TBI SoS – Your life is a whole rehearsal…

… for the moment you are in now.

Thus spake dictionary.com, when I wandered over to look up a word. True, true, true.

And if all my life leading up to this moment is a rehearsal for this moment, then this moment is also a rehearsal for what’s coming later.  You can improve your brain matter at any age. You can prepare for any eventuality. I’m convinced of it. Of course, your preparation may not be adequate, or you may be preparing yourself to fail, by setting your sights on things far beyond your scope of ability — like taking up downhill race skiing at the age of 92, when osteoporosis and arthritis have set in. Discretion is the better part of valor, so why set yourself up?

I’m feeling a little like I left the TBI SoS series a bit abruptly. Things got busy. I flew across the country. I had other things I wanted to talk about. Distractability can be a real bitch, sometimes.  Anyway, the magical three steps I’ve identified for restoring my own sense of self are:

1. Understanding the nature of Self as an expression of an individual’s unique personal abilities.

2. The overt, conscious valuation of those abilities both by the individual and those around them.

3. The repeated practice of progressive abilities, all of which lead to further growth and improvements and expand the sense of Self beyond the limits it once had (even beyond the limits it sensed prior to the injury).

Which is to say, this thing we call our Self is specific and unique to us. It’s the part that’s unlike any others, but which makes it possible for us to connect with others. Those differences are not deficits. Not if we value them. And the overt, conscious, deliberate valuation of our differences, our abilities, is what helps us to get back to a place where we feel like ourselves again.

Indeed, if you consider that differences are what make us individuals, then the changes that take place in us after TBI aren’t necessarily deficits. Of course, if we look at them as losses (which to some extent they are) and get stuck in that loss, and we continue to try to get back what may be gone or changed for good, then we lose the chance to seek out new ways to be unique and individual.

One of the BIG problems I have with TBI rehab — based on reports from survivors as well as videos I’ve watched on YouTube — is the focus on accepting your deficits and resigning yourself to a life that is less than 100%. Less than 100% of what, exactly? How we were before? What we were before? That may be an accurate assessment, if you use your old life as a measure of your future prospects, but the minute we start doing that — basing our current value and self-assessments on an old, outworn mesaure — we hobble ourselves and our future.

Who among us ever remains the same throughout the duration of their life? Not a one. Who among us never changes, due to circumstances? Only someone who is stunted by fear or some sort of imbalance. Normal people change. We change all the time. After job changes. After life changes. After marriage, divorce, death, birth, and all those other life passages that we as humans participate in. Our bodies change over time. Our personalities change, as well. But all along, we remain who we are. And so long as we feel comfortable and fluid in our self-expression, we can be reasonably sure of who we are in the world.

It’s the dramatic life changes that turn us upside-down. Natural disasters that destroy our homes. War and pestilence that decimates our families. Sudden divorce. Unexpected deaths. TBI. All of these — and more — do their part to warp our sense of Self and make us strangers in our own skin.

See, here’s the thing (for me, at least). The tragedy of loss of Self is not so much about losing specific abilities or capabilities. It’s not about losing your balance or your hearing or your cool. The real loss comes from losing the sense of fluidity, the sense of mastery, your sense of beign a viable individual. It’s the loss of ease and grace that hammers us, not the loss of specific abilities. I would even suggest that even in the face of a substantial loss, if we have backup abilities that can come online to help us immediately — say, we become intensely sensitive to light and sound, but we soon learn to use sunglasses and noise-canceling earphones to protect our senses… or we suddenly have a piss-poor memory, but we’ve got a PDA that we constantly use and we’re already used to writing things down — that can soften the blow and keep us from disintegrating into a pile of quivering self-doubt.

It’s not the loss of specific ability that gets us. It’s the loss of confidence, and the loss of our sense that We are Alright, because we can handle whatever comes along, that does the damage.

And given that, if it’s the loss of the feel of grace and ease and mastery which undercuts our sense of who and what we are and defines our individuality, then hell yes, we can restore a sense of Self over time. Our renewed sense of Self comes from repeated actions, practiced actions, the over and over and over again that goes along with things we seek to do well.

These don’t even need to be big things. I can tell you in no uncertain terms, I have gained some of  my greatest wins and restored a considerable amount of confidence from seemingly stupid little steps that I mastered. Things like daily exercise. Things like being able to get through making my breakfast without melting down and messing up the kitchen. Things like being able to relax.

In my practice and mastery of those things, I found a solid footing I had lost in the aftermaths of my TBIs. Not just the most recent one in 2004, but all the others I’ve had, each of which took something from me that was a core value about myself. The cumulative effects have not been easy to to deal with. Far from it. But through the simplest of actions — making lists about what I needed to do each morning and following them until I had my routine down pat — I found my footing. Solid footing. And that set the stage for a level of comfort I had all but given up on.

And these small steps, these small ways I was able to restore my sense of mastery, also restored my sense of Self. Because in the midst of all the confusion and frustration and trial and error of my daily life, I was able to make good, solid starts to my days which set the stage with confidence and surety. Before I had my morning routine down pat, I started out every day steeped in the most caustic acid bath of self-doubt and insecurity. Before I figured out how to get my breakfast made without blowing up, I couldn’t get out the door and get on with my day in a sane frame of mind. But once I had the basics mastered, it set me up in a very good way for future success and future confidence. And even when everything at work was looking confusing and frustrating and not very promising, being able to go back to the basics and practice them with mastery, retracing my morning routine at night, and ending each day on a stable note, did wonders for my ability to cope and just get on with it.

