Oh, haters…

Cranky after concussion? You're not the only one
Everybody’s got an opinion. And some folks feel the need to go on the attack to make their point.

I just got my first nasty-gram from someone who disagrees with what I said about Ronda Rousey and that fight. They really felt strongly about the subject, that’s for sure. I guess I hit a nerve.

Too bad they didn’t actually leave their name — they commented as “Anonymous”. I guess it was one of those “hit and run” kinds of things.

I always find it strange when people find it necessary to go after other people and call names, just because they disagree with what the other person said. I don’t begrudge anyone their opinion. I really don’t care of others disagree with me — I welcome it, in fact.

But I won’t be bullied by name-calling and insults.

Sigh. Time to get on with my day.

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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.

No one has a clue how hard this is for me

Even I don’t, sometimes.

Seriously. I walk through my days, going about my regular business, living my life, interacting with people, doing what I do, making mistakes, making it right… working (hard) to keep up. And I do manage to keep up. Most of the time.

At least, that’s how it looks on the outside. I’ve learned, over years, to present in a certain way… to project a certain image… to do a passable job of fitting in, by mirroring the mannerisms and “social pacing” of people around me. And it works. I had to figure it out by trial-and-error, but I did eventually figure it out.

In my early childhood, when I was first learning about how to live outside my parents’ house — in school, especially — I had a very hard time fitting into my surroundings. My early grade-school years were rocky and rough, and I went through a lot of bullying and teasing and marginalization. I also had a very, very hard time dealing with academic requirements. I could pretty much get by, but it was — again — trial and error. I remember working so very, very hard to make my teachers happy… without fully understanding why they were asking me to learn certain things and complete certain lessons.

I think part of the problem was that, despite having a hard time keeping up with what was going on around me, I was ahead of the kids around me, subject-wise. I grew up in a family that valued education and spent a lot of time exploring the world of ideas. My parents were — and still are — very well read, and my grandparents were experts in their fields. I was well accustomed to sitting around talking about complex subjects… more comfortable doing that, in fact, than spending time playing with the kids around me.

And it was awkward. Very awkward for everyone. At least, I think it was. I didn’t understand my peers very well, and they didn’t seem to understand me at all. Or maybe my perceptions were skewed because of my TBIs — poor judgment, slowed information processing, and misperception of the actions and/or intentions of others are all hallmarks of TBI. Maybe everyone was fine with me; I just wasn’t fine with them (or myself).

Anyway, I don’t want to harp on all my difficulties. Let’s just say my childhood was somewhat challenging.

All that started to change, however, when I started getting connected with kids who were several years older than me. My family had moved to a new area, and we had started attending a new church. That church did not have a very large concentration of kids exactly my age — they were either several years older than me or several years younger. My parents talked to the youth director and managed to get me “in” with the older kids in the young adult youth group.

I really wasn’t sure about it, when I started. I was painfully shy — no, shy isn’t the word for it. I was completely out of my depth. All the boys and girls — young men and young women, actually — who were part of the youth group seemed so with it, so together, so … grown up. They seemed like they knew what everyone was saying when they talked, and they seemed to know how to act around other people.

I was amazed. I couldn’t for the life of me figure out how to initiate conversations that weren’t about some academic matter, and I sure as hell didn’t know how to keep a conversation going. I was petrified, the first months I hung out with the other kids. But fortunately, some of the most popular kids in the “gang” at church were second cousins of mine, and they knew me from family reunions. So, I was “in” with the crowd, even when I couldn’t manage to put two words together.

It would be really easy for me to focus on how challenging those years were for me. But I’d rather focus on how much I gained from meeting those challenges head-on, and learning from them. Those several years with the older kids — I spent about 3 years among kids who were several years my senior — taught me volumes about how to make my way in the world. By watching them and seeing how they interacted with others, I was able to model my behavior on something positive — and types of behavior that obviously worked. I watched the kids who were clearly popular and having a great time being alive, and I mirrored their words and actions. I’m sure I looked a bit spastic, at times, tagging along and clumsily imitating everyone at the start, but eventually I learned how to smooth it all out and “deliver a seamless presentation” of the kinds of behavior I saw other people using — that worked well for them in social situations.

