How severe was my injury when I was 8?

My parents are coming to visit me next weekend,and I’ve been thinking a lot about my earlier injuries and how they affected my childhood. How they affected my development, how they affected my interactions with people, how they affected my future. When I was seven, I fell down a flight of stairs and was very dazed and confused and wasn’t able to talk. And when I was eight, I was hit in the head with a rock and knocked out for a while. (I tell that story here.)

In the ensuing years of my childhood and youth, I had more injuries — concussions and falls. It was not uncommon for me, while playing, to fall hard and/or hit my head and get up a little dazed and confused… but keep playing. Just keep playing.

Now, concussions alone could account for a lot of the problems I had when I was a kid — problems understanding what people were saying to me, problems with distractability, problems with temper outbursts, problems with getting really turned around and confused… lots and lots of mood and behavioral problems that my parents handled with faith and prayer and lots of structure, rather than pharmaceuticals.

In retrospect, I think it really helped, when I was young.  The structure gave me a framework to live within, the faith gave me something bigger to hang onto, and prayer offered me a way to ask for help from a Higher Power when I couldn’t find the words or the means to ask for it from human beings. It was a pretty exacting way to live, though. My family was very religious, and my parents were very strict (at that time) about what was permitted and what was not… what was sinful and “worldly” and what they considered pleasing to the Lord.

But while that faith and prayer gave me a much-needed support system when I was young, when I entered my teen years, it backfired. As I grew older, I still had a hard time, cognitively and behaviorally speaking. The problem was, I wasn’t just having troubles at home, I was having troubles out in the world. Teen years are marked by increasing social activities outside the home, and I just didn’t do a very good job of handling myself. I was alternately shy… and openly rebellious. I was alternately a high achiever and a slacking ne’er do well. I did a lot of good and helpful things in my youth, including saving an elderly lady who was trapped when the open door of her car (it was not in park) rolled and pinned her leg to a very large object (I can’t remember what it was, but she was pinned, and the metal of the door cut into her leg — I can still recall the sight of the inside of her fleshy thigh cut open — I guess my brain selectively records images). But I also sold drugs and bought liquor underage and distributed it to friends. I wasn’t a big-time criminal, but my later youth was marked by a lot of the warning-sign activities of criminals in the making.

Jekyll and Hyde… or head injury? Given the number of injuries I’ve had over the years, and the fact that a lot of my rebellious and “alternative” behavior was directly connected with an internal storm of confusion and agitation and rage that never disappeared, only subsided a little, I think the latter applies.

Okay, so all that being said, I have been wondering a lot, lately, just how severely I was injured when I was 8. I was knocked out with a rock thrown by some kids who didn’t like my looks and had been taunting and teasing me and my sibling from a distance. We didn’t respond, and they started to throw rocks. My sibling wanted to leave, but I said “NO, we’re staying right here.” I still feel awful about it; they could have been injured, instead of me. But I was hard-headed and stubborn, and I didn’t want anyone to chase me away from doing what I was doing.

Anyway, after a number of rocks landed closer and closer to us, one clocked me on the head. I recall feeling a dull-sharp impact and thinking, “What was that…?” and then I went down.

The next thing I remember, I was looking up and my sibling was hovering over me, crying, with tears streaming down their face. I was woozy and wobbly and at first I wanted to stay and keep playing, but they were so upset, I realized I couldn’t keep us there. I was also not feeling so great, and they led me home to my parents, who had me lie down on the couch while they called a friend who was a nurse, to find out what to do. I didn’t want to do what they told me to — I didn’t want to lie down, I didn’t want to hold still, I wanted to either get up and move around or go to sleep. I remember trying to sleep, but they kept me awake. I seem to recall being really tired, but also kind of punchy and agitated and restless. Eventually, as I recall, after checking my eyes with a flashlight a number of times, they let me get up and move around. And my life went on.

When I think back on that time, it seems to me that it was a pretty serious deal – but I’m not sure how aware of it my parents were.  Or anyone was, for that matter. And when I think back, I honestly can’t say how long I was knocked out for. I might have been out for a few seconds, a few minutes, even an hour or more. It’s impossible to say. My sibling can’t recall the event clearly, so I can only guess at how long it was.

And up till recently, I’ve been thinking I was out cold for a relatively short time. But it could have been longer. I can’t recall the kids who attacked us being in the field when I came to — I can’t recall how the light of the day was, and I’m not sure if my parents were concerned about my sibling and me being out longer than we should have been.

But to be accurate, there is a chance that I was knocked out for longer than a few minutes. It could have been much longer. And from what I understand, the length of unconciousness is an indicator of the severity of an injury, which can also be an indicator of long-term problems. Given the level of difficulty I had when I was a kid — particularly during and after 3rd grade… from that point on, life was one big obstacle course for me — I have to wonder if maybe I wasn’t injured worse than I thought I have been thinking I was.

I need to do some more research on this… It could be a good thing to learn. And I think it might help me talk to my parents about my childhood. Because despite learning a lot and putting a lot of things together over the past year and a half, I haven’t yet discussed my TBIs with them. I haven’t discussed them with anyone in my family. But next weekend, I think that’s going to change.

Figuring out how to talk to my parents about my childhood TBIs is actually one of the big action items on my plate, these days (in addition to working like a mad person to keep my job and keep up with my work… organizing my study in a way that helps me, not hinders me… clearing out old files and projects that were artifacts of TBI-induced agitation, rather than being something that would ever bear fruit… and tending to my marriage and home life). My folks have been saying for years that they can’t figure out what they did wrong to make me so unhappy when I was little. They can’t  figure out why I took so many wrong turns.  They can’t understand why I was so angry and rammy and difficult — what did they do wrong?

I have to tell them, it wasn’t them that caused the bulk of my many issues. It was TBIs. Getting hit on the head. Hard. And at an early enough age that it sheared and skewed the connections in my developing brain so it couldn’t develop “normally,” no matter what they tried. I have to tell them it wasn’t all their fault, and that all things considered, they actually helped more than they hurt.

For all their flaws, for all the things they might have done differently, my parents did create a home where I was able to develop habits of self-inspection and introspective reflection. They created a very structured and well-organized environment in which I could safely do things like paint and draw and write stories and express myself and learn things and be my own unique (and sometimes very weird) self. Certainly, it might have been helpful, if they had taken my shortcomings into consideration more and not overwhelmed me constantly with so much friggin’ input (my mother has always been a manic force of nature, God love her). But the fact that I’m still here, still standing, still able to keep motoring on, despite pain and agitation and confusion and generally feeling like I live my life in the dark and have to just bumble/stumble through a lot of things the first time, before I figure out how the heck to do stuff… Well, I have my parents to thank for that.

Even if my TBI at age 8 was more than mild — even if it was moderate — they raised me in a way that made it possible to keep going, keep moving, keep making my life the best that it could be.

And for that I am eternally grateful.

Now, I have to figure out a way to tell them, when they come to visit. I don’t think I could live with myself if I didn’t.

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All new me… all the time…

I have been contemplating my situation as an MTBI survivor pretty intensely, lately. Thinking about how it’s changed my brain — not only since 2004, when I fell down a flight of stairs and smacked the back of my head hard a number of times on the steps… but throughout my entire life. After all, I have had a wide array of injuries — I got knocked out, I’ve had several sports concussions, I’ve been in car accidents, and I’ve had other falls.

Head injury has undoubtedly affected my life, and until a few years ago, I had no idea that the problems I’d always had (but never wanted to own up to) were in fact of a common kind and traceable to common reasons — mild traumatic brain injuries.

The more I realize just how much MTBI has affected me, the more I realize that I really need to re-learn how to walk through the world. Not just because of my most recent accident, but because of a lifetime of TBI-related changes to my cognitive-behavioral version of reality. I need to seriously back it up and rethinking just about everything I assume to be true… because so much of it has been shaped by TBI and clouded by a broken brain… and now I have tools — the Give Back Orlando material as well as other info and tools I’ve come across — to repair some of the damage and renew my life.

Some of the repairs are relatively small – like just changing around some of the things I do when I get up in the a.m. Others are larger, like changing direction with my work and being more realistic about my abilities and inclinations. But the bottom line is, I really need to rethink many of the aspects of my life and not take everything for granted, all the time.

