Post 1978 – the year things started to turn around

Remember this? If not, you didn’t miss much. But my friends and I used to pile into somebody’s parents’ Pacer and drive around, eventually ending up at Pizza Hut to eat thick crust pizza and play Pacman till we ran out of quarters.

In honor of the number of posts coinciding with the calendar years (I’m up to 1978), now and then I’ll be writing about what life was like in the years that correspond with the post number. I’ll do some retrospectives, as well, but where I can correlate the years with past TBIs I’ve had, I’ll be writing about my injuries then.

In 1978, I was 12… then 13 years old, in 7th and 8th grades. My family had settled into the house where my parents still life, after relocating twice in the space of a few years. I was pretty much out of my element, but still carrying on as though I had it all together. At the place we lived for two years prior to our last move, I had sustained a mild TBI while playing at recess one day, and after that, I stopped functioning well. I withdrew into a shell — everything around me was overwhelming and confusing. My grades plummeted. I cut myself off from people socially, and in every sense, I was having a hard time. The lights were too bright, the noises were too loud, I had trouble understanding what people were saying to me, and I was tired and anxious a lot.

It was all just too much for me.

Nobody realized what was going on with me. Nobody knew how many problems I was having, because I wasn’t allowed to have the kinds of problems I was having. My parents and everyone around me basically denied that there was more going on with me than “character issues”, and I wasn’t allowed to be anything other than “normal”. I was expected to continue to play, to be social, to interact with other kids whose normal physical contact during games hurt me like they were pounding on me, to go outside in the blinding sun, and to be involved in all the activities that others did.

And by all means, I was NOT supposed to “sit it out” — “it” being anything. I was supposed to be involved, connected, social. Good grief.

The idea that my brain wasn’t processing things as well as it might have, and that I needed time and patience to put things together, was as foreign to everyone then, as any idea could be. As long as I was breathing and conscious, I was expected to step up and perform. No excuses. No exceptions. And so I did. I dove in and played along, even though things were not clicking as well as they might have.

The problem was, I had a bit of an impulse control issue. I said and did things that I really shouldn’t have. Mean things. Unkind things. Cruel things, even. And when I said and did some pretty sh*tty things to one of the new neighbor kids in the summer before 12th grade, I paid for it in my 7th grade year.

Turns out, the neighbor kids had friends — as in, a gang. And they were all bigger than me. And they were pissed. I was very small for my age, up until the summer I turned 13, so I was easy to push around. And all the bigger kids — a year ahead of me in school — weren’t afraid to do just that.

So, I spent my 7th grade year (1977-1978) in hiding, disappearing into corners and ducking into bathroom stalls, when I saw that gang coming. Needless to say, I didn’t make a lot of friends that year. There were some kids who reached out to me, but that was an awkward school year anyway, and I wasn’t up to it. Still adjusting. Still figuring out how to live my life without getting my ass kicked.

I got a skateboard, then fell off it because my balance was terrible, and I ended up in my Dad’s workshop, learning how trucks are put together. I grew my hair long and spent a lot of time in the woods. I read some, but I didn’t really understand what I was reading, so I made up my own stories in my head and I acted them out in solo live-action role playing scenarios. I was alone, and I liked it that way.

The summer of 1978, things changed dramatically. I started to grow. Nobody else in my family did it quite like I did, but by the time I was in 8th grade, I was 5 inches taller. I got my hair cut, I became more coordinated, and I found peace in my own head — at the top of trees I climbed to get away from it all.

I found my places where I could go to get away from everything, and when I went back to school in the fall, the bullies were gone. They were a year ahead of me, and they had gone on to high school. So, I was free to come and go and move about as I pleased.

8th grade was the year I started getting friends. Everybody at my school was very social, very community minded. And even though I tried to keep to myself, people pulled me into their groups to talk to them, to interact with them. Everybody wanted everyone else to be part of one group or another. Loners were not allowed, which I suppose is sometimes for the best.