No matter how small our actions, no matter how insignificant our new masteries may be, the fact that they are masteries, is what gives them potency. It’s what gives them power. They can be the “littlest things” — being able to brush our teeth, take a shower, and wash our hair every morning, being able to make breakfast in such a way that the coffee isn’t cold by the time the egg and toast are ready to eat. Or they can be more complex things — being able to control our emotions when confronted by the unexpected, to read a book or participate in a conversation, or to go on an extended business trip and participate fully in the experience without melting down. The main thing is how we participate and experience them. The main thing is not what we do, but how we feel.

That feeling of mastery, even if it’s related to a new activity or an old activity we’ve changed, is what restores us. And if we focus on that, rather than the specifics of what we’re doing and our judgments about them, we have a chance to increase the value of those things, and come to accept ourselves and our newfound ways more than ever.

Take, for example, someone who’s been hurt in an accident, and is unable to walk without braces and canes. I once knew someone like that — they’d fallen 100 floors in an elevator, and lived to tell the story. They could have given up and given in, but they turned their attention to other activities — ones that weren’t dependent on their legs to get by. They went from being an elevator inspector to being a stock market investor, and in the process they ended up much better off, financially, than they’d ever been before. Even with the stock market crash of 1987, they only lost a fraction of their holdings, because they were smart and didn’t get greedy. They couldn’t walk without canes, but they could drive a modified sportscar and they could certainly participate on other levels. I doubt they would have said falling 100 storeys in an elevator was the best thing that ever happened to them, but they made it work. They made their life work.

So, no matter how different we may end up, after TBI, there is always more about ourselves that we can discover. We can certainly stay stuck in our past, interpreting our every mistake as an indication that something is wrong with us, and we’re too damaged to get on with it. But the simple fact is, our brains are plastic. Our lives are plastic. We can shape and change them however we like – within reason, of course. Not a single one of us knows just how much we are capable of. And until we stop clinging to the past and decide to move on to the future, we cannot find out.

We’re all — TBI or otherwise — like shards of a broken vessel, that needs to be put back together again. Tikkun Olam is one way of saying it, I think. Repairing a broken world. Repairing our broken Selves. Restoring our whole Selves — and others — in the face of shattering circumstances, so that the light we all hold within ourselves can shine forth. When we see the light, instead of the broken pieces, and we find new ways to experience and express that light, how much more can we be, than just survivors of some terrible accident or fate?

Ultimately, all of this TBI SoS series is just a very long way of saying:

  • Our Selves are the collection of unique qualities we express with ease and grace.
  • Our sense of Self depends not only on our uniqueness, but on a sense of mastery and fluidity that comes with practice of those qualities.
  • When that sense of mastery is disrupted, our sense of Self is, too. We get lost. We lose ourselves in the newness of our reshaped brains.
  • Nevertheless, we can restore our Sense of Self by achieving mastery. These can be in small ways, or in large. But they should matter. They should have value for us and for others.
  • By practicing our mastery, day in and day out, we can build a foundation for our sense of Self that restores our own confidence on small but important scales, which then set the stage for later, more complex masteries.
  • Ultimately, we can find our way back to our Selves by expanding our definition of who we are and what we’re capable of doing. And we may just find that the new Self we inhabit has abilities and talents we never would have discovered, had we not been forced to.

All of us change over time, without exception. Welcoming the changes in our Selves and letting our Selves be made new again isn’t something to be feared. It’s something to be encouraged and valued. Fearing changes helps no one. Fearing differences just makes matters worse — for ourselves and others.

And in the end, it’s not so much what life sends our way, that determines our future and our comfort level with who we are, but what we do with those well-camouflaged gifts.

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

Head injury recovery – it’s sort of like rebuilding Haiti

Looking at my stats to see who’s reading this blog, and seeing how they found out about it, I often come across search engine terms that include the words “slow” and “concussion” in the same search phrase. No coincidence there. Slow can refer to your brain slowing down after concussion, as well as the length of time it takes to recover. “Slow” and “concussion” seem to go pretty well together.

As the news highlights both the perceived delays in the rebuilding of Haiti after their earthquake about a year ago, and the amazing recovery of Rep. Gabrielle Giffords, I have been thinking a fair amount about how the two situations might have things in common. I think, in particular, about how Rep. Giffords’ progress has been so amazing… beyond the hopes and dreams of just about anyone involved in her recovery. And I have to wonder – not out of spite, but out of compassion – if her progress will continue at this amazing pace. I also wonder if the people around her who have been so supportive and hopeful will stay that way, if her recovery should happen to slow… even appear to reverse… in the coming months and years.

I would never wish ill upon her or anyone else, but I have to wonder if the rate of her progress will last — and what might happen if it appears to slow. Surely, it would be amazing if it does, and I certainly hope it does. At the same time, however, I wonder if the folks around her — or who are rooting for her from afar — are prepared for the possibility that she might have a very long road to recovery ahead of her. Her husband has said that she will make a full recovery, and it will be wonderful if she does. But if things take longer than people expect, or she experiences setbacks (as so many of us do), what then?

And I think of Haiti — that already dreadfully impoverished nation that was to terribly hit by the earthquake last year. In the immediate aftermath, there was a huge outpouring of help and pledges for help from many, many people. Millions upon millions of dollars were promised, and work commenced. But now, a year later, many are wondering if there’s actually been any progress. And they’re wondering where the money went.

It’s a fair question. And it’s not uncommon. In times when disaster strikes, and there’s an immediate need for help, so many eagerly pitch in… then find themselves stymied by bureaucracy or unanticipated complications that could not have been forseen. They had such momentum at the start, and they were bound and determined to Make Progress, no matter what. The will was there, the spirit was there, the determination and dedication were there.

But then things get hung up, for whatever reason. And it’s human nature to start to question the progress you’ve been making, as well as the direction you’re taking. The things that seemed so clear at the outset, get gray and muddied and stop being so straightforward. It’s one thing, when disaster is fresh in everyone’s mind, and the stress hormones are working overtime to block out gray areas and a gazillion little details that the physical system deems “unimportant”. But when the initial shock wears off, and the whole system starts to right itself, all of a sudden, there are all these little details you’ve got to contend with… all these little pieces that need to be picked up… and nothing is simple and straightforward anymore.