The habits of thought and action I have become accustomed to, may be working against me. I know many of them are. So, I need to fix that.

I’ve recently reached the conclusion that MTBI, as “mild” as it may be, has significantly skewed my perception and interpretation of the world around me and it has effectively caused me to live in a different version of reality than lots of other people. Many situations in my life, I now believe, may have been very different from how I perceived them, which has caused me to grow up with inaccurate understandings of others and my place in the world.

Let me explain — I have always had a heck of a time interpreting people’s social cues. I don’t always understand how to make conversation (correction — I very rarely understand how to make conversation) and I don’t always understand what people are saying to me. This has happened for as long as I can remember. It’s also a point of frustration for people, that I don’t communicate as well as they apparently expect me to (while talking, not when writing – one of the reasons I write so enthusiastically is that conversation and spoken communication is such a bear of an undertaking for me).

When I was growing up I was constantly getting things turned around, and people would lose patience with me. They would raise their voices at me — to get my attention or out of mounting frustration. And I would often startle, because I had trouble following what was going on. I’d then get that rush of adrenaline and heart-pounding and all of that uproar in my head and body that told me “You’re in trouble — they’re mad at you, and they’re yelling at you because you’re a bad person.” I thought I was in trouble — that people hated me. That they didn’t like me. That I was being bad and awful and problematic.

But actually, in some cases, they were just trying to get my attention, and they did it in ways that were less gentle than they could be.

This happened over and over and over again. And over the years, when I was a kid, I developed this godawful complex about  being a terrible person, an ogre, a monster… you name it. I was convinced that everyone hated me — teachers, parents, other kids. A lot of them were unkind to me, especially my peers, but my assumptions about being bad and always being in trouble may not have actually been true.

So, I ended up with a variety of complexes and a nagging suspicion that I was good for nothing and just a drain and a chore for everyone to deal with… when actually, I just had a hard time keeping up, nobody realized it, and they did a clumsy job of bringing me up to speed.

In many ways, I think that my MTBIs had a negative impact on my mental health. Depression and PTSD and low self-esteem have all hounded me my entire life, along with a bunch of other conditions that could be in the DSM-IV, but I’m not looking up for the sake of time. I also don’t want to know. Heck, I’m reasonably functional in basic ways… why belabor it with mental health diagnoses? 😉

One of the other byproducts of this cognitive skewing is that some of my greatest skills and talents have been systematically overlooked and underdeveloped by not only the world, but also myself.

That anosognosia business (not knowing what you don’t know) has complicated my life by diverting so very much of my energy into trying to smooth over and patch up my foibles in the areas where I don’t excel (but didn’t realize it), meanwhile diverting so very much of my energy away from the areas where I have the greatest strengths. 

What a waste. All my life, I’ve been trying to make up for what I lacked, which in many cases just isn’t coming back, and in the meanwhile I’ve neglected the areas where I am strongest… thinking I need to be at least 75% all across the board, instead of allowing myself to be at 30% in some areas, while being at 99% in others.

That deliberate focus on making up for deficits at the expense of raw talent is how people dealt with special needs kids when I was growing up — trying like crazy to get them moderately functional where they were weakest and most struggling… all the while neglecting the areas where they/we were highly, highly, almost eerily functional.

Missed opportunities for the sake of common denominators.  For the sake of my sanity, I just can’t contemplate what that’s cost me…

So, now I’m going to do something about it. Because I can. Because I’m entitled. I have a right to do everything in my power to make the most of the abilities I have, while letting the less-strong areas just be. I have a right to tend to myself and gather all the knowledge I can. Even if  I’m not highly educated in a traditional sense, with all the degrees and the certifications and whatnot, I can be highly educated in a personal, modern sense. There is so much great information out there, and I have a knack for reading and digesting things over time — all the while making use of them.*

*Indeed, one of the things I love about the Give Back Orlando material is that it’s geared for self-therapy, and it never tells you “You’re just a peon without a Ph.D — what do you know!”  Dr. Schutz actually tells us what books we can read, and where we can turn for answers, which is truly amazing in the highly (almost rabidly) territorial intellectual property driven world we currently inhabit.

I’ve got my notebooks, I’ve got my library card, I’ve got my file folders and my lists of issues I need to address. I’m paying attention to myself at a much deeper level than ever before, and I’m determined to work at it as best I can, so I can overcome what’s standing in my way. I’m not just going to roll over, saying, “Oh, well, I got hit on the head a lot over the course of my life, so I guess that disqualifies me from living!”

It’s not about that, with me. Hell no! It’s about taking an objective look at what in my thought processes and behavioral patterns needs fixing – and then fixing it as best I can.

Or compensating for it.

Or avoiding situations that play to the parts of me that can’t be fixed.

I have sustained multiple mild traumatic brain injuries over the course of my life. These injuries have altered my perceptions of life around me and fostered erroneous deductions that have led to poor choices and bad behavior. They have also stoked mental health issues that have their root not in what was done to me or what happened to me, but how I thought about what took place in my life. I am a grown-up individual in my mid-40s who cannot afford to harbor erroneous thinking and poorly constructed patterns any longer.

So, I’m going to do something about it. I’m changing my life, one day at a time. One minute at a time. One experience at a time.

But change it, I will.

Completing the rewiring

Well, my old therapist (OT) has now retired, and it’s time for me to get on with my life. OT helped me a tremendous amount, while I was dealing with the initial shock and dismay of the dawning realization that all has not been well in my life, in many respects… and head injuries had a lot to do with it. The availability of a living, breathing person who could sit with me while I talked my way through the ups and downs of the past couple of years was incredibly helpful. And I will miss OT keenly. I already do. My New Therapist (NT) is smart, highly educated, experienced, and apparently quite aware of the level of foolishness that can come from my mouth at times. OT has already talked me back from the edge of really ill-informed decisions/actions several times, and I’m the better for it.

Much as I do mourn the loss of OT — and it is a loss — I do want to get on with things, and stop spending so much time getting in touch with my emotions. I have logistical issues to address that can’t wait. And I need to work with someone who understands that, who understands my unique mental health profile in terms of physical injuries, rather than mental illness of some kind. There are actual structural issues going on with me that have mucked up my thinking and decision-making for a long time, and I need to get myself on a better track.

NT is helping me do that, as only a neuropsychologically oriented therapist can do. A regular “talk therapist” — no matter how kind-hearted and well-intentioned and psychologically experienced — will be limited in what they can offer me… unless they really understand the TBI aspects of mental health.

See, here’s the thing — after having gotten hit on the head a bunch of times as a kid, it seems to me that my development was altered by those head injuries. The thoughts and impressions I had, growing up, were skewed by my traumatized brain, and because I was reacting to and dealing with situations that weren’t actually “true” representations of what was going on, my social and emotional development got skewed, as well. I had such intense, precipitous reactions to so many things, when I was a kid… and that certainly must have shaped me in unique ways. I think it’s fair to say that when I was growing up, I was having a very different experience of childhood than my siblings and peers, so that shaped me in very different ways into my teen years and my adulthood. Which made me a different kind of person — a kind of person very few people understood that well. I’m not sure anybody did, to be honest. Including myself.

I suppose you could say I was developmentally delayed in some respects.  But in others, I leaped ahead of everyone. Looking around me now, I can’t say that my different development has handicapped me. But it has skewed my perception and interpretation of reality — or, at least, my life experience. And because of that, approaching my emotional and mental health is a different matter than doing so with other people who grew up in regular ways with un-injured brains.

Working my way (slowly) through the Give Back Orlando ebook  Self-Therapy for Head Injury I’m really struck by the talk about how an injured brain can get jammed in the “all-clear” position and not realize that it needs to go from autopilot to thoughtful/careful mode.