I could tell things worked, if people laughed at jokes. I could tell things worked for them, if other people smiled when they approached. I could tell things were “clicking” socially, if everyone was relaxed and enjoying each others’ company. It probably sounds pretty remedial and basic, but that’s how I learned. And I learned pretty quickly, too — so long as I could be a part of the group, but still be able to withdraw, now and then, when I got overwhelmed. Because I was with kids who were some years older than me, I was able to get “special dispensation” because I was younger. I was “just a kid” so I was allowed to mess up, now and then. Not all the time, but they tended to cut me some slack, which was helpful.

The fact that all this took place in a church environment, where there were very strict rules about how you did and did not behave was very helpful also. All the boys were well-behaved, and all the girls kept to very high standards of behavior. Even though a lot of us eventually left the church and went our own ways, far from organized religion, the fact that there were clear guidelines in place for us to follow made it pretty straightforward for me to figure out how I should — and should not — behave around others. The kids who were ahead of me modeled acceptable behavior, and I followed their example. I was part of a “gang” — but the gang was all good Christian kids, so I had the benefit of being in a group of pressuring peers who pressured me in directions that did not lead towards drugs, alcohol, petty crime, and teen sex.  (That pressure took place in the other “gangs” I ran with, several years later, in school and at jobs I held.)

During those early teen years in the church youth group, I learned how to integrate socially through the various activities we had — Sunday School, prayer meetings, weeknight services, organized youth group activities, like trips and outings, Bible quiz team, and countless other get-togethers that were organized by the youth leaders. They really did have a good program, I realize in retrospect, and I benefitted from it a lot. Being able to be around kids who were older than me gave me license to just be who and what I was — a little dorky, a little geeky, gangly and awkward and prone to say dumb things that were out of context — and be accepted, anyway, because I was young. I don’t remember being stigmatized, probably because it was generally expected that I was supposed to be different — but that was because of my age, not because I was a queer little brain-damaged freak who couldn’t fit in with my peer group.

What a relief it was, to be allowed to be different! I had been battling against my social surroundings for years, but that had gotten me nowhere. And I mean, nowhere. Standing out as being different (which was my “default setting”), had resulted in a lot of bullying, ridicule, and general hardship for me. It had also not helped my academic performance or my general ability to get by in the world. But being able to hang out with kids who were not only older than me and showed me how to behave, but being given some leeway with how I behaved, totally took the pressure off.

I was finally able to relax, socially. And I was able to learn. I was able to pattern my demeanor after the most socially successful members of the youth group — the guys and gals who were the most capable, the most popular, the smartest, the most respected-by-adults. I’m sure I looked kind of dense, stumbling and bumbling my way after them. But you know what? No matter how dorky I looked around the older kids, when I was around my own peer group, those behaviors and mannerisms made me look a lot more mature than I felt. I didn’t need to understand exactly why someone would say certain things (like social pleasantries) or do certain things (like strike up a conversation with people you’ve never met before in your life). I only needed to understand how they did it, and that it worked for them… and perfect my impressions of the most socially successful people I knew.

Granted, my “performance” wasn’t always perfect, and there were a lot of false moves over the years that got me in trouble with older kids and teachers and other authority figures, but you know what? By practicing and practicing and practicing some more… observing carefully when others did things that made them look good… by rehearsing the “role” I wanted to play in the world in the privacy of my own bedroom, out in the woods where I could have some alone-time… by constantly checking and re-checking the results of what I’d done, learning my lessons and “taking my lumps” as I went, I was able to build a really compelling and convincing repertoire of social graces that have stood me in good staid.

Okay, so my parents were probably pretty concerned throughout the course of my life, when I’d spend hours just talking to myself. And I’m sure they’ve often wondered about me walking around having animated, in-depth conversations about topics I’m passionate about… with no one in particular. To this day, I still have extended animated converstions with myself when I’m alone or in the car driving. I do it — and have always done it — to work on my vocal pacing, my delivery, my presentation. I have a role to play in the world, and I know well enough (inside my own woolly head) how hard it can be for me to keep my act together. I get lost all too quickly, so I need to keep my composure skills up, and “running the lines” my life does it for me. This “regular life” stuff doesn’t come easily to me, so I have to work at it, work at it, work at it some more. All the time, whenever I get a chance.