I tried getting involved in sports, but organized sports with coaches and drills and regular practices had no appeal for me. It was too structured. Too demanding. I wanted to just flow… and to be good at what I did. I wasn’t very good at the team sports that were offered, especially basketball, which was way too confusing for me. I just couldn’t figure that one out.

But otherwise, things started to loosen up. I don’t have a lot of memories of my 8th grade year, and I was still keeping to myself for the most part. I discovered I had a quick wit and was a bit of a smart aleck, and while the teachers weren’t fond of that, my classmates were. I also discovered that I got along with everyone — from jocks to “brains” to “(pot)heads” to regular everyday folks who didn’t do anything out of the ordinary, but had jobs outside of school or were working towards their dreams.

I also became more involved at the church my parents attended. I was in a strange situation at church, because there was a really active youth program, but I was in between two “bubbles” of age groups. Rather than hold me back with the younger kids, my parents asked if I could be included with the older kids. I was still in 8th grade, but I could hang out with the high school kids. It really brought me along — and in an environment that was safe and respectful and principled. The other kids really took me in and made me feel welcome, and I learned a lot about how to interact with “normal” people just by being around them.

As far as anyone could tell, I was just shy. To them, I wasn’t impaired, I wasn’t having trouble understanding what people were saying to me or keeping track of conversations, and I certainly didn’t have processing issues, as far as they were concerned. I did my best to keep up, and I learned to keep quiet when I wasn’t keeping up. People just thought I was shy, and that was fine with me.

Eventually, I learned how to keep up. We had a lot of structured activities in the church youth group, which made it much easier for me to interact. If I was given a “thing” to do, I was fine. I still felt marginal, and I had trouble keeping up. But I figured out how to present myself in ways that disguised my difficulties. I learned how to pace myself and “present” in ways that were socially useful. And that worked out in my favor quite a bit.

I think that my experiences with being small and vulnerable and bullied made it easier for me to relate to a wide variety of people. I knew what it was like to be on the outside, to be made to feel not-important and insignificant. My mTBI experiences also shaped my view. I knew how it felt to be treated badly for no reason you could understand, to have more expected of you than you could reasonably do, and to lose faith in yourself completely.

I knew how all that felt, from a very early age, and I never wanted to do that to anyone else. If anything, I wanted to help others rise above that and really live their lives as best they could. I knew how terrible it felt, to be so vulnerable and afraid, and I hated the thought that anyone else around me might feel it. For me to feel it was one thing, but watching others in such pain as well… that was just too much.

In any case, I got through 1978, and it ended on an up note, with me learning that basketball and other team sports requiring speed and coordination were not my forte. I was starting to get on my feet again, after being spared the bullying for the second half of the year, and I was beginning to find my way.

It was exciting… thrilling… It really felt like things were turning around for me.

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A strangely vulnerable place

What does the shadow know?

I recently was pointed to an excellent blog post by someone who writes about disability. Her post No, You Are Not Adam Lanza’s Mother and Yes, Your Kid’s Privacy Matters really struck a nerve with me. She basically took to task the author of a blog post that went viral, recounting personal struggles with a challenged kid and what she felt she was forced to do. She seemed to truly believe that her kid might one day turn into a shooter like the one who massacred all those little kids and teachers in the Newtown, CT elementary school.

When I read the words of that mother who blogged about her troubled son and publicly “outed” him in ways that can — and will — follow him the rest of his life, frankly it was eerie. And like the author of No, You Are Not Adam Lanza’s Mother, it really bothered me, hearing a mother tell the world about her usually brilliant, sometimes violent son. To all appearances she was calling out for help. I got that. But I also had to wonder – what about her son? And not only now, but what about later?