I quote from Chapter Two: Head-Injured Moments:

~Note: (bold) is mine~

Most of the head-injured moments happen at times when thoughtful/careful mode is needed but the damaged brain doesn’t see that. The most serious problem in TBI is the breakdown of the system that watches to see when thoughtful/careful mode is needed, when the automatic pilot needs to be shut off. After TBI, the brain misreads the situation, fails to see the need for thoughtful/careful mode, and instead stays on automatic pilot. That causes the person to say or do things impulsively, while feeling as if what he or she is saying and doing is perfectly correct. The behavior comes out wrong, but the survivor is left feeling confused about why everyone is getting upset. The reason why is that we are expected to shut off the quick-and-dirty autopilot mode when something important needs to get done properly. In ordinary life, only a slob, or a jerk, or a loser, or a person with a bad attitude–someone who doesn’t care enough to be sure to get it right–would use the quick-and-dirty method when the stakes are high. Consequently, employers, friends, and family end up getting annoyed and then outright angry with the survivor for being so careless. It may take months or even years, but eventually the people in the survivor’s life begin to give up on him/her because of this failure to use normal quality control, this failure to try hard enough to get things right that really matter. Even though the head-injured moments are rare, they have a huge impact over the months and years. And if you watch for them and write them down, you can start to learn how to fix them.

This is really big for me — the last part, especially. It’s big, because here is someone who clearly knows about the chief vexation of my life — my repeated experiences with screwing up without intending to or realizing I had, until after the damage was done… after the words were said or the job was mucked up or the story/joke was told wrong or the errand was forgotten. And the experience of having people just give up on me over time. Parents, teachers, bosses… all the folks along the way who had such high hopes for me, only to see me mess up, time and time again, for no apparent reason.

Laziness? Carelessness? Cluelessness? Who could say? All anyone knew was, I screwed stuff up. All I knew was, if I was given something to do, chances were, I’d mess it up royally the first time around… and have to work my way back like crazy, just to get back to an even keel.

The one thing I’ve had going for me, over the years, is my indomitable spirit. Nothing gets me down for long — not sure if it’s a superior character or the inability to maintain my focus on negativity for very long 😉  (There’s something to be said for being easily distracted — my attention can be pulled away from misery just as easily as it can be pulled away from a task I’ve just started, which is an added bonus.) I’ve always had this sense that, if I just kept going — and used whatever resources were given me — eventually, if I just stuck with it and didn’t quit, I would find a way through.

And it’s been true, for the most part. I still mess up… but I’m doing something about it. And the Give Back Orlando material is an amazing tool to help me take my recovery even further. (Please keep in mind, that I’m only two chapters into the Self-Therapy guide, so my opinion may change later.)

Anyway, back to the rewiring…

I’ve felt for some time, now, that traumatic brain injuries need not be final. Ever since I read Norman Doidge’s book The Brain That Changes Itself, I’ve been convinced that TBI is not the end of the story. Now certainly, some brain injuries are so severe and so thorough that there’s no turning back. But in countless cases, I believe that neuroplasticity (where the brain rewires itself or re-routes/re-maps certain functionality away from injured parts to healthier, more capable areas) can result in restored abilities. The abilities may not be the same, but they don’t have to be gone forever. Different parts of the brain can literally step in to pick up the slack for injured parts… those “parts” being somewhat diffuse and multidimensional in the brain’s own mysterious, inimitable way.

There’s a whole lot to this concept of neuroplasticity — more than I have time and space (and available memory) to fill in here. But the bottom line is, the brain is capable of rewiring itself. And when you sustain a TBI, whether it’s mild or moderate or severe, rewiring is necessary, in order to regain functionality. If the brain doesn’t get rewired, if it doesn’t heal, if it doesn’t evolve and shift to rise to the demands of life outside the skull, then you’ve got problems.

And when you’ve had a TBI, you often don’t even realize that there are problems to be dealt with.

So, you end up spending an awful lot of time wondering why people are mad at you, why your life is all turned around, and where all the money in the bank got to.

I’ve been in that type of situation more than I care to admit. And I still have a lot of territory to cover. It’s a bit daunting at times, because the skewed interpretations of “reality” began with me at a pretty young age, and I have been intermittently (and unpredictably) misreading signals for a very long time. But the point is, now I know there could be — and probably are — issues with my perception that need to be ironed out. I now know that my brain needs to be retrained. Remapped. Rewired. It’s been getting rearranged, on and off, for over 35 years, now, and I still have a ways go to before the wiring is “up to code.”

Now, I know that this “job” of living my life is never-ending. But I like to think of it as a Herculean, rather than Sisyphean, effort. Hercules was the guy who completed his 12 tasks and cashed in. Sisyphus was the guy who kept rolling that boulder up and down the hill, over and over, for ever and ever, no sooner getting it to the top, than it rolled back down. At times, I’ve felt like Sisyphus, but that’s been a feeling, not a fact. In truth, my Herculean efforts — fighting monsters and hauling heavy loads and plowing fields and whatnot — have paid off a great deal. And for all my screw-ups, I have had a lot of successes.

That’s what I need to remember at times, when everything seems to be going to hell, and I’m sitting around feeling sorry for myself. Woe is me… my therapist has left me… woe is me… I’m getting confused and turned around at work… woe is me… I’m exhausted and can’t seem to sleep through the night… woe is me…  Yada yada yada…

This life is a work in progress — emphasis first on work, then on progress. But it is both. I am no stranger to hard work, and I’m not afraid to get my hands dirty. I’m also not afraid to look at my demons and dance with them. I’m not going to let them lead me on the dance floor — this dance is more modern and interpretive than a tango or walz. But it is a dance, no less.  And I need to not get my heart set on sitting on the sidelines while the best that life has to offer passes me by.

Certainly, there is a lot of work to do. But might it not be possible to have a good time, while I’m working? I grew up in an area where there was a lot of farming… a lot of work. People just did what they had to, and you didn’t bitch and moan about the loads you carried. Everyone just assumed that life was full of heavy lifting and hard lessons, and nobody mooned and boo-hoo’ed and wailed and gnashed their teeth about it. Life = Work. That was the deal, and if you didn’t like it, well tough nuggies.

Consequently, people went out of their way to figure out how to make that working way of life into something rewarding and uplifting and fulfilling. There was family and church and good food and community activities and service. There was reward in doing good work and in a job well-done. People didn’t try to get out of doing things — they found ways to make doing things more enjoyable. By turning on the radio. By singing. By coming up with games to play while finishing a job. By contemplating some idea. Or just by getting into the business at hand and immersing themselves in it 100%.

In a way, I miss that orientation in life. The area where I now live is full of great people, but a lot of them are well-to-do and spoiled and unaccustomed to hard work. They somehow think they’re exempt from exerting themselves. In fact, much of this country seems to be like that. People are so accustomed to convenience and customization, they just assume that all the world is going to modify itself to meet their specifications. They’ve had hardship in life. They’ve suffered. People have been unkind to them or hurt them — physically, mentally, spiritually, emotionally — and they deserve a reward or a “break”. And I find myself sometimes slipping into that frame of mind, too — because I’ve had unfortunate things happen to me, I should be somehow compensated. I should have an easier schedule. I should get accommodations from loved-ones. I shouldn’t have to work my ass off to do  basic things that come easily to others. I should… I should…

But that’s crap, and I know it. I’m a worker, at heart. I grew up working, and I feel most fulfilled when I’ve gotten to the end of a day with all my tasks completed and something to show for them. I don’t shy away from hard work — I embrace it and seek it out. If I hadn’t been head-injured so many times over the course of my life, I might have an easier time of making the most of my abilities, but that’s not how things turned out, and it’s counterproductive to focus on that what-ifWhat-is interests me a whole lot more — what I can do, what I can do about my situation, what I can do to improve, what I can do to salvage and redeem the aspects of myself that really struggle at times.

I’m a worker, plain and simple. And I feel best when I’m not shying away from the challenges that present themselves to me. Everybody has some burden they must carry — whether obvious or hidden. I’m not exception, and I haven’t been singled out by a vindictive universe or a punishing Higher Power as punishment for some “sin” I committed in the past. So, I have it hard at times. So what? Who doesn’t?

I guess the main thing about all this, is figuring out not how to avoid difficulty and challenge, but how to make difficulty and challenge work for me. How to have fun with it. How to be uplifted by it, not dragged down. For me, it’s all about transcendence. It’s not like I’ve got all the time in the world to waste. I do have a lot of issues. I have a lot of pain, I have a lot of confusion, I have a lot of frustrations and anxiety, and I’m at a big cross-roads in my life with no idea which way to turn.

