lot more regular, so the thrill of peddling controlled substances disappears. If nothing else, Junior is practical. Plus, he meets up with some guys who are into extreme sports — bungie jumping, rock climbing, backwoods mountain biking, windsurfing, waterskiing, and even skydiving. He gets active again, gets back in shape, and has a new bunch of friends who like to party as much as they like to push the envelope with extreme sports. Once again, he’s part of a team, part of a cohesive bunch of compadres who — much more than was ever true in high school — rely on each other intensely, sometimes for life and death.

Junior does okay in school. Not stellar, but not flunking out. He’s sure he’ll graduate and be able to get on with his life.

The only problem is, he keeps getting hurt. Not big injuries, mind you, but little things. Little stupid things. Like wiping out during waterskiing and messing up his neck and back. Like getting dumped off his board while windsurfing. Like taking some spills while mountain biking and falling a few times while rock climbing. His buddies tease him about it, and he fights like crazy to get back after the injuries. But each time, it feels like a little more of him goes missing. He has a hard time concentrating. He has trouble with lights and noise. He loses his temper a lot. He can’t seem to hold his liquor like he used to. He gets in fights, too. His buddies stay pretty steady with him, they watch his back, and he does manage to keep up. But still, something just doesn’t feel right.

So, he pushes even harder, putting himself in more and more dangerous circumstances to get that rush, that focus, that intensity that keeps him PRESENT as nothing else can. When he’s dull and dense, he feels so stupid, so useless, and he hates feeling that way. That’s not him. It’s not who he is. But when he’s standing at the open door of the airplane with his parachute strapped on, looking down at the earth below… well, it’s magic. And as he’s hurtling through the air, finally — at last — he feels like himself again.

From here, the story could go in just about any direction. Junior could be killed in an accident. Or he could be arrested for assault or manslaughter, repeat the offenses while drunk or high, and spend much of his life in prison. He could experience a religious conversion and turn his life around with the help of his church. He could meet a good woman who gets him back on track. He could find work as a stuntman and do well for himself. Or he could end up unemployable and on the streets with a drug/drinking problem and dementia from all the hits he’s taken.

Anything is possible. Any outcome — good or bad — is as likely as any other. But even knowing he could “fix” the problems to some extent won’t change the fact that losing his connection to his emerging identity when he was in high school scrwed him up. It took him on a detour that separated him from the things that mattered most to him — the things that helped him define who and what he was. And the only way out of that detour, was a massive adrenaline rush that blocked out all the confusion, sharpened his senses and made him feel like he was back.

See, here’s the thing — traumatic brain injury, concussion, head injury, whatever you want to call it, can cause the processing in your brain to slow significantly. And you may not even realize it, a lot of the time. When I had my neuropsych eval and the results for my processing came back signfiicantly slower than I thought they “should be” it was pretty devastating to me. BUT it suddenly made a lot of things make sense. Especially when I looked at how I got myself back to feeling “up to speed”.

Like Junior, I was hurt in a high school football episode (though mine was a lot more informal). I was also hurt in a soccer game. For all I know, I could have been hurt playing baseball, too — I just don’t remember any specific instances. And I spent a whole lot of time over the years looking for ways to pump up my adrenaline and feel like I was up to speed again. Slowing down when you want to go faster can be devastating for a teenager, and the last thing you can do is ask for help because you don’t want to look bad or seem “retarded.” I also spent a lot of time with the party crowd, driving back roads on many a night, looking for booze and smoking weed. Did I like the people I was partying with? Not always. But they accepted me for who I was, and they also stuck together when we were out on beer runs. We had that comaraderie I missed when I was out of sports. I managed to keep myself in games, even after I got hurt (people didn’t know much about concussion back then), but when the seasons were over, and the teams had all dispersed, who was I and what did I have to live for? I wasn’t entirely sure.

Now, over the years after high school, I did manage to get on with my life. I went to college (had four years, but didn’t manage to graduate), and I went on to find jobs and build a life I could be proud of. But that nagging sense of having lost part of myself never truly went away. And after each successive injury — the car accidents and the falls — I felt like I lost a little more of myself. I would build back… but then I’d get hurt again.

And to compensate, to make up for things and develop some sense of myself as a unique individual, I worked my ass off in just about every area of my life. I also got in the habit of pushing the envelope — taking risks, courting danger, doing things that no sane person would do (like buying a one-way ticket to Europe without any clue how I would get back). I went head-to-head with the law. I got myself in trouble (restraining order and all).  I ran around with edgy people who could have gotten me killed.

Those risk-taking, danger-seeking activities made me feel so ALIVE. So together. So with it. When I was high on adrenaline, hopped up on stress hormones, all the pains and distractions of my life disappeared. They just faded away, blocked out by the biochemistry in my brain and body. Going head-to-head with a crazy dude who lived in my apartment building might have been stupid, dangerous, and self-destructive, but when I was doing it, I felt so… “normal”. I actually felt like myself. And as bone-headed as it was to start shouting at a police officer, when I was yelling, I felt more like myself than I had in weeks.