Fortunately, I enjoy it, and when I’m having intense, protracted discussions with myself, pretending to talk to another person — breaking now and then to let “them” get a word in — I’m usually going on about something that captures and holds my interest. So it’s not work as much as it is effortful play. And it pays off.

In countless ways. Can I just tell you, the best validation of my efforts has been all these people telling me, over the course of the past year or so, that they never would have guessed I had a head injury, let alone half a dozen. It never would have occurred to them that I was anything less than perfectly normal. On the outside, then, my presentation is intact. And all my hard work has paid off. The countless hours I’ve spent analyzing my interactions with the world, checking and double-checking the results of my relating to others… the untold time I’ve spent carefully tweaking my demeanor during the course of converstaions… the tricks I’ve picked up about how to interact effectively with others… it’s all paid off. Big time.

Now there are some days, of course, when I feel a lot more like a fraud than I feel functional. I feel like I’m just walking through my days playing a role that has nothing to do with me. I’m sure a lot of people feel that way — especially as they age and start to examine their lives. But with me, it’s especially pronounced, because there are many, many times I say and do things without even thinking about them which don’t sound anything like me, or what interests me, or what I care about. There are times when I’ll get to the end of a conversation or a complex interaction with someone and realize that I have no idea what just happened — I wasn’t even personally involved in the interaction. I didn’t even say what I meant or thought or felt. I just mirrored that other person, without even knowing what I was mirroring. They thought for sure that I agreed with them wholeheartedly and was validating their point of view by repeating it back to them, but I was really just saying and doing the bare minimum to get in and out of the conversation without getting too turned around.

Indeed, this is the great pitfall of this approach, socially successful as it may be: that I can get swept up in a chain of events that I don’t agree with, don’t care about, don’t even want to participate in… because the action is moving a lot faster than my little brain is, and I’ve unconsciously mirrored everyone so well, that they enlisted my help and swept me into their grand designs without my ever consciously assenting to it. And they think that because I’m able to mirror them so well, I’ve consciously chosen the path they’re taking because I’m as totally into it as they are… But I haven’t deliberately chosen.  And I’m not totally into it. I’m totally into nothing more than just participating and navigating the situation successfully enough to not be found out as a head-injured dimwit.

It can be a problem. Especially when I try to slow down the action long enough to say, “Hey – I need a while to think this through before I get involved.” Slowing things down is terribly difficult for me, in the first place, because I tend to be highly impulsive and get swept up into the energy of things. I also hate feeling as slow as I am, and I hate feeling so friggin’ retarded — as in the literal meaning “to be delayed”, which is exactly what I am at times. I have developed an elaborate and effective cover/compensatory strategy for my limitations, and I like how I feel when I’m “under cover”. I like feeling whole and hale and hearty and fast and smooth and with it. I like feeling complete and well-integrated. But when I “buy my cover” and forget that it’s just that — well, things can break down pretty quickly.

I suppose it’s all a balancing act.  There’s no way I’m going to just dispense with my compensatory behaviors — why should I? Everyone needs a little cover, now and then, and plenty of people say “yes-yes-yes” while they’re trying to buy time to think things through on their own, in the privacy of their own heads. But I don’t want to fool myself into thinking that everything is perfectly alright, since I can present well, articulate, keep my act together in very controlled circumstances. I don’t want to fall into the habit of thinking that because I can function very well in a highly structured environment where I’m literally just mimicking people around me and able to perform well as a result, than I can duplicate that same level of effectiveness out on my own.

I’ve tried it, and it doesn’t work. I once thought that my on-the-job skills at my highly routinized, heavily project-managed 9-to-5 position at an established corporation would translate into the same level of effectiveness and success when I started my own company. But I was wrong, and that experiment ended very, very badly. I’m still picking up the pieces.