With Haiti, we had an initial outpouring of grief and compassion and cooperation. An initial single-minded determination that We Will Rebuild! Then the donation controversies started, and the problems of gangs of former convicts roaming the streets, and women and girls being gang-raped by maurauding men, and money disappearing or never actually reaching Haiti proper, started to come to the fore. What an excruciatingly unholy mess. Wasn’t this supposed to be fixed by now? What happened to all that money and expertise? WTF?!

With TBI, there’s often an initial outpouring of love and concern from those who care about you (if they realize what’s going on). There’s the survivor’s innermost determination that I Will Rebuild! Nothing is going to hold you back. You can do this thing. YOU CAN DO THIS THING. Then the insurance money runs out. Or you hit a wall with your neuropsych. Or you can’t seem to keep up the enthusiasm for neuro rehab. And the physical problems — the headaches, the pain, the sensory issues, the fatigue — as well as the cognitive fog and the crazy mood swings just keep coming. Everyone else says you should be fine. Everyone else says you should be on the mend. But you don’t feel like it. No way, no how. You’ve lost yourself somewhere along the way, and you’ll be damned if you can find your way back.

I’m not saying that the circumstances of TBI survivors are necessarily the equivalent of the extreme and widespread needs of Haiti, but on a certain level there are similarities. The expectations that more progress would be made by now, the determination that has a way of waning over time, the human need to see things fixed much more quickly than they can be… on small scales and large, this seems to be our lot, when things go terribly, terribly wrong.

But just as rebuilding Haiti means doing more than just putting up houses and distributing food, so does TBI recovery involve more than healing up the bullet wound or getting out of rehab. Restoring Haiti involves rebuilding the government structures, restoring utilities, building roads that were destroyed, getting schools up and running again, and ultimately making the place safe for people to live their lives, go about their business and make a living. And recovering from TBI means much the same kinds of activities, though on a much smaller, more individual scale. In same cases, executive functioning needs to be sharpened and strengthened. In some cases, physical capabilities need to be fine-tuned, or coping/compensatory techniques need to be learned. In some cases, the brain’s infrastructure of electrical connections has been so disrupted, it’s like you’re careening down a dark road without any lights or any clear view of where you’re going (let alone managing how fast you’re moving). And then there’s the learning. The constant learning. And the behavior mangement and modifications required to make you safe to deal with by your friends, family, and co-workers.

… All of which takes a whole lot longer than you ever expect it to. And in some cases, you’re never done. The old connections in your brain that used to be so reliable… some of them may be gone for good, but even though you know it intellectually, your system, your person, your identity habitually goes back to trying to do things that the old connections made possible. And fails.

Which leaves everyone around you wondering why it’s taking you so damned long to get your act together. Are you just not trying? Are you being lazy? Are you just not applying yourself? Or are you faking it for the sake of sympathy?

Problems. Problems, indeed. All around.

That’s not to say that you can’t ever get to a level of functioning you’re happy with. Not at all. But chances are good, it will take a lot longer than you or anyone else ever expected. And there will be times when you and others will be standing there, tap-tap-tapping your toes, impatiently waiting for something to change for the better. Just like plenty of people are wondering why it’s taking so long to get Haiti back on its feet.

Doing to be

I got home late last night. “Late” being nearly 10 p.m. on a work night. Greeted like a returning hero of sorts.

I was back.

I did it.

Part of me thinks this shouldn’t be such a big deal, and a week-long business trip to an industry conference shouldn’t elicit praise and celebration. But part of me also knows that I did good work on this trip, I made good connections, and I made a positive difference in the world, in however small a way.

I was courteous to my colleagues in the convention center. I was kind to the poor on the streets. I was considerate of the hospitality staff, wherever I went. And I actually convinced professional peers who have been afraid of the folks in my department, that we are here to help, and their opinion matters.

I met with wary almost-strangers, and parted ways with new friends.

Actually, come to think of it, I think this should elicit praise and celebration.

Gandhi and Mother Teresa might have done more. Albert Schweitzer and Dorothy Day probably would have done more. But for where I was, and what I did, I did alright.

Best of all, I did no harm. Which is a far sight more than many people do. And I looked people in the eye when they talked to me. Unless, of course, they were culturally uncomfortable with that. In that case, I looked away. Didn’t intrude. Either way, it was fine.

Thinking back, I will say that I had some very dark hours, on that trip. There I was, 2000 miles from home, sleeping in a very uncomfortable bed, off my daily routine, surrounded by people who all seemed to know each other, some of whom couldn’t be bothered to give me the time of day and actually ditched me several times. Assholes. And they sit right across the hall from me at work.

What the hell was I doing there? I asked myself more than once, at the end of long days, when the fatigue caught up with me and I couldn’t muster enough mojo to feel much of anything about anything other than dread and depression. Start of the day –> mucho moxie. End of the day –> zip, nada, zilch. It’s a rough, rough ride, going from way-way up to way-way down in the space of 18 hours, with your joints aching and screaming, your lower back in knots, your neck and shoulders a mass of tender ropes, your head pounding non-stop… And doing it four nights running.

So, I did the only thing I could — I went out for long walks after convention hours, then went back to my room and drew a hot bath and soaked till the pain was eased, and I could sleep.

In those minutes, as I was debating whether to numb my pain with Advil or get my mind off it with a walk… fighting off that gut-wrenching loneliness that comes from talking to your Beloved (or a good friend) and hearing their voice and knowing they are a looooong plane ride away, and as good as their voice sounds, it’s nothing like having them There Beside You… god, that hurts.