Those kinds of activities, lame-brained as they were, offered me something that no amount of good sense could — a biochemical pump that got my brain moving at a rate of speed that made me feel like a regular person. When I wasn’t pushing the envelope, I felt so dumb, so dense, so useless. I often still do.

But as helpful as these adrenaline-producing activities hav been, they have also stressed and fatigued me and set me up, biochemically, for a TBI-induced case of PTSD that’s far less “serious” than, say, a case induced by war or other violent trauma, but still had an impact. Years and years of working-working-working to get myself pumped and moving at a speed that makes me comfortable, jammed my sympathetic nervous system in permanent high gear, like a runaway Prius, to the point where up until a few years ago, the idea of relaxing was so foreign to me, I had decided that there was no good reason for me to bother with doing that.

And I’ve had to train myself to relax. Seriously.

In terms of my overall life, I have to say that TBI and PTSD have walked hand-in-hand, and my constantly revved state contributed directly to my fall in 2004, which nearly derailed my life and cost me everything. Jammed in permanent high gear (in part because of lacking a clear sense of who I was and what place I have in the world), I was overly tired and not paying attention when I was standing at the top of those stairs. Down I went. BANG-BANG-BANG went my head. And my life turned to shit.

Had I not been injured in high school, would I have made it through in one piece? Who can say? I’d already had several concussions prior to high school, and I had already developed a lot of difficulties with behavior and choice-making. Hell, I was getting in TBI-related trouble when I was 12. So, I can’t lay it all at the feet of the sports concussions. But I suspect that if I hadn’t had those injuries and hadn’t lost touch (in the off-season) with the identity that sports gave me, I might have had a fighting chance to get myself on the good foot and form a better foundation for the rest of my life.

Obviously, there’s no way to tell how things might have gone. But we sure as hell can see how things CAN go, after a traumatic brain injury. It’s never too late to turn things around, but losing your sense of self can certainly do a job on a young — or older — brain and send you down a path that it would be better if you avoided.

This ends the fifth part in a multi-part exploration of sense of self and how it’s affected by traumatic brain injury. Read the other sections here. More to come…

Because rust never sleeps

 

Tea catastrophe averted

 

I got a good lesson this morning. I managed to sleep in  till 8:15, with my earplugs firmly wedged in my ears and extra curtains pulled across the windows to block out the light. Even the birds that fill the trees around my house, clamoring for attention from each other and battling for position at the bird feeder first thing in the morning didn’t wake me up, as they often do, ’round about 6 a.m.

I’ve been feeling progressively more under the weather over the past few days, with my balance getting worse and worse and the headache starting up again. Work has been really good – very rewarding and satisfying. But it’s taken a toll, and when I got up this morning — without doing my usual breathing exercise (I did that at 4 a.m. when I was trying to get back to sleep) — I was feeling wobbly and out of it. I had to lean against the walls as I walked to the bathroom, and while I brushed my teeth, I had to prop myself up with one hand firmly on the sink counter.

I managed to get downstairs in one piece, and I made my breakfast slowly, deliberately. I took my time with it, taking care to not move too quickly and put myself off balance. In the past, when I was still dealing with the early years after my last injury, being off balance would send me into a panic and it would throw me off for the whole day, even before the day began. But since I’ve been making important changes in my daily life — including regular exercise — the panic has subsided considerably, and I’ve learned how to handle the sense of teetering on the edge of collapse without having my psyche collapse, too.

And that’s important.

So, anyway, after I had my breakfast, I decided to spend my day reading and writing and checking in with myself. The weather has been pretty wet, lately, and I can’t do much outdoor work. Plus, I’m not feeling well, and I would love to just spend the day reading, studying, and writing. Taking it easy, instead of taking care of everybody else’s business. I put some water in the electric kettle and fixed myself some fruit with crackers and goat cheese and went up to my study to settle in.

After a little bit, I realized I’d forgotten my trusty writing cardigan, and I went back downstairs to get it from the kitchen. While standing in the kitchen, looking around to see if there was anything else I’d forgotten, I heard an odd hissing sound. I went over to the kitchen counter and found my tea mug with a dry tea bag in it, and beside it was the electric kettle, hissing away, nearly all the water boiled out of it.

Now, the way the kettle has always worked in the past, is that when it gets low on water or reaches a certain temperature, it shuts off. This time, it did not shut off. So, I did. And when I looked closely at the heating element, it was showing signs of rust — perhaps from the intense oxidation from the coils evaporating off the water?

I kind of went into a tailspin about this. Yes, I know my alarm was disproportionate to the situation, but I got seriously upset by this and I started to beat myself up over having put water on and then walked away. I won’t write all the things that went through my head, because they are not the kinds of things I care to archive for posterity. Suffice it to say, for a few minutes this morning, I was not my best friend.