I once thought that because I saw other people conducting workshops and I understood the form and structure of them, that I could duplicate their efforts and do just as well. What happened was, I got 10 minutes into the workshop and lost control of the “flow” and ended up riding a wild bucking bronco of a workshop where everyone talked out of turn and wouldn’t stay on-topic — very similar to what happens inside my head when I’m tired and overwhelmed.

I once thought that because I had worked in financial services for many years, and I had a burning interest in financial planning, that I could and should become a financial planner. But I ended up enrolling in a program for a bunch of money and then was unable to even finish two of the six courses. I was also unable to get more than a C grade in the two tests I took. And I had no idea why! As so many times in my past, I actually forgot about the program for a while and wandered off to do other things… and it didn’t fully sink in that I was supposed to be working on it until I got a notice that I had all of six… then three months left to complete the 18-month course. It slipped my mind, for the most part… and I couldn’t finish the program. What could — and should — have been a simple matter for me turned out to be a whole lot more complicated than I thought it would be. And I was a whole lot less up to the task, than I had assumed.

I once thought that because I had worked with many different kinds of lawyers for many years, that I could read and analyze and understand important legal documents for my family, but I ended up really turned around and confused, and if it weren’t for the fact that I had a good lawyer waiting in the wings, I could have really screwed things up.

The wild thing was — I had gotten myself into all these messes at the urging of others around me. Others who were so very, very sure that I could handle myself perfectly well, that I was perfectly capable, that I was perfectly equipped to deal with all of this… who had no idea at the time (as I) that there were some serious neurological impairments holding me back. There weren’t a lot, but there were enough.

And as a result, I have danced on the edge of disaster repeatedly throughout the course of my adulthood — and I’m still running into instances where I overestimate my capabilities. They’re less and less pronounced, and I’m getting more acclimated to “quality controlling” my assumptions, but the risk still exists that I might overreach and not realize I need to take special care to compensate for my limits.

I suspect that these may be good examples of anosognosic hazard — having lacking self-awareness get in the way of living your life. I know that they’re good examples of how buying my own cover can get me into trouble.

The thing is, I don’t feel like being disabled, I don’t feel like being head-injured, I don’t feel like making special exceptions for myself. But when I don’t at least consider that my broken brain may be complicating my life needlessly… getting me into trouble, yet again… well, the feeling of being in hot water is far worse than the feeling of tending to my relatively few special needs.

I really, really hate having to consider how difficult some things are for me. I detest having to bumble and fumble and stumble my way through situations until I figure out how to handle them. I cannot stand having trouble with sequential steps and not being able to remember stuff that “should” come easily to me. Most of all, I hate the idea of revealing to others how hard I have to work to do the most basic of things, like getting up and going through my routine each morning, and actually getting to work on time. It’s embarrassing, it’s disconcerting, it’s a total downer. But that’s how it is.

And even if I don’t show it to everyone else, it’s important that I not lose sight of it inside my own head.

‘Cause you can’t fix something, if you don’t know it’s broken.

My Phantom Brain

Last night I was sitting up, writing in my journal about (bad) experiences I’ve had in the past that I can directly trace to complications from my TBIs. It actually does give me a great sense of relief to know that it was my brain, not my “defective character” that had such a large hand in many of the troublesome spots I got into. I had a nasty habit of falling in with ne’er-do-wells in high school and college, and I put myself in serious danger a bunch of times, because I misjudged social situations that were tailor-made to totally screw me up. My delayed information processing kept me from making on-the-spot good decisions, and my problems with attention seriously impacted the quality of information I was working with.

But knowing that TBI-related cognitive issues had a large hand in what was up with me only goes so far in comforting me. In some cases, although I may have escaped bodily harm, I’m still dealing with the scars of social “transactions” gone wrong.

Yes, I escaped being pounded to a pulp by thugs in school… But I didn’t escape being viciously bullied during elementary school, in both 5th and 7th grades, and I still have a lot of social anxiety that I have to consciously battle on a regular basis.

Yes, I escaped being waylaid and robbed by thugs while I was traveling 20-some years ago… But I still haven’t gotten over the chagrin at having wandered into bad parts of town in a country far from home… and I am still a bit insecure about going into unfamiliar areas when I’m alone.