But I’m still here.

A friend in their 70s said to me recently, “Don’t forget to have fun, while you can. Life passes so quickly…” It’s true.

Note to self: Today, have fun! No matter what.

Resources for Brain and Spinal Cord Injury

I’m posting this here, so I can find it later

Resources for Brain and Spinal Cord Injury Research

It’s got all sorts of links and other goodies — just the ticket, for when I need to distract myself – which is not always such a good thing, I’ll admit 😉

TBI Survivor Loved Ones – Don’t Put Up With Our Crap!

If you are a friend or family member or a significant other of someone who has sustained a head injury, you definitely have a unique set of challenges. Head injury is a terribly intrusive and disruptive condition to deal with — it can be extremely difficult for the survivor to deal with, and it can be utterly maddening for the people around the TBI survivor.

They got hit on the head, sure, but it wasn’t a bad injury, from what the doctor said. They weren’t even admitted to the hospital! They were foggy and groggy for a little while, but that passed. As far as anyone can tell, they should be back to normal, no problem. But all of a sudden, the person you once knew and loved — who may seem perfectly fine on the outside — is changed. Their temper is shorter. They forget things. They make stupid decisions and don’t even seem to understand how dense they’re being.

Subtle little differences can sneak in from out of the blue, and you sometimes can’t quite put your finger on it. They seem… different. You know they’re the same person they always were. But they’re not quite themself. And no matter how long you wait, no matter how patient you are, no matter how much you try to reason with them or walk them through things, they don’t seem to be getting any better.

Or, you can definitely see how they are different. They fly off the handle over nothing. They freak out over stupid things. They sleep all the time. Or they can’t seem to get to sleep or stay asleep more than 5 hours or so. They complain of constant headache. They complain of that blasted ringing in their ears. They suddenly grow aggressive, even violent, and they just “go off” for no good reason. They can’t seem to keep their act together and they keep getting in trouble with authorities – teachers, bosses, the police. Nothing anyone says seems to make a difference, and they don’t seem to learn from any of their mistakes.

For a loved one of a TBI survivor, standing by and watching someone seemingly self-destruct… or at least struggle terribly with things that used to be easy for them… must be terribly frustrating. And dealing with someone who used to be so sweet and loving, who’s now a pure terror when they’re tired or stressed, can be quite frightening. I, myself, have frightened lots of people I loved over the course of my life, due to my quick temper and a sometimes violent streak. I’ve never struck anyone I loved or lived with, but I have thrown and broken things and given people good reason to feel very afraid.

As a TBI survivor myself, I really feel strongly about what an important role loved ones can play in helping a head injury survivor not only recover from their physical injury, but rehabilitate behaviorally. True, the inside of our heads — our fragile, sensitive brain — has changed permanently, and some abilities we may never get back. Some of our cognitive challenges just can’t be helped. But when it comes to our behavioral issues, something can be done. I’m convinced of it. I’ve managed to overcome some really serious behavioral difficulties, and because of my relative success in this area, I’m able to find and hold down regular work. In this economy, you can’t put a pricetag on that capability. And most importantly, I haven’t done it alone.

Perhaps the number one TBI issue I have, is my temper. The inner storms that come up for no good reason really tear the crap out of me, at times. For the most part, I can keep my act together. 7 out of 10 times, nobody knows what a hard time I’m having dealing with something as simple and basic as dropping something or flubbing up. But it’s the 3 out of 10 times that get me in trouble. And it’s not good.

In my case, I am blessed to live with someone who is  pretty demanding. They are that way by nature — they have very high standards, and they expect people to live up to them. I have been constantly pushed and prodded over the years to improve myself as best I can, to not misbehave, to not be lazy, to not be lackadaisical, to not just give up. They have “ridden me” very hard, over the years, sometimes nagging and nagging and nagging until I thought my head was going to explode. But at the end of the day, when I did what I promised I was going to do, or I finished a job I’d started, or I’d done what I was supposed to do, or even when I’d tried and failed, the fact that they’d stayed on me turned out to be more good than bad.

Their encouragement has sometimes been gentle, sometimes strident, sometimes impatient, sometimes overly demanding. But even when they’ve been too hard on me and have given me all kind crap about things I couldn’t control – like my difficulties with remembering things, or hearing them when they were talking to me, or being slower on the uptake than they expecte me to be.

One of the things that’s made our life together more challenging over the years is that we didn’t factor in TBI in our interactions and my shortcomings. But when they started to learn more about TBI, they started to change the way they interacted with me, and they have been far more helpful than ever.

Once upon a time, they pushed and pushed and cajoled and nagged and cursed and hounded… with different levels of success. Now, they understand that patience and encouragement can go a long way. But they — and I — also know that sometimes I do need to be yelled at, in order to get my attention. Sometimes, I’m being so slow and dense, I can’t “get” what’s going on, unless it’s expressed at the top of someone’s lungs.

I don’t take the yelling personally, when situations are tight. I actually need to be yelled at. Or I’ll miss an important cue, I’ll run over that pothole, or I’ll do something that can get me hurt. The important distinction for me is that the yelling happens before an event, not afterwards, when it’s too late to do anything about it. If someone is yelling at me, because I am being dangerously slow and they’re trying to protect me, well then, please, by all means, yell at me.

For me, it’s important that people not handle me with kid gloves. My brain has been rattled a number of times over the course of my life, and in some ways, I’m really, really dense. I can’t be coddled and accommodated and treated like some victim by the people in my life.  And I also can’t be given carte blanche to just do and say whatever I damn well please, ’cause I’ve had bunch of brain injuries. It doesn’t help the people I love, to let me run roughshod over all of them. And it makes me feel terrible, when they let me do that.

Like it or not, there are sides of me that need to be disciplined, that need to be kept in check. And they need to be called what they are — unacceptable — by the people who are affected by them. Including myself. There are certain sides of me that need to be called out and stopped, before they do damage. My temper is hot and precipitous and often flares up with out my realizing how or why or that it’s in the process of happening. And when I’m going off over something that doesn’t warrant my level of rage, I need to be told to be quiet. I need to be told to calm down. I need to be told that my outburst is not appropriate, and I need to step away and calm myself down before I can be around other people. I need to be called on my crap, and I need the people around me to refuse to accommodate bad behavior.

There really is no excuse for bad behavior. There are plenty of reasons for it and my TBIs have not helped, but there’s no excuse for letting myself get out of hand and stay that way. Left unchecked and unstopped, temper tantrums, yelling fits, being snappy and course and crass and obnoxious is disruptive to everyone, hurtful to others, and it’s embarrassing to me. After all, I have to live with me, too. It’s not just about my loved ones. It’s about me having to look myself in the eye every morning when I get up. It’s about me being able to hold my head up, having self-confidence that comes from knowing I can manage my behavior, and having the pride of knowing I’m in charge of my own fate, even if my brain doesn’t always cooperate.

But I need help managing. I need help from my partner, who constantly amazes me with their patience and their intelligence and their willingness to stick with me — as well as their strength in keeping me from running roughshod over them. I need help not only with encouragement, but also being pushed to see what all I’m capable of, to see how far I can go in life, and to keep tabs on my inner situation as I go. And my partner has given me that regularly over the yeras.

Most of all, they’ve helped me by keeping me honest, by refusing to tolerate my bad behavior, my laziness, my eagerness to just give up. They have “kept on me” about so many, many things that I wanted to just let drop. They have prodded me to do right, when I wanted to just quit or do wrong. And they have flatly refused to put up with my crap, threatening many times to leave my ass if I didn’t get my act together and stop being such an a**hole.  They have told me in no uncertain terms that the tone I was taking was verbally abusive, or that I was frightening them, or I was getting out of line with my snarky comments. They have yelled at me, cussed me out, made me sleep in the guest room, refused to cook me dinner, given me the silent treatment, taken away my credit cards, and nagged-nagged-nagged me till I did what I was supposed to do, anyway. And I have never once doubted that they loved me, and they were doing all of that not because they were mean-spirited or wanted to hurt me, but because we both have standards to live up to, and they weren’t going to let me off the hook that easily.