Certainly, it must be horribly, terribly difficult for any parent to struggle so much with a kid like that. I feel a great deal of compassion for her. At the same time, I also cannot help but think of my own mother, who spent much of my childhood reaching out for support and help from her friends, by telling them what a difficult time she was having with me and one of my other siblings, who was also a “problem child”. I can remember quite vividly the winter vacation we took with the family next door, when I was 12 or so, and I overheard my mother complaining with great anguish about me and my anger. She could not understand why I was so bitter, so angry, so uncontrolled. I’ll never forget the tone of her voice, the disgust, the helplessness, the blame — as though my anger, regardless of the cause, was an insult to her.

I was making her look bad.

After all, my other siblings were so good — except, of course, for the other problem child who ended up addicted to heavy duty drugs, dropped out of high school in 9th grade, and was in and out of trouble with the cops for years. If only we could all be like the other three who were such good kids, such diligent students, so responsible for their age. If it weren’t for the two of us, everything would have been just right — no criticisms from grandparents, no condemning stares from strangers, no tsk-tsk-tsk from the “church family”. Just a nice all-American family growing up together in a happy little unit.

But of course, there was me… the kid who’d gotten hit in the head a bunch of times (not that anyone put two and two together and understand that was why I was so angry, so quick to act out, so impulsive, so unable to keep focused on anything for long). I was a problem. An embarrassment. A puzzle that could never be solved. I was the wedge between my family and perfection, the barrier between my mother and her happiness. My dad spent a lot of time traveling for his work, when I was a teenager, so he got out of dealing with us, most of the time. So, mom was left to deal with me and The Other One. We were her cross to bear. Especially me — at that point in time — age 12-13, when I seemed irreversibly at odds with everything in the world, including myself, and nothing could calm or soothe me except solitude and the company of my own imagination.

And I wonder about that kid who got basted in that blog post. I wonder how he must feel — how he’s going to feel. The sound of my mother’s dismissing, disparaging, judging, disgusted voice in that cabin in the woods, some 35 years ago, stays with me to this day, and it did a number on my head for years after I first overheard it. I cannot even imagine how that kid must feel, having his issues broadcast all over the world wide web, for all to see and read and think they know about.

Truly, it must suck.

What also sucks, is imagining what it means for the kid long-term. He’s been committed, and his mother has publicly said he’s a threat. What are the chances now, do you think, of him ever being admitted to a public school, or for that matter a college? What school would want him? What college — especially considering the episodes at Virginia Tech — will welcome him with open arms, with a record he’s already started at 13? It probably makes no difference if they sort out his meds. It probably makes no difference if his chemistry rights itself with his advancing years. And it certainly makes no difference, if he learns coping mechanisms and behavioral strategies that help him keep centered and grounded in the midst of any storm.

The damage is done. His face and his name are out in the open for all to see. He’s well and truly screwed.

But hey, at least his mom feels better, right?

What a strange feeling this is. I can only be thankful that my mother had no access to the blogosphere when I was a kid. If she had, she would have been all over it, broadcasting her woes and my ills to the world on every forum and blog and social media outlet she could get to. She did that sort of thing — old-school — as much as she could, with both me and my other problem sibling, with whomever she could, so long as they were willing to listen.

To this day, she hasn’t let go of the pain and humiliation and hurt which my ex-addict sibling brought to her and her otherwise perfect family. She continues to punish them with judgments and criticism and public humiliation, even decades after they had their last high. And she continues to treat me like I’m somehow deficient — to this day she still jumps a little whenever I make a sudden move, as though I’m still as unpredictable and volatile as I was when I was younger. It makes no difference that both of us kids have paid our dues and gotten our lives in order. It makes no difference that we are different. For her, we are just the same.

She remembers. She remembers what we did to her and her chance at perfection. And we will never live it down.