No, I wasn’t gunned down by hunters when I took an off-the-beaten-path hike down a deer trail — without wearing bright colors — on the first day of deer hunting season… But I still can’t believe I did something that stupid, and I’m damned lucky the hunter that did spot me called out to me to let me know they were there.

Yes, I avoided getting into trouble with people who mistook my unusually intense manner for sexual interest… But I still kick myself for “giving people the wrong impression” when I was just trying to pay attention to them well enough to figure out what they were saying to me.

Needless to say, my life has not been simplified by my TBIs, and I really feel for others who are going through the same sorts of things, wondering — as I so often did — why the hell things were going so badly… again.

There are two types of problems I can trace back to my TBI experiences:

A) Fallout from the injuries themselves, for example:

  • I was thinking more slowly after I got hit on the head so I made poor choices when pressed to respond in the moment
  • I couldn’t follow what someone was saying to me, so I missed clues they were giving me, and/or
  • I was having huge issues with my temper, anger, rage, and frustration which led to me acting out in unhelpful ways
  • and so on…

B) Fallout from my inability to tell that I was having problems, to begin with, for example:

  • I didn’t realize my ability to assess risk was diminished, so I was rash and took chances that I should never have taken
  • I blamed other people for not speaking in ways I could understand, and I had huge attitude that alienated important people, like my bosses
  • I didn’t realize I was thinking more slowly, so I got involved in activities that were far beyond my capabilities and totally screwed them up
  • I thought my temper problems were because of other people’s shortcomings, and I blamed them constantly for my emotional and mental turmoil, without even suspecting the problem was really with me

Now, years later and with a whole lot more information under my belt, I can clearly see that there were plenty of times when my life was made a lot more complicated by my cluelessness about my broken brain. The lives of others were not made easier, either. It’s as though there’s something in my brain that needs to believe it’s okay, it’s fine, it’s doing quite well, thank you very much, and it doesn’t need any extra help… even when things are going really badly.

I recently read a post at the Brain Injury Help Blog that talks about brain injuries in terms of losing a limb. That’s ironic… it was exactly what I was thinking about, last night, while I was writing in my journal… how my brain has been changed irreversibly by numerous injuries, and as a result, my life is not — cannot be — will not be — the same as it could have been, had I not been injured and re-injured and re-injured yet again. That oh-so-important organ sitting between my ears has been altered in ways I can often not even guess at, only find out about in the course of my trial-and-error life. As much as I’d like to believe that neuroplasticity can restore critical functionality and enable me to function in spite of my injuries, the fact remains that my brain is broken.

What’s done is done, I know. The capabilities I once had — and I can remember so fondly — from my youth… or even only a few years ago… haunt me like 100 meter dashes haunt a sprinter who’s lost the use of their legs. Once upon a time, I was a brilliant kid with a richly promising life ahead of me. Once upon a time, I was way ahead of my peers on math and geometry, and I could memorize whole books of the Bible in the space of a few weeks. Once upon a time, I was an avid go-getter who wasn’t afraid of much at all, when it came to new adventures.

Then came the attacks… the falls… the sports concussions. Then came the confusion, the agitation, the rage, the drinking and drugs and defiance of authority. My fondest dreams stopped being crystal clear, and I unconsciously started to “down-regulate” my dreams, confused and overwhelmed and ready to believe the advice of adults who warned me away from chasing after my hopes and dreams because something was amiss with me. They couldn’t quite put their finger on it and they could never fully explain it to me, but something wasn’t quite right. And nobody knew how to help me – or even if I could be helped.

I did manage to recover, over the years, and I recouped a fair amount of my functionality – in large part because I kept clear of the mainstream and made my own way in the world, on my own terms, sticking to the margins of society and keeping my own company. But even my own private world was not safe from TBI, and the pastimes and hobbies I loved so much, even my keen ability to learn new and innovative skills and technology fell prey to more head injuries.

I used to be able to focus on my work for hours at a time without tiring. I used to be able to read for long stretches, researching, absorbing, and then constructively using new information that put me at a competitive advantage in the workplace. I used to be able to go to the beach without anxiety, to read fiction, to keep my shit together when all hell was breaking loose around me.