Now, sure, there have been plenty of times when I’ve railed against their behavior. I’ve moaned and bitched and fussed over their demanding streak, and how hard on me they could be. I’ve wept bitterly and angrily over things they’ve said and done, and I’ve yelled back plenty of times. But in all honesty, I have to credit them and their unwillingness to tolerate my TBI-induced stupidity, aggression, and stinkin’ thinkin’ for much of my success.

And I also have to credit myself. Because frankly, I wouldn’t be with this person — and I wouldn’t have stuck with them for 18 years — if I didn’t have standards of my own. If I didn’t agree with them about the range of acceptable behavior, and what is and is not allowed in our marriage, I wouldn’t be able to tolerate their level of demanding-ness. Rather than finding their standards annoying and aggravating, I find them good and positive reminders of things I already know, but easily lose track of.

Of all the things that make successful TBI recovery possible for me, standards of behavior — and the enforcement of those standards — are some of the most important. Understanding that some kinds of behavior are good and allowed, while others are not, is key. Having a code to live by. Having a set of internal guidelines. Agreeing upon rules about what is and is not okay. And submitting to the discipline of being policed — both from within and without — is key.

And my partner has played a huge role in all of this. If they had been inclined to hold back and not engage with me… to be the silent suffering type who just let me go off as much as I liked, and didn’t challenge me… to put up with my crap and then go talk to friends about how hard I was to live with… to not face me down and make me behave myself — or else… to do like so many people I know, who don’t understand what’s going wrong and don’t want to make waves and piss other people off, so they do nothing besides take the brunt of their loved-ones’ anger/rage/temper/sharp tongue… If my partner had been like that, I would not be as well-off as I am today.

Now, make no mistake — my life is no bed of roses. I’m really struggling, these days, with job stuff, learning difficulties, job performance issues, and extreme fatigue. I’m almost beside myself with frustration and agitation, and I am having a hell of a time sleeping. But I have no doubt that all these things would be catastrophic for me and my career and my living situation, if I didn’t abide by very strict guidelines about what is and is not acceptable, what is and is not okay to do/say/outwardly express. If I just cut myself slack, or if I lived with someone who suffered silently while I went off on tears all the time, I probably wouldn’t be here.

I’d be in jail.

Or on the streets.

And I would be alone.

I’m not kidding, and I’m not being facetious. I don’t say any of this lightly.

So, it may sound a bit overly controlling to some, and it might sound like borderline BDSM, but discipline is one of the biggest keys to my success. I’m not advocating loved ones of TBI survivors being strident harpies who give no quarter and drive their brain-injured loved ones to the brink of madness with an unending string of impossible demands. But there is something to be said for demanding that people do/be/talk/relate better than they are at the moment — and better than they think they can.

Ultimately, I think that we are all capable of far more than we think we are. And the first step towards being/doing/living better, is refusing to be/do/live worse than you have to.

What do you want to know about TBI?

Okay, so I’ve been running my mouth for over a year, now, talking about my TBI experiences, self-directing my own efforts in this TBI research and reporting one-writer “forum” of mine. I have to admit, I tend to run low on ideas, now and then.  Plus…

Where are my manners?

Shouldn’t I make room for others to chime in, too?

I check my stats pretty regularly (okay, to be honest… obsessively), and I’m always interested to find out what kinds of information people are looking for.

Not long ago, it occurred to me that I’m looking at stats for people who are looking for information that I’m writing about – it’s a self-fulfilling prophecy I’m writing here. And it occurred to me that it would probably be a lot more interesting to find out what other people are looking for, outside of my “prompting” or my own ideas.

So, I’m asking — What is it that YOU want to know about TBI?

Do you want to know what happened to your head when you hit it?

Do you want to know why your TBI-survivor loved-one is behaving the way they are?

Do you want to know how you can help?

Do you want to know where to turn for help?

What do you want to know?

I’m ready and eager to hear about it… and go out and research the answers for you. I’m quite adept at Google, and I have experience looking into a lot of various sources. And I’m kind of good (I like to think so, anyway) at detecting marketing fluff and puff, versus serious quantitative information that we can put to good use.

I have to warn you, though — I am a multiple TBI survivor, and I have my limits. I may think something is useful to you, when it’s really not. I am also not a medical doctor or a trained professional healthcare provider. But do know all too well what the “inside” of TBI is about. And as my Bostonian friends tell me, now and then, I’m wicked smaaaht 😉 So, I can at least try to lend a hand.

So, fill up the comments space here, if you like. Don’t be shy. No question is too small or too stupid or too obvious. We’re all in this together.

How I found a great neuropsychologist – and you can, too

I consider myself extremely lucky. Not everyone has the good fortune that I do — finding an experienced, highly competent neuropsychologist who is not only patient and kind and knowledgeable and insightful and observant, but who is also geared towards rehabilitation and empowerment. And who is well-connected in the neurological and psychological world.

I have truly been protected and guided by some Divine Force, in finding this individual. They have helped me in countless ways, and I’d be lost without them.

I found this individual the old-fashioned way — by picking up the phone and talking to people. I was so turned around and confused and frightened and freaked-out, about a year and a half ago, when I realized (like Paul on the road to Damascus) that things were not right in my life, and they hadn’t been for a long, long time. All the stories I’d been telling myself about how I was perfectly fine and okay, and everyone else had the problem, not me… well, they all just fell apart. I had to get help. I had no idea where to turn. I was so flipped out and frustrated and embarrassed and ashamed of myself… here, I was the Big Cheese who supposedly had it all together, and the outside shell I’d built up around me had started to crack into little tiny pieces.

I swallowed my pride and emailed the Brain Injury Association near where I live. They gave me some good info via email and told me to call anytime.

Now, you have to understand, I have a hell of a time talking to people on the phone. I get confused and turned around, and I have a hard time understanding what’s being said to me. Now I’ve learned that the mechanism of my brain that turns sounds I hear into usable information is broken and not working correctly, so I understand why I’ve always had such a hard time grasping what people were saying to me. But 18 months ago, I didn’t know that yet — all I knew was that I friggin’ hated to talk on the phone, I couldn’t understand what people were saying to me, and it sent me into a panic at times.

But then a lightbulb went on in my head — it was perfectly okay for me to call the Brain Injury Association and sound/talk like a raving lunatic (if it came to that), because they were the Brain Injury Association and they specialized in dealing with people like me. Plus, even though I had a hugely difficult time handling stuff, I was reasonably sure that they’d dealt with people who were far worse off than me. Plus, it was their job to provide information to people who are brain-injured. That’s what they were trained to do.

So, I picked up the phone.

And I got honest. When one of the volunteers answered, I did the unthinkable and gave them my name and told them I needed help. How unlike me. Seriously. In the past, I would have muttered and mumbled and beat around the bush and then just hung up. I never would have said I needed help. I never would have given someone my name. No way, no how. But this time was different.

I told them my situation and asked if they could help me. And when they said they weren’t sure, I did the unthinkable again… and followed that up with a question: Do you know who can? In the past, I would have just said, “Well, thanks for your help… have a nice day,” and hung up. And then I would have wandered off in despair, gotten confused and depressed and withdrawn. But this time, I actually followed through.

The person on the other end of the line paused for a moment, and I just hung in there. I was so petrified… it’s hard to explain that level of terror over something as basic as a phone call. It’s embarrassing for me to admit, and I hate thinking about it. But the phone and I usually don’t get along very well. I think that also, being on the phone with a stranger who knew my name and knew I had sustained multiple brain injuries… being afraid that someone would realize who I was or tell someone about me, or someone nearby might overhear my conversation… being so unsure of myself about being on the phone, to begin with… not sure if I was saying the right thing or doing it right or being clear… feeling like I was making a mess of things — again… it was pretty tough.

After a pause, they suddenly thought of someone I could call who could help me. They gave me the name and number of a long-term brain injury survivor in another part of the state, who had lots of experience with tracking down the source of their issues, years after their injury. They recommended I call them, and wished me luck. I took down the name and number and thanked them, then called this person right away. I knew if I didn’t, I’d never do it, and I had to do something.