That recollection of what it’s like to have your mother broadcast your illness for her own sake… it’s only half the actual struggle with all this I’m having right now. The other half is with privacy, and the freedom to be anonymously imperfect in this increasingly invasive world. There’s a reason I don’t tell people who I am and where I live. There’s a reason that no one I know is aware that I keep this blog going. Because people just don’t get it. Unless you’ve been in this kind of situation, where your brain and your body and much of your life are all seemingly pitted against your will and best intentions, you cannot know how it is. But you can sure as hell judge. You can sure as hell condemn. And you can sure as hell make certain that your views are known — whether it be on Twitter, Facebook, blog comments, or some other online social medium. There’s just too much talk and not enough knowledge, too much criticism and not enough compassion.

And that is a battle I choose not to take on. Because it’s a losing one. A long and losing one, at that.

Now, being curious to see if there was any kind of response/backlash against the blogger who took issue with Pseudo-Adam Lanza’s mother, I checked back today. Sure enough, she got a ton of comments, apparently a lot of them were not that great. She followed up with a great post: Debriefing: On the Ethics and Implications of Outing a Child in the Media and she touched on many of the things I was thinking, myself. I hope you’ll read her piece – she says it all quite well.

In the end, like many people after the Sandy Hook Elementary massacre, I’m feeling quite raw and vulnerable, these days. But even moreso, as someone with a history of cognitive issues and anger issues and attentional issues that could easily be amplified and skewed by the scapegoating mob who are seeking to root out “bad influences” and “threats” from polite society. Behind every rock, there seems to lurk a demon. People are looking high and low, and you generally find what you look for. It’s truly bizarre, to feel that after so many years of working so hard to gain some semblance of normalcy, I should experience this sense of intense vulnerability — not as a victim, but as someone who might be targeted by the status quo, because of my past. Especially my childhood.

And it makes me reluctant to actually speak my mind and talk about what’s really going on “ïn here”. Someone might take it the wrong way, after all. And then what?

I know I’m indulging in some pretty far-ranging what-if’s… and yet…

Are people with mental illness going to be targeted by an uninformed and aching public? It’s quite possible.

Are people who have different cognitive capacities going to be singled out and marginalized by a world seeking desperately for ways to return to normalcy — a normalcy which never actually existed and we frankly will never “get back”? It wouldn’t surprise me if that happened.

Are people with known anger issues, who struggle with impulse control, who honestly and sincerely work towards keeping to stable ground and staying centered in the midst of chaos going to be seen as potential threats to those around them? I wouldn’t doubt it.

In the extremes, of course we have to be careful. We have to be wise and prudent and use our heads and not let the batshit crazy people loose their rage on the rest of us with tools of mass destruction. But there’s a whole lot of different kinds of crazy swirling around in many, many guises, and I for one wouldn’t care to be labelled by the maddening crowd and possibly targeted by those who “mean well” and are trying to protect their loved ones from threats they imagine are there.

Nor would I want my ills to be dragged out into the light of day without my consent or say-so, and marked as “a future Adam Lanza” — just because my mother needed to feel that she wasn’t quite so alone.

I’ve got the evening OFF

Oh, thank heavens. I have had an incredibly long day, filled with all the “best” that life has to offer. I was scheduled for a late call tonight, but the person I am supposed to be talking to is traveling until Friday, so I have the evening OFF.

Except that I need to go pick up my car from the garage later. And then I need to make an early night of it, because I have an early meeting in the morning. All these meetings at all these hours. It gets to be a little much.

But at least I have a job, and at least my situation is reasonably secure (as far as I can tell). At least I’m not out looking for work. I may be, in a few more months, but then again, I might not be. I’ve made peace with my situation, somewhat. Although I think it’s ridiculous and foolish and debilitating on a number of levels, I have been offsetting the stupidity with my sitting and breathing. It’s something.  Something that helps, no matter what.

It does feel good to be home. Back to my routine. Back to the familiar. It was good to step away and break up the monotony, but it’s also good to have structure and regular events to mark the time with.

A part of me is still profoundly discontent with how things are, but I can trace that directly to my fatigue and anxiety levels, and the lower my fatigue and anxiety, the lower my discontent. So, there’s an explanation that also shows me that A) I can do something about my state of mind/heart, and B) the quality of the conditions around me is not permanently screwed up. It’s very much dependent on my own state of mind/body/heart, so that both simplifies and complicates things.