But then the thought came to me that this was a valuable experience to have. For as painful and as awkward as things were for me, I was probably not alone. I was at a conference filled with thousands of people who were also far from home, and many of them may have felt exactly the same way — all by their lonesome in a strange place, without the ones they loved nearby. And there were the ones from other countries and other cultures, speaking a different language and eating different foods and interacting in ways other than what they were used to… for them it must have been even harder.

And so I used it. I used that feeling, that pain, that anguish. I “sat in it” as my therapist friends like to describe it. I marinated in it. I didn’t turn on the television, I didn’t listen to my iPod. I just sat with it and felt it and knew it was real… and knew that there were countless other people in the world around me who were feeling very much like me, right at that same moment.

And I took that feeling, that sense, that experience, and I did something with it. I carried it with me, as I went out into the world, attending sessions at this conference, meeting people and talking with them — both officially and just by-the-by. I took that sense of loneliness, that isolation, and I acted as though each person I ran into felt exactly that same way. And when I caught their eye – or they caught mine – my suspicions were confirmed. And they appreciated the smile. Or the handshake. Or the nod.

See, here’s the thing for me… I’ve got my issues. Who doesn’t? But when I take those issues, those pains, those sorrows, and I do something with them, they completely transform my experience. They turn me from a lonely heart looking for love in all the wrong places, to a human being offering other lonely hearts the kind of compassion and human connection you can’t often get in this techno-virtual world, where the most contact some people have with the rest of the world comes from a few hours spent on Facebook.

And as I simply went through the motions of being courteous and kind and considerate to everyone I met, doing the same sorts of things over and over — holding a door open, nodding hello, smiling and giving someone’s hand a firm shake — I felt like I was coming back to myself. Instead of staying lost in the malaise of my own isolation, when I put the focus on someone and something other than my own insecurity and loneliness, I found the isolation lifting, dissipating, fading to the background. It was always there, but it almost didn’t matter — except for the fact that it made me more aware of the isolation that others were probably feeling, every bit as much as myself.

And in that doing, I became something other than what I was in the silence of my hotel room. In that doing, I found a sort of redemption — not only for me, but for those others, as well. Perhaps even for the others whom those others encountered later on each day. Doing my part to not let my insecurity and self-consciousness get the better of me, turned me into a ‘pebble ambassador’ of sorts — toss me in the human pond and see what happens to the ripples.

The more I did it, the better I felt. And by the time I left, the anxiety and fear and self-conscious insecurity and loneliness had all but gone away. They were always there in the background, sure, but it almost didn’t matter… except to remind me how the rest of the world just might have been feeling — and perhaps even moreso than me.

 

I’m fading, now. Fading fast. Time to sleep. I’ve earned it.

Time to eat

About 10 years ago, I lost someone close to me under terrible circumstances. There’s nothing like to see a loved-one lying on a hospital bed with a plastic sheet over their cut-open innards, dangling between waking and not-waking, unable to go forward or backward, because the surgeon needs to go in again and try to re-do what they did wrong the first time.

I didn’t willingly eat for six months after they died. Food made me nauseous. I had no sense of taste, no sense of smell, no interest in food, no desire to consume anything. Not even coffee.

But I did.

Because I had a life to lead and rent and bills to pay, and eating regularly was the one part of my life that had a regular cadence.

So, I made myself eat. I can’t remember much about that time, other than that. Forcing myself to eat. Holding food up to my mouth and fighting back the nausea. Taking a bite and chewing. Doing lots of other things while I was eating — working, looking around, thinking about anything but food. Just to get my mind off it.

I’m at the airport, now, waiting to board my plane in another 45 minutes or so. I have time to get some food. I’m not hungry. I’ve been pushing and pushing for days, dog-tired and foggy and fuzzy, but valiantly pushing through. It felt dangerous a bunch of times, but I made it through, no less. Now I’m on my way back home, still tired, but still on alert, because I can’t afford to slack off now. Most car accidents happen within 5 miles of a person’s home. And I know myself — my brain locks up on me, when I’m nearly there. I get off at my turnpike exit, and I turn left instead of right. I find my way across town, then end up spending twice the time it took me to get there, to figure out how to finish the trip. I go shopping for Christmas presents at the mall — it takes me 15 minutes to shop, and 45 minutes to find my way out of the mall and back to my car.

I hope I can find my car when I get back to the airport. I parked in a rush and ran for my flight. Well, I have time. But I expect I’ll be tired after traveling for 12 hours.

Someone has left their sunglasses and GPS at the security checkpoint.

I’m not the only one who comes unglued when traveling. I am not alone. I am alert.

And now I must eat.

Work hard, play hard, and don’t forget to rest

A day into my week-long business trip, I’m getting my game-head on, thinking about how I’m going to play this week. The hotel where I’m staying has no coffee in the room, and I have to pay for internet connectivity, so I’m already improvising.

Hell, I started improvising yesterday. I got up when I was planning to and checked my flight, and a whole bunch of flights before it were canceled, due to bad weather conditions. I considered changing my plans, which the airline said I could do without penalty, but when I called the travel agent, they told me they didn’t know anything about that. It sounded like I had woken the agent up, too, which was a little annoying. It’s one thing to be woken up, but to cop an attitude and not be fully present on the job you’re paid to do… it happens, of course, but I wasn’t in the mood for it yesterday morning. So, after wasting 20 minutes dealing with that situation, I decided to just bite the bullet and head in. Traffic was surprisingly heavy for 6 a.m., and I barely made my flight. But I did make it.