But then I realized I was pretty off the charts with my distress — how much would a replacement kettle cost? not very much, really — and it was more about me being absentminded and not paying close enough attention … no to mention feeling ill and “off” this morning. So I was wasting a lot of precious time getting bent out of shape over this. It’s turned out to be a beautiful fall day, and I have given myself permission to take time off to take care of myself. Why should I waste my time and energy beating myself up over a simple case of absent-mindedness that really anybody could have done, too?

Okay, so I established that it wasn’t worth wrecking myself over this oversight. And I realized that this electric kettle is not going to automatically turn off whenever it’s low on water, as I assumed. I would just get in the habit of A) putting more water in the kettle and B) not leaving the kitchen till it’s done heating the water, which takes all of maybe 30-60 seconds. Simple solution, right?

Well, what came up next was the burning question (and yes, I realize this sounds a bit neurotic, but I am not feeling well this morning) about what to do with the “extra” water that I wasn’t using for my tea? See, when I pour water in, I pour exactly as much as I need, so when it’s hot, I don’t have to check the level of liquid in my mug. I just know that I have exactly as much water as I need. If I heat more than I need, what will I do with the extra?

This was the hotly burning question in my fuzzy brain this morning (in the moment it seemed extremely important). I was all up in my head about the evils of waste and getting frantic about not having the exact amount of water I needed in the kettle, and having to gauge how much I was pouring in… and so on.

Ugh.

Then it occurred to me that having the extra water would come in handy for clearing the drain. I’ve been having some problems with the kitchen sink drain getting sluggish. My fix for it is to pour boiling hot water down, and that often works. So, this “problem” is actually no problem at all — in fact, it solves some problems, namely:

  • I need to slow down more in the morning, and this will help me do it.
  • I need to heat more water in the kettle, so it doesn’t fry the coils, and this will let me do that.
  • I need to periodically clear the drain with boiling water, and this will let me clear it daily, so the buildup doesn’t accumulate and become a bigger problem down the line.

So, there’s really no problem at all. Not anymore. But this morning, for about 15 minutes, I was going into a tailspin that threatened to wreck my entire day and set me down a spiraling path of upset — at the innocent electric kettle and at myself for getting so bent out of shape.

The electric kettle is forgiven, and so am I. I know full well that I am off balance, not feeling well, and I am spending an awful lot of cognitive energy just trying to keep myself vertical and not get hurt. I can cut myself a break, and just get on with my day and my recovery from the past week+ of hectic activity.

I’d better cut myself a break. Because rust never sleeps.

Neil Young reminds me of that constantly, while I’m driving to and from work. For some reason, radio stations in my area keep playing his music, and “rust never sleeps” is often what I hear him singing about. My, my,  hey, hey… It’s better to burn out, than to fade away… And this gets me thinking. Especially in the autumn, when the effusive growth of summer is giving way to frosts and withering and deadening, and the cycle of life turns to a cycle of death, my thoughts become, well, a little maudlin. The change of the season gets me to wondering “what’s it all about?” and “is this all there is?” and all manner of existentially angst-y ruminations. And my brain starts to perseverate and lock onto misperceptions and misconceptions and any number of irregular reasons to doubt my ability to live effectively in the world.

Some days, I suspect it’s due to the way my life turned in the course of my concussion-punctuated years. Each injury left a mark on me — a “ding” or two or three in the fuselage of my vehicle that didn’t exactly ground me, but kept me from achieving the heights I might otherwise have reached. I don’t want to blame the brain injuries for my ills — certainly, they have played a part, but they’re not the only reason I’ve had difficulties.

More than the traumatic brain injuries, in fact, I believe that the aftermath, the reactions, the later reactions of others and myself (which were based largely on ignorance about what brain injury does to the personality) and the meanings I gave to those reactions, had the biggest impact. And the time when I was actually recovering from the physical effects, I was sinking into a psychological morass of confusion, dread, insecurity, and the conviction that this temporary situation was permanent, totally screwed me up. After my injuries, my neuroplastic, adaptable brain was on the mend and finding new ways of doing the things I wanted to do, but because those new ways were different from the old ways — and therefore threatening and alarming to me — I discounted them and told myself they were WRONG and I should not be doing things the way I was doing them.

I had it in my head that the roundabout way I learned was Wrong.

I had it in my head that the way I communicated with people was Wrong.

I had it in my head that the way I structured my daily life — much more downtime than most people I knew — was Wrong.

I had it in my head that the choices I made about my social life — who I would and would not interact with — were Wrong.

I had it in my head that the choices I made about my domestic life — not having children and not officially getting married until 15 years into the settled, intricately entwined relationship — were Wrong.