I feel like I’m rambling. I guess maybe I am.

Anyway, I’ve been really bothered by memories from my past, these past few days. Not so much thought-memories as sense-memories… remembering how I’ve felt in the past. When I was a kid. When I was a teenager. When I was a young adult… all the way up to recent past. And it doesn’t feel good. All that confusion, all that anger, all that frustration and pain… it’s like it’s stuck in my “wiring” and it won’t let go. I try to let it be and just get on with my day, but it follows me, dogs me, hangs onto me like a needy stray looking for some attention, some scraps of food, some fleeting shelter. And when I stop long enough to pay attention to it, it’s so sad, so pathetic, so weak and strung-out, I just don’t know what to think or how to feel about it.

I don’t usually think of myself as someone who’s had a hellish life, but all these old memories of when I was a little kid, banging my head on walls and crawling into dark corners just to escape the bright lights and loud sounds and confusion of all the activity around me… pulling and picking at myself, worrying scabs that wouldn’t heal, throwing myself around like a broken toy, and feeling so much better when I’d hit my head and the noise and franticness and the confusion would stop, for however long.

And I remember how my mother was afraid of me, my father talked to me like I was a piece of crap, and my siblings all learned to steer clear of me when I “got like that”.

Strange, that after I got this sudden reprieve from work this evening, all I can think about is how awful I’ve felt in the past.

It wasn’t always bad. There were times of incredible bliss and joy and absorption in things and ideas that fascinated me. There were people, here and there, who treated me well and could handle me for a little while. There were situations when I did very well for myself and I had a lot to be proud of.

It’s crazy — it feels like it’s all bubbling to the surface, these days. Crazy. I’m okay, but I’m going from one silent extreme to the other, almost breaking down in tears when I’m driving home and listening to someone talk on the radio. Or I’m feeling incredibly calm and peaceful and nothing can move me. Actually, the calm and peace is what’s closest to me, with this undercurrent of upheaval flowing underneath it all. Now and then it bubbles up, or it splashes up, as though it’s rapids on the river.

And then it fades. And I’m fine again.

Oh hell, it’s all a damn’ mystery. Time to get some supper. And take the evening OFF.

Better Living Habits to Help My Brain Work Better

This just got posted as a comment at  my post about confabulating as a kid

  1. You can get away with treating your brain pretty badly and it still works okay, as long as you don’t have a head injury. That rule changes dramatically after a head injury. The brain malfunctions under any kind of unfavorable operating conditions.
  2. For example, if you skip breakfast and eat fast food for lunch, expect your brain to get sluggish. Having a healthy breakfast, including some kind of meat or other protein, is strongly recommended.
  3. You should not subject your brain to any kind of nutritional deficiency. That means drinking plenty of water, and avoiding starving yourself.
  4. There are many theories about nutritional effects on brain function that recommend avoiding sugar, white flour, or both. These are major ingredients in fast food. Although science has not reached agreement that eating a diet which is heavy in fruits and vegetables, whole grain bread, and healthy sources of protein (fish and chicken) helps your brain to work better, enough nutritionists suggest this kind of diet to make it worth considering.
  5. Lack of sleep is a major source of reduced brain ability, especially in people who have had head injuries. To the extent that you can do so, you should make sure to get enough sleep. If you have difficulty in sleeping, this topic will be discussed in an advanced chapter.
  6. If your injury makes you prone to getting tired, there are “energy management” techniques that allow you to make best use of the capacity you have.
  7. Try to do your most difficult and important work early in the day.
  8. Try to avoid working under tension as much as possible, as that burns extra energy.
  9. Try not to do one kind of activity for long periods of time. Switch off from one activity to a completely different kind. For example, after reading something difficult for half an hour, switch to doing dishes or gardening. When you do this, you stop draining the last chemicals out of the reading systems of your brain and start using other, different systems. Switching activities like this can allow you to get a great deal done without getting completely exhausted.
  10. If there are stresses where you live or spend time, work on reducing those stresses. For example, after living or hanging out in a messy room for a long time, some people find that it actually reduces stress to straighten it up. If your living area is infested with bugs, and that bothers you, take steps to get rid of them. Any reduction in stress is likely to make everything work better.
  11. Getting some physical exercise every day seems to help the brain to work better.