Even so, the flight was delayed about 4 hours, for a variety of reasons. So, I took the opportunity to step away and find some breakfast, get myself a good cup of coffee, and catch up with myself. It wasn’t bad. I managed to sleep on the flight a little bit, and I made my connecting flight just fine. At the final destination, my luggage wasn’t on the plane, but fortunately it was on the next flight, so it only took 45 minutes or so to get that sorted. When all was said and done, I arrived at my hotel with a few hours of daylight left.

Last evening, I was fried. There was a group dinner that I attended, which was nice. But talk about loud. The restaurant we were in was very noisy. And there were lots of us at the table, so keeping track of everything going on was a challenge. I focused on my immediate surroundings and let other people do the talking. Fortunately, I was hanging out with the IT folks, who aren’t much for social chit-chat. They just want to get their jobs done. And there wasn’t a whole lot of witty banter going on. After, I headed back to the hotel with some folks, we headed off in the wrong direction, then I pointed us in the right direction, and we got back.

Today promises to be a better day, I think. I’m at my hotel, I have my appropriate gear and attire in proper order, I know where I need to go, and I know who to ask if I have any questions. It’s all good. I know I need to pace myself and save up energy for the day, which is full of networking and busy-ness, and just making things happen. A whirlwind tour, that to be honest has me a little concerned. I worry about not having enough energy to get through.

But the energy thing is something I can work with. I just need to make sure I eat properly and take time out to rest and breathe and gather myself. I wish it didn’t feel like an obstacle course, but it does. I should be happy and enthusiastic, and in a way I am — and once I get into the thick of things, I’m sure I will be even more. But it’s daunting.

One of the things that’s made it even more daunting,  is the head trip around this convention. It is a big deal, and it is quite the event, but the way people have been talking about it, it’s like it’s this monumental do-or-die situation. I know there is a lot riding on it, but I’m more comfortable settling in and buckling down and not talking a lot about how hard and challenging and overwhelming it will be. That just sets up this perception that it’s an ordeal to be endured and survived, rather than an energizing opportunity to learn and connect with people. That’s really the approach I’d like to take — a really positive, can-do type of mindset that sets me up for success, rather than failure.

Dwelling on the dread aspects of how hard this will be, isn’t particularly productive. It is also quite draining. I’m sure the people working on this have been increasingly tired, so their mood has gone south, but I just can’t go there with them. Not today. Not at all, in fact. If I start getting mired in the awfulness before this whole thing begins, and I let that tone take over, it’s going to be a looooooong week. And I haven’t come all this way to feel like crap.

So, I’ve done my morning exercises, stretched, and now I’m going to read and write a while before I go out looking for some coffee. I’ve looked at Google maps and have located a McDonalds within easy walking distance. It will be good to get out and stretch my legs. I’ll get my no-cheese-please Egg McMuffin and a medium coffee, and ease into my day. I’ll spend some time thinking through my day, planning it out, checking in with work a little bit, and just making sure I have everything in order, before I launch full-bore into everything.

And all along the way, I’ll be smart and pace myself. I plan to work hard and play hard, but I also plan to rest.

Life is good. It holds a lot of challenge and evil, but there’s plenty of good to be enjoyed.

And so I shall. With common sense and a good plan, I shall.

Hands down, one of the worst things about TBI

Fatigue… what a killer. It sucks the life out of you, beats you down, and how the hell can you escape it? You can’t. You try to sleep, but even with a good night’s rest, if you do anything even remotely approaching what you used to be able to do, you end up exhausted, dense, foggy, and about half the person you used to be. And that sucks.

Now, I really don’t want to start out the day on a complaining note, so I’ll change my tune for a little bit. I’m actually keenly aware, this morning, of how fortunate I am. Of all the thousands and thousands of people who experience TBI — especially “mild” TBI — and have their lives wrecked for no apparent reason (as far as anyone else can tell), I’ve been extraordinarily blessed to have gotten the help I needed, when I needed it. Okay, so, sometimes I got the help long after I really needed it, but I haven’t had my life irreversibly trashed. I came close, but I got lucky.

Times like this, I can’t afford to lose sight of that fact — how lucky I’ve been. Granted, luck doesn’t go far, if you’re not prepared to do something with it, but I have gotten some fortunate breaks along the way.

Anyway, here I sit, first thing in the morning before going off to work for my last day in the office for about a week. I’ve got another business trip coming up — this one is twice as long as the last one. I’m really looking forward to it, although it promises to be very tiring.

And I’m a little worried. Because tiring can mean trouble for me. And I’m going to need to be “on” all week. Ordinarily, I would be excited — I’m going to a city where I’ve never been before, and apparently there are lots of great sights around to see. Heck, I might even have an adventure or two. But I’ve been tired, and it bothers me. I’ve been really tired. That REALLY bothers me.

I don’t know what’s worse — being tired, or being concerned about being tired. Being concerned, of course, doesn’t help — it tires me out even more. That whole cognitive load business, and all… And when I’m tired from being concerned, it becomes this vicious downward cycle that propels me towards eating junk food, cheap carbs, and doing things to pump myself up that actually make me more tired, as I go along.

Hands down, the worst thing about TBI is the fatigue. I’ve been thinking and writing about sense of self, lately, and it occurs to me this morning that few things impact my sense of self like fatigue. I feel slower — I probably AM slower — I feel “off” and a little sick, and I have to really work at keeping up with the flurry of activity going on all around me. I’m not sure anyone else notices, but I’ve been spending an awful lot of time winging it… doing a damned good impression of understanding what people are saying to me, but not following exactly. I’ve also gotten lax about asking for clarification, which isn’t good. Things have been so busy at work, lately, I haven’t had the time to slow things down. Everyobody wants to move and a much more brisk clip than I’d like, so I fly by the seat of my pants a lot. And that’s exhausting.

I started out this week feeling good. I didn’t nap as much as I wanted to, over the weekend, but it turned out okay. Monday morning, I felt great and was ready to roll. But as the days have gone on, and I’ve been busy, busy, busy, I’ve gotten progressively more tired. And I’ve gotten progressively more foggy, which totally sucks.