Now, to be fair, there was an awful lot of social pressure to adhere to certain ways of doing things, so I had plenty of reinforcement for judging myself and my choices. And the rigidity of my upbringing didn’t help. But I suspect that the rigidity of my parents and wider social circles wasn’t the only reason I was so locked in, and so quick to judge myself. Indeed, I believe that the head injuries I sustained as a young kid (when I was about 4, then again when I was 7 and 8 ) predisposed me to an intense rigidity that locked out any alternatives to routines or “standard issue” behaviors.

The Brain Injury Association of New York State has a great little tutorial on Flexibility Versus Rigidity In Thinking And Behavior that I really like. (They’ve got a bunch of great material there, especially for teachers and parents of brain-injured kids.)

Here’s a snippet from the tutorial:

WHY IS RIGIDITY/INFLEXIBILITY IMPORTANT FOR SOME STUDENTS AFTER TBI?

Students with TBI or other neurological conditions sometimes demonstrate extreme forms of rigidity or inflexibility. Rigidity/inflexibility is often associated with damage to the frontal lobes, the most common site of injury in TBI. Therefore, some degree of inflexibility is common in students with TBI. This may manifest itself as difficulty (1) making transitions during the school day (e.g., from lunch or gym back to classroom work), (2) tolerating changes in schedules or everyday routines, (3) adjusting to changes in staff, (4) ending an intense emotional feeling, and the like. In extreme cases, a transition as apparently simple as from sitting to standing may be difficult and cause stress.

Related but not identical to inflexibility is the phenomenon of perseveration. Perseveration is a possible result of neurologic impairment and is characterized by continuation of the same behavior or thought or words or emotions after the reason for the behavior, thought, word, or emotion has passed or the thought or behavior is no longer appropriate to the situation. . For example, a student may remain focused on a given emotional behavior state long after the reason for that state has been forgotten.

This pretty much describes me when I was a kid, though today I’d have to say that emotional rigidity and perseveration is much more of an issue than cognitive. Cognitively, I can move on. But emotionally, I’m still stuck. I think that getting out in the world and holding down jobs and having gotten positive reinforcement in work environments has helped me cognitively. I’ve been able to really reap great rewards from using my head, and that’s encouraged flexibility and creativity. Emotionally, though, I get jammed up and stuck. That’s where I get rusty — stuck in place and wedged into an old pattern that doesn’t serve me or the people around me.

No, rust never sleeps. So, what do I do? Do I drive myself onward-onward-onward, in hopes of burning out before I fade away? Do I race at top speed through life and damn the torpedoes?

Um… No. Racing around and pushing myself are the very things that encourage rust. Like the super-heated coils in electric kettle caused the metal to rust, so does my super-heated life cause my system to lock up and show signs of wear. Maybe not in Neil Young’s case, but in my case, pushing for burnout is a sure route to rust. And I don’t have all the time in the world — I’m not getting any younger, and my window of non-fatigued time is significantly less than most people’s I know — so I just don’t have a lot of time to spare, cleaning up after myself when I crash and burn.

That’s no way to live.

What to do?

This is the eternal question, and it keeps coming around with me, no matter how much time I put between myself and my injuries. My first TBI probably happened when I was about 4 years old. And there were two more when I was 7 and 8 years old. More came over the years, including sports concussions and car accident mTBIs, for a total of at least nine separate instances of head injuries that involved some level of disruption of consciousness, followed by cognitive, behavioral, and physical problems.  I never got help for any of them, until about 3 years ago — just a lot of headaches (literally and figuratively) — and only in the past 3 years have I started to systematically and mindfully approach my issues with a focused desire to overcome them.

I’ve learned a lot about how to deal with the basic things — get my exercise regularly, eat right, get enough sleep, and check in with my neuropsych on a regular basis. But as the basic issues get resolved, the “higher level” questions emerge — as in, how to make the most of what life I have left, so that I can have the best life possible, whenever possible?

Ironically, the answer to this question has gone hand-in-hand with the answers to my most basic human needs. The answer is to just slow down and pay attention. For someone who is as driven as I am, it’s a tall order, and not that easy to do. But you know what? When I not only slow down but also pay very close attention to what I’m doing with myself and my life and my choices, many of my TBI related issues resolve.

When I slow down and pay attention to my physical fitness, my joint pain and headaches subside considerably.

When I slow down and pay attention to what people are saying to me, the problems I have with understanding and following clear up considerably.

When I quit going 150 miles per hour through every single day and pay attention to what I eat and how rested I am, my need to pump myself full of adrenaline and push past all sensible limits becomes far less pronounced.

Now, slowing down and paying attention is the sort of thing I’ve had to learn from scratch. A big driver behind my rushing is a constant low-level panic that simmers in my gut, day in and day out. It’s that constant restlessness, the constant agitation that comes with TBI. It’s my brain working overtime trying to find its way through the tangled networks that have developed over the years. It’s my body’s reaction to the intense energy needs of my very-active brain, and the low fatigue threshold I have.