Growing up with TBI – The Confabulation Kid

Looking back on my life and comparing notes with others, I realize more and more how much my experience has been impacted by the TBI’s I experienced. I was a pretty wild child — hard to handle and harder to discipline. I tried to be a good kid, for the most part, but I got turned around a lot, and it didn’t work in my favor.

I had real difficulties with keeping facts straight — I thought I had things right, but I was turned around and/or missing vital pieces of information. And in the process, I often looked like I was making things up to get attention or just plain lying.

Head injuries sometimes result in a phenomenon called Confabulationthe formation of false memories, perceptions, or beliefs about the self or the environment as a result of neurological or psychological dysfunction. When it is a matter of memory, confabulation is the confusion of imagination with memory, or the confused application of true memories.

I couldn’t tell jokes to save my life. I would usually forget the punchline, or I’d get the joke all turned around. I would get mixed up in the middle of telling long stories, but I wouldn’t realize it, and my brain would fill in the blanks, itself, so that each time I told the story it was a little different — but I didn’t realize it. In some cases, I actually believed that the inaccurate details I was providing were very true.

I have very clear memories of my parents questioning me over and over about the details of a story I just told them, but I would get confused, the more they questioned me, and they would end up — gently or brusquely — telling me that I wasn’t supposed to fib or lie. I wasn’t intentionally lying. In fact, I had no awareness that the tale I was telling was anything other than the truth. But I came across as an intentional “fabulist” instead of a confabulating kid.

I also had a perception of myself as being really good at sports, when I was little. But I was actually very uncoordinated and klutzy, and I was often picked last — or almost last — at schoolyard games. For some reason, this didn’t sink in, and I was able to convince myself that I was very, very good at the sports my other siblings found easy to play. I wanted so much to be good at sports, to be part of things. Both my parents were athletic and active, and I wanted to be, too. All the other kids could kick the ball in kickball… why couldn’t I make contact? It didn’t make sense to me. As far as I was concerned, I was perfectly athletic and able to perform.

Now, on the up-side of this “athletic confabulation”, this skewed perception of my physical skills, my oblivion to how uncoordinated and klutzy I was made it possible for me to keep at all the practicing, until I acquired some skill. One thing I will say for my parents is that they never discouraged me from playing sports, even when I looked like a dork and made a fool of myself. They just told me to get back in there and keep trying. Eventually, I would get it. And when I moved on to high school and started running cross country, I was the team captain two years in a row and led my team to the districts and state championship competitions. We didn’t win states, and we didn’t win districts, but we placed high enough to be serious contenders. And this at a time when running was not all the rage, and we were just a rag-tag bunch of kids in shorts and sneakers out on the open road…

When I was little, I also got roughed up a bit by kids who were bigger (and meaner) than me, but I told myself they had done it by accident. I wasn’t very good at deciphering what other people were thinking/saying about me — I was a lot slower in many ways than I admitted. But looking back now, I realize that a whole lot of social information went right over my head because I had such a skewed view of myself — I didn’t realize that I wasn’t following, so I never stopped to ask people what they meant when they were talking to me. If I hadn’t been head-injured, I might have been considered delusional. But I’d fallen and gotten hit in the head, and that definitely had an impact.

It had an impact on my perception of myself. It had an impact on my ability to track information and keep it straight in my head. It had an impact on my socialization, as I was often seen by my peers as a bragger or an exaggerator and ostracized over the years… simply because my brain was giving me false information.