I called the number and managed to hang in there through the initial awkwardness of repeating my name and my own story. The person on the other end of the line was really, really helpful, and they were able to spend some time talking to me about what they’d been through. They told me about requesting copies of all doctors’ notes after visits, and making sure that I didn’t get stuck with someone who was clueless, and they told me about how they’d been through the wringer with a bunch of different neuropsychs who just didn’t have a clue. And they also gave me some contact information for a neuropsych they’d gone to see, who had helped them.

They said this doctor was in private practice and they were located some distance from me, but they were the best, and they were well worth the effort of getting to. I said I didn’t care about driving — I would willingly go way out of my way to get the right help.

After I got off the phone with this person, I called the doctor and left a message. I gave them my name and told them my situation, and I left my number. Then I let it go. It was the holiday season, and I had plenty of things to keep me busy.

I also called some other neuropsychs and told them my story. They were helpful to varying degrees — in part because once they heard what insurance I had, some of them just disqualified me outright. But others told me what I needed to do, in order to get around the insurance roadblocks, which was helpful.

After about a week or so, I got a call back from the recommended doc I’d left a message with. They said they would talk to me about my situation, and we spent close to an hour discussing the issues I have. I was starting to get a little desperate, because I was going through all of this on my own, nobody else really knew all the details of my situation (I hadn’t yet worked up the nerve to tell my immediate family members), and I was running out of energy and ideas. But by the end of our discussion, I actually felt like there was hope.

Long story short, I had a really good discussion with the doc, and they suggested some alternatives for my insurance situation. But it took me another eight months before I could navigate the medical and bureaucratic red tape to actually get to see them. It felt like it took forever… and in the meantime, I had a couple of really distressing encounters with (the wrong) neurologists, some deeply disconcerting exchanges with individuals who refused to accept I was having problems, a couple of f’ed up job changes (accompanied by the smell of burning bridges), and a whole lot of trying to get my bearings in life.

But now I’ve found a great neuropsych and have had a great working relationship with them. I’m not sure how much longer we’ll be working together, but if we met for a few hours every other week for the next ten years, I wouldn’t regret it.

If you’re looking for a good neuropsychologist — or really, any medical or “caring sector” professional — and you’ve sustained a TBI or some other issue that is not well-understood, you can cut back on the BS by doing the following:

  1. Talk to people who have the same condition as you, who were successful in finding help.
  2. Talk to your local Brain Injury Association folks to find out where to look for help.
  3. Make sure you get copies of all medical records, even if the doctors and their receptionists look at you funny.
  4. Take notes on what they tell you.
  5. Don’t be afraid to seek help elsewhere. Sometimes it just doesn’t work out with a provider, so keep going.
  6. Never, ever, ever give up!

What keeps me going

coffee and notepad and pen on a table

11/10/18 – Ha! I just discovered this old post from 2009. I’m not sure why I unpublished it, but I like it.  So, I’ll republish it. Here you go.

Ever since I read about how the ‘Thirst For Knowledge’ may be a kind of opioid craving, my thinking about how my mind manages my physical pain has really changed. Actually, it jumped ahead in a big way, when I read about Mary Meagher’s work on how fear and anxiety have different affects on physical pain. But having the kind of associational brain I do… a brain which isn’t very good at sticking with linear, sequential tasks, but eagerly hops around from one related topic to another… I did end up here, thinking about how the human brain craves novelty, and why that might be.

I’ve come to realize, in the past months, that many of my patterns of risk-taking and danger-seeking behavior, not to mention my constant stream of distractions that keep me all jazzed up, have a lot to do with relieving my constant levels of discomfort, distress, and pain. Not only that, but they seem to be linked to a sort of depressed state in my thinking — not necessarily emotionally depressed, but functionally slowed. My history of TBIs has not helped my cognitive processing speed, and there are parts of my brain (as evidenced on my EEG) that physically work more slowly than would be expected.

Actually, come to think of it, emotional depression sometimes follows on my cognitive depression/slowing, so I can’t discount that part of my experience.

Now, when it comes to getting on with my everyday life, risky decision-making and flawed judgment are just part of my problem. Chasing conceptual chimeras — such as my all-consuming obsession with my MRI, as well as new and emerging neuroscience research, which I may never fully understand but which fascinate me to no end — and commencing projects that I will never actually finish — like that 500-page documentation set for one of my favorite software programs of the day — are actually more disruptive and pose more of a risk to my adequate functioning than outright risk-taking behavior.

And yet, I chase after these new ideas and take up new projects, left and right, neglecting the real parts of my life that suffer from my lack of attention. I’m so busy researching and reading and exploring my MRI in 3D, that I forget to pay bills. Or do paperwork. Or make calls I need to be making.

I don’t think I fully understood the impact that my intense need for mental stimulation had on my life, until a little over a year ago, when I came across one of my old notebooks that had plans and details and milestones for all these projects I had once been utterly consumed by. There were no less than seven different highly involved, complex projects that filled different parts of that three-ring notebook. And then I found more in another notebook. I uncovered a whole bunch of different projects that I’d started… then got distracted from and completely forgot about.

Discovering those notebooks opened my eyes in several ways.

First, I realized that I had so completely forgotten about those projects, that they might as well have never existed. And that happened, after I had invested literally hundreds of hours scoping and planning in great detail for each of them. It seemed impossible that I would forget even one of these projects. But I had lost track of more than ten.

Second, I realized just how irrationally compulsive I was about my projects, and it occurred to me that someting might be very wrong in my thought processes. The majority of people I know don’t do this sort of thing… why was I?

Third, I realized that even if I had all the time in the world, I never could have finished all of these Very Important Undertakings. But that didn’t matter to me. What mattered to me, was the doing. The “journey”. The process of pursuing these things. It went against every fiber in my pragmatic being and seemed like a total waste of time. Yet, part of me didn’t care. It would create with abandon and not give a crap about what might actually come of it all. And that troubled me. Because it didn’t seem like me.

Or maybe it did. All my life, I’ve been fascinated by fringe interests and I’ve pursued them with gusto.  When I was a kid, I had a lot of projects going on all the time, and my parents and teachers used to just writhe with frustration at how I could never take any of my projects to a higher level, where they would develop fully and be shareable with others. I would read all about certain subjects and discourse on them at great length, but I could never seem to develop my interests in other directions. I had a “chemistry set” in the basement, where I did extensive studies on the interactions of vinegar and baking soda, and I mixed leftovers from my father’s aftershave with my mother’s talcum powder. But my interests never went much farther than that, for all I learned about fizzy cooking ingredients and the crackle patterns of dried personal care products.

In my adulthood, the intensity of my interests increased substantially, as has their esoteric “quotient”. Over the past 20 years, I have frequently found myself deeply engulfed in studies that interested maybe 5 other people in the world, but my devotion ran to the very core of my being. I’ve also found myself utterly consumed with a topic that was probably well beyond my ability to understand — quantum physics, biophysics, medieval history, and more — all sorts of information-intensive subjects that require years of training (which I didn’t have) to understand completely. My interest has intensified and evolved over the years, but the shareability of my learnings actually decreased. I would read and take in and then recount what I had taken in, but my writing was dense and obfuscated by way too much detail.

Then I fell in 2004 and hit my head and found myself unable to focus and sustain the same level of attention to my old areas of study. My office is filled with books I’d bought, intending to read them in my line of study, but it could be that will never happen.

Still, I do crave my distractions. And between 2004 and 2008, the number and kinds of projects I was consumed by increased exponentially. I just careened from project to project, spending long hours scoping and planning and thinking and noodling. I got so swamped in the details, I couldn’t see my way clear to completion on any of them. But I didn’t care. I just wanted the high of that novelty. The newness, the freshness, the rush that came from a bright new idea.

While I was in the thick of my planning and dreaming and scheming, all was well. But when I stepped back and took a closer look at how much energy I was expending, and how it was getting me nowhere, it just didn’t sit right with me. And I’ve been trying to figure out what the underlying mechanism of that is, ever since.