Slowing down and paying attention has been closely connected with my exercise routine, taking the edge off my stress, finding outlets for the nervous energy, and clearing out the biochemical sludge that builds up after countless experiences of surprise/shock/dismay/confusion that come at me in the course of each day, when the things I expect to happen … just don’t… and I need to immediately adjust and move in a different direction to get where I’m going.

That surprise/shock/dismay/confusion is an ongoing situation for me, and it may never change. I may find myself spending the rest of my life realizing I was all wrong about something and needing to find another way to think/act/be. But at least I have my exercise to help me clear out the chemistry of those micro-traumas. And I have an understanding of that bio-cognitive action that lets me cut myself a break and not get all bent out of shape — for extended periods of time — over things that are either directly attributable to my brain having gotten a bit banged up over the years… or are long since over and done.

But even if I do spend the rest of my born days troubleshooting these kinds of cycles of pseudo-drama, I always have my fall-back, my comfort in the midst of the storms — the knowledge that slowing down and paying close attention to what’s going on around me, with heightened awareness and intense curiosity, can and will pull me out of my funks, can and will restore me to some sense of myself, can and will connect me to my life once more, in ways that running around at top speed never can and never will.

Rust may never sleep, but I don’t need to run from it. Ultimately, it’s not the quantity of life that staves off the debilitating freeze, the rust. It’s the quality. Cooling the hot elements, adding more water than I “need”, and just sticking with my life in all its aspects till I find some peace, some resolution, and I can make my tea… that’s what does it for me.

Now, what can I pay attention to next?

Be very, very careful

 

Warning Will Robinson!

 

Not long ago, one of my readers posted a comment about how important it is to be careful, so you don’t sustain a brain injury. Those words (at least, the gist of them, as I’ve since forgotten exactly how they said it) have stayed with me over the past day or so.

I have been working overtime a lot, having taken on a lot more responsibility that is a pretty big deal. And I have not been eating quite as well as I should be. I’ve been hitting the vending machines regularly — not insanely, chowing down on Skittles and Pop Tarts and Swedish Fish and all manner of sugar and chocolate. But I have been eating a chocolate bar a day, along with my beloved peanut M&Ms that keep me going (I need the protein).

At the time when I’ve been needing more sleep, I’ve been getting less. The Headache is back — not headaches but Headache — the long-lasting, perpetual one that doesn’t have any breaks and just keeps going to the point where I barely even notice it anymore. Except when I do. I’ve started to get the tactile sensitivity —  my clothes are hurting me — and light sensitivity and noise sensitivity. I’m kind of wired, as I’m sure you can tell. And in fact, it doesn’t take a whole lot to get me wired, so I’m feeling the burn, right about now.

On the bright side, I am functional. I’m able to do my work and get things done and interact with people at work. But that’s a downside, too. Because when I get like this, I tend to push myself and go faster than I should. And when that happens, I can get hurt. I’ve fallen down stairs a number of times in the past six months, because I was in a hurry. Nothing bad enough to injure me, but enough to rattle me.

I must be very, very careful. Especially because the BIGGEST symptom I’m having, which I neglected to mention above, is the vertigo. Dizziness. Crazy spinning head and the inability to turn quickly in any one direction, without my head going haywire. I am so dizzy,  I have to keep my back absolutely ramrod straight, or I start to lose my balance. Standing at the tops of stairs is interesting, too. And I have to hold onto walls as I walk along, or I tend to wobble and stagger like I’m drunk.

This sucks.

I can’t even close my eyes without the room spinning, and I have felt like I was going to throw up for three days running. Fortunately, I’m able to keep it together reasonably well with a discretion that masks my issues. Nobody needs to know that I’m as badly off as I am. Nobody needs to know that I’m about to heave all over my office. Nice for them. Not so nice for me.

Yes, this sucks.

But you know what? It’s all in the line of duty, and it’s all for a good cause, and I get to lay low this weekend. I don’t have any pressing activities I must do. I can lay low and be ill and take care of myself at my own pace. My spouse has a bunch of commitments over the weekend, so again I’ll have the place to myself for most of the coming two days. So I can roll myself up in my blankets, pull the blinds, and just hibernate in my cave.  Drink hot tea — the nasty cold season tea I can’t drink with anyone around, it smells so awful — and read a book. I never did finish The Bourne Identity. I got it it out of the library again a week ago, so I can spend my time catching up (and seeing how much I remember from before).

All in all, I feel physically awful, but I’m still bright-eyed and bushy-tailed. I’m so tired I’m literally falling over, but it’s a good tired that comes from having spent so many, many hours doing work I love in an environment where I’m actually able to do it.

Yeah, baby.

But I have to be careful. Seriously. I need to watch myself, make sure I don’t fall, make sure I take care of myself better this weekend, and get some recovery under my belt. I can’t continue on at this pace — must take some downtime. And be very, very careful, as I’m moving about.

Times like this, I’m reminded of how head-injured folks — especially athletes — so often re-injure themselves.

We tend to have have crappy risk assessment skills after we get hurt.

We also tend to over-estimate our ability to navigate challenging situations.