I remember one time, in particular, when I was in fifth grade. My family had recently moved from a small city to the country, and I was acclimating to a rural environment from an urban one. I was desperately homesick for “the city” and I was angry a lot with kids around me for not having the same mannerisms as I. One day in class, I was telling everyone about my favorite thing to do — drive across a bridge that spanned a wide river. My dad had told me that it was very long — I think he said it was something like a mile wide? But my brain translated “very long” to “seven miles long” and I was convinced that the river was seven miles across and the bridge was too.

When I told the class that, my teacher tried to correct me, but I refused to be corrected. My brain told me the river is very wide — very wide means seven miles across, and that’s how it is. Nothing that anyone said could convince me otherwise. Not logic. Not reasoning. Not authority. I was convinced that I was right, and there were no two ways about it. The rest of the class thought this was hilarious, and didn’t hesitate to laugh at me. I wasn’t sure what I’d done wrong — only that everyone was mocking me, and once again, I was an outsider without a clue.

Looking back, I think that this confabulation business made my childhood a lot more difficult for me than I ever realized. My whole family is full of story-tellers, and they love to share their experiences. I’m the same way. I love to tell a good story, and I have lots of unusual experiences under my belt. I always have.

But time after time, when I would tell stories about my day in school or something that happened to me, I would get turned around, miss details, turn facts around, get mixed up, and generally make a mess of things. On good days, people realized I was just confused. On bad days, they clearly thought I was lying. And I could happily go the rest of my life without my parents, grandparents, siblings, aunts and uncles, (and nieces and nephews) looking at me like I’m making stuff up “again”.

Yeah, it was kind of rough, living with that undetected weakness. And being treated like I had done something wrong (intentionally) when I honestly didn’t realize that something was wrong, has probably stymied me more than just about anything in my life. In fact, one of the dominant themes in my life has been feeling like I was being punished for no reason that I could understand — and being disciplined for “lying” and having others laugh at me, roll their eyes at me, and generally treat me like I was a pathological fabulist who couldn’t be trusted with the truth was a regular part of my childhood experience. I wanted to tell the truth. I wanted to tell a good story. I wanted so badly to do the right thing and get it right, just once… But I failed. Time after time, my broken brain failed me.

And the times when I did get it right, well, that didn’t really count, because that’s what I was supposed to do. What did I want — a medal for just doing things the same way everyone else could?

Now, I’m not looking for pity or sympathy — please just understand what that experience was like. Especially if you know a kid who has had a head injury … or who just looks like a pathological liar/fabulist, but doesn’t appear aware that they’re doing anything wrong. Chances are, they are not trying to lie. They might be, but then again, they might just be confabulating. Like I was.

Again, they might have no clue that they’re doing anything wrong. They may just need some extra help understanding that they’re turned around and they need extra help figuring out the way things really are…  the way things should really be said/told/expressed. If they’ve had a head injury of some kind, it could be that their broken brain is hiding from them the fact things are amiss… and they can’t figure out why everyone is always laughing at them.

Or what they’ve done wrong. Again.

TBI & Polytrauma Single-Topic Issue in JRRD

The US Dept of Veterans Affairs has some great information at http://www.rehab.research.va.gov/jour/07/44/7/contents.html

Here’s hoping that folks suffering from TBI will be better served — especially our veterans.

How I got here

It all took me pretty much by surprise…

I have been going through a pretty intense time in my life, for the past couple of years… having trouble with work, having trouble with relationships, having trouble keeping up with the demands of daily life. Things that other people seem to find easy — keeping groceries in the fridge, holding down a steady job, having a social life, keeping the house repaired and well-maintained — have gotten increasingly difficult for me, over the past few years.

I just couldn’t go on, constantly feeling like I was playing catch-up, never being able to hold down work at the same job longer than a year or two… I’ve got a mortgage to pay, and obligations to meet, and I was getting damned tired of living in isolation. I couldnt afford to be so erratic. Not anymore.