I think I’m closer now to figuring it out, than I’ve been in quite some time. I can’t speak for anyone else, but what I’ve found makes sense in my own personal context. It’s neurological. It’s biochemical. It’s ingrained. And it’s essential for my mental health and general well-being. I need my distractions, my rushes, my “pump” in order to feel normal. In order to feel human. And the thing that delivers a better rush and pump than just about anything else, is novelty. A new idea. A fresh concept. It’s a tonic to me… and an essential one at that.

Dr. Irving Biederman has some really interesting things to say about this stuff. It’s my understanding that he specializes in things like the neurology of face recognition (which, it occurs to me, could be really useful to folks who study autism/Asperger’s Syndrome and are trying to understand why ASD folks have a hard time decoding facial expressions). This “info junkie” track he occasionally writes about seems like a lesser area of interest for him, from what I’ve read. But it’s much more practically useful to me, than shape and face recognition.

So, that’s what I dwell on, vis-a-vis his reasearch.

Here’s an article about the sensual lure of mental novelty, which I swiped in its entirety from the LA Times:
From the Los Angeles Times

The 411 to avoid boredom

As ‘infovores,’ information is the fuel that keeps our brains all fired up.

By Irving Biederman

July 19, 2008

Crackberry. Only a metaphor for our addiction-like urge to check e-mail? Or does the term shed light on a deep biological truth about our hunger for information?

Human-motivation studies traditionally stress well-established needs: food, water, sex, avoidance of pain. In a culture like ours, most of these needs can be satisfied easily. Just open the refrigerator door, or blow on that spoonful of hot soup. (Satisfying the need for sex may require a bit more doing.)

What’s been missing from this scientific research is humans’ nonstop need for more information.

We are “infovores.” The human eye makes three fixations a second on the world around it, and not at random. Our gaze is drawn to items we suspect have something new to tell us — posters, signs, windows, vistas, busy streets. Confined to a featureless physician’s examination room, we desperately seek a magazine, lest we be reduced to counting the holes in the ceiling tiles. Cornered at a party in a banal conversation, we seek to freshen our drink.

Without new information to assimilate, we experience a highly unpleasant state. Boredom. Conversely, at one time or another, each of us has felt the joy of information-absorption — the conversation that lasts late into the night, the awe at a magnificent vista.

Cognitive neuroscience — the science that seeks to explain how mind emerges from brain — is beginning to unravel how this all works. At USC, my students and I use brain scanning to specifically investigate the neuroscience behind the infovore phenomenon.

The explanation involves opioids, one of many neurotransmitters — which are molecules that the neurons in our brain release to activate or inhibit other neighboring neurons. The effect of opioids is pleasurable. In fact, the same neural receptors are involved in the high we get from opiate drugs, such as heroin or morphine.

In the past, these opioids were believed to exist primarily in the spinal cord and lower brain centers, where they reduced the sensation of pain. But more recently, a gradient of opioid receptors was discovered in a region of the cerebral cortex, humans’ enormous outer brain layer that is largely responsible for perception and cognition.

In the areas of the cortex that initially receive visual or auditory information, opioids are sparse. But in “association areas,” where the sensory information triggers memory and taps into previous knowledge, there is a high density of opioid receptors. So the more a new piece of information tickles that part of your brain where you interpret the scene or conversation, the bigger the opioid hit.

Staring at a blank wall will produce few, if any, mental associations, and thus standing in a corner is punishment. Looking at a random mass of objects will produce strong activation only in the initial stages, where there is little opioid activity to be had.

Gaze at something that leads to a novel interpretation, however, and that will spur higher levels of associative activity in opioid-dense areas. We are thus thrilled when new insights tap into what we have previously learned. We seek ways to feed our opioid desires; we are willing to endure the line at the movie theater in anticipation of the pleasure within. We pay more for a room with a view or a cup of coffee at a Parisian sidewalk cafe.

But if we get more opioids from making connections to our memories and knowledge, why do we then prefer the new? The first time our brains take in a new perception — a scene, a movie, a literary passage — there’s a high level of activity in which a few neurons are strongly activated but the vast majority are only moderately or weakly activated. The strongly activated neurons inhibit the weak — so there’s a net reduction of activity and less opioid pleasure when our brain is exposed to the same information again. (Don’t feel sorry for the inhibited neurons, the losers in this instance of neural Darwinism. They are now freed up to code other experiences.)

No wonder we can’t resist carrying a BlackBerry 24/7. Who knows what goodies it will deliver? A breaking news item. A piece of gossip. An e-mail from a long-ago girlfriend. Another wirelessly and instantaneously delivered opioid hit.

I hope you got a few opioid hits, too, in learning about your inner infovore.

As for me, I’m starting to feel separation anxiety. Where’s my BlackBerry?

Irving Biederman directs the Image Understanding Laboratory at USC, where he is a professor in the departments of psychology and computer science and the neuroscience program.

I did indeed get more than a few opioid hits while I was reading this. As Dr. Biederman says, in “association areas,” where the sensory information triggers memory and taps into previous knowledge, there is a high density of opioid receptors. So the more a new piece of information tickles that part of your brain where you interpret the scene or conversation, the bigger the opioid hit. And because I’ve devoted so much of my life to acquiring and taking in information… data… knowledge and what memories I am able to create and maintain are quite intact (my info absorption during memory creation is about around 60%, but my retention is close to 100%, so I have very detailed recollections of a little more than half of what I am exposed to), that my association areas are well-disposed to getting high off this information.

I suspect that’s what makes the internet so addictive for me — and others. It’s not about the movies and games and pictures. It’s about the novel information that I can read and take in and assimilate and use to feed my inner needs, which are more than just an information addiction.

And I suspect this is what makes my world of projects so fascinating and compelling for me. It’s not about commercializing or publicizing my work. It’s not about profiting from it or getting famous from it. It’s not about taking the projects public, or even actually finishing them. It’s just about doing them. Creating. Being. Doing. Having at it and seeing what happens. Learning. Driving. Getting energized. And cutting the pain I’m usually fighting, in the process.

It’s not about the projects. It’s not even about my progress. It’s about the pain. Getting rid of it. Doing away with it. Keeping my mind off it. Not being debilitated by it. It’s about relieving the distress that comes from the daily difficulties I have with the most basic shit on earth — getting out of bed, taking a shower and using soap and shampoo, making sure I don’t lose my balance and fall in the tub, getting dressed in clean clothes that I didn’t wear yesterday, making a breakfast that will get me through the morning, feeding the cat and gathering my work stuff, making sure I have my wallet and car keys and my daily minder, and getting in the car without bumping against it and getting my work clothes covered with salt and dust that’s leftover from the winter and I haven’t gotten around to cleaning off my car, just yet.

There is so much that others can take for granted, when it comes to everyday life. How hard can it be? Well, if you don’t know… trust me, you don’t want to know. All I can say is, when I look at my distractions, my intellectual compulsions, my wide array of Beloved Projects That Will Probably Go Nowhere, I see a pattern of analgesic activity that may not serve a higher purpose and come to much, in terms of published papers or fame and glory and prizes, but which is utterly essential to my daily functioning as a “regular” person. Without my all-consuming interests, my fascinations, my cognitive compulsions, my life would be a lot more painful, my mind would be a lot less clear, and I’d be a lot less useful — not only in advanced ways, but in the most fundamental ways one can imagine.

Now, where are those printouts I’d gotten on the long-term biochemical effects of post-traumatic stress? I’ve got work to do…

On being beyond help…

I guess I’m feeling sorry for myself today. It started this a.m., when I had a pretty intense discussion with my new shrink about what I was going to do with the information that came from my new neuro. After talking with totally outraged friends who were incensed that my present neuro didn’t tell me about the pineal cyst and were miffed about how my experiences were described in the letter to my PCP, I was seriously considering looking for a new neuro.

Until my shrink talked some sense into me.

Said they, “So, this is Neurologist Number … Three?

Said I, “Yes.”

Said they, “You can’t keep jumping from doctor to doctor…”

Said I, rather abashedly, “Uh… I know…”

We had a pretty frank discussion about how the medical profession is not having a particularly good century, thus far, and how doctors have so much pressure on them, these days, so there’s only so much I can expect from them. And there are plenty of people with much more pressing problems than mine — which are really borderline and are more exploratory than anything else, at this point. True, there are things that have been going on with me for some time, that I’ve been urged to follow up on, but it’s not like I’m in serious trouble and unable to function at all.