Last night, I got almost two hours less sleep than I needed/intended to get, and I’m feeling it this morning. I’m doing things like getting turned around with doing my exercises and fixing my breakfast. On the bright side, I’ve learned how to not beat myself up over messing up little things. That’s not a big problem for me anymore, so that’s helped me a great deal in starting out the day right. But it is a little dismaying, to get basic movements confused — going through the different movements of my morning exercises, and finding I’ve turned in such a way that I can’t move — I’m supposed to lift my leg to the left, but I’ve turned my left side to the wall.

D’oh.

Aaaaah, well. So what? Big deal. Life goes on. You just turn around and move in the opposite direction. And try not to blow it out of proportion.

But geez — aside from (in addition to) that, I feel reallydopey this morning. Like I’ve been drugged. On Benadryl. Except I’m not on anything other than fatigue. I guess I’m probably no worse off than anyone else out there who’s working three jobs, has kids to raise, and a home and car to keep up, but I’m not fond of the feeling. And I’m worried about this business trip, if I’m really tired.

Okay, time to get it together… gotta get ready for work soon… I’m going on a trip across the country to work at a big event for my work. It’s not going to be a vacation, rather a ton of work. And it promises to be both exciting and very tiring. I would prefer that things were a little less frenetic, a little less pressure-driven. But they’re not, so there it is. I’ve just got to get my head around this.

Ugh… I’m worried. But I have to stop it. Stop it now. Maybe I won’t be able to get fully rested, during this trip. Maybe I will be running on adrenaline all week. Maybe I will be over-taxed and over-tired for the duration. But I can’t let that get me down. I just need to set that expectation, and find coping mechanisms I can fall back on. Like:

  • Make sure I eat right — and eat enough — to keep a good level of energy. Eat lots of healthy foods, not a bunch of junk.
  • Take time-out now and then to just relax and breathe. Maybe do a little mindfulness meditation work, here and there. I know there will be times when I’ll be sitting for extended periods, so I can use that time to just relax.
  • Connect with the people around me to keep in the loop and remember what I’m supposed to be doing. I’m concerned about losing track of what I’m supposed to do, so if I just keep in contact with people around me, that can help.
  • Stretch and breathe before going to sleep. This really helps me relax and gets me mentally prepped for sleeping, so I can get good rest.
  • Take my earplugs and eye mask so I can sleep through.
  • Remember that I’ll be home soon, and I’ll be able to sleep in another week and a half.
  • Pace myself — don’t try to do everything all at once. Give myself time before I launch into each day to check in with myself and see where I’m at.
  • Plan things out. I’ve printed out my schedule for the week, and I’ll have that with me, to track what all I’m supposed to be doing.
  • Prepare, prepare, prepare. Get myself all geared up and packed ahead of time. I’ve already collected most of what I need for my trip. I just need to pack my carry-on tonight, and set all the alarm clocks in my house on extra-loud, so I can get to the airport first thing in the morning (it’s an early flight).
  • Don’t take on too much. Don’t expect myself to do it all, and don’t put pressure on myself to do it all.
  • Ask for help when I need it. If I get into a jam, ask someone to give me a hand with something.
  • Remember to breathe. Keep the oxygen flowing through my system, so I have plenty of fuel to keep going. I’ve read that 15 minutes of focused progressive relaxation is the equivalent of half an hour of sleep. Gotta keep that in mind.
  • Go with the flow. Follow others’ leads, and let them do most of the talking and directing, when it comes to getting things done.
  • Remember, I’ve done this before. I’ve worked at events like this in the past, and despite the deep concern of everyone around me, that things go exactly right, the fact of the matter is, this is very familiar territory for me, and it’s going to be fine, just fine.
  • Enjoy myself. Take in what I can, and leave the things that vex me on the sidelines. Life’s too short to lose it over something that’s actually a good experience.

All that being said, it’s time for me to get going. Onward. I’m sure it will be fine, whether I’m tired or not.

TBI SoS – Restoring a Sense of Self After Traumatic Brain Injury – How Can We Get Our Selves Back?

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

Good question. Some might say restoring the sense of Self is a mysterious process that nobody fully understands, but I think it’s worth exploring. I have seen a really marked improvement in my own sense of self over the past five years, and about six months ago, I found myself actually thinking aloud that “I feel like I’m getting myself back.”

This was never an expressed goal of my neuropsychological rehab, and indeed the times I’ve raised the question of Self with my neuropsych, they didn’t seem very interested in exploring it. Still, when I announced that I was starting to feel like my own self again, they seemed pleased with this apparently coincidental by-product of our rehab work together.

But I don’t think that the restoration of the Self needs to be a coincidence, a happy accident that just happens by chance for no apparent reason. I believe that the Self can be — and is — restored (or rehabbed) through specific actions and specific approaches which are no less practical in their improvements in the “gray areas” of the life of the Self, than say physical exercises are for the strengthening of atrophied muscles.

I believe that restoring the Self results from the following understandings and actions:

1. Understanding the nature of Self as an expression of an individual’s unique personal abilities.

2. The overt, conscious valuation of those abilities both by the individual and those around them.

3. The repeated practice of progressive abilities, all of which lead to further growth and improvements and expand the sense of Self beyond the limits it once had (even beyond the limits it sensed prior to the injury).


Here’s how I understand all of this more in-depth:

1. Understanding the nature of Self as an expression of an individual’s unique personal abilities.

Each of us has certain abilities and activities that we do uniquely well, which make us distinct and whole persons in the world. It’s important to emphasize that while old abilities may have been altered or damaged by injury, the world is an awfully big place, and the human spirit is a profoundly powerful force, and it’s entirely possible to find other areas to gain mastery, which may not have been noticed or valued before. It needs to be understood that one’s sense of Self can indeed be restored through action and intention.