And all too often we feel like we have something to prove, so we push ourselves even harder than most — even with diminished co-ordination and balance.

These things I know. These things I know about myself. As euphoric as I am about this new job and all the great potential for it, I still know that I am running a risk every time I push myself, and I am running a risk every time I don’t take it easier than I am. I know that I am in danger of being injured — as anyone is who’s overtired and tremendously off-balance and walking up and down stairs, driving in heavy traffic, and generally going about their business in environments where you can slip and fall and get hurt.

I must be very, very careful. And so I shall.

Addressing the trauma in traumatic brain injury

Source: Scott Butner

As I’ve been exploring the landscape of my head injuries over the past few years, one aspect of my life experience has consistently come to the fore — trauma… and its long-term effects on lives of both survivors and the ones they love and live/work with on a daily basis.

It’s almost a total fluke that trauma should even have this on my radar. But over the years, I’ve befriended — and been befriended by — a number of psychotherapists and counselors, most of whom specialize in trauma. In retrospect, I suspect that many of them have assumed that my difficulties were due to past traumatic episodes — rough childhood, misspent youth, etc. In fact, one of them has flatly denied that my issues could be due to TBI, and they became more and more insistent about me getting a therapist, which was probably the worst thing I’ve ever done, in retrospect. (This friend’s denial is a topic for another post — it’s quite interesting, “clinically” speaking.)

Now, I have to say that after more than 10 years of being around these friends of mine, I get a little tired of every ill known to humanity being ascribed to after-effects of trauma. When I talk about experiences I’ve had and people I’ve encountered who have annoyed me or done some seriously sick stuff, I’ve often heard the refrain, “Oh, they’re a trauma survivor, so they’re dissociating/being triggered/experiencing kindling/re-enacting their past traumas.”

There’s not much room for just being an asshole. For some of my friends, it’s all about the trauma. And in an attempt to better understand what it is they’re talking about, I’ve attended some trauma workshops, as well as read some books. I’ve got Peter Levine on my bookshelf, along with Belleruth Naparstek. And now I’m reading Robert Scaer, M.D.’s  book The Body Bears the Burden, which explains (from a neurologist’s point of view) the effects of trauma on both the body and mind of someone who’s gone through awful experiences — and those whose experiences don’t seem that terrible, compared to, say, Pakistan’s flooding or suicide bombings in Kabul.

The DSM-IV defines a “traumatic stressor” as:

[an stressor] involving direct personal experience of an event that involves actual or threatened death or serious injury, or other threat to one’s physical integrity; or witnessing an event that involves death, injury, or a threat to the physical integrity of another person; or learning about unexpected or violent death, serious harm, or threat of death or injury experienced by a family member or other close associate

The part that interests me is the “direct personal experience of an event that involves actual or threatened death or serious injury, or other threat to one’s physical integrity”. The other parts are just as significant, but I’m not going to speak to them at this time.

When it comes to mild traumatic brain injury, I think sometimes the severity of the experience tends to get downplayed. After all, the injury is mild, right? Well, interestingly, mTBI survivors apparently can show more disruptive symptoms of traumatization after the fact, than survivors of more severe injuries. And these long-term effects  can wreak havoc in the lives of survivors, as well as their immediate circle.

Problems such as fatigue, emotional volatility (emotional lability), rage, agitation, irritability, insomnia, sleep deprivation, anger, temper flares, temper tantrum, anxiety, fear, panic, risk-taking, danger-seeking, not to mention all the crisis and drama that can accompany hormonal spikes during times of stress, certainly don’t make things any easier. If anything, they complicate recovery by flooding the system with stress hormones which interfere with your ability to learn from your experiences. So, at the time when you’re having to get a new grip on your newly changed life with its “new normal,” the biochemical processes going on behind the scenes may be getting in the way.

How maddening is that? At just the time when you need your brain to be able to recover, it’s busy cranking out all sorts of interesting concoctions that specifically get in the way of your recovery.

Because (I believe) there is unresolved and un-dealt-with trauma wreaking havoc behind the scenes.

Trauma in mild traumatic brain injuries is particularly tricky. After all, the injury itself may not have been that dramatic — something gets dropped on your head, or you get in a fender-bender, or you slip and fall down and clunk your head on something. You get up again, walk away from the scene… maybe pay a visit to the emergency dept of your local hospital, get scanned, and you get a “clean” bill of health (and maybe a few pointers on what to watch out for to make sure you don’t have more serious issues later on). Then you’re expected to get on with your life.

But inside your skull, something else is happening. Some of the fragile connections in your brain have been sheared or severed or frayed, and your brain isn’t able to communicate with itself like it used to. On a fundamental, profound level, your very existence has been threatened — only nobody can see it. Even you can’t see it very well, because your brain is either still bathed in the stress hormones designed to keep you from feeling a bunch of pain (and thus preventing you from fleeing an immediate threat), or it’s just not making the connections it “should” in order to give you — the resident owner — a clear picture of what’s going on. Or it could be both things going on.