I’m high functioning in some ways. In others, I’m less so. It’s getting past the okay stuff to the problematic pieces that’s the major conundrum in my life.

Frankly, I’m not sure I’ll ever be able to get to the bottom of what needs fixing, so I can function as well as I can all across the board. Not really. I just can’t describe my symptoms and issues in ways that others can understand. At least, I haven’t been able to do it, yet. Maybe someday I’ll be able to, with the help of a speech therapist, but right now, I have no great hope of it. I’m just so awful at communicating what’s going on with me, when pressed for information. Just awful.

And it just pisses off the people who are trying to help me.

So, I’m beyond help.

I don’t mean to sound depressed or anything, even though I kind of am. I guess I just had higher hopes of being able to connect with medical folks, and not only failing at that, but also being told there’s no great hope of me being able to do it any better with anyone else, bums me out, too. I’m probably being a drag, right now, and I apologize for that. But for others out there who are dealing with TBI stuff, and for the sake of those who are trying to understand what people like me have to go through, I hope my words can help shed at least a little light on what problems TBI folks face in seeking health care.

I suspect this is going to be a pretty significant issue in the coming years, as our veterans return from Iraq and Afghanistan with head injuries and PTSD and lots of other issues that they need help with. What is this country going to do, when thousands of folks with communication and self-assessment problems like mine — and physical conditions that are far more severe — show up needing help? What are the doctors and nurses of this country going to do? Shrug their shoulders and say, “Oh, well…” and turn away? Or dismiss them as malingerers? Or, absent any clue about what the real problems are, pump them full of drugs that will either ease the symptoms or knock them out sufficiently to not notice them so much?

It makes my heart hurt, to think about it. It’s bad enough that I have to go through all this, when I’m relatively able-bodied and in possession of my faculties, a job, a house, a family, and a relatively stable life. But those who are far less fortunate, and who have paid an unimaginably high price for the sake of this nation… well, it just seems awful to me.

What seems even more awful is this attitude I keep coming across about how doctors have to work hard enough at their trade, without having to extend themselves for people like me. As though learning to communicate with me and figure out what’s up with me in ways that are accessible to me doesn’t matter one bit. As though any communication breakdown is totally on me. I am more than willing to do everything I can to communicate with my doctor(s), but I’ve been injured a bunch of times, and I’m a bit impaired, so I do need some help.

That’s why I seek out medical attention, to begin with. And that’s why I try like crazy to communicate in any way I can find… only to be rebuffed by docs who are irritated at my approach and don’t really have the time to get to know me well enough to tell if I’m really okay, or if I just think I am.

I really want to be positive. I really want to be hopeful. I really want to be generous and gracious and extend myself to my beleaguered doctor(s). But right now I’m too tired from being lectured about how hard doctors have it, and how I can’t expect too much from them, and how other people are much worse off than me, so I shouldn’t take up too much of their time, I’m too frustrated, too … well, everything… to see things in a rosy light.

The ironic thing is, I started out this whole quest from a place where I was totally DIY with regard to my health. I stepped into the fray, agreeing tacitly to call a truce with the establishment and give the medical field the benefit of the doubt, and keep an open mind, be compliant, try to be the best patient I can be. But now I’m being sent away again.

So, I’ll just keep looking. I’ll keep asking questions. I’ll keep recording my life. I’ll keep pressing for answers I need, even if I have to look outside the usual areas (and inside my own heart) for the answers I need. I’ll go back to doing things  the way I always have — on my own, because nobody else has the time or the energy or the willingness to help me in the places I’m the most vulnerable. And I can’t leave myself wide open to that level of dismissal and neglect.

Not anymore.

Yes, I do have problems with getting mired in details…

From March, 2009 – I may have never actually published this…

I’ve been meaning to finish up my writing on “A Perilous Relief“, which is about how I use stress to relieve certain kinds of distress in my life, and how that works against me.

But then I got caught up in thinking about how TBI and PTSD intersect and feed each other. And then I got caught up in thinking about Tetris and how it might help relieve PTSD flashbacks. And then I got caught up in thinking about Natasha Richardson. And then I got caught up in thinking about my job situation. And then…

All of these are very interesting things to think about, and some of them (like job stuff) are quite valuable, if not essential. But in the process of researching the different pieces of these puzzles, I went down a bunch of rabbit holes.

What's been keeping me busy for the past while
What’s been keeping me busy for the past weeks and months

And the paths that used to be pretty straightforward and simple, have now gotten tangled and twisty and have intersected with other paths, so I’ve been wandering around this veritable “rabbit warren” of interests and — let’s face it — distractions.

It’s all very important to me, of course, but these different ideas have been competing for time and attention, and there’s really only so much I can do in any given day. I need to keep my household running, I need to do my taxes, I need to keep current at work, and I need to make sure I’m getting enough sleep each night and I’m eating well.

I need to square away some very basic needs which are not nearly as dramatic and entertaining as exploring my MRI in 3D, but which are essential to my daily functioning. And those things are getting lost in the shuffle. Kind of like “A Perilous Relief” has gotten back-burnered numerous times, since I started working on it a few months back. I know I need to mind my sleeping patterns. I know I need to take my vitamins regularly. I know I need to cut out munching on junk food at 3 p.m. each day (it’s making my tongue break out, in addition to making me feel bad generally). I know I need to help with cooking and cleaning and shopping and yard work. But I get so caught up in other things that I overlook them and don’t tend to them. And things start to fall apart around me.

Which isn’t so bad, when you’re cognitively fully-abled. But when you’ve got cognitive deficits and you’re susceptible to paralyzing anxiety and overwhelm, something as simple as a messy desk can throw off your entire day. And not being able to find papers I need in the construction disaster area of my office sends me into a tailspin that triggers my hot temper and makes me miserable to live with.

I really do need to tend to the basics. But I hate having to tend to the basics. I’ve never been good at it, and I feel it’s terribly unfair of the universe to force me to pay attention to that kind of stuff. For most of my life, I’ve been able to function well in the midst of mess and chaos. No more. Not in the past few years, since my fall in 2004.

I think this is probably the most frustrating part of TBI — not being able to take for granted the things I always did before. Like sleeping through the night. Like keeping my cool in tough situations. Like remembering whether or not I shampooed my hair in the shower, five minutes ago. Like understanding and remembering what was just said to me. I have to expend so much friggin’ energy just keeping up with stuff that everybody else seems to have no problem with — and the everybody else assumes I can do just fine — that it gets depressing, and I lose interest in it pretty quickly. It’s tough to sustain invested interest in stuff that you keep getting wrong, over and over and over again, till you spend much of your time demoralized over the littlest things. There’s only so much failure at fundamentals I can take, before I back away from my problems and avoid them entirely.

So, I end up neglecting things I should take care of — like my sleep schedule. Like my temper. Like my personal hygiene. Like asking for clarification while I’m talking to someone about something important. Granted, I’m not an exhausted, explosive, unkept, smelly one-sided conversationalist. But I could go there all too easily, if I didn’t keep track of where I’m at… and if I didn’t realize that I have these (and many other) issues.

When I slow down long enough to examine my life, I can see plain as day that all is not 100% perfecto in my life. I have many areas where I need help, and I get that. Finally, I get that. Having my neuropsych evaluation turn up hard data about me being really distractable, having a hard time with sustained attention, being prone to missing important pieces of information that are said to me, and having a Swiss cheese working memory that drops information (literally) in the space of a few seconds, has brought it home, loud and clear, that I can’t do this all by myself.  I am in fact impaired. I need help, God help me.

So, I’m now starting to find folks to help me with those things. My neuropsychologist has started to help already. And my new therapist, who has a neuropsychological background, has already helped with some communication issues. I’m also getting to a point where I’ll reach out to a speech pathologist to help me with my verbal comprehension and processing. It’s all coming together. With the help of others.

But for now, I need to tend to basics… finish my breakfast, take my shower (and shampoo my hair), dress for work, and go earn my pay. It’s not the most exciting prospect in the world, but it’s all got to get done.