Now, along with regard for the depth and breadth of possibilities that life and the world offer, it’s also vital to understand just how devastating it can be for someone to lose their former abilities. It’s of paramount importance to understand the extent to which a person can be derailed by something as simple as not being able to butter a piece of toast without it ending up on the kitchen floor. Our Selves are elaborate and intricate, and our sense of loss and disorientation may be “wildly disproportionate” to the perceived importance of the lost skill. It’s vital to not underestimate or dismiss the impact that lost abilities can have on a person’s sense of Who They Are in the world and the role they can play in life at large.

2. The overt, conscious valuation of all forms of ability both by the individual and those around them, and treating the restoration process as an ongoing, often challenging, way of life, rather than a set group of steps that will end in time.

Once you understand what you’ve lost and why it matters that it’s gone, you can start taking steps to turn it all around. But it can be slow going, at first. It’s important to recognize the little abilities that come with repeated practice, and every little bit of progress matters. It’s easy to tell someone that their improved performance at holding a butter knife is a great thing, but to someone who used to be able to do it with no problem, it sure as hell doesn’t feel that way. Progress needs to be put in some kind of believeable context, so that recoverers don’t feel like they’re being condescended to. Self-assessment is notoriously difficult for TBI survivors, but it’s an ability that needs to be cultivated, so they can truly appreciate their progress — and continue with the work that’s required. Masteries can be large or small, but they should be measurable and they should have realistic, believeable importance attached to them for the person in recovery.

Now, some abilities may actually already exist, only the survivor didn’t recognize them before. Skills and abilities that were taken for granted prior to the injury, may suddenly come front and center, as the recovery process proceeds. And these latent talents and gifts should be recognized and valued at every turn as evidence that there’s more to the Self than what was lost. These gifts may be used to restore fluidity in injured areas (such as a talent for thoughtful regard being recruited to create a mindful environment while getting ready for work in the morning, so that the toast stays on the plate as it’s being buttered). They may also be strengthened in their own right, essentially “fleshing out” the recoverer’s sense of who they are, in a new and expanded light.

This recognition of the recoverer having more talents than what they lost to the injury could turn out to be an important foundation for the continuous work of recovery. Not everyone “bounces back” from TBI in short order, and there are many accounts of the process taking a lot longer than anyone expected, with small progresses being found at unexpected intervals, sometimes many years post-injury. Recognizing and focusing on already extant talents and abilities and valuing them for the Self-hood that they grant to the recoverer, can be vital to their ongoing work ethic and determination to persevere. It can help everyone see that not everything has been lost, and in fact some unforeseen circumstances (like the sudden discovery of a hidden talent) can work in your favor. With TBI, uncertainty is often a constant companion — finding a way to make peace with some forms of uncertainty can be truly good for the soul.

3. The repeated practice of progressive abilities, all of which lead to further growth and improvements and expand the sense of Self beyond the limits it once had (even beyond the limits it sensed prior to the injury).

Once we recognize the nature of the Self, appreciate the impact of lost skills and talents, and learn to value both the hidden talents we discover as well as our steps of progress along the way, we can go about the lifelong business of taking repeated steps to achieve competency in certain areas of our lives. These areas can be as small and seemingly insignificant as figuring out how to butter a piece of toast without having it end up on the kitchen floor. Or they can be as broad as being able to interview for a better job and improve your lot in life. Whatever the scope, by constant practice and mindful application of our lessons, we can embark on achieving fluidity in activities that once stymied us. We can start to regain that sense of wholeness, that sense of mastery, that TBI ripped from our grasp without warning.

We can get our Selves back.

For example, one of the biggest steps back to feeling like myself, came when I managed to get through my morning preparations without melting down in a pile of steaming emotional wreckage. I had struggled for years with just the basics of getting out of bed, doing my morning personal care, getting downstairs, and feeding both the pet and myself. I could never figure out why I always ended up an emotional mess before I even got out the door in the morning. A host of sensory issues, balance issues, and the way I responded to my clumsiness and absent-mindedness, all contributed to my difficulties, and at times it seemed as though things would never change. I would always be doomed to never having a good morning.

But through persistence and repeated attempts, I managed to turn this around. Through the systematic use of lists to keep myself on track, changing some parts of my diet to cut down on allergic reactions (especially to dairy), as well as rethinking my reactions to my clumsiness and disorientation, I was able to create a morning routine for myself that was both mindful and increasingly fluid. The better I got at getting through the morning without melting down and beating myself up and feeling like crap, the more ability I gained, the more smoothly I was able to do the things I needed to do. And as my ability increased, my sense of Self began to return.

And with that foundation, that series of lessons about how I can plan for and take action on things that matter to me, I was able to branch out further into other areas, use the same techniques for improvement, and work my way back from a place of cowering in a corner, lashing out at anyone who approached me with the intention of helping, and disqualifying myself from participating in the world around me.

Once upon a time, I couldn’t even get my breakfast and get dressed for work without hurting everyone who came within reach of me. But with time and practice, that completely turned around, and now it’s all but a non-issue for me.

And I feel more like mySelf again.

Where had my Self gotten to, in all this? My Self got lost in the most basic of places — in the way I got into my day, in the ways in which I interacted with myself and the people around me. It got lost when I got swamped in minutiae and lost track of my emotional state. But in changing the way I got into my day — turning it into a mindful and thoughtful routine each moring — I found my Self again. I found it in my improved ability to plan and carry out my morning routine. I found it in my improved ability to interact with my spouse each morning without shutting them out, or barking and yelling at them. I found it in the increasingly fluid ability to just get up in the morning, eat, shower, dress, and get on the road to work.