In some cases, from what I’ve read in Dr. Scaer’s book, the onset of problems can be delayed by hours, even days. So, right after the accident/event, you’re walking around looking fine, seeming to be fine… maybe you’re a little shaken up, but that’s to be expected.  But then you start to slip away… decline… feel the effects of what was supposed to be a mild event that had no serious immediate effects you. In your system, hidden from view, the process of gradual (and possibly debilitating) problems has begun.

This process is utterly maddening. Everyone around you, who was worried for your safety, just wants to be relieved that you’re okay. But all of a sudden, you’re acting strangely, you don’t seem like yourself, and you’re complaining all the time. The complaints don’t get better over time, either. They get worse. And for no apparent reason. People think you’re looking for attention, that you’re trying to “milk” your accident for all it’s worth. They just want you to get back to being your old self. But you’re doing the exact opposite.

And the pressure to return to normal builds, even as your system is being eroded by the biochemical havoc of trauma that was introduced to your system which has not been cleared — it hasn’t even been recognized. How can you clear away what you can’t see/hear/detect?

Indeed, the most insidious and problematic manifestations of trauma take root when the person having the experience is taken by surprise. Studies have shown that bracing for impact limits the impact, but being blindsided makes it worse. And it makes the experience as a whole worse. The body detects this threat to its safety and existence — all of a sudden out of nowhere — and it unleashes myriad biochemical substances for us to deal with it — including endogenous opioids designed to numb the pain of injury. Animals in the wild which are being chased by predators, when there is no way to escape, will often fall down as though dead, their bodies full of chemical substances that will both numb the pain of being devoured and turn them into “dead” prey which might discourage a predator from actually killing them.

The same biochemical process is in place with human beings. After all, once upon a time, we were hunted as prey by animals larger than us. Indeed, we still are, in some cases — the predators happen to be other people, more often than not. In times of combat and assault, when all escape routes have been blocked off and we believe (on some level) that we’re done for, our brains and bodies do their natural thing — they bathe us in substances to protect us from feeling that knife going through our lung or feeling that bullet smash through muscle and bone.

Our brains and bodies are doing their utmost to protect us as best we can. But our minds tend to interpret the experience differently.

In the case of animals who freeze and then survive the assault, they shake themselves, go through a series of shuddering/jerking motions, do heavy, deep breathing, and then pick themselves up and get on with their lives. In the case of humans who freeze and then survive the assault, we tell ourselves we were wusses for freezing the way we did, and we plunge into cycles of self-doubt and conflict, feeling like we failed — when we were simply being the biological creatures we are designed to be.

And the self-perpetuating downward spiral of the PTSD loop starts. Where it stops, is anybody’s guess.

Therapies which have been successful in freeing people from that negative feedback loop are those which engage the body to discharge the sudden burst of biochemical self-protection, and get the autonomic nervous system back into balance. In the completion of the fight-flight-freeze cycle, the body is allowed to return to its most effective ways of working. And we can get on with our lives.

Here’s where the problem starts with mTBI. (Note, I’m not a doctor or certified health professional — this is just my belief system about how our systems interact with the world around us.) If the injury is “mild” then what’s the big deal? Why should we even need to complete the fight-flight-freeze cycle? Wasn’t the injury itself mild? We just got clunked on the head. Big deal, right?

Hardly. I think with mild traumatic brain injury, there may be another aspect of it that comes into play. With “mild” injuries (not that any brain injury is ever mild, mind you), the brain itself perceives the threat on a basic, biological level. It knows something’s wrong, and it kicks into overdrive, trying to right what’s wrong.

I suspect this is why people who have sustained concussions or mTBIs are so prone to denying that there’s anything wrong. Our brains are so busy trying to right their internal systems, that they fail to communicate with the rest of the world — that includes our conscious mind.

Based on what’s happened to me, what I’ve observed, and what I’ve read, here’s the cycle that I believe gets set up:

  1. An individual experiences a sudden, unexpected impact or injury, which injures their brain. This can be a fender-bender, a tackle or collision in a sports game, getting cold-cocked by an attacker, or having something fall on/hit their head.
  2. Fragile connections in their brain are frayed, sheared, or destroyed completely… or all three.  On the surface, they seem to be fine. The injury doesn’t look like that big of a deal. It’s just a bump on the head or a hard hit or a bit of soreness or being dazed after the fact.
  3. The body interprets the impact as a threat to the system, and it unleashes a biochemical cascade of hormones and other neurochemicals which narrow the focus, numb the system to pain, and shunt energy away from “extraneous” body functions.
  4. The injured person’s brain senses something is amiss, and it works like crazy trying to sort out what just happened. The whole body-brain connection needs to be tested to make sure everything is still online, so the system can correct itself as need be. Any outside talk or input is dismissed and rejected — “Are you alright?” isn’t a sign of concern, it’s an intrusion into the vital process of the brain checking through the bodily system for problems. And the brain is so focused on its internal process, that it “forgets” to tell the rest of the world what’s going on. There is no full communication loop with the brain — it’s in damage assessment mode, and it blocks out any input as well as refuses to provide output.
  5. The impacted individual wanders around in a bit of a daze, then they appear to recover, and they get on with the rest of their activities. They drive on in the car, they get up off the bench and go back in the game, they pick themself up off the pavement, or they go back to work.
  6. In the course of going about their business — both immediately and over the course of the coming days and weeks — their brain is having trouble figuring out how to do the things it used to do so effortlessly. The old connections have been disrupted, as though a massive storm had torn through a region, torn up trees, unleashed flash floods, and made many of the old roadways either treacherous or impassable.
  7. The brain senses something is amiss — the inability to do things it used to do before is intensely distressing, and it doesn’t understand why things aren’t working. This confusion represents a “threat to one’s physical integrity” and the body reacts as though its very existence were being threatened. The cascade of stress hormones and fight-flight-freeze substances wash through, and the sympathetic nervous system is activated.
  8. Unfortunately, the incidents of confusion and disorientation and disrupted functioning aren’t intermittent. They can be regularly occurring — as well as unexpected. Time after time, the brain is surprised by its sudden (and unexplained) inability to do what it’s always done. Surprise sharpens the experience, making it both more intense and more indelible in the body and brain.
  9. The brain/mind interprets these inabilities as a problem with the self, and a chain reaction of personal recrimination starts up, which assigns more meaning to the events, which triggers further releases of adrenaline and cortisol into the system when the amygdala is tweaked by this interpretation.
  10. When cortisol and adrenaline are released, higher reasoning is impaired, and lessons which might be learned from trial-and-error are not retained. One misstep after another occurs… one screw-up after another… confusion compounding confusion… anxiety heightening anxiety. What was originally “just a bump on the head” elaborates into a full-scale debilitating condition which becomes more and more entrenched over the ensuing months, even years.
  11. Social pressure doesn’t help at all. Impairments to speech understanding (that happened to me) aren’t interpreted as symptoms of brain injury, rather as laziness or stupidity. Sensitivity to light or sound, which foster distractability and make holding a conversation difficult are not perceived, but the results — wandering attention and apparent oblivion to what others are saying — are obvious (and not at all appreciated).  Social pressure leads to increased stress, which in turn triggers the release of more chemicals that prevent the injured person from effectively learning new patterns and building new pathways in their brain.
  12. The brain is still trying to sort out what’s going on, and it’s not very communicative, either with others or with the “resident” in this body. It gets wrapped up in the drama of flawed interpretations of what’s going on, the crisis of stories it’s invented about what’s going on around it, and the increasing struggle to make sense of anything.
  13. Time passes, and things just seem to get worse. Self-esteem plunges, and resilience declines. Self-recrimination builds, and difficulties at work and at home erode the ecosystem of the impacted individual. Jobs are lost, relationships fail, and money seems to fly away for no apparent reason.
  14. If they’re lucky, the impacted individual can find help from a competent neuropsychologist, counselor, or neurologist — or even friends who are up to the task of helping them get back from the brink. If they’re like all too many traumatic brain injury survivors, they cannot get the help they need, and they end up becoming permanently unemployed (or sporadically employed), with no savings or source of income, no social support network, and no justification for going on disability or collecting insurance payouts.
  15. Muddling through, maybe they make it, maybe they don’t. Ultimately, many end up on the streets, in jail for behavior problems, or on medication for psychological disorders that mimic brain injury after-effects and carry lasting side-effects. And unfortunately, a number eventually commit suicide, hastening the process that an oblivious, uneducated society and tough-it-out culture sets in motion.

As you can see — assuming this progression is at least somewhat accurate (and I believe it is) — the impact of a head injury need not be severe, in order to lead to severe consequences.

To fully understand the pervasive effects of mild traumatic brain injury, you need to look at multiple systems — from the brain’s inner workings, to the autonomic nervous system, to the demands of adult living or childhood development, to the expectations of one’s surrounding social milieu. With mild TBI, it’s never just one issue that sends you down the dark road — it’s a million little, subtle, interrelated issues that combine to create a recipe for disaster that, like bread dough sitting near a hot wood stove, will inevitably begin to rise and expand.

Trauma and the body’s internal responses to perceived threat and our interpretation of those threats, is like yeast added to a sugar-water-flour mix of our injury. With enough heat and time, it’s going to double, triple, even quadruple (and more) the issues that initially come with mild traumatic brain injury. Unfortunately, it appears that our systems are designed to work that way, and unless we can figure out alternative ways to address the issues, we’re in for a rough ride… till we can find help, sort things out, or end up incarcerated or dead.

What strategies and approaches we can hope to employ in this trickiest of situations — which might actually work — is a topic for another post.