Then came the car accidents. And the fall down the stairs in 2004.

Now I can’t concentrate on even things that fascinate me for more than 30 minutes at a time. My ability to grasp new information has been altered completely. I know I’m lagging behind my professional peers, but I feel completely unable to reverse my backward slide. I used to be able to go to the beach, body surf, boogie board, roam up and down long sandy surfside stretches without a care in the world. I used to read fiction voraciously. And I used to be THE go-to person for the hardest jobs that demanded the toughest nerves of steel.

No more.

Now, I feel as though I’ve been cut off at the knees of the one good leg I had left after my tumultuous childhood… as though pieces of my foot, then my ankle, then portions of my shin, then my knee… have all been hacked out from under me. And while I used to be able to hobble around reasonably well, now I’m reduced to worse than a limp. On bad days, I feel as though I’m pulling myself along on my elbows. On good days, I can still tell there’s something missing. Something that used to be there, but now isn’t. Maybe I will adapt, maybe the rest of my brain will adjust. Or maybe it won’t. All I know is, I used to be able to do things that meant the world to me, and now they’re gone. Perhaps for good.

What makes matters even worse is, my brain doesn’t always know it’s having trouble, and I get myself into trouble without knowing it. I overextend myself when I’m tired, not realizing how fatigued I am and blowing up at people around me over little things. I take on too many tasks and I get turned around, make a mess of the ones I try to complete and/or completely forget about others. Like John Byler talks about in his 6-part video series on YouTube “You Look Great! Inside a Traumatic Brain Injury“, recovering from a TBI — even over the long term — is often a matter of pushing the envelope to see how well you feel and how well you can deal… only to run up against your limits and be sent back to Square One… over and over and over again.

It’s almost like I have a “phantom brain”, like some amputees have phantom limbs. My body and personal life are both accustomed to living in a certain way, and they cannot seem to adjust to a life without the capabilities I once had. My personality is invested in being able to function in important areas, and it refuses to let go of the idea that I can’t… I just can’t… keep up the way I used to, go-go-go the way I used to, interact and hold my shit the way I used to. My personality still tends to think that I’m perfectly capable of diving into things head-first and whacking my way through the underbrush with a machete, and getting where I need to go in good time.

It doesn’t seem to realize that the edge of my blade got awfully dull, several miles back in the jungle. It just keeps happily hacking away, wondering why the underbrush has gotten so much thicker over time. And why it’s taking me so long to go just a few feet at a time.

The phenomenon of phantom limb syndrome is a fascinating one — and for those who suffer from it, absolutely maddening. There can be pain, an itch, some sort of discomfort, or the constant sense that the leg or arm or foot or hand is still where it always was, going through the motions of what it once did… as though nothing had ever happened. The pain can’t be stopped. The itch can’t be scratched. The discomfort is wholly out of reach, because it doesn’t exist on the physical plane.

In a way, my own brain — though it’s still very much atop my shoulders — does the same thing on a more subtle level. It thinks that it’s still a lot more clever than it is, that my body is a lot more resilient than it is, that I have the same capabilities that I did when I was 15, 16, 24, 34, 38. And it frankly refuses to believe evidence to the contrary… until all hell breaks loose and I wind up in hot water.

Yet again.

Now,I would never presume to know what it’s like to lose a leg, or an arm, or a foot, or even a finger. All my body parts — knock wood — are still attached the same way as before, and God willing, they’ll stay that way. But deep inside the neurons and axons and dendrites of my broken brain, something is unhinged, detached, torn, sheared (or is the word “shorn?”)

And it doesn’t fully realize it. In the moment, when it’s hard at work, my brain thinks it’s 100% functional… but the proof is often lacking… and my “phantom brain” is surprised, yet again, at how easily it’s foiled. Not to mention feeling foolish that it didn’t learn its lesson last time. Learning fast and well and thoroughly used to be “my thing”.

That may no longer hold true. Along with a thousand other little things I don’t realize. Until too late.

Off in the distance, I hear the sound of laughter… haunting laughter…