Out of mastering that seemingly simple process, I was able to build on the rest of my day, applying the same mindset and thoughtfulness to my other activities. It’s led me to a deeper understanding of myself, a deeper connection with others, and a broader and more profound use of my skills and abilities in the world.

I don’t feel like my old Self, but I do feel more like my own Self again.

This ends the seventh 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…

The problem with concussion awareness

I’ve been thinking a whole lot about concussion awareness, over the past weeks. I’ve been checking out a great concussion blog, thinking about all the athletes (and other folks) who are getting injured, who may not be certain about their future prospects in life.

There has been a lot of press about CTE – Chronic Traumatic Encephelopathy – which is chilling stuff, if you consider how invisible it is, and how it can set in on even those who seem “too young” to sustain brain damage.

What worries me about these kinds of reports and this heightened awareness, is that it could easily escalate to a kind of paranoia, with parents keeping their kids “safe” by enforcing so much inactivity and such stringent requirements for avoiding injury, that it freaks everyone out and keeps kids from having the kinds of fulfilling athletic experiences that so many of us enjoyed.

Now, obviously, nobody wants to advocate putting kids in harm’s way, and there are too many people coaching who either have that old ‘suck it up’ attitude, or just treat head injuries as a regular part of everyday life (perhaps because it was for them — note to self: take the “safe play” advice of an old-school football coach who has had his share of head injuries with a grain of salt). Since concussions are pretty much unavoidable, from where I’m sitting, so what do we do about it all, once it happens?

Well, first, I recommend that we find ways for athletes (and others who have been injured) to develop greater meaning in their lives beyond the activities that can get them hurt. Surely, there’s more to life than chasing a ball up and down the field and colliding with other players. It’s fun while it lasts, but there’s so much more to life.

Second, I think it would be good to focus on the ability of the brain to recover and rehabilitate — to rewire. Just knowing that things can change for the better, despite injury, might help the general public deal more constructively with the topic.

Most of all, I believe that education about the brain is critical… because we have to know HOW to rewire. We have to understand the unique needs of the brain after an injury, and understand what it takes to support it in getting back online. We also need to do away with the idea that once you’ve reached a certain level in life, that’s it. Be it a level of recovery or a level of functionality (before or after the injury), the degree to which we’ve developed in the past shouldn’t keep us from recovering and changing for the better in the future.

We need to widen our definition of “normal” to include variations in behavior and ability, without making them out to be disasters. We need to broaden our acceptance of differences, both before and after injuries, and quit expecting people to be exactly the same after a head injury as they were before — and quit treating differences like deficits.

A big problem with TBI recovery, from where I’m sitting, is inflexibility. Especially with people around the survivor. So the injured person can’t walk and talk exactly like they did before… So what? So the injured person takes a little longer to think about things, and they get tired more easily. So what? Big deal. But people make a big deal out of it, because it’s different. And “different” can be scary, so they react out of fear, instead of understanding and patience.

The intolerance and judgmentality and inability to accept differences is, to me, the biggest impediment to recovery. And when recovery prospects are not as rosy as everyone would like, that leads to fear… which leads to people making decisions that are either paranoid or in denial of the potential seriousness of a head injury… and can also affect someone’s recovery after an injury. None of the above routes is healthy.

Now, don’t get me wrong. I truly applaud the work of people who are raising awareness about the seriousness of concussion, head injury, etc. What I would like to see happen now, is the extension of the discussion to include recovery — in a way that both acknowledges the challenges and difficulties, gives hope through acceptance and understanding, and allows for the possibility of recovery beyond even the most informed expectations.

TBI SoS – What the self does to us…

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

Beyond acting out and behavioral challenges, there’s another way that an impacted sense of self  can affect you after TBI, and it’s very much internal. It’s the constant nagging voice in the back of your head that’s always whispering (or yelling) about how you got this ‘wrong’ or that ‘wrong’… how you screwed this or that up, and you’ll never get it right.

When you’re accustomed to doing things a certain way — thinking at a certain speed or able to perform at a certain level — if that is affected (or goes away), it can feel like everything is wrong. Wrong, all wrong. And it can set you up for a constant stream of nagging insecurity that puts you on edge, pumps you full of stress hormones, and drives you with a seemingly insatiable urge to GET IT RIGHT.

Even if what you’re doing isn’t technically wrong, still, a part of you thinks it is. Because you’re used to doing things a certain way. And anything different from what you’re used to — even if the differences are small — feels foreign and threatening. In a very real sense, our very individuality is threatened, since the person we think we are no long seems to be around. And if we aren’t the person we thought we were, well, who are we?

I suspect this is even more pronounced with people who have sustained TBIs later in life, when their habits are set and they are accustomed to having a certain type of personality. With someone like me, who has experienced a number of concussions / mild traumatic brain injuries over the course of my life, I’ve been forced to evolve my understanding of myself so often, I’m sometimes not sure exactly who I am. (But that doesn’t stop me from living my life.) I try to stay flexible. It works for me.

But still, having results for your customary actions turn out different from what you expect, time after time… having your internal experience not match what you expect, over and over… expecting your brain to think one thing and then having it think something different, from day to day, gets to be a drain. Who are you, anyway?

Without a familiar sense of self, that nagging sense of uncertainty can really do a job on you. It can make you paranoid, hyper-sensitive and hyper-vigilant, and it can disrupt your sleeping patterns, which is about the last thing you want. Lack of sleep just makes everything worse, and so the worry about being somehow wrong or damaged feeds into the regular messages we get about ourselves, making relative small problems into huge deals — largely because of our interpretation of and reaction to them.

[aside]… Speaking of disrupted sleep patterns, I could use some more rest myself. Time for a nap to take the edge off this fatigue and hopefully cut the pain.

This ends the sixth 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…

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.

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…