So, I sought professional help, about six months ago. In talking to my counselor, I came to realize just how traumatic my childhood was, how many behavioral issues I had, how my relationship with my parents and siblings has always been strained… but why?!

I was trying to “track” my personal experiences that might have caused me to be the disruptive, rebellious, defiant “behavioral challenge” that I was in school and at home. What could have happened to me, to cause me to be at such odds with my parents and teachers, in and out of trouble, grades up and down, never really performing at my peak potential… What was this terrible experience I’d endured at the hands of the world, that made me so angry and bitter and aggressive?

I just couldn’t figure it out… My parents are not awful people, and even at their worst, they didn’t terribly abuse me. My school experience wasn’t great, and my teachers were often sorely lacking, but my education wasn’t some Dickensian nightmare. My childhood was just not as horrific as my symptoms would imply.

Then, I was looking around online and came across a site about recovery from trauma. I clicked through some links, followed more links, followed more links… and ended up on a page that read like a chronicle of the last 35 years of my life — it was a web page about traumatic brain injury.

Everything on that page sounded like a description of my childhood… and adulthood. From the Cognitive Difficulties after TBI to Behavioral/Emotional Difficulties, it was like reading a high-level description of my life.

And I thought back to when things seemed to change drastically for me… when I started having real problems in school and with other kids — right after I was struck on the head by a rock thrown at me by kids who didn’t like my looks. I was knocked out briefly, if I remember correctly, and was pretty “out of it” for a while after the impact. My parents had me lie down and they kept an eye on me, but they decided the hospital wasn’t the place to take me, as I didn’t seem to have a concussion.

After that incident (assault), I remember wondering why I was so aggressive with the other kids in school. Why I was so angry, why I was so frustrated, why I said and did things I didn’t mean to say and do — teasing kids mercilessly, striking out at my siblings, being a real discipline problem at home. I couldn’t seem to understand what was going on around me, anymore. I remember wondering why. I consciously noticed a difference in my behavior that baffled me. It was like I was watching a bad movie of myself doing impossible things, unable to control myself and my impulses. It never occurred to me that getting hit on the head had anything to do with it.

But it did. I’m convinced of it. I also believe that — as a very active athlete — I may have re-injured myself in sports and outdoor activities over the years. Falling down and getting a little dazed was not a rare occurrence for me, and I may have easily done more damage to my brain without knowing it.

Over the years, I’ve essentially rehabilitated myself — largely in response to the threat of being punished for things “I” did. I grew up as “problem” that people couldn’t figure out how to solve, and I spent an awful lot of time struggling to reach (or simulate) some semblance of normalcy and regularity in my life. I’ve struggled all my life with not understanding what people were saying to me right away… not being able to keep myself from saying socially inappropriate things (especially relating to gender and race and religion)… not being able to perform up to what I knew my potential was… not being able to concentrate for long periods of time… losing focus… forgetting things… struggling academically… a whole slew of issues that I can now see were 99% probably due to that head trauma I sustained around 1972-3. I’ve recovered admirably… on the surface, anyway. And I do a damned good impression of a “normal” person.

Then I slipped and fell down a flight of stairs at the end of 2004, and I hit my head — hard — on the first 3-4 steps before I pulled my head up and tore up my back in the process. After that experience, all my relationships at work started to suffer, my work product suffered, and I burned bridges with people who probably never realized that there may have been a physiological and neurological reason for why I was acting like such a bastard. I blamed stress at the time. But now I blame mild traumatic brain injury (MTBI), which can have anything but mild consequences.

My story is still far from over I’m still trying to track down all the details about my situation — taking notes about events that happened, my symptoms, possible after-effects from my injury/-ies. The more closely I look at my past, the more sense an MBTI makes. It explains a whole lot that’s baffled and mystified and frustrated me over the years.

I’m not happy to have sustained MTBI(s), but I’m happy I finally figured this